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!

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  :)

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

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.




Kevin

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.

Kevin with Nicky and Moose

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!

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.

Kevin, before our drive today 

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  :)

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  :)

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.

Kevin and I 8/22/97

Cruising Lake Norman Summer 2009

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:

1. Get ahead of any side effects.  As soon as you feel anything, tell the nurse.
2. Don't be afraid to push the call button for the nurse, they actually feel better if you do.
3. 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.
4. Listen to your body, if it say's to stop, then you should stop.  More isn't better.
5. 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.
6. 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.
7. 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.
8. 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.
9. Bring a robe from home, they will want you to walk the halls and its easier to cover your bum that way  :)
10. 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

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  :)

Day 3 interleukin 2 treatment, Kevin's journey to the cure of Kidney Cancer

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.

Jacked up Volumetric Pumps 

It seems as though the timing of his reactions are the same.  He gets a dose, then 2 hours after it is started, the rigors and chills start.  He gets morphine then sometimes needs another morphine a half hour later.  Then a half hour after that, he sometimes needs an anti-nausea.

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.

Kevin is doing much better since he got all those electrolytes that he was low on.  Took a few hours, but he's smiling again.  It's so good to see that smile!  What a difference those electrolytes made with him.  We are waiting on his next treatment dose at 6:30 ish.  I am sure after each does he will get to feeling pretty bad again.  I think it's just the nature of the beast.

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.

meds

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

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

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 20^th, 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