December 31, 2014
HAPPY NEW YEAR EVERYONE!! I hope the new year brings prosperity and health to all.
Kevin will no longer be on high does interleukin 2 treatments as they did not work for him. On to plan B, which is a chemo therapy drug, taken once a day, called sutent or sunitinib. Dr. George at Duke University Hospital believes the best course of action is sutent for 3 months with the hopes that it will shrink the tumors. If it shrinks it, but not enough, he can stay on it longer until it shrinks it more. Some people have been on this medication for years, keeping cancer in a "controlled" stage. Sutent has a 70% chance of keeping cancer in control, those aren't bad odds. Although a cure would be much better.
If it does shrink them, Kevin will be a candidate to have them removed either by surgery, ablation or gamma knife. Surgery should be able to be performed laparoscopically. Ablation is where they go into the tumor and burn the blood supply to the tumor, therefore killing it. Gamma knife is radiation therapy that focuses a bunch of beams of radiation on the tumor to kill it. It would be wonderful if that would happen and we could get rid of this cancer. Kidney cancer is quite tenacious!
I will start a new blog detailing his time on sutent.
Thanks for reading and following along with us :)
Wednesday 31 December 2014
Tuesday 23 December 2014
Post treatment appointment of Interleukin 2 treatments, the outcome
December 23, 2014
Well, the news wasn't what we wanted to hear. I really went in the doctors office yesterday full of hope, thinking we would never have to think about this stupid cancer again, but I guess hope isn't always enough. The treatments didn't work as well as it could have. But it's not all terrible. The good news, some of the spots shrunk a little and there is no evidence it is ANYWHERE else in his body, thank you Lord. Also, 3 of the spots (in the muscle by the pelvic, the right adrenal gland and where they clipped the kidney) are 1/4 of an inch and one spot (in the liver) is 1 inch, all very small. The bad news is, one of the spots grew from the last scan (the liver spot). And since the ones that shrunk; shrunk only a little, they said it's not likely another round of treatments will give him the cure we are wanting.
There maybe laparoscopic surgery to remove one spot, the one in the liver that grew. The liver has lobes, so removing a lobe is possible and relatively "easy", if you can use that word. There is also gama knife which goes into the tumor and burns it till it's dead. But with the gamma knife you have to be careful not to burn other organs that are close by. There is also something called ablation, where they kill the blood supply to the tumor and therefore kills the tumor. And there are also a few medications that have shown to keep these little tumors the same size they are now for many many years, kind of like a controlled cancer. Of course the best proven treatment for this cancer is surgery. The adrenal gland and spot where the kidney was cut off are really hard to do surgery on, only due to the amount of scar tissue people have after they remove a kidney. So that may not be an option, I'm not sure at this point. We are meeting with the head of the oncology department on Tuesday, December 30th to discuss our options and what he thinks is best. The doctor we spoke with yesterday is the head of the interleukin 2 department, so he specializes in only this treatment, not ALL treatments like the head of the oncology department does. We may get a different story next week, I'm not really sure. I've noticed that when you have a sickness that makes you see many different doctors, you get many different opinions.
So today I will be offline praying for internal peace in God's will, trying to find the silver lining. Sometimes it takes me a few days. I am sad today, but I can't sit around crying because I want my kids to see; what I should see (and will see eventually), that there is hope.
There maybe laparoscopic surgery to remove one spot, the one in the liver that grew. The liver has lobes, so removing a lobe is possible and relatively "easy", if you can use that word. There is also gama knife which goes into the tumor and burns it till it's dead. But with the gamma knife you have to be careful not to burn other organs that are close by. There is also something called ablation, where they kill the blood supply to the tumor and therefore kills the tumor. And there are also a few medications that have shown to keep these little tumors the same size they are now for many many years, kind of like a controlled cancer. Of course the best proven treatment for this cancer is surgery. The adrenal gland and spot where the kidney was cut off are really hard to do surgery on, only due to the amount of scar tissue people have after they remove a kidney. So that may not be an option, I'm not sure at this point. We are meeting with the head of the oncology department on Tuesday, December 30th to discuss our options and what he thinks is best. The doctor we spoke with yesterday is the head of the interleukin 2 department, so he specializes in only this treatment, not ALL treatments like the head of the oncology department does. We may get a different story next week, I'm not really sure. I've noticed that when you have a sickness that makes you see many different doctors, you get many different opinions.
So today I will be offline praying for internal peace in God's will, trying to find the silver lining. Sometimes it takes me a few days. I am sad today, but I can't sit around crying because I want my kids to see; what I should see (and will see eventually), that there is hope.
Thank you all for following our story, I hope this blog has helped some of you to understand what you, or a loved one, maybe facing. I will write more after we see the doctor next week.
xoxo
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| Captain Kevin, doing what he loves best. |
Saturday 6 December 2014
MERRY CHRISTMAS!!!
December 6, 2014
We have all of our Christmas decorations up! It's early for us this year, but we all needed a little Christmas spirit this Christmas season after the year we had.
Kevin is back at work for a week now. But he's been pretty tired. I don't know if it's still the interleukin 2 or just the stress of it all getting to him. But he made it through the week and I am proud of him. Today is Saturday and we are resting, well he is, I am running around trying to get a few more things up for Christmas.
This is Kevin's favorite Christmas decoration :) He loves the bumble from Rudolph the Red Nose Reindeer.
I want to wish everyone a VERY MERRY CHRISTMAS! HAPPY HOLIDAYS! AND A HAPPY NEW YEAR!!
Thank you all for reading :)
We have all of our Christmas decorations up! It's early for us this year, but we all needed a little Christmas spirit this Christmas season after the year we had.
Kevin is back at work for a week now. But he's been pretty tired. I don't know if it's still the interleukin 2 or just the stress of it all getting to him. But he made it through the week and I am proud of him. Today is Saturday and we are resting, well he is, I am running around trying to get a few more things up for Christmas.I want to wish everyone a VERY MERRY CHRISTMAS! HAPPY HOLIDAYS! AND A HAPPY NEW YEAR!!
Thank you all for reading :)
Monday 1 December 2014
Interleukin - 2 Back to work
December 1, 2014
Kevin went back to work today. He's been off since October 20, I'm sure his co-workers will be happy to see him again. He looks a little weak to me. He's still nauseated, which totally stinks! I wish that would go away for him. He's lost a little over 20 pounds. He's also still tired, but then again, we do have 2 boys keeping him busy. The other night we were both up because our youngest had a stomach virus, no rest for the weary, lol. I'm not quite sure he was ready to go back to work, but I'm sure he will be fine. His co-workers and job have been very good to him through all of this.
We are awaiting his scans on the 22nd of this month. Anxious, nervous, excited, and praying that it will have made a positive difference and that he can be one of the lucky ones who is cured.
Thank you all for sharing this journey with us! God bless you.
He made it through the whole day :) He's a real trooper!!
Kevin went back to work today. He's been off since October 20, I'm sure his co-workers will be happy to see him again. He looks a little weak to me. He's still nauseated, which totally stinks! I wish that would go away for him. He's lost a little over 20 pounds. He's also still tired, but then again, we do have 2 boys keeping him busy. The other night we were both up because our youngest had a stomach virus, no rest for the weary, lol. I'm not quite sure he was ready to go back to work, but I'm sure he will be fine. His co-workers and job have been very good to him through all of this.
We are awaiting his scans on the 22nd of this month. Anxious, nervous, excited, and praying that it will have made a positive difference and that he can be one of the lucky ones who is cured.
Thank you all for sharing this journey with us! God bless you.
He made it through the whole day :) He's a real trooper!!
