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Caregiver - Husband diagnosed stage 4 clear cell RCC

cbop54
Posts: 2
Joined: May 2013

My husband was diagnosed in March of this year with Stage 4 clear cell RCC. He had 2 rounds of Sutent which worked some on round 1one.  He had a radical nephrectomy in July to remove the tumor, kidney and ended up taking his spleen, part of his diaphram,  almost half of  his pancreas -- Now he is undergoing IL2 for the mestasisis to his lungs.  He is only 42 and we struggle to find a reason why this disease has manifested to such a stage so early in his life.  The doctors said because of the size of the tumor it has been growing for many years.  Tomorrow he goes in for the second week of round 1 for IL2.  The side effects were pretty bad on the 3, 4, 5 day and his blood pressure did drop so he ended up in ICU to be monitored.  Does anyone else have experience with their spouse undergoing IL2 treatment?  Thanks...

RavensMOM
Posts: 1
Joined: Dec 2013

Like you my husband has stage 4 rcc mets to skull and now nose.  His nephrectomy was in 2007.  He had 2 rounds of il 2 last year.  Yes the side effects were hard.  I relied upon great nursing staff to help with the rigors which was hard to watch.  Sadly il2 was not effective for him. 

What can I do to help you?

 

Molly

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

I'm the resident IL-2 board member. Many others have had it. I'm the most recent. Take the time to read back from my first session in July. I tried to post a blow by blow but became unable to continue as the treatment is tough. I've admitted that it was the hardest thing I've ever done. But we do what we need to do. We don't complain too much. We put our head down and plow forward. We don't quit. We don't pack it in. We know others have done this and must adopt an attitude that we can do it too. I had some favorable results in some areas but not in others. Next scan is in 2+ weeks and we will see. Dig in. It is hard and scarey. But the nurses watching out for you know their job. So fully commit and do it. Considering the alternatives, a stretch of hell is worth it. you can do this. As an additional note, it has been 2 months since my last session. I don't think I am back to normal yet. I am getting there. You can and will do this....The rigors were awesome. They also brought back bad memories of abuse I endured as a child. I had to relive it and it was very difficult emotionally. Add that to the physical trauma of the treatment and it is a trip that takes some time to recover from. If I thought it would help, I would do it again in a heartbeat. Keep things in perspective. You are battling to live. This is where you find what you are made of. You are not the first and you are not alone. Hang in there. Good luck. Fox.

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

Fox you truly are an inspiration to this forum and the encouragment you give is overwhelmng.  Going thru what you are enduring and still helping others through all of the hard times is really something.  I admire your strength, and giving of yourself and not complaining when I know it must be tough on you.  Thank you for your caring and straight forward answers to everyone.  Your friend Sue

Jojo61's picture
Jojo61
Posts: 366
Joined: Oct 2013

I agree with Brea!

Fox, you ARE a great inspiration. Sometimes life just isn't fair. But it happens. And you do what you have to do to survive - and even better - thrive! Foxy, you a perfect example of how this can be done.  And you share your experiences to support others and help them through their struggles.

God bless.

Jojo

one putt
Posts: 72
Joined: Sep 2012

I had IL-2 treatment in Jan.,2012. I took all 14 doses the first time and 11 doses the second time. Second  go round my   BP dropped  and I was  on heart monitor confined to bed the last  3 1/2  days. Besides a  rt radical nephrecgomy, I have multiple lung and bone mets. IL-2 for me showed mixed results but, unlike Fox, not enough to warrant continued treatment. There is a train of thought that feels even unsuccessful IL-2 treatment can be helpful with additional treatment modalities. I'm currently in a nivolumab/votrient trial since May,2012 which has seen a 58% reduction in my tumors. I'm not sure about Fox, but I had lingering side effects for months after IL-2. Hope this helps.

Darron's picture
Darron
Posts: 221
Joined: Jun 2013

I had radical in oct 2012, mets to lungs, and 3.8 cm tumor in adrenal gland. I picked Nivolumab-Sutent trial instead of IL-2. It is my plan B so to speak. 

