New Kid on the Block

one putt said:

IL2 After Votrient Part 2
Tex,
I spoke to my research nurse today about IL2 after Votrient.She told me my oncologist would be the one to ask as to why he insisted on IL2 first.Unfortunately, I don't see him again until February.However,she did say IL2 was considered a "first line"treatment option.Typically,patients are at their strongest at this point(less debilatated from other treatments)and more able to withstand the harshness of the IL2 treatment.In addition,she offered that pazopanib,sunitinib, and others in the TKI family of drugs,are cardio-toxic.This could increase the likelihood of a heart attack if IL2 is administered after a TKI drug.I hope this helps you in some small way.
Best Always,
John

IL2 After Votrient Part 2
John, many thanks - that's the first info I've received on this pretty important question. With Toolman's confirmation below, in addition, I put the issue to my onc for discussion with The Christie. So far as I can gather, Prof. Hawkins has said that having Votrient first would not, of itself, disqualify me from IL2 treatment but that if that order of treatments were to be pursued they would need to be "very careful".

Of course I'm hoping that won't need to be tested and that it will be possible for me to get HD IL2 very soon, in which event I'll take to heart what Alice has said, below, about your experience with pruritis - something I fear and which, as a redhead with a thin and sensitive skin, I'm susceptible to.

Your explanation that IL2 is so tough that it's a good idea to get it while one is as robust as possible is what I've heard before. I'm disposed to doubt that prior therapies would make it less effective and I have info to the effect that a prior mTor might actually potentiate the effectiveness of IL2!

The speculation about heart attack risk has a certain inherent plausibility for me. It's certainly known that at least some cancer drugs are cardio-toxic, notably the old chemo mainstay doxorubicin (Adriamycin). [I wonder whether there's a table somewhere with data on the cline of cardio-toxicity of the various agents, or categories, at least?] Moreover, one of the major side-effects monitored for with Votrient is hypertension, whereas IL2 is known to induce hypotension. To switch abruptly between drugs that pull BP in opposite directions would seem to be counter-intuitive as a wise course of action.

Perhaps the direction of change - high to low BP - is critical, since, as your own case illustrates, Votrient AFTER IL2 is fine. I still cling to the hope that your previous IL2 treatment will have had some payoff in facilitating the activity of the nivolumab/pazopanib combo and I'm keeping my eyes peeled (ouch, that metaphor seems less appealing now!) for evidence to that effect, which I'll pass on when I come across it.

Thanks for the encouragement and I'm so pleased that your treatment goes on so well.

Texas_wedge said:

IL2 for chromophobe?
Here's hoping we now have the chance to find out! Did your onc cite authority for that proposition? If not, why not? Maybe you could ask her/him. I doubt whether there's enough data on IL2 for chromophobes to support such a bald pronouncement.

We do know that sarcomatous change makes chromophobe more amenable to intervention by chemo; whether the same might apply to IL2 we can't tell. However, we do have evidence that schRCC shows a promising response to Votrient. One of the mainstays on KIDNEY-ONC has sent me a paper in which this was demonstrated in a lady of 82 who had had a rad. neph, plus distal pancreatectomy, splenectomy and retroperitoneal lymph node dissection! [Tough old lady!]

So, one lives in hope. I hope that if I get the IL2 chance my body doesn't wimp out.

IL2 for chromophobe?
Can't imagine your body wimping out, Tex, though anythings's possible, as we all know. My onc is a top RCC expert but I didn't ask him those very good questions you pointed out above because I was still rather stunned during the early conversation in which IL2 came up. I am happy to ask him to elaborate but I won't see him again until Nov. 20. The cancer center with which he is associated does not provide IL2 treatment. Whatever treatment path you choose will be the right path for you. I completely understand going for the possibility of a "cure" before embarking on any other systemic therapy. Why shouldn't you or any of us be among the lucky ones?! It's all such a crap shoot. Just thought I'd share my nugget of info for whatever it's worth. Good to know that sarcomatous chromophobe responds to Votrient. You know we're rooting for you!

Max Power said:

From my notes:
Me: Can I see what happens with Sutent first? (Before IL-2)
Ans: If on Sutent for longer than one or two cycles, may require non-medicated “wash-out” period of 1 mo.