Saturday 22 November 2014
Interleukin 2 - round 2 - Day 13
November 22, 2014
Things are going well, Kevin is improving slowly. His biggest complaint is that he has this annoying cough, it sounds like bronchitis, but he has no fever or other signs of bronchitis. He has been taking Nyquil to stop the coughing at night so he can sleep, but he's still very tired. He still has mild nausea and food tastes funny, but he is getting some tastes back. He's looking less sick as the days go on, I'm sure by the end of next week he will be back to himself. I am worried and excited about what the scans will show. I can see the doctor saying "your cancer is smaller, the treatment is working" so clearly. But that may just be that I really want to hear that. Needless to say, we are both pretty anxious.
Duke still hasn't resolved Kevin's short term disability issues. We've been trying to get this paper work done, and done correctly, since October 20th. Now we only have 10 days to get it straightened out or they can deny us. We've been leaving messages and emails with Kevin's doctors and no one has called us back. We are starting to run out of money! It's just one extra stress that we do not need. I didn't expect such a big hospital as Duke University Hospital to drop the ball on this. I have one more phone number I just found that I can try. Wish us luck!
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| Kevin at work before his leave to go for treatment. His co-workers filled his cubicle with balloons, they are very good to Kevin! |
Things are going well, Kevin is improving slowly. His biggest complaint is that he has this annoying cough, it sounds like bronchitis, but he has no fever or other signs of bronchitis. He has been taking Nyquil to stop the coughing at night so he can sleep, but he's still very tired. He still has mild nausea and food tastes funny, but he is getting some tastes back. He's looking less sick as the days go on, I'm sure by the end of next week he will be back to himself. I am worried and excited about what the scans will show. I can see the doctor saying "your cancer is smaller, the treatment is working" so clearly. But that may just be that I really want to hear that. Needless to say, we are both pretty anxious.
Duke still hasn't resolved Kevin's short term disability issues. We've been trying to get this paper work done, and done correctly, since October 20th. Now we only have 10 days to get it straightened out or they can deny us. We've been leaving messages and emails with Kevin's doctors and no one has called us back. We are starting to run out of money! It's just one extra stress that we do not need. I didn't expect such a big hospital as Duke University Hospital to drop the ball on this. I have one more phone number I just found that I can try. Wish us luck!
Thursday 20 November 2014
Interleukin 2 - Round 2 - Day 11
November 20, 2014
It's been a while since I've written, sorry about that. Been dealing with a bad back, but now I'm all better. Kevin is improving nicely. He is still very tired, things taste really funny to him too, his skin is still very dry and itchy and he's still kind of nauseated. But all his swelling is gone, his fever has been gone for a while now, his mouth thrush and canker sores have mostly healed, which is good. All and all he is doing well. I'm pretty sure he will need next week to completely recuperate since round too was a bit worse than round one. The side effects came on quickly and seem to last longer, we did read that this was a possibility and it's what is suppose to happen if the medication is working correctly.
On December 22 we go to Duke and Kevin will be scanned to see if IL-2 is working for him. I really am praying that it does, it would be really nice to have some good news for a change.
Unfortunately Duke messed up on Kevin's short term disability papers. We brought them in with us on October 20th, and the PA went on vacation for 10 days and never filled it out. Now I have nothing against anyone going on vacation at all, I think everyone needs to be on vacation and spend time with their family. But why didn't she give it to someone else to fill out? So we called again at the beginning of November, she still didn't fill it out. So we brought the disability papers with us, again, on November 10th when he went in for his second round and had her fill it out and fax it in. She did, but we got a call from Reed, the company that is handling the short term disability papers, that she filled it out incorrectly. So now it's 4 and a half weeks later and we have no short term disability set up. We are a tad bit worried about what we are going to do for money at this point. Kevin is stressed about the money, and he really doesn't need to be considering he is already stressed about his cancer returning.
Sorry for the rant, but I am a little peeved about this taking so long.
Thanks for your continued support and prayers, it means the world to us!
It's been a while since I've written, sorry about that. Been dealing with a bad back, but now I'm all better. Kevin is improving nicely. He is still very tired, things taste really funny to him too, his skin is still very dry and itchy and he's still kind of nauseated. But all his swelling is gone, his fever has been gone for a while now, his mouth thrush and canker sores have mostly healed, which is good. All and all he is doing well. I'm pretty sure he will need next week to completely recuperate since round too was a bit worse than round one. The side effects came on quickly and seem to last longer, we did read that this was a possibility and it's what is suppose to happen if the medication is working correctly.
On December 22 we go to Duke and Kevin will be scanned to see if IL-2 is working for him. I really am praying that it does, it would be really nice to have some good news for a change.
Unfortunately Duke messed up on Kevin's short term disability papers. We brought them in with us on October 20th, and the PA went on vacation for 10 days and never filled it out. Now I have nothing against anyone going on vacation at all, I think everyone needs to be on vacation and spend time with their family. But why didn't she give it to someone else to fill out? So we called again at the beginning of November, she still didn't fill it out. So we brought the disability papers with us, again, on November 10th when he went in for his second round and had her fill it out and fax it in. She did, but we got a call from Reed, the company that is handling the short term disability papers, that she filled it out incorrectly. So now it's 4 and a half weeks later and we have no short term disability set up. We are a tad bit worried about what we are going to do for money at this point. Kevin is stressed about the money, and he really doesn't need to be considering he is already stressed about his cancer returning.
Sorry for the rant, but I am a little peeved about this taking so long.
Thanks for your continued support and prayers, it means the world to us!
Friday 14 November 2014
Interleukin 2 - round 2 - Day 5 (photos of the therapy dogs that came to Duke! soooo cute)
November 14, 2014
Kevin was released from Duke today, yipppeeee. His creatinine levels went down to 2.8, still high but low enough for them to send him home safely. He needs to drink plenty of fluids and rest. He will certainly do that. He said it's good to be home and I agree with him.
He was able to handle 4 doses in total this time, all in a row, he didn't skip any. Not that skipping makes a difference, the docs say it doesn't effect how it works unless it's days in between a dose. So now worried there. His kidneys took the brunt of the blow this time around and just stopped working to their full capacity. But they are starting to recover now, he's using the bathroom so much he can't sleep through the night, lol.
It is true that the second round is worse than the first. I am quite sure he will need the full 2 weeks to recover. He has all the same symptoms as before, mild nausea, itchy skin, body aches and pains, his moth hurts from thrush as well as canker sores, and he is exhausted. These are all a bit worse than the last time, he has a new symptom as well, a dry flaky peeling type of skin. I think he will have to wait till that clears up before he can go into the hot tub, lol.
All and all he did great! I'm very proud of him. Now it's time to rest!
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| 11/14/2014 Duke Therapy Dogs, Misty |
He was able to handle 4 doses in total this time, all in a row, he didn't skip any. Not that skipping makes a difference, the docs say it doesn't effect how it works unless it's days in between a dose. So now worried there. His kidneys took the brunt of the blow this time around and just stopped working to their full capacity. But they are starting to recover now, he's using the bathroom so much he can't sleep through the night, lol.
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| 11/12/14 Duke Therapy Dog, Riley |
All and all he did great! I'm very proud of him. Now it's time to rest!
Thursday 13 November 2014
Interleukin 2 - round 2 - Day 4
Thursday November 13, 2014
Kevin's blood work from 4am today showed that his creatinine levels went from 4.2 to 3.8, which is good but it wasn't good enough for him to go home. He has to drink a lot of liquids today to help flush out the kidneys. He's going to the bathroom like crazy, lol.
His 4pm blood draw showed his creatinine levels went down from 3.8 to 3.2, which is awesome. Still not low enough to go home. They said that if tomorrow's 4am blood draw shows that it's gone down to below 3 and in the 2's he will be able to go home to recuperate. Since it dropped down .6 in 12 hours, I'm pretty sure the next draw will show that it dropped into the 2's. At least I hope so, I'd hate for him to have to stay there another night, although he would to be safe.