Fight hard, and know there are others fighting hard as well.

boolymagooly
Posts: 1
Joined: Jan 2014

Your scenario so similar to my husbands'. By the time he was diagnosed, extremely large kidney tumor with mets to lung, lymph and bone. had nephrectomy with partial removal of diaphram, surgery and radiation to leg. Chemo so far has included Sutent, Infinitor, and Inlyta currently(i think he has tried a couple of others..1 year and half post op..hanging in there!!!

cbop54
Posts: 2
Joined: May 2013

Thank you for all the information.  And Fox you are very inspiring.  My husband is a fighter. I dont think he realized how strong he really is.  He just came home yesterday from the second week of his IL2.  He will be going in about 6 weeks for scan to see if this has worked at all.  Fingers crossed!  I will update after the scan.  Happy New Year.

nyisles's picture
nyisles
Posts: 26
Joined: Mar 2013

Last time I was on this board I was trying to figure out whether to do the IL-2 or wait until something comes back.  Well the decision was made fo me when 3 months later there was new spots.  My doctor said they weren't really "new"...just micro metatisis that was not seen at the time of the surgery nor picked up by a scan 3 moths prior.  So here is a quick recap of my weeks of IL-2 treatment

Week #1 (August 26-September 1) - Took 11 bags out of the possible 14 and had some strong side effects.  Rigors for the first few bags but none thereafter.  Tongue feels like it was burnt in a bowl of hot soup by about the 4th bag.  Throat sore after about the 5th bag.  Took anti-nauesa meds 15 minutes before each bag was given so it was not a problem. Blood pressure went down but still ok.  After the 11th bag I became neuro toxic and thought I was in the year 1860.  Docs kept asking me and I told them all the antique guns on the wall were from the 1860's but need an expert to figure out exactly what year.  Also got a hold of my phone and texted people that I was being held hostage and they wouldn't let anyone see me (which was not true).  My mind got clearer 24 hours later

Week #2 (September 9-September 14) - After only 4 bags of IL-2 my blood pressure dropped to dangerous levels, my heart rate skyrocketed, my lungs filled with fluid and was not able to breathe, then my one and only kidney failed.  Was in ICU for about 24 hours with a Bpap machine on to force air and 2 shots of morphine given to slow my heart rate so it would not explode. Gave me meds to raise my blood pressure which are not kidney friendly but had no choice. If my blood pressure didn't rise I would have been dead. Went back to the Oncology floor and had not produced urine in 24 hours. Slowly my kidney started to turn back on.  Got home and had to go for tests and thank God my kidney came back fully with no damage in about 2 weeks.

FOLLOW UP (October 31st) - Scan results showed that the IL-2 has made a tremendous impact.  Docs were very excited and said it was in the Top 8% in responses that they ever seen.  Nothing new showed up and what was left was in three categories: 1) drastically reduced 2) practically gone 3) completely gone. 

Week #3 (November 14-November 18) - Took 5 of a possible 10 bags. Docs wanted me to take 1 more but I couldn't do it. Felt like I was on the brink of another ICU visit so I stopped.

Week #4 (December 9-December 13) - Took 4 out of a possible 9 bags and stopped after I was too beat up to continue. Throwing up, not eating and not wanting another ICU trip I stopped even though the docs wanted me to do one more.

So now I have a few weeks to do another CT scan to see if the IL-2 was able to finish it off.  Fox is right about the memory thing.  Since treatment I too have been haunted by recurring memories of abuse as a child.  Memories that I long blocked out that was "awakened" by the IL-2 You do feel sluggish and "off" for a few weeks, but my tongue got better after about 5 days or so. What still feels foggy once in a while still is my head.  Your memory gets a bit hazy but it does clear up after a while.  The side effects of IL-2 is a small price to pay for the possibility of getting rid of this garbage. 

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