IL-2 clinical trials were at that time limited to finer filtering of patients in the hope that they would have a higher success rate. I had actually taken a couple of Sutent pills which, though it didn't disqualify me from IL-2, one person told me my data wasn't being used in the trial results because the Sutent clouded the picture.

Notes
Thanks for that additional info Max - just shows how valuable it is to pay attention and keep notes.

toolman1 said:

IL-2
Alice, you are indeed correct about the Phoenix Rising post. Found it under the thread, "IL-2 here I come", dated Mon, 09/03/2012 - 12:48pm.

I will be entering the hospital tomorrow 11/4, and spent some time at the grocery store yesterday, stocking up on many of her suggested items. Started applying that Eucerin before bed last night. Good God, that stuff is oily and sticky. Maybe that's why it works so well.... YUCH! Bought an 8 pack of 12oz. Cokes, ginger root, some Healthy Choice individual bowls of chicken soup, , and veggie soup, w/snap on lids, individual fruit cups, also w/snap on lids, Danon Light & Fit yogurt, and Eucerin. Hopefully that will do.

On edit, I will likely be updating by 11/13 or so. Will just have to get my head screwed back on straight. Be well all.

GOOD LUCK!!!
Sounds like more tools in the toolbox of wupass that you are opening up for RCC, it will never know what hit it!

Hang tough,

Gary

toolman1 said:

IL-2 continued
11/11
Hi all! Well I'm still alive and kick'n, kinda sort-of. Round one is now behind me (made to 10 infusions then the Doc pulled the plug). Having been through this now, I REALLY gotta ask who invented this cruel treatment. As I sit here attempting to type, my feet and hands are swelled up like the Michelin Man, I have the bad taste and smell of the IL-2 in my mouth, sores on my gums, skin peeling on my face and shoulders, in spite of liberal Eucerin applications, zero appetite now for going on 4 days, insomnia, and the list goes on. I imagine the worst side effect was, and still is high liver levels and kidney creatinine levels more than twice what they should be. On Wednesday 11/14, the wife and I will be at the Dr's office, and I'm gonna be asking some cold hard questions, including why my one and only remaining kidney was put in harms way. At the moment, my inclintions are to NOT participate in the second round of infusions. There, I got it off my chest! I'll step down off of the soapbox now.

IL-2
Toolman,

I just read your above post and then read it to John (who's been a bit under the weather the last few days). Your post flooded our brains with a bunch of terrible memories that I think we both have unconsciously tried to block. We do remember clearly Dr. Hammers describing IL2 to us as a "closely monitored intensive care Draconian treatment", and Draconian it was.

John experienced many of the side effects you describe. While he ate next to nothing in the first round, during the second round, he wouldn't let them bring hospital food into the room. The only food that went into his room--though not always eaten--was food from the outside that had some appeal to him. But he developed a phobia to anything served food/drink wise in the hospital or even available in the hospital pantry. Actually, today is the first day he has drank ginger ale since his February IL2 stint because it was a hospital drink.

He did not experience the liver and creatine spikes you had but did experience hypotension (low blood pressure) which confined him to the heart monitor and bed during the second round. It wiped him out to the point he couldn't start the second round until three weeks later, asking it be postponed and give him time to regain his strength. But he couldn't walk away from the tease of a NED outcome.

I'm not sure how your doctor will respond to the kidney/liver questions you ask but don't think your experience is uncommon. We (John and I) wish we could say the next round will be easier but for John it wasn't. But as terrible as it was, if you ask John today if he is sorry for going through it all, he will respond without hesitation, "NO." Going through it all was preferable to not knowing what could have been.

We're both wishing you the best whatever you decide. . .

Gordon Charles said:

Soapbox reply
Toolman: At my place of work I'm known as the guy who deals with the 800 pound gorilla in the corner so here goes: I had two rounds of IL-2 and got pulled for high creatinine. My reactions were extreme rigors, high creatinine and generalized yukkiness. That being said, you took a chance on this treatment for it's 7% NED rate. You took a chance because you're married and your wife can't bear the thought of life without you. Your remaining kidney was put in harms way in the first place by the original tumor and any attempts to fight the disease are taken to extend your life. There's no way you started this therapy without knowing full well that you were headed down a very rocky road. The gum sores and skin peeling weren't a part of my IL-2 therapy but they were present during my other attempts at attacking this lovely disease. AND you still don't know what effect this first round has had on you. Are you a 7% person or maybe 15% significant response? Every day I look around and think of all the people in the world who have died since I was diagnosed and they didn't know they were going to die. I'm still here and so are you. We all face this disease in our own way and I'm sure the frustration of your fight was the motivation for your post. So unless your results on Wednesday preclude you from a second round you'll go back for another set of doses of IL-2. You'll do it because it is your best and only chance for a cure. You'll do it because you love your wife. And you'll do it because you are a man and that means you attack your enemies head-on. Good Luck and Take No Prisoners!

