Interferon vs. Ipi trial for Stage 3C Melanoma

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10/21/2011 4:26pm
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Replies: 19

Hi. My husband was diagnosed with Melanoma (2.55mm thickness, non-ulcerated) on his chest  in July.  A follow-up WLE and SNB revealed 4 of 6 microscopic tumors in his lymph nodes, tracking to both his left and right armpit. He has since completed two completion node dissections and enrolled in the interferon vs. ipi trial.  We were really hoping he would get chosen for the ipilumimab trial but unfortunately, he lost the lottery and is scheduled to begin Interferon on Monday.  I want to make sure I'm doing to right thing by encouraging him to stay in the trial.  I've looked at all the Interferon data and I'm unimpressed, but I also can't imagine doing nothing.  He is 36 years old, and a father of a 2 year old and one more on the way. 

I've read through past posts which have been incredibly helpful, but I'd love to hear any words of encouragement as to why he should stay in Interferon side of the trial.  Also, his doctors are implanting a port on Monday since he isn't supposed to get blood drawn from either arm.  We're curious how standard this practice is and how difficult it will be to endure. 

Finally, are there any examples out there where people have been prescribed ipilumimab off-label for resectable Stage 3C Melanoma?  We've consulted with five doctors so far and I haven't found one willing to do it, but...

Thanks in advance!

Donna

Donna,

I think the FDA needs to get out of the way.  They should only approve or disapprove drugs.  From that point forward let the Dr and patient decided.  The FDA is in bed with Big pharma as well as the insurance companies, and it's obvious here that they wanted to appease them both, first by approving the drug (made BMS happy) and second limiting its use (made insurance companies happy)

Donna, I was diagnosed Stage IIIc in 2003 (14 maligant nodes) and did biochemotherapy (which includes Interferon and IL-2) at the University of Colorado Cancer Center.  I've been healthy, no evidence of disease, ever since.  If your husband isn't receiving Ipi, perhaps Interferon isn't the only alternative to explore?  I chose the very aggressive biochemo option because I was only 50 at the time and wanted to 'take my best shot' at not progressing to Stage IV.

Take care and best wishes to you both.

Rich

www.hotelmelanoma.blogspot.com

Donna, I forgot to mention that my doc has also participated in a study of "pegylated" interferon.  As I understand it, the pegylated form of interferon is as effective but less toxic to the patient.  I'm certainly not qualified to give treatment advice, just encouraging you to explore all the options out there.

Rich

Donna,
We are awaiting entry into this trial. My hubby us doing radiation now. Our tentative date is 12/5. I agree that I would love an option other than interferon. We are in the same boat. Local recurrence after 6 1/2 Ned. My opinion is he will never be younger or healthier and it's time to put up the fight! I refuse to watch and wait again.
We have consulted with three oncologists and this trial was our best option.
Good luck and keep the faith. Someone has to be part of the 8-10%!!!!

We don't know how strong we are until being strong is the only choice we have.

Anonymous - (10/21/2011 - 9:18pm)

Donna,

My daughter is in nearly the same situation. She was diagnosed in September as stage IIIb and we have decided to do the same ipilumimab trial. We hope to win the ipilumimab lottery, as she already made decision that interferon is not an option that she wants to consider. We completely agree with the the idea that we don't want to sit by and do nothing, but we are unconvinced that interferon is worth the quality of life costs for the limited results. From our research, Interferon is an old drug, and its toxic drawbacks and inability to prevent relapse are well documented. We want to be aggressive though, and believe that ipilumimab is the by far the best choice for us.

If you find a doctor willing to go off-label, we would be very interested in their contact info. Hopefully we win the lottery and won't need it, but win or lose, we are at peace with the decision to pass on interferon. I wish your husband the best of luck whatever choice he makes.

BC

Hi Donna,

My husband is in the same boat as your husband and I am also curious as to what people will say.

We are going to Sloan Kettering and looking through their trials it seems like this will pretty much be what will be offered.

