How many with Stage 4 have had results with IPI (Yervoy)

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8/15/2011 8:33am
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Replies: 21

I've been searching through past and present posts and aside from about 4 people, it seems alot of people who've had success with ipi are people with sub q's.  Now, forgive me for perhaps not knowing, but are sub q's classified as being Stage 4?  When I think of Stage 4, I think of organ involvement or distant lymph nodes.  That being said, with sub q's, you can sometimes see the ipi working because it's on your skin, but if it's in your organs, you're not aware of anything going on.  Are there many people who've done ipi which has worked on their mets internally? 

I started ipi last Wednesday and as of this morning, I've had cramping and 2 semi loose stools (sorry for the graphic visulization). I doubt very much it's ipi, but I'll probably keep track of my GI problems today and report anything funky to my Dr.

Lisa

Many impossible things have been accomplished for those who refuse to quit

Hi Lisa,

I am starting Yervoy this Wednesday and my oncologist feels that it definitely works on internal organs, including the brain. I have 1 brain met and looking for some results!I am a little anxious about starting as interferon was such a sledge hammer to my system. Glad to hear your side effects are minimal to date. 

Alan 

Lisa, I think that ipi does work well systemically but it is difficult to get much
detailed info. This is probably because it is so new (approved by the FDA early this
year) that we don't have a lot of data about it.

I don't think that your GI problems are due to ipi because you have just started taking
it. I wonder what your doctor's opinion would be on this?

You remain in my prayers.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

Hello Lisa,

My husband started Ipi trial with the arm that also received injections of GM_CSF daily for 2 weeks out of every 3 on March 4, 2011. He had 3 visible spots where the cancer was showing on the back of his head which between the 2nd and 3rd dose of Ipi we noticed they were shrinking.  He had the one in the same area that was under the skin and pressing on the spine making it unoperable as well as in his liver and lungs.  We could also see the one inoperable one regressing also.  After 12 weeks when he had his scans he had overall regression of 40%.  With one being almost 60%.  He is in the maintenance phase and goes for his 24 week scans on Friday.

I may add more later but I broke my arm so typing is very hard in this cast.

Good luck with your treatment.

Judy wife of Gene_S

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

test

Insert Generic Inspirational Motto Here

Lisa,

It could be the ipi, as those are possible side effects.

I seem to be a late response to ipi (see my "BRAF after ipi" post from last week).

My scalp sub q's are definitely much smaller after the BRAF was started last week.

We are all different, so respond in different ways. Why should we get a "simple" cancer?!   :)

I only was dizzy/vomiting for 3 days, and that was after my 3rd ipi dose. The other doses were no different than a blood draw, for me. I did have increased fatigue, though.

Best of luck for a swift and strong ipi response!

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5
Cast all your anxiety on Him, because He cares. 1 Peter 5:7

Stage IV 5/16/11

Ipi - 4 rounds May - July 2011
BRAF expanded access trial 8/8/11

My husband just started Ipi last Thursday for internal metastacies.  His is in his lungs, lymph nodes, and adrenal gland.  We're tried Temodar, and Axitinib with carbo/taxol, with limited effect.  We're the first person at our facility (Kaiser San Jose) to have the Ipi.  He's had some fevers, but so far, so good.  Hope we're a strong responder!!  Keep us posted.

Wendy

Wendy,

My husband has metasticized mucosal melanoma (mets in his bones only). We go to Kaiser in Oakland. His Kaiser oncologist is recommending he go to Riverside for intensive interleukin.  Its not clear which treatment (Interleukin or Ipi) is more effective for his condition (neither is very good, tragically), but he would much rather be at home between ipi treatments than in the hospital for a week out of every month in Riverside for interleukin treatments - so he can work, be with family and friends, etc.  Did you have to make the case to Kaiser, or did they offer Ipi? Any guidance on how to work with Kaiser?  Seeing your post, maybe we coudl go to Kaiser in San Jose, then coudl still stay at home.  Thanks for any thoughts. 

