MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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ADSCLT's picture
Replies 5
Last reply 3/31/2011 - 10:38pm
Replies by: ADSCLT, lhaley, MichaelFL

Hi Everyone,

 

I've been reading post often since my father was diagnosed in November, 2010.  We recently found out he has 6 brain mets, most are small but one is larger located on his brain stem.  It caused his eyes to cross and his vision is very blurred.  His last WBR is tomorrow.  We also see the Chemo doctor for the first time tomorrow to find out our options.  I have no idea what to ask.  I've researched RG7204, IPI, and other treatments.  I don't know what my dad will qualify to take.  Any advise will be appreciated.  We are in Charlotte, NC.  Thank you.

Give it all to God.

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PeterO's picture
Replies 5
Last reply 3/31/2011 - 6:36pm
Replies by: LynnLuc, Anonymous, Janis B., jim Breitfeller

It’s interesting to consider the paradigm shift occurring in therapy for MM. The FDA approval of ipi raises many questions in my mind (as stage IV m1a), so perhaps others will offer their thoughts on them:

  1. Is ipi likely to replace IL-2 as first-line therapy for most patients? It seems to be less toxic and offers a higher rate of durable remission.  Is that correct? It’s my understanding that IL-2 never reached phase III trials and thus its impact on OS has never been quantified. True? So is it only anecdotal evidence that suggests durable remissions for a small percentage of IL-2 patients? Anything published on that?
  2. Reimbursement for ipi is the next big hurdle. It seems BMS set an extremely high price point knowing it would have to negotiate the price down with the formularies. Any reason to think this process won’t take many months given what’s been happening with Provenge? In the meanwhile, are compassionate use trials with ipi permanently closed? What happens to those who need/want ipi but can’t get into a trial and clearly can’t afford self-pay? Will BMS pony up until Medicare and the insurance companies make a judgment?
  3. Is there drug trial data that shows higher effectiveness for ipi at 10 mg/kg vs. 3 mg/kg? Does higher dose affect the rate of durable responses? Do FDA guidelines allow higher dosages?
  4. The assumption seems to be that BMS will now sit on its trials of anti-PD1 agents, which I’ve heard showed promise in phase I—higher response rate, lower toxicity. Are there other companies developing similar agents that might therefore accelerate their trials for melanoma patients?
  5. What other agents are there in trials that might ultimately replace current first-line treatment options? What about the tyrosine kinase inhibitors? Any way of judging their prospects?
  6. Any hope for OncoVex being a reasonable treatment options for m1a’s? Where is it in the development pipeline? What would it take for it to become competitive with ipi for those with sub-qs only?
  7. Sorry, I can't resist: Does anyone know how much BMS execs are paid?

Lots of questions. Anyone with informed answers? Thanks. 

www.theogler.blogspot.com

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MaryMary73's picture
Replies 6
Last reply 3/31/2011 - 6:08pm

A girl I work with knows someone who passed away this morning from melanoma. She isn't sure if it was nodular or superficial spreading but apparently it was quite deep at diagnosis and ended up spreading to her brain quite quickly and eventually her spine and bones. She was 36 years old and a lifelong sun-worshipper. She leaves behind 2 young teenagers. So flippin' sad.

What drives me insane is the fact that we work at an insurance company that handles group Long Term Disability claims. We know all about cancer yet I have some coworkers who are actually SURPRISED that skin cancer can be deadly.

The only real wisdom is knowing you know nothing -Socrates

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Jan in OC's picture
Replies 8
Last reply 3/31/2011 - 2:07pm
Replies by: jhoey, Jan in OC, Anonymous

Hi everyone, 

I need some advice. My husband has had the worst itchy rash since his third infusion of IPI.  His skin turned really red all over (like a bad sunburn) and feels all bumpy (he says it's gator skin).  The doctor gave him a small dose of steroids, but had to increase it after a week and a half of no results. The rash has improved somewhat, but he still itches like crazy.  We are supposed to go for his 4th infusion tomorrow, but the doc has said he may not give it to him due to this reaction.  Also, the spots on his side have all increased in size and new ones have appeared.  He is really worried that the IPI is not working due to the steroids.  Has anyone gone thru this?  Has anyone had to stop IPI before all 4 infusions?  We don't have a lot of options if he fails this. He has already tried Interferon/BRAF.  Has brain, liver, lung, kidney mets.  Any input would be appreciated. 

Thanks,

Jan, wife to Dirk

laughter is the best medicine

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NicOz's picture
Replies 4
Last reply 3/31/2011 - 6:57am

For your help in getting me to see a decent Onc for the first time in 3 years :) AND for your support in the consult & for taking several hours out of your day. You're an angel- but I already knew that xxx I'll get the histopath, MRI & bloods within a week & fingers crossed to get on that bloody trial asap :) xxx again!!!

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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KatyWI's picture
Replies 7
Last reply 3/30/2011 - 11:27pm

My oncologist sent out a tumor sample for BRAF testing (I was negative).  My EOB came back denied as "not medically necessary."  As far as I can gather from talking to the insurance company, the bill is coded as genetic testing, and they only cover genetic testing for a few very obscure conditions (none of which I have!)  Has anybody had any luck appealing in this kind of situation?  What was your doctor's argument that it should be covered?  I have BCBS of GA (yes, despite living in Wisconsin.  Beats me how that works.)

KatyWI

Just keep going!

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Tim--MRF's picture
Replies 5
Last reply 3/30/2011 - 10:28pm

Genentech has just opened a study for people who have taken the Plexxikon/Roche/Genentech BRAF inhibitor, also known as PLX 4032.  This study is a combination trial using PLX plus a MEK inhibitor.  Some folks from this board have been in the BRAF/MEK trial being run by GSK, and this new trial is similar.  One criteria, though, is that you must have taken the Plexxikon drug and have developed resistance to that drug.