I am home right now because I had family emergency to take care of. Kevin is doing pretty well actually. Today he got up, got dressed and walked to the cafeteria. He was completely exhausted after by the time he got back to his room, but we expected that. He's mobile so I don't feel all that terrible that he's alone. He said he had some movies on his laptop that he could watch, so that'll keep him busy.
I hope we both get a decent nights sleep and that he can come home tomorrow. The scans are on the 22nd of December to see if this treatment is working. Please pray that it's working for him, that's all I ask.
Thank you for reading!!
Kevin's blood work from 4am today showed that his creatinine levels went from 4.2 to 3.8, which is good but it wasn't good enough for him to go home. He has to drink a lot of liquids today to help flush out the kidneys. He's going to the bathroom like crazy, lol.
His 4pm blood draw showed his creatinine levels went down from 3.8 to 3.2, which is awesome. Still not low enough to go home. They said that if tomorrow's 4am blood draw shows that it's gone down to below 3 and in the 2's he will be able to go home to recuperate. Since it dropped down .6 in 12 hours, I'm pretty sure the next draw will show that it dropped into the 2's. At least I hope so, I'd hate for him to have to stay there another night, although he would to be safe.
I am home right now because I had family emergency to take care of. Kevin is doing pretty well actually. Today he got up, got dressed and walked to the cafeteria. He was completely exhausted after by the time he got back to his room, but we expected that. He's mobile so I don't feel all that terrible that he's alone. He said he had some movies on his laptop that he could watch, so that'll keep him busy.
I hope we both get a decent nights sleep and that he can come home tomorrow. The scans are on the 22nd of December to see if this treatment is working. Please pray that it's working for him, that's all I ask.
Thank you for reading!!
Wednesday 12 November 2014
Interleukin 2 - round 2 - Day 3
November 12, 2014, our stay at Duke University Cancer Center
Yesterday Kevin's creatinine levels were high, so they decided to skip dose 5 and have his levels rechecked in the am. Today his levels were at 3.9, which is above the cutoff of what they consider safe for someone with only one kidney. The doctors said that his body has told him he's had enough, so they are stopping the treatment. This is considered normal, and that some people can't even handle 2 doses the second time around. One of the PA's even said that she worries about people who don't have any reactions because this treatment is meant to have a quicker reaction as you progress, it shows that the immune system is indeed boosted. Because the body reacts quicker the second time around, most people only do about half of what they did the first time. Kevin did 9, so the doctor thought this time he would get to 4 or 5 and he made it to 4, he did awesome.
We are going home either today or tomorrow. They need to keep him in for observation and to make sure his levels get back to something more acceptable. They said they are going to recheck his levels later on today, and if they are more normal, we can go home. If not, they will most likely keep him over night until tomorrow morning when they recheck all his levels again.
Last night we were able to get some sleep, well Kevin's has been pretty much sleeping since his first dose. So at least if we have to stay over night we will be able to get some sleep or as much sleep as one can get in the hospital.
Thanks for reading :)
Yesterday Kevin's creatinine levels were high, so they decided to skip dose 5 and have his levels rechecked in the am. Today his levels were at 3.9, which is above the cutoff of what they consider safe for someone with only one kidney. The doctors said that his body has told him he's had enough, so they are stopping the treatment. This is considered normal, and that some people can't even handle 2 doses the second time around. One of the PA's even said that she worries about people who don't have any reactions because this treatment is meant to have a quicker reaction as you progress, it shows that the immune system is indeed boosted. Because the body reacts quicker the second time around, most people only do about half of what they did the first time. Kevin did 9, so the doctor thought this time he would get to 4 or 5 and he made it to 4, he did awesome.
Last night we were able to get some sleep, well Kevin's has been pretty much sleeping since his first dose. So at least if we have to stay over night we will be able to get some sleep or as much sleep as one can get in the hospital.
Thanks for reading :)
Tuesday 11 November 2014
Interleukin 2 - Round 2 - Day 2
November 11, 2014
Today Kevin had his second, third and fourth doses. His symptoms came on much quicker than last time. His nausea is much worse so they have him on quite a few different anti-nausea meds which make him sleepy. So he is in a somewhat catatonic state right now and has been for most of the day. He keeps saying "I'm trying to wake up" and I keep saying "just sleep through it, it's o.k.". But I guess our subconscious wants to be awake.
His rigors are well controlled by giving him morphine prior to getting them. So this dose, I am going to have the nurse come in and give him anti-nausea around the time he get's nauseous. Hopefully that will work to keep the nausea at bay so he can get some rest.
His last blood work showed that his creatinine levels, which shows kidney function, are pretty high. They are at 2.3, and the cut off for being allowed to continue is 2.5. They decided that he would get the fourth dose today at 6 pm, but they will skip the 2 am dose to allow his body to get back to a more normal state. Maybe we can get a little sleep tonight. They will retest his blood tomorrow morning and if his levels are lower, he can then have the 10 am dose which would be dose 5. If not, I'm not sure what the protocol would be.
Thanks for reading.
Today Kevin had his second, third and fourth doses. His symptoms came on much quicker than last time. His nausea is much worse so they have him on quite a few different anti-nausea meds which make him sleepy. So he is in a somewhat catatonic state right now and has been for most of the day. He keeps saying "I'm trying to wake up" and I keep saying "just sleep through it, it's o.k.". But I guess our subconscious wants to be awake.
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| Kevin, not very happy today. |
His last blood work showed that his creatinine levels, which shows kidney function, are pretty high. They are at 2.3, and the cut off for being allowed to continue is 2.5. They decided that he would get the fourth dose today at 6 pm, but they will skip the 2 am dose to allow his body to get back to a more normal state. Maybe we can get a little sleep tonight. They will retest his blood tomorrow morning and if his levels are lower, he can then have the 10 am dose which would be dose 5. If not, I'm not sure what the protocol would be.
Thanks for reading.
Monday 10 November 2014
Interleukin 2 - round 2 - Day 1
Monday November 10, 2014
We got here today around 10 am and Kevin had his blood drawn. His blood work was good so he was ready to get his treatments. Physically that is, not mentally. This time around he had a lot of anxiety so they gave him some anti-anxiety meds to make him more comfortable. We met with the PA and then we checked into our room at about 1 pm. The last time and this time his creatinine levels were at 1.5, which is pretty good. His norm had been 1.8 so we are happy it trended down a bit. A person without any renal issues is about 0.9.
Kevin had his first dose of IL-2 today at about 7 pm. We used the same "preemptive strike" of giving him the morphine before the rigors started. It seemed to work well, he didn't get any rigors. But he did get quite nauseated and vomited quite a bit. Not unexpected with this treatment. The last time he vomited with the first dose too, so hopefully it will be the same this time around and he won't throw up too much more.
The nurses are so very quick here at getting him his meds. it's wonderful. They brought him in some compazine and administered it into his PICC IV and he started to feel a bit better. He is now sleeping. He told me that he thought the rigors were starting, but then fell asleep without shaking. But the nurse said it was a good idea to give him some more morphine just in case.
He really disliked being nauseous, I don't blame him, I pretty much hate that feeling too.
Thank you all for reading. I'll keep you posted tomorrow on how his other doses go.
Kevin had his first dose of IL-2 today at about 7 pm. We used the same "preemptive strike" of giving him the morphine before the rigors started. It seemed to work well, he didn't get any rigors. But he did get quite nauseated and vomited quite a bit. Not unexpected with this treatment. The last time he vomited with the first dose too, so hopefully it will be the same this time around and he won't throw up too much more.