Best of luck to you both,

Jewel

I think it is a real shame that interferon is still being pushed as an adjunctive treatment.  It is pretty clear that ipi would probably do a much better job as it is at it's best with the lowest tumor burden possible. I was diagnosed with melanoma and a positive node in 2003 and the only option was interferon.  I opted out, since to me, the numbers were no better than winging it.  I made it until 2007 with a secondary primary or a met...no one can tell, but negative nodes.  Then, in 2010, had met in lungs and brain.  I don't regret passing on interferon, because I don't think it would have made a difference...however, that is only my opinion and this is a highly personal matter. I am currently in an anti-PD1 trial in Tampa.  But, this is a messy business and I can only wish you the very best in every way. For more info on a recent publication on this very topic by some of the best docs in the field....see my blog:  chaoticallypreciselifeloveandmelanoma@blogspot.com  Yours, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Anonymous - (10/22/2011 - 9:06am)

When you go to Sloan Kettering, it would be interesting to get their perspective on Beta Blockers. See the attached article.  Since SK is against interferon, Beta Blockers sound like an exciting alternative they may be looking at. If we don't get my daughter in the ipi trial, this would be a great alternative to doing nothing and potentially more effective, and certainly with less side effects, than Interferon. May be too good to be true, but it does make sense.

Anyway, we strongly considered going to go SK for our second opinion, because we wanted to weigh the contrary opinion to the standard Interferon protocol.

Perhaps they will know of upcoming trials for this.

http://www.docguide.com/beta-blockers-may-improve-survival-time-patients...

Good luck,

BC

I was diagnosed IIIC after surgery July 2010 and was only offered Interferon.  At the time I knew nothing of Melanoma or treatments.  I did 10 months of Interferon and pray to God it helps delay recurrence.  At least I do know if the beast does come back there are other options.  Good luck to whatever treatments you guys decide to go with.  It is defenantly a personal decision and everyone has different experiences with each treatment.

Don't sweat the small stuff. There are bigger fish to fry!

Thank you to all who responded  with your stories. To everyone who is waiting for entry into the ipi trial, I sincerely hope you (or your loved ones) end up on the right side!  I've heard of so many people who lost the lottery that it's about time that someone gets treated with ipilumimab.  We went into this trial thinking we would drop out if my husband was on the interferon side; however, given that there are some people who find the treatment to be tolerable, we are going to give it a shot.  As soon as the side effects lead to QOL issues, we will likely drop out.  I will also ask his doctor about the prospect of beta-blockers. 

In the meantime, please keep me posted if anyone finds a doctor willing to prescribe ipi off-label.  We went to SK as well and were only offered observation;  while they did recommend the ipi trial, they are not currently running the trial. 

Best,

Donna

Donna

My husband is doing Interferon... three months to go.  The Ipi trial was not yet open when he was dx and he didn't quaify for the trials that he did apply for.  Didn't want to watch and wait so here we are.  Honestly he has been amazing throughout.  I know that he has tolerated the tx better than most but honestly it hasn't been bad.  He is tired at the end of the day and has intermittent days were he feel worse than others.  He has worked at a demanding job throughout.  Heat makes everything worse so we are happy to have summer behind us.  He didn't get a port.  I am an RN.  We opted for IV starts twice a week with his blood draw for the month of daily infusions.  He has good veins and it was never an issue.  IV start Monday, home with a saline lock MT night, out on Wed restart Thurs and out Fri for the weekend.  There is a risk of infection with the port and we didn't want to take that risk knowing that the treatment would make him more suseptible to infection.  If your husband has bad veins or hates needles then I would recommend the port or a PICC line.

If you have specific questions feel free to email me  ockellyo@gmail.com

Kelly

Donna, I feel the way y'all do about the Interferon, from my reading I understand tht around 5% get a 50 fold boast to the immune system.  I personally would prefer that Ipi or IL-2 be available for stage III patients, even  after resection.  Don't know if trials for this will ever be done though. 

   I was not really disappointed when told I had quickly gone to stage IV, since I could then get the IL-2.  So far o one can tell just who the Interferon will help. 

   My purpose in commenting here is to address the Bard port issue.  The Bard port is often used for IL-2 treatments and is easy to tolerate.  I had one installed in early 2007 and still have one sitting in my chest.  It is not a problem and since one never knows what mel will do, I just leave it there incase it is ever needed , especially since I am not NED.  I wrestle with my grandkids and have no problem. (A 6 yr old granddaughter just jumped on my neck and is kicking my chest, no problem.)   It was tender for about the first week.  It is recommended that it be flushed monthly, but I have gone up to6 & 9 months without it being flushed in the past coouple of years.  It has flushed fine when they have checked it.  I would not expect any problem from use of the port.  It can be removed after the trial is completed if he would so like.

I'm me, not a statistic. Praying to not be one for years yet.

I lost my "N".  

So far "No" one can tell just who the Interferon will help.

I'm me, not a statistic. Praying to not be one for years yet.