great pep talk
Gordon, Nice! Excellent perspective on dealing with this. Toolman, if you can, stick to your original committment. We are behind you whatever choice you make.

toolman1 said:

11/25 Update
11/18 began the second round of IL-2. I was at 7 bags, and the Dr. pulled the plug, feeling that I had had enough (probably due to high liver potassium and (high 2.8?) Creatinine levels, in the 1 remaining kidney. From that point on, my hospital stay was determined by the Dopomine levels that I had to be weened off of, which took about 2 full days.I was released on Fri 11/16 and already was suffering from blisters on my back, and chest, and major skin peel on my upper torso. Once at home, the wife immediately began drenching my skin in Eucerin lotion, and the Dr. had given me a Rx of Hydroxyz 25 mg. to stem the tide of skin irritatation (itching). So, here I sit, weakened from the process, skin fried and peeling, from the chemical response, and who knows what is going on inside my anatomy. Hopefully there is a plethora of wonderful things going on, to kill this disease we all know as RCC. That's about all for now folks, and I'll step down from the podium at this time. Thanks for being here, and being my sounding board. Luv all of ya! Gary

Hi Gary
You went as far as you could go in the second round,hope you are feeling better in the next few days and i am hoping you got some favorble results from all of this.

alice124 said:

Update
Way to go Gary. While I hoped you had gone in for round two, I wasn't sure until now. Last time I saw your post you were pretty down and pissed.

Like you say, "Hopefully there is a plethora of wonderful things going on, to kill this disease we all know as RCC." And soon you'll find out. Much better than going through your life asking, "what if"? Congratulations for toughing it out and good luck on future NED status.

Can only guess based on John's experience how miserable you are right now, but you don't strike me as some one who can be kept down long. Once you're stronger, pat yourself on the back for seeing it through. We're proud of you!

IL2
Well said Alice - we are that, Gary, and I share the hope that it's going to prove to have been well worth it.

toolman1 said:

11/25 Update
11/18 began the second round of IL-2. I was at 7 bags, and the Dr. pulled the plug, feeling that I had had enough (probably due to high liver potassium and (high 2.8?) Creatinine levels, in the 1 remaining kidney. From that point on, my hospital stay was determined by the Dopomine levels that I had to be weened off of, which took about 2 full days.I was released on Fri 11/16 and already was suffering from blisters on my back, and chest, and major skin peel on my upper torso. Once at home, the wife immediately began drenching my skin in Eucerin lotion, and the Dr. had given me a Rx of Hydroxyz 25 mg. to stem the tide of skin irritatation (itching). So, here I sit, weakened from the process, skin fried and peeling, from the chemical response, and who knows what is going on inside my anatomy. Hopefully there is a plethora of wonderful things going on, to kill this disease we all know as RCC. That's about all for now folks, and I'll step down from the podium at this time. Thanks for being here, and being my sounding board. Luv all of ya! Gary

Bravo
Sorry, I've been a bit slow on the uptake. I applaud your bravery, Gary. I pray that you are one of the lucky few who get a total response to this treatment! Hang in there and kick butt my friend!

Love, Paula

toolman1 said:

6 week update today 1/14/13

Yet another sleepless night. As if the IL-2 treatment wasn't bad enough, or the associated after effects, today we find out the results of the IL-2 treatment. I was at the USC Norris Cancer Center, last Wednesday for Lab samples, and CT scans, so everything SHOULD be in order. I've got all my fingers and toes crossed tightly.

Good luck...

Hi Gary,

Good to hear from you and glad things seem to be going "relatively" well.  Here's hoping the IL-2 is doing its thing and you get positive results today.  I'll cross my fingers and toes for you too.

Gary