The nurses are so very quick here at getting him his meds. it's wonderful. They brought him in some compazine and administered it into his PICC IV and he started to feel a bit better. He is now sleeping. He told me that he thought the rigors were starting, but then fell asleep without shaking. But the nurse said it was a good idea to give him some more morphine just in case.
He really disliked being nauseous, I don't blame him, I pretty much hate that feeling too.
Thank you all for reading. I'll keep you posted tomorrow on how his other doses go.
Sunday 9 November 2014
Interleukin 2 - round 2 - Day 0
Today is Sunday November 9, 2014 and tomorrow my husband, Kevin Flynn, goes in for his second round of IL-2 treatment. He will be scanned around the 15th of December to see if this treatment is working for him. We are praying for a cure!
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I know Kevin will be annoyed with me for writing this, but I will anyway. A lot of you may not know this, but Kevin was involved in the 9-11. Not as a first responder, but as a worker. His cancer is a world trade center related cancer. Kevin has ALWAYS been a hero in many ways. The fact that I write this is what will make him mad because he feels "there were many hero's that day" and I think he feels this acknowledgement may take the credit away from others. It doesn't by any means.
Of course the fire fighters and other first responders are the greatest hero's and give their lives daily to help serve and protect. But in my mind, Kevin is a hero because when he was getting ready to leave NY that day to come home to me and his baby when he saw that some women had fainted. He stopped, threw one at a time over his shoulder, and brought them to an ambulance, thus saving their lives. When others were running away from the towers, he ran towards them to help. I think that hero's have that natural tendency to put the well being of others over their own well being, it just happens naturally. Most people have a natural self survival reaction when they see danger, it's to run. But he didn't run that day.
At the time we lived in a two family house in Suffern, NY and the tenants who lived below us also worked with Kevin. I can remember them coming home and I was standing on the driveway with Jack, who wasn't even one year old yet, trying to look past them thinking "where is Kevin!! Why didn't he come home with them!?!?" They usually would come home at the same time since they all took the train into New York City. When I asked them if they knew where he was, they looked at me, clearly shaken up and distraught and said "knowing Kevin, he's probably building a ladder to save those people". And that sums it all up about the type of hero my husband is. And now he will be a hero once again in his fight against renal cell carcinoma!
Of course the fire fighters and other first responders are the greatest hero's and give their lives daily to help serve and protect. But in my mind, Kevin is a hero because when he was getting ready to leave NY that day to come home to me and his baby when he saw that some women had fainted. He stopped, threw one at a time over his shoulder, and brought them to an ambulance, thus saving their lives. When others were running away from the towers, he ran towards them to help. I think that hero's have that natural tendency to put the well being of others over their own well being, it just happens naturally. Most people have a natural self survival reaction when they see danger, it's to run. But he didn't run that day.
At the time we lived in a two family house in Suffern, NY and the tenants who lived below us also worked with Kevin. I can remember them coming home and I was standing on the driveway with Jack, who wasn't even one year old yet, trying to look past them thinking "where is Kevin!! Why didn't he come home with them!?!?" They usually would come home at the same time since they all took the train into New York City. When I asked them if they knew where he was, they looked at me, clearly shaken up and distraught and said "knowing Kevin, he's probably building a ladder to save those people". And that sums it all up about the type of hero my husband is. And now he will be a hero once again in his fight against renal cell carcinoma!
Please pray with me that this treatment will be his cure! xoxoxo
If you have any questions, please feel free to post them at the bottom. I will do my best to answer any that you have. I am not a medical professional, but I can give you answers to what I know as a care giver.
Saturday 1 November 2014
Day 13 of Interleukin 2 treatments
November 1, 2014
It's been 8 days since Kevin's 9th and final dose of IL-2. His next round is November 10th, then he's scanned. If there is improvement, he will have 2 more rounds at the beginning of January.
Everything is going as it has been, slowly recovering, but doing pretty good. He's still fatigued and naps a lot, but he's really getting a bit better everyday. One odd thing he has been saying is that food tastes bad. He has to over season it to get any taste at all. I think this is a common side effect. I wonder if it could be that his mouth is still healing from the thrush and canker sores?
I think the idea of going for his next treatment on November 10th is weighing on his mind. If he get's a second round, we may take 3 weeks in between. We do have a choice, so that's nice. But for now, we can't really change the next upcoming date. We have 2 children, 14 and 11, and they need to have someone stay with them when we are at Duke. A good friend of mine has taken off of work to stay with them and drive them to school. So we really can't change this date. Let's all pray that he will be ready to go and that this up coming week will bring major healing for him.
Thanks for reading :)
It's been 8 days since Kevin's 9th and final dose of IL-2. His next round is November 10th, then he's scanned. If there is improvement, he will have 2 more rounds at the beginning of January.
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| Kevin with our Halloween pumpkin |
Everything is going as it has been, slowly recovering, but doing pretty good. He's still fatigued and naps a lot, but he's really getting a bit better everyday. One odd thing he has been saying is that food tastes bad. He has to over season it to get any taste at all. I think this is a common side effect. I wonder if it could be that his mouth is still healing from the thrush and canker sores?
I think the idea of going for his next treatment on November 10th is weighing on his mind. If he get's a second round, we may take 3 weeks in between. We do have a choice, so that's nice. But for now, we can't really change the next upcoming date. We have 2 children, 14 and 11, and they need to have someone stay with them when we are at Duke. A good friend of mine has taken off of work to stay with them and drive them to school. So we really can't change this date. Let's all pray that he will be ready to go and that this up coming week will bring major healing for him.
Thanks for reading :)
Friday 31 October 2014
Day 12 of interleukin 2 treatments
October 31, 2014
It's been 7 days since Kevin's 9th and final dose of IL-2, for this round at least. He has another round to go, then scans to see if it's working.
He is still getting a little better everyday. He was able to take some niquil last night to combat the mild wheezing he has, and the runny nose. They were keeping him up and he couldn't get a good nights sleep. It worked well for him, he slept through the night until about 9am this morning. I hope that today will be a good day for him since he slept better :)
Happy Halloween everyone! We will be going to my in-laws for trick or treating with our kids. Where we live, it's very country and we may get 2 kids looking for some candy, if we are lucky. I don't think Kevin is up to walking house to house with us, so I'll just take our youngest. Our oldest is "too old" to trick or treat anymore :( I guess they all have to grow up.
Thanks for reading and stay safe tonight!!
Here is an old photo of Kevin and I in Jamaica. He was complaining about something and I was doing "boo hoo" and rubbing his eyes, hee hee. He does that too me all the time, so it was payback, lol. I think this was from the mid 90's. Love this pic!
It's been 7 days since Kevin's 9th and final dose of IL-2, for this round at least. He has another round to go, then scans to see if it's working.
He is still getting a little better everyday. He was able to take some niquil last night to combat the mild wheezing he has, and the runny nose. They were keeping him up and he couldn't get a good nights sleep. It worked well for him, he slept through the night until about 9am this morning. I hope that today will be a good day for him since he slept better :)
Happy Halloween everyone! We will be going to my in-laws for trick or treating with our kids. Where we live, it's very country and we may get 2 kids looking for some candy, if we are lucky. I don't think Kevin is up to walking house to house with us, so I'll just take our youngest. Our oldest is "too old" to trick or treat anymore :( I guess they all have to grow up.
Thanks for reading and stay safe tonight!!
Thursday 30 October 2014
Day 11 of interleukin 2 treatments
October 30, 2014
It's been 6 days since Kevin's 9th and final dose of IL-2. His next round is November 10th, then he's scanned. If there is improvement, he will have 2 more rounds at the beginning of January.