I did IL-2 in Riverside at Kaiser in 2010, before IPI was approved. I was referred from Oakland Kaiser at the time myself. In retrospect, the sooner I would have establish a direct relationship to Riverside (Dr. Gailani and his R.N. Robin Green), the better as I would be getting my questions answered without the filter of the local non-melanoma-specializing oncologist I was seeing at Oakland. I am glad she did get me down to Riverside and Dr. Gailain fairly quickly. Not sure if you can talk to Dr. Gailani's office sooner than your first appointment down there, but in the main office phone for them is 951-353-4558. It's so much easier to talking things over directly with THE melanoma specialist at Kaiser, or at least in our part of the country.

 

I've read that they're finding that people who don't respond to IL-2, still respond to IPI in about the same numbers as patients who have not taken IL-2 yet. So it's not necessarily the same subset of people who respond to one or the other, so if you can hit both treatments with Kaiser (if needed), that could possibly almost double your odds of response. With the caveat that I don't know how mucosal melanoma is different from non-mucosal melanoma, nor how bone mets typically respond -- both things probably best discussed (directly if possible!) with Dr. Gailani. 

One possible view would be, if your husband is well enough to handle the more consistently harsher treatment of IL-2 now, then if he's not a responder to that, perhaps IPI could be next in line treatment. Dr. Gailani and his team are extremely experinced and an incredible resource to take advantage of at Kaiser.

Another thing you might want to consider working with Kaiser, is to get a local second opinion, e.g. from UCSF's melanoma clinic (I paid for my own non-Kaiser second opinions at UCSF throughout 2010), either Dr Algazi or Dr. Daud. Another local option in SF s Dr. David Minor at Cal Pacific.
 
- Kyle

Kyle,

Thanks so much for responding.  You've given me a lot to think about. 

We did get a second opinion - from Dr Daud at UCSF.  Dr. Daud thinks that my husband should go straight into IPI.  Metastized mucosal melanoma is extremely aggressive, he is stage 4 and while they won't give him a time frame, they said they would not disagree with his estimate of 3 months to 3 years. 

 I would like to hear how your experience at Riverside went -  my husband feels like the IL-2 treatments at Riverside would make his life consist of getting hospital treatments for a week, then a week or two of recovering, then a week of maybe not feeling bad, then back away from home in hospital treatment. Sounds like it would be good to contact Dr. Gailani regarding relative effectiveness for his particular condition. 

The prognosis is not good under either IL-2 or IPI, and he is thinking he would much rather be home more of the time, with work, family and friends.   He is thinking about whether it might it be better to go straight to the IPI.

Its great to hear that you are surviving so far, that is all anyone ever gets I guess.  We are still in shock, this was only diagnosed a month ago, at stage 4.

Thank you so much.   

While I was still with Kaiser in 2010, I got second opinions from Dr. Daud as well. Kaiser Riverside had given me 2 choices of treatment, whereas Dr. Daud recommended one of those 2 choices over the other. In my case, IL-2 was the treatment that both Kaiser and Dr. Daud coincided on, so I went with that. Obviously mine is a different case (and a different time -- if IPI had been FDA approved in 2010, which it wasn't, IPI would have been a third choice to consider). These are tough decisions. I was trying to find the best oddsmaker or combination of oddsmakers to go with. 

As far as the IL-2 experience, I would say IL-2 is more consistently a rougher treatment than Yervoy, that's why it's done in an ICU or ICU-like setting unlike IPI which is outpatient. However, it's possibly less likely to give the severest complications that IPI can in some cases (not a huge proportion of cases but a few). I was very tired for the week in between IL-2 cycles 1+2, for a couple weeks after cycle 2, and then a repeat of the same thing for cycles 3 and 4. So I think IL-2 is pretty much as you and your husband are picturing it. 

 

As far as IPI, the side effects can be way more variable in either direction, milder in most cases, but with some very severe reactions as well, for example some others on this forum have been hospitalized for weeks fighting severe colitis. I was lucky to not get any major immune complications for my 4 IPI cycles not at Kaiser in 2011. Possibly a tiny bit of the severity also depends on the skill of the oncologist team treating with Yervoy to be (and to have you the patient be) on top of the symptoms right away, especially colitis -- there appears to be some variance in how quickly different oncologists act when symptoms start appearing with this still quite new drug. 

I do know Kaiser does Yervoy in-house, at least at Riverside they've been doing "tons" since FDA approval in 2011, per a recent short email I had with Dr. Gailani's nurse. IPI is probably done closer than Riverside by Kaiser too, I think I've read, since it's outpatient.

