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!
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