Today Kevin went into the hot tub for a little bit, he was worried about the rash he had from the treatments, but the hot tub didn't bother it too much. All is all, everyday get's a little better for him. His side effects are slowly going away, this is not a quick recovery. Although, as I mentioned in other posts, the major side effect go away quickly, it's the little lingering ones that seem to last. Last night he slept pretty well, the wheezing is almost gone. The doctor said he could try an allergy pill, or he can take Nyquil at night. That's Kevin's go too drug when he's not feeling good, so he may just try that.
Yesterday, Kevin made us all dinner. He likes to cook, so this was good for him. He made chicken quesadillas, they were very yummy. Our boys loved them too, which goes to show you they must have been delicious, lol.
Not much else to write about :) I'll keep writing until about day 14, then everyone will get a good idea of what to expect. Thanks for reading :)
It's been 6 days since Kevin's 9th and final dose of IL-2. His next round is November 10th, then he's scanned. If there is improvement, he will have 2 more rounds at the beginning of January.
Today Kevin went into the hot tub for a little bit, he was worried about the rash he had from the treatments, but the hot tub didn't bother it too much. All is all, everyday get's a little better for him. His side effects are slowly going away, this is not a quick recovery. Although, as I mentioned in other posts, the major side effect go away quickly, it's the little lingering ones that seem to last. Last night he slept pretty well, the wheezing is almost gone. The doctor said he could try an allergy pill, or he can take Nyquil at night. That's Kevin's go too drug when he's not feeling good, so he may just try that.
Yesterday, Kevin made us all dinner. He likes to cook, so this was good for him. He made chicken quesadillas, they were very yummy. Our boys loved them too, which goes to show you they must have been delicious, lol.
Not much else to write about :) I'll keep writing until about day 14, then everyone will get a good idea of what to expect. Thanks for reading :)
Wednesday 29 October 2014
Day 10 of interleukin 2 treatments
October 29, 2014
It's been 5 days since Kevin's 9th and final dose of IL-2, for this round at least. He has another round to go, then scans to see if it's working.
He is feeling about the same, a tiny bit better. It seems he get's a little more energy everyday. He went out shopping with me and walked quite a bit today. Then he slept for 2 hours, lol. But that seems to be the way it goes. Tomorrow I bet he'll be extra tired from today's gallivanting.
Yesterday he developed a sinus drip, which is another common side effect. He's still wheezing at night, I tried cleaning all the dust and dog hair to see if it would help, but it didn't. Kevin used to have allergies and asthma as a child, so I thought perhaps the histamines in his body where super loaded like his white blood cells. And therefore, they are making him have a sinus drip and a little wheeze. He's waiting a call back from his doctor to see if he could possibly take an anti-histamine.
Not much more to write, which is good news :) Thanks for reading
It's been 5 days since Kevin's 9th and final dose of IL-2, for this round at least. He has another round to go, then scans to see if it's working.
He is feeling about the same, a tiny bit better. It seems he get's a little more energy everyday. He went out shopping with me and walked quite a bit today. Then he slept for 2 hours, lol. But that seems to be the way it goes. Tomorrow I bet he'll be extra tired from today's gallivanting.
Yesterday he developed a sinus drip, which is another common side effect. He's still wheezing at night, I tried cleaning all the dust and dog hair to see if it would help, but it didn't. Kevin used to have allergies and asthma as a child, so I thought perhaps the histamines in his body where super loaded like his white blood cells. And therefore, they are making him have a sinus drip and a little wheeze. He's waiting a call back from his doctor to see if he could possibly take an anti-histamine.
Not much more to write, which is good news :) Thanks for reading
Tuesday 28 October 2014
Day 9 of Interleukin 2 treatments
October 28, 2014
It's been 5 days since Kevin's 9th and final dose of IL-2, for this round at least. He has another round to go, then scans to see if it's working.
He seems a tiny bit better today, everyday get's a tiny bit better. He isn't on the anti-nausea anymore, but still has bouts of discomfort from being nauseated, they go away on their own. He's still taking the cipro (antibiotic), he has to take it until Saturday morning. Cipro is to make sure he doesn't get an infection from the PICC line they put in to administer the meds. In my opinion, the nausea is caused from the cipro, he isn't eating as much as he used to, and taking cipro on an empty stomach isn't the best. But he is eating a little bit more each day, which is good. If you like to eat yogurt, which Kevin doesn't, it would be a good idea to eat as much as you can. This will help with the side effects of cipro and what it does to the gastrointestinal tract.
He's sleeping less then he was during the day, which is good. Last night he didn't have as many bouts of coughing, so he pretty much slept through the night. Thank the Lord for that, lol. Not sure I could handle another night of being up for hours on end. I hadn't slept through the night in 7 days. I shouldn't complain, after all he is going through. But I did anyway, lol.
He told me that he seems to wheeze more when he's lying down in bed. But not when he's lying down in the recliner. Could be that the recliner is still on an angle OR it could be that we have dogs and the bedroom needs a good cleaning. I will get rid of all the dust and dog hair today and see if this helps.
Kevin just told me that he's had these vivid dreams since last week, when the treatment started. He also said he had these weird type of "hallucinations" for lack of a better word. They would happen when he would close his eyes, and he'd open them quickly because he thought someone was there. I didn't notice him acting odd, but I thought it was something noteworthy.
All in all, things are getting better :) Thank you for reading!
It's been 5 days since Kevin's 9th and final dose of IL-2, for this round at least. He has another round to go, then scans to see if it's working.
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| Kevin |
He's sleeping less then he was during the day, which is good. Last night he didn't have as many bouts of coughing, so he pretty much slept through the night. Thank the Lord for that, lol. Not sure I could handle another night of being up for hours on end. I hadn't slept through the night in 7 days. I shouldn't complain, after all he is going through. But I did anyway, lol.
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| Kevin with Nicky and Moose |
Kevin just told me that he's had these vivid dreams since last week, when the treatment started. He also said he had these weird type of "hallucinations" for lack of a better word. They would happen when he would close his eyes, and he'd open them quickly because he thought someone was there. I didn't notice him acting odd, but I thought it was something noteworthy.
All in all, things are getting better :) Thank you for reading!
Monday 27 October 2014
Day 8 of interleukin 2 treatments
Monday October 27, 2014
It's been 4 days since Kevin had his 9th and last dose of IL-2. He's doing a tiny bit better today, a tiny bit. He's still very tired, his mouth sores are starting to get a little better too. He's lost almost all of the water weight he gained as a side effect of IL-2, all but 4 pounds. He was able to eat a bit last night, more than other nights. He tries to do a few small meals, because his stomach can't handle a big one, it makes him nauseated. He's still taking the anti-nausea meds and he's still taking cipro (antibiotic). His skin got a little irritated, but not like some of the stories we heard about flaky peeling skin. It was more red and itchy, and most of the redness is gone now, so at least that's one good thing.
Today we went for a ride. Sounds funny to say that, because he's an adult, lol, but this is a big milestone for someone going through chemo. I had to go to Lowes to get salt for the water softener, and he decided he'd come along. He even went inside. I only had the one thing to get, so it was a quick trip. It took everything out of him though, so now he's sleeping. But that's o.k. because I was happy that he WANTED to go. I think that's a good sign that he maybe in an upward direction to getting better. Slowly but surely. Then the poor guy has to do it all again November 10th. He said "I don't want to talk about the next time, I just want to get through this time." Fair enough. It's not an easy journey, but I sure hope we get some excellent news when he's scanned. He is supposed to have his scans December 15th or so. We don't have any set date for that, but somewhere in that area. Then about January 5th he will have his next round of treatments which will be one week on, 2 weeks off, one week on, then a re-scan 5 weeks later.
If the first set of scans show that there was no improvement, then he won't have the second round of IL-2. If that's the case, there is another type of meds he can take that has good results in keeping the cancer the same size, sort of like a "controlled cancer". I believe that one is called sutent, although there maybe a few different ones for that. I'll write more about that in another blog IF we need it. I am asking all to pray that we won't need any other meds and that IL-2 will be his cure.