Did Dr. Daud have any suggestions about any possible clinical trials for mucosal melanoma, if there are any? One other thing about Kaiser is that Dr. Gailiani's team seemed much more informed and willing to talk about clinical trials for Kaiser patients than Kaiser Oncology probably is on average. 

Also, if you have any option to change insurers (it's the end of open season for some of us), and have any desire to do so, IL-2 is done locally at both UCSF and CPMC in SF, in the world outside of the Kaiser universe.

One last thing, there is a melanoma support group that has been meeting (but just lost its coordinator, hopefully it will continue meeting without interruption, 3rd Tuesday of every month at CPMC. For more info, contact Linda Gates at: 415-923-3155.

Hope this helps. - Kyle

Should probably ask about genetic testing, like for C-KIT mutation. Has he been tested for that? Not sure what mutations are common in mucosal melanoma but is C-KIT one of them? I assume you went through that with UCSF, Kaiser or both?  If the bone tumors are amenalbe to biopsy? 

I shold add that changing insurers is not to be done lightly, since you could easily end up with a plan with more constraints or even denials depending on the plan, vs. Kaiser. A reasonable alternative is to keep seeing your second opinion doc, I saw Dr. Daud several times at each new twist in 2010, essentially shadowing Kaiser.
So...it's complicated.

THanks for all teh coments, very encouraging. 

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good. I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it. I was encouraged by teh perspective that he can start it and if its too devastating he can quit.

We have heard about a trial with higher doses of Ipi and GM-CSF. Anyone know about any responses/reactions to that combo? Thanks all. I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks. Thanks again, I really appreciate hearing from others.

Thanks for all the coments, very encouraging. 

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good. I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it. I was encouraged by teh perspective that he can start it and if its too devastating he can quit.

We have heard about a trial with higher doses of Ipi and GM-CSF. Anyone know about any responses/reactions to that combo? Thanks all. I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks. Thanks again, I really appreciate hearing from others.

Hi Lisa,

I had a great response (now NED) with ipi as part of the Compassionate Use Trial that I had started way back in Aug 2007.  Had 5 does total.  All my mel was in my lungs and one adrenal gland.  It's no longer there.  Hopefully my quarterly  scans this Saturday will continue to be clean.

I would suggest reporting EVERYTHING to your doctors or their PA while you're on trial.  GI (loose stool) issues are a prime side effect of ipi. 

Good luck to you!

Luke 1:37

Thanks everyone!

I definately like to read success stories of ipi - especially when it's involving organs. Rocco, I can only hope and pray that myself and many others are as lucky as you are.

I've continued to have a bit of stomach cramping, but that's it.  I'm assuming it's too much birthday cake over the past couple of days and not ipi. :)

Wishing you all the very best!  Rocco - here's to continued NED!

Lisa

Many impossible things have been accomplished for those who refuse to quit

Hi Lisa, I have read your melanoma journey from the 2010- you have been in my thoughts and prayers- may I ask how you are doing now? Thinking of you.

Unfortunately, Lisa passed away. We miss her and may she rest in peace.

My husband just started Yervoy today. He has stage 4 which was diagnosed last year, April 16th. He did the bio-chemo, 6 rounds and the last two were difficult. His body could not handle the IL-2 very well. There were new growths as well and a little shrinkage of some of his tumors.

Sorry...so much to write...but today was his first infusion. We will let you know how it goes. Keep up the fight!

 

Hey Friends, 
 
Here is the update....hit the link for the rest. Love you guys and thank you for your prayers and support.
 
Since last year April 16th when we found out from our good friend Dr. Lee, that Eric had stage IIIb melanoma our lives have been a whirlwind of hospital visits, stays, surgeries, research and chemo. One day we are hopeful, the next overwhelmed depending on the doctors but trusting the Lord in the process that whatever happens, He gets the glory.
 

Continued here

Trust in the Lord with all your heart.....

Eric completed his third Yervoy treatment May 3rd, 2013. He felt sick from this one. A little fluish.....and felt sharp pains in his legs. His neuropathy is very painful. Also, his legs were very stiff that night and the next morning. He is feeling better with regards to the stiffness but the pain is still there. He is a lot more tired from this third round. 

His next treatment will be his 4th then will come the scan. Praying that it goes well. 

Trust in the Lord with all your heart.....