Some of us who did interferon and were stage IIIC get a little tired of our treatment choice being bashed, as in "losing the lottery.  Our treatment choices are few and they suck.  Interferon doesn't work for a large number of people and it can only delay recurrence.  The side effects can be terrible.  The side effects of ipi can also be terrible and for a small number of people it can extend your life by an average of LESS THAN 4 MONTHS.  It all sucks doesn't it?

I also love it when the people who progressed to stage IV come on and tell us why they didn't do interferon.  It's not exactly a good argument for the pros and cons of the drug.  All ANY of us can hope for is to delay, delay, DELAY since we sure as hell don't have a cure yet.

Good luck to your husband.  I hope he's in the small number of responders no matter what he does.  In the meantime, I wish the treatment bashing would stop.  Those of us who were told we had a 27% chance of living 5 years and an 18% chance of living 10 are sometimes amused by it, but more often dismayed.

DebbieH, stage IIIC, NED over 10 years after interferon

You "love it when the people who progressed...."!!!  Nice!!  Seems the rest of us are advocating for better treatment options for folks who are lucky enough to remain stage lll...since there were little to none for us when we WERE....and as there  REMAINS next to nothing for folks who are now!   Interesting....and sad. PS Most data gives interferon a 10% improvement in 5 year survival.  Check the numbers for yourself.  I also firmly noted that all treatment choices are complicated and highly personal.  I would NEVER bash someone's choice....though you are clearly bashing mine!  Some folks are lucky enough to live for 10 - 17 years with no treatment beyond the removal of the initial lesion.  I think people come to this board to acquire data and resources...and to hear opinions (not that you will like or agree with all of them).  Giving your own testimony shouldn't have to be treated with such bitterness and sarcasm. Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Oh for God's sake - read for content.  I said I love it when they progress and come on to tell us how THEY wouldn't do interferon.  I've been here a long time and have never bashed a treatment.  I have often told people of the many who just watched and waited who are doing well now.  Believe me, I know the numbers on every treatment out there.  They suck - every single one of them.  You don't need to tell me how personal treatment decision are but I get tired of hearing the bashing, which I wasn't doing.  I've always hoped for better treatments but we sure as hell haven't seen much improvement in the past 10 years.

Debbie, I'm not sure she was referring to your post, even if her post is under yours.  I do tellI do things, I do not say that anyone is automatically wrong for what they believe to be the best chance for them.  Charlie and I have both wanted non-standard things done for us.  Was it our believe i what we wanted, was it the actual treatment that made the difference?  Hard to be absolutely sure.  I will state my  reasons for doing what i do.  I do not knock others for what they believe is correct for them.  If mental attitude can help, more power to it.  My daughter believes that my attitude is one of the reasons I am still here.  I even had one of the top Oncology doctors/researchers in the word tell me that what I wanted to do in 2008 was not ready for primetime.   I did what I felt was correct for me.  Is that why I am still here?  Who knows!

  We all do what we feel is the best option available to us at the time and still wish we had even better options.  One of the biggest problems is that no Oncologist nor patient can be 100% sure of the correct thing for ourselves, much less for others.  I do not think that most people here intend to actually cut others, most just tell why they thought the way they did and tried what they did.

I'm me, not a statistic. Praying to not be one for years yet.

I wrote the above before I read WOW.  Yes Bubble's appears to have mis-understood the intent of your words. I hope you both understand that each of you contribute things that neither Charlie, Jimmy nor myself can contribute.  I cannot help anyone with details about the PD1 trials, I cannot give anyone a realistic hope that they will not go from stage III to stage IV based on my own experience.  We each have seperate, but valuable experiences to share with others fighting this disease.  Debbie has bee helpful to many people over the years and I have not seen her being mean spirited to others.  I hope you will drop any anommosity and both continue to help others that need your input here.  GO FOR THE GOOD.

I'm me, not a statistic. Praying to not be one for years yet.

Donna,

I have just joined the Melanoma.org.  I was diagnosed with Stage IIIc 2 months ago.  I am a 49 year old male and healthy other than the m-word.  I too will be on the trial that your husband is on if my pet scans and mri come back clear. I had surgery 4 weeks ago for a lymph node dissection under my right arm.  I don't know which arm I will get until next week.  I am hoping for the ipi.  If I draw inteferon, I will try it and see how my body reacts.  I am hearing that it only has a 10% response rate.

My prayers go out  to you and your husband.

Everyday is a Gift so Fight Strong, Live Long