Thank you for reading :)
It's been 4 days since Kevin had his 9th and last dose of IL-2. He's doing a tiny bit better today, a tiny bit. He's still very tired, his mouth sores are starting to get a little better too. He's lost almost all of the water weight he gained as a side effect of IL-2, all but 4 pounds. He was able to eat a bit last night, more than other nights. He tries to do a few small meals, because his stomach can't handle a big one, it makes him nauseated. He's still taking the anti-nausea meds and he's still taking cipro (antibiotic). His skin got a little irritated, but not like some of the stories we heard about flaky peeling skin. It was more red and itchy, and most of the redness is gone now, so at least that's one good thing.
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| Kevin, before our drive today |
If the first set of scans show that there was no improvement, then he won't have the second round of IL-2. If that's the case, there is another type of meds he can take that has good results in keeping the cancer the same size, sort of like a "controlled cancer". I believe that one is called sutent, although there maybe a few different ones for that. I'll write more about that in another blog IF we need it. I am asking all to pray that we won't need any other meds and that IL-2 will be his cure.
Thank you for reading :)
Sunday 26 October 2014
Day 7, Interleukin 2 treatments
Sunday, October 26, 2014
Kevin started his interleukin 2 treatments on the 20th, they ended on the 24th. He still has a cough, and some mild wheezing. The wheezing seems to be mostly when he lies down. His skin itches, but it isn't bad enough to take anything for it. He's been nauseated, so he took some anti-nausea meds which worked. His mouth hurts a lot from the sores, and he isn't really hungry. He eats a little and very soft food. He's still very tired and getting a bit cranky about it all. I think he just wishes he was better, but IL-2 takes a lot out of you.
I will keep updating everyone until he is back to himself. I am writing this blog so others will know what to expect. Although, everyone is different, I think these side effects hit most people. Feel free to read the other blogs about the day by day side effects and everything he went through.
I also wanted to say that the Nurses at Duke University Hospital in Durham, on the 9100 level, were pretty amazing. I am sure the other nurses are amazing too. They were fast, caring, courteous and didn't mind at all if you asked questions. I have been in hospitals before where the nurses and doctors got annoyed for asking questions. That is not the case here, they encourage it.
Thanks for reading :)
Kevin started his interleukin 2 treatments on the 20th, they ended on the 24th. He still has a cough, and some mild wheezing. The wheezing seems to be mostly when he lies down. His skin itches, but it isn't bad enough to take anything for it. He's been nauseated, so he took some anti-nausea meds which worked. His mouth hurts a lot from the sores, and he isn't really hungry. He eats a little and very soft food. He's still very tired and getting a bit cranky about it all. I think he just wishes he was better, but IL-2 takes a lot out of you.
I will keep updating everyone until he is back to himself. I am writing this blog so others will know what to expect. Although, everyone is different, I think these side effects hit most people. Feel free to read the other blogs about the day by day side effects and everything he went through.
I also wanted to say that the Nurses at Duke University Hospital in Durham, on the 9100 level, were pretty amazing. I am sure the other nurses are amazing too. They were fast, caring, courteous and didn't mind at all if you asked questions. I have been in hospitals before where the nurses and doctors got annoyed for asking questions. That is not the case here, they encourage it.
Thanks for reading :)
Saturday 25 October 2014
Day 6 of now Post Interleukin 2 treatments
Saturday, October 25, 2014
We are home now, we made it home last night at about 6pm. They prescribed Lasix, cipro (antibiotic), Nystatin for the thrush and nausea meds. His blood pressure and pulse are back to normal, so his body is getting back to normal. But he still feels like he has the flu. He has muscle aches, bone aches and pain in his mouth from the thrush. Compared to when he was in the hospital, he is doing better, but still feels like he has the flu. They say that just as fast as the symptoms come on, they will go away. It is true, except for some remaining flu like symptoms. His thrush is mostly gone, but now he has mouth sores. We are using salt water and baking soda combo recipe: 1 cup warm water, 1/4 tsp baking soda, 1/8 tsp salt, swish and spit. Unfortunately it tastes bad and it made him gag and vomit. So I think we will have to stop that.
He's developed wheezing tonight. I think I will need to call the doctor tomorrow. He's also been getting itchy skin. We have meds for that called gabapentin, hopefully they will work.
He has lost about 5 pounds of water weight, which is good. He took Lasix to take some of the water weight off that he put on. It's doing the trick.
Here is an older picture of us at our wedding, as you could probably tell since I'm wearing a wedding dress, lol. The other one is about 5 years ago, of Kevin on Lake Norman, NC, where we live. Just thought I'd share.
We are home now, we made it home last night at about 6pm. They prescribed Lasix, cipro (antibiotic), Nystatin for the thrush and nausea meds. His blood pressure and pulse are back to normal, so his body is getting back to normal. But he still feels like he has the flu. He has muscle aches, bone aches and pain in his mouth from the thrush. Compared to when he was in the hospital, he is doing better, but still feels like he has the flu. They say that just as fast as the symptoms come on, they will go away. It is true, except for some remaining flu like symptoms. His thrush is mostly gone, but now he has mouth sores. We are using salt water and baking soda combo recipe: 1 cup warm water, 1/4 tsp baking soda, 1/8 tsp salt, swish and spit. Unfortunately it tastes bad and it made him gag and vomit. So I think we will have to stop that.
He's developed wheezing tonight. I think I will need to call the doctor tomorrow. He's also been getting itchy skin. We have meds for that called gabapentin, hopefully they will work.
He has lost about 5 pounds of water weight, which is good. He took Lasix to take some of the water weight off that he put on. It's doing the trick.
Here is an older picture of us at our wedding, as you could probably tell since I'm wearing a wedding dress, lol. The other one is about 5 years ago, of Kevin on Lake Norman, NC, where we live. Just thought I'd share.
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| Kevin and I 8/22/97 |
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| Cruising Lake Norman Summer 2009 |
Friday 24 October 2014
Day 5 of Interleukin 2 treatments, and our last day
Friday, October 24, 2014
We are going home today! He needs some electrolyte supplements first, which take about 3 hours to drip, then we can hit the road for our long drive home. Just in case, we will pack a plastic bucket and plastic bag, he may get nauseated. They said they will also give him prophylactic meds for nausea.
Kevin received 9 doses all together and then he hit the proverbial wall, as they say. The doctors say he looks great for what his body went through. They all said the amount of doses you can take doesn't actually effect the efficacy of the treatment, but he did do the average amount that most can handle. I am very proud of him to say the least.
He is still feeling pretty bad today, better than during the treatment, but still feels like he has the flu. At this time, 10am, it's been 15 hours since his last and final dose. He is sleeping a lot, and has mild nausea from eating breakfast. His fever is gone, but his pulse is still high, about 100. His blood pressure is getting back to normal. During treatments it was down to 90/50. They say the side effects will last for a few days and up to 2 weeks. I will continue to write about his post treatments side effects.
What I learned, from a caregivers perspective:
When Kevin is feeling better, I will have him write a blog about interleukin 2 treatments from his perspective.
Thank you for reading
We are going home today! He needs some electrolyte supplements first, which take about 3 hours to drip, then we can hit the road for our long drive home. Just in case, we will pack a plastic bucket and plastic bag, he may get nauseated. They said they will also give him prophylactic meds for nausea.
Kevin received 9 doses all together and then he hit the proverbial wall, as they say. The doctors say he looks great for what his body went through. They all said the amount of doses you can take doesn't actually effect the efficacy of the treatment, but he did do the average amount that most can handle. I am very proud of him to say the least.
What I learned, from a caregivers perspective:
- Get ahead of any side effects. As soon as you feel anything, tell the nurse.
- Don't be afraid to push the call button for the nurse, they actually feel better if you do.
- This treatment is quite rough on the body, and you will feel pretty bad. When they say "you will feel like you have the worst flu you ever had" they aren't kidding.
- Listen to your body, if it say's to stop, then you should stop. More isn't better.
- Take a deep breath every now and again, regroup, and use whatever support system you have in order to get through this. My spiritual support system is, and has always been, God. My physical support system is my family and friends. Without this, I would not be able to get through this.
- Bring a laptop, tablet, or books. You will have a few hours stretch with nothing to do, well not nothing, the nurses do come in every half our or so. So after you shower, eat, you'll have time to read, play your favorite games, OR start a blog, lol.
- Pick the best cancer hospital you can. A staff that is well educated on cancer treatments will make a big difference in how they handle your care.
- Bring a pair of sweat pants, or lose pants. The person who is receiving this treatment can gain up to 20 pounds in water weight, Kevin gained 11. The jeans he came in with will not fit.
- Bring a robe from home, they will want you to walk the halls and its easier to cover your bum that way :)
- Do the saline rinse, even though it tastes horrible, the moth sores will be worse than the saline rinse. That goes the same for the nystatin rinse for thrush (yeast infection in the mouth), it tastes bad, but it does a good job of healing thrush.
When Kevin is feeling better, I will have him write a blog about interleukin 2 treatments from his perspective.
Thank you for reading
Thursday 23 October 2014
Day 4, interleukin 2 treatments. We are getting close to the end of treatments.
Thursday, October 24, 2014
I must say, this week is going pretty quickly, although Kevin may not agree, lol. Kevin's 7pm treatment was given on Wed evening, it was his 6th treatment. The reaction was the same as the others, I see a pattern here lol. He did need 2 doses of morphine, which the nurses gladly gave him. His 2am treatment, the 7th, went pretty much the same way, except his rigors took 3 hours to start. I feel like a puma waiting for prey after he gets his treatments. Except I'm waiting for rigors, not prey :) So far he didn't get the usual rash/itchy/dry skin that can be common with IL-2.
At around 8am, Kevin was saying he doesn't think he can go on with this treatment, and that this dose may be the last. I spoke to him and told him to take it dose by dose, that is the best way to handle it. And I told him if he can't do anymore, then that is totally fine since he had the average doses of what most can handle. So he's decided to go ahead and take the 10am (8th) dose. He's a real trooper. The doctor said "make sure you listen to your body, when it says stop it's o.k. to stop. Too much isn't better when it comes to IL-2" Words of wisdom I thought I'd share with you.
Noteworthy info: Kevin has bad rigors, they are his one big complaint, lots of other complaints too since this is indeed a butt kicking drug. So the nurse today said "why don't we give him the morphine at the time he usually get's the rigors or a half our before and cut it off at the pass?" His rigors are almost the same time, 2 hours after the treatment is started. So we did that and it worked GREAT. Until Kevin was feeling so well he got up to use the bathroom and wanted to go for a walk. Not a good idea, hee hee. The rigors started and he had to get to bed and have another dose of morphine. But they did go away very quickly. So I think that is what we will do the next time, and for the second round of IL-2.
He took the 6pm dose (9th), but said he didn't want the 2am dose. For some reason that dose is the hardest on his body. I'm not sure why. His 9th dose was given and the morphine was done the same, before the rigors. It seems to be working great for him :)
I must say, this week is going pretty quickly, although Kevin may not agree, lol. Kevin's 7pm treatment was given on Wed evening, it was his 6th treatment. The reaction was the same as the others, I see a pattern here lol. He did need 2 doses of morphine, which the nurses gladly gave him. His 2am treatment, the 7th, went pretty much the same way, except his rigors took 3 hours to start. I feel like a puma waiting for prey after he gets his treatments. Except I'm waiting for rigors, not prey :) So far he didn't get the usual rash/itchy/dry skin that can be common with IL-2.
At around 8am, Kevin was saying he doesn't think he can go on with this treatment, and that this dose may be the last. I spoke to him and told him to take it dose by dose, that is the best way to handle it. And I told him if he can't do anymore, then that is totally fine since he had the average doses of what most can handle. So he's decided to go ahead and take the 10am (8th) dose. He's a real trooper. The doctor said "make sure you listen to your body, when it says stop it's o.k. to stop. Too much isn't better when it comes to IL-2" Words of wisdom I thought I'd share with you.
Noteworthy info: Kevin has bad rigors, they are his one big complaint, lots of other complaints too since this is indeed a butt kicking drug. So the nurse today said "why don't we give him the morphine at the time he usually get's the rigors or a half our before and cut it off at the pass?" His rigors are almost the same time, 2 hours after the treatment is started. So we did that and it worked GREAT. Until Kevin was feeling so well he got up to use the bathroom and wanted to go for a walk. Not a good idea, hee hee. The rigors started and he had to get to bed and have another dose of morphine. But they did go away very quickly. So I think that is what we will do the next time, and for the second round of IL-2.
He took the 6pm dose (9th), but said he didn't want the 2am dose. For some reason that dose is the hardest on his body. I'm not sure why. His 9th dose was given and the morphine was done the same, before the rigors. It seems to be working great for him :)
Wednesday 22 October 2014
Day 3 interleukin 2 treatment, Kevin's journey to the cure of Kidney Cancer
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| Kevin is exhausted now |
Wednesday October, 22, 2014
Kevin is hanging in there and being a trooper, but he is SUPER tired. He had his 3rd treatment at 7pm Tuesday eve. It was tolerated a little better, still the same side effects as the others, but this time he only needed one dose of morphine to stop the rigors. His blood pressure is still lower, his pulse is still high, he's more flush and had nausea. Good news is that the nausea went away quickly with meds. He said to me,"this kind of sucks!!", lol. I am glad I am with him, as soon as he gets any side effect I call the nurse and they are all over it. When he gets the rigors, he shakes so hard, it's a little difficult to push the call button.
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| Jacked up Volumetric Pumps |
His treatment at 2am (4th) were about the same as far as reactions go. His blood work showed that he is low on Magnesium, Potassium, Phosphorus and Calcium, so they added a few extra parts to the volumetric pump so they can drip those along with the normal saline. I don't think I've ever seen one that big lol, it's like the limo of volumetric pumps.
His 10am (5th) treatment was right on time. When he urinated it looked a little pink and his urine output was low, so the nurse called the doctor to see what they want to do. Since he only has one kidney, they need to make sure they don't stress it beyond what it can handle. The doctors said they will see what his labs look like and if his levels are way off, they will skip the next treatment, recheck the labs and take it from there. They also gave him an intravenous bolus of saline, which is basically giving fluids at a more rapid rate.
He developed thrush today, which is another side effect. Thrush is a yeast infection you get in your mouth. It tuns the tongue white. We have an oral rinse of nystatin for that.
As a caregiver, you have to make sure the person you are caring for drinks enough fluids. Kevin is so tired, he's not drinking anything because he is mostly sleeping. And although he's on a lot of IV fluid, he still needs to drink. So that means I have to wake him to get him to drink. He also has no appetite, yesterday he ate a half a sandwich, today he doesn't want anything to eat. At this point, no one seems worried about that, just worried about him drinking. Between the IV bolus and me waking him to drink fluids, his urine output and color has improved.
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Tuesday 21 October 2014
Day 2 interleukin 2 treatments, from a loved ones perspective.
Written by Gloria, Kevin's wife, from a loved one and caregivers perspective.
Today, October 21st, Kevin had his first treatment at 2am, right on schedule. He didn't have any slide effects until 5:30 am when he became very cold with rigors, which is kind of like uncontrollable shaking. The nurse brought him warm blankets and morphine. Important to know is you should ask for it as soon as the rigors start. Waiting too long can lead to extra nausea. He became nauseated around 6 am and they gave him some IV meds for that too. About 8 am, he became flush, red all over his body. His pulse went up to about 145, its normally about 65. His potassium, creatinine, magnesium, white blood cells, hemoglobin, hematocrit and platelets dropped significantly. He got a fever and his blood pressure dropped a bit. The creatinine dropping is good, but the others need be watched. About an hour before his next dose, his blood pressure, pulse and temperature went back to normal. He is sleeping quite a bit, but is still able to walk a little, brush his teeth and shave.
The doctors say that you will put on a lot of water weight by the time you are done with your treatment, so its a good idea to bring sweat pants to go home in. You could gain enough that your cloths can get snug. They say this will come off quickly.
He had his second treatment at 11:15. Later than what they should have but there was a hold up at the lab. They check blood work prior to giving every dose to make sure you're healthy enough to take more. This nurse said that if you drip the interleukin 2 over 45 minutes rather than 15, patients seem to have less side effects. So that's what they did this time. unfortunately, the side effects on the second treatment were about the same as the first.
All of these side effects are normal. Interleukin 2 is a naturally made protein called cytokines releases by some cells to fight invaders in the body. This treatment is a man made IL-2 that floods the body and puts it in fighting mode to kill any cancer cells. A normal reaction when one is sick is to get fevers, chills, body aches and pains. This is just a bigger and badder reaction, fitting for a big and bad cancer.
Thanks for reading
Today, October 21st, Kevin had his first treatment at 2am, right on schedule. He didn't have any slide effects until 5:30 am when he became very cold with rigors, which is kind of like uncontrollable shaking. The nurse brought him warm blankets and morphine. Important to know is you should ask for it as soon as the rigors start. Waiting too long can lead to extra nausea. He became nauseated around 6 am and they gave him some IV meds for that too. About 8 am, he became flush, red all over his body. His pulse went up to about 145, its normally about 65. His potassium, creatinine, magnesium, white blood cells, hemoglobin, hematocrit and platelets dropped significantly. He got a fever and his blood pressure dropped a bit. The creatinine dropping is good, but the others need be watched. About an hour before his next dose, his blood pressure, pulse and temperature went back to normal. He is sleeping quite a bit, but is still able to walk a little, brush his teeth and shave.
The doctors say that you will put on a lot of water weight by the time you are done with your treatment, so its a good idea to bring sweat pants to go home in. You could gain enough that your cloths can get snug. They say this will come off quickly.
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| meds |
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| Kevin looking a little flush |
He had his second treatment at 11:15. Later than what they should have but there was a hold up at the lab. They check blood work prior to giving every dose to make sure you're healthy enough to take more. This nurse said that if you drip the interleukin 2 over 45 minutes rather than 15, patients seem to have less side effects. So that's what they did this time. unfortunately, the side effects on the second treatment were about the same as the first.
All of these side effects are normal. Interleukin 2 is a naturally made protein called cytokines releases by some cells to fight invaders in the body. This treatment is a man made IL-2 that floods the body and puts it in fighting mode to kill any cancer cells. A normal reaction when one is sick is to get fevers, chills, body aches and pains. This is just a bigger and badder reaction, fitting for a big and bad cancer.
Thanks for reading
Monday 20 October 2014
Day 1 of interleukin 2 treatments, Kevin's journey to becoming cancer free.
Today, October 20th, we arrived at Duke University Hospital Cancer Center at 2 pm. We went for labs first, then met with the Physicians Assistant to go over the treatment plan. We had a mess up in scheduling time, we were supposed to get here earlier but no one told us until 9 am today. They called Kevin and said "can you be here in an hour", lol. We live 3 hours away so that wasn't going to happen. I guess even the best hospitals can make mistakes.
The plan of action is to start the first dose at 2 am. Normally they would start them at 6 pm, but since we were "late", we have to wait for the next dose time which happens to be 2am. There can be a total of 14 doses, but most people can only handle between 8 and 10. They are giving them around the clock at 10 am, 6 pm and 2 am. They put in a PICC line, which is a long flexible tube put into a large vein in your upper arm. The tip of this tube ends in the superior vena cava or upper part of the chest.
So far the staff here is wonderful!!!! The room is a little small for two, but we'll manage. They do have a chair/recliner/bed I get to sleep in.....oh sooo comfy, lol. They have a fridge which is very useful since I am gluten free and I have to bring my own food, mostly for breakfast and lunch. Plus, it's pretty expensive to eat here, so I will try to only purchase dinner while I'm here. There is a full bath, like most hospitals rooms, and we are on the 9 th floor, the penthouse lol.
I will write more about how he does after his first and second treatments.
Thanks for reading
The plan of action is to start the first dose at 2 am. Normally they would start them at 6 pm, but since we were "late", we have to wait for the next dose time which happens to be 2am. There can be a total of 14 doses, but most people can only handle between 8 and 10. They are giving them around the clock at 10 am, 6 pm and 2 am. They put in a PICC line, which is a long flexible tube put into a large vein in your upper arm. The tip of this tube ends in the superior vena cava or upper part of the chest.
So far the staff here is wonderful!!!! The room is a little small for two, but we'll manage. They do have a chair/recliner/bed I get to sleep in.....oh sooo comfy, lol. They have a fridge which is very useful since I am gluten free and I have to bring my own food, mostly for breakfast and lunch. Plus, it's pretty expensive to eat here, so I will try to only purchase dinner while I'm here. There is a full bath, like most hospitals rooms, and we are on the 9 th floor, the penthouse lol.
I will write more about how he does after his first and second treatments.
Thanks for reading
Sunday 19 October 2014
Day 0 of Interleukin 2 treatments, Kevin's journey with Renal Cell Carcinoma and IL-2 treatments
In March of 2013, our life was turned upside down to say the
least. My husband urinated blood, so we
went to the hospital expecting to hear something as simple as “he has a huge
kidney stone”, but what we heard was something completely unexpected. My husband is a black belt, he eats right, exercises,
doesn’t smoke and drinks occasionally, all in all; he is a big strong healthy
man. But nonetheless, my husband was
diagnosed with Renal Cell Carcinoma (Kidney Cancer). He had two types, clear cell as well as papillary
cell. The treatment was a radical
nephrectomy (his entire kidney was removed) due to the cancer taking up most of
his right kidney. He was clear of cancer
for 14 wonderful months until it reared its ugly head again in May of 2014. We weren’t totally surprised when it came back,
although the news was crushing. After
his radical nephrectomy the doctors told us he had a 40 to 60 % chance of
recurrence. But being a positive person,
I thought for sure after a year had passed that he would be safe and we could breathe
easy. Today is October 19, 2014 and my
husband will be starting a type of chemo therapy called Interleukin-2 on the 20th,
tomorrow. His treatments are being done
at Duke University Hospital in Durham NC.
I decided to write this blog as a day by day, week by week,
month by month account of how he does, what the side effects are, and all the
good and ugly in between. I do this
mainly because there aren’t a lot of “real people” stories out there. As a care giver to my husband, I feel kind of
lost and scared about this whole process.
The doctor’s told us what to expect the best they can, after all, they
can only give us numbers and statistics, there are no definitive answers as
each person is so different. But we all
know when it’s your loved one the numbers and statistics don’t mean a thing,
you want that crystal ball that can tell you that he will do well and make a
full recovery. But as far as I know,
they don’t make crystal balls.
I am hoping that this blog will be informative, useful,
insightful, maybe a little silly as I love to laugh, and most of all it may
help to put others minds at ease and to empower others with the knowledge that
I will learn and pass on to you. I hope
you don’t need to be empowered, but if you do, I hope this blog can help you in
some way.
Thanks for reading
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