Currently three sites are open:  Dr. Gajewski in Chicago, Dr. Ribas in UCLA, and Dr. Gonzalez in Denver.  Four more sites will open soon.  You can go to this link to find out information about melanoma relevant clinical trials, including this one:  http://www.emergingmed.com/networks/MRF

Tim--MRF

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Anonymous's picture
Replies 2
Last reply 3/30/2011 - 9:42pm
Replies by: MichaelFL, Janner

Hi everyone.

I have had mm in-situ, have hundreds of moles, sibling had mm in-situ- so I am high risk.

I see derm every 6 months and have had probably 50 + moles removed, most mildly atypical, some moderate, and one severe.

I just had a very normal light tan freckle thing removed from toe which came back moderately atypical, which was surprising.

Anyways, I am on edge again because I have so many strange looking moles.

I had photos taken in 2002 (4x6's) and then again in 2009 (Very large ones-- much better)

My question is-- I have now discovered probably 10 moles that have really changed since my 2002 pics, but NOT since my summer 2009 pics.

The change is obvious-- darker or just more irregular, but not horribly extreme. In other words- none went from being a spec to now 7mm!

They are all still small (less than 4mm) but maybe just darker, one has a little brown spot, another is darker and also looks almost like two moles attached.

Botttom line, none look too sinister, but clearly my body makes atypical moles that do look very atypical

Do you all think I should be just concentrating on my most recent pics (now almost 2 years old) and monitoring change from there, or removing all that have changed from 2002? Is it normal to have some chage over 9 years? (I have had two kids since the first pictures) so I imagine the hormones plated a huge part.

Thanks for any advice. I am really getting worked up and can't even keep track of rhat I should deal with first!!

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/30/2011 - 8:40pm
Replies by: KatyWI

Hi,

I have a friend in yervoy/IPI compassionate expanded use trial. She finished 2 infusions. Does anyone know if the 3rd & 4th infusion will still be free  through the trial. She contacted BMS and no one will give her an answer.

Anyone out there in this yervoy/IPI compassionate expanded use trial that knows how is BMS is handling payment (or FREE) for those who have not finished their 4th infusion of IPI of this trial. The study nurse at her location site did not even have the answer.

Thanks for posting your reply

gayle

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HarryObrian's picture
Replies 1
Last reply 3/30/2011 - 1:21am
Replies by: JerryfromFauq

One of the interesting things to note about this article "http://www.businessweek.com/lifestyle/content/healthday/651283.html" is the mention of the molecule CTLA-4 and it's role in suppressing the immune system. For years the supplements resveratrol and curcumin have been touted anecdotally as supplements for cancer patients, with curcumin specifically linked to aide in melanoma suppression, "http://health.usnews.com/usnews/health/briefs/cancer/hb050711a.htm". However it has been found that both resveratrol and curcumin are immunosuppressants and upregulate CTLA-4,"http://www.ncbi.nlm.nih.gov/pubmed/17177975".

These conflicting articles, both from 'authoritative' sources, either demonstrate the still unknowns of medicine or they each serve their own unexposed commercial purpose and raise questions similar to "Why would a melanoma research hospital find that curcumin, a known CTLA-4 upregulator, actually suppresses melanoma while the drug industry's friend, the FDA, approves a drug, with serious side effects, that is designed to interfere with CTLA-4?". While CTLA-4 is obviously an immunosuppressant is it really the true culprit of melanoma's progression? 

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carol b's picture
Replies 10
Last reply 3/29/2011 - 9:58pm

I got a wonderful response from the IL2. The first week I could only do 9 bags of the drug. The 5 days i had to recover were not enough. i went back n got another 6 bags. Its all my body could handle. My heart rate bottomed out both times. But my Doc says i done good. He had only hoped I would get at least half of the 28 bags that ya need to fully get the effect of IL2. I got 15 bags so he was happy. To me it was horrible but totally worth it. My 3 tumors in my neck have disappeared. Well they aren't budging out anymore. The huge one under my arm is about half its size now. Maybe 2 inches wide compared to around 6 inches. We are excited about IL2 working. Doc says im not out of the woods yet but at least it is working. He says my on immune system has kicked in and i should be seeing the tumors shrink even more as the days pass. As far as being back to self after 2 weeks, it didn't happen for me. Im into my fourth week at home and just now feeling some sort of normal. I was extremely weak when i got home and couldn't eat because of nausea, even though i had meds for that. Everything liquid tasted like tinfoil. I realize now i should have listened to you guys on here when you said DRINK water water water.. ..... I took most of every ones advice with me to the hospital.. I Thank God for you all. Even with all the love and support i had with my family and my caregivers{ husband and sister} I would not have gotten thru the IL2 without your words of wisdom and the strength that you all have and for that I Thank You All. Words cant express how much I feel for you. One bit of advice to a caregiver out there, force liquid at all times even if its just a sip. Being dehydrated and the IL2 is not a good combination and no the IV is not enough. And one more thing, if ya see the patient acting weird or saying wired thing or are seeing things notify someone immediately...It can become permanent if not acted upon. Luckily for me my hallucinations were pink fairies and butterflies it could have been the exact oppistie.They continued for about 2 days after i got home and slowly started fading away. I get a PET scan in May and hopefully it hasnt spread anywhere else. I do another round of IL2 the end of May and im scared to death to do it but i will. I have a wonderful team that takes care of me. I can only say good things about Vanderbilt and its employs. Well thats my update. And once again Thank you all. My prayers are with you all that whatever treatment you get or are getting works and gives you back the HOPE that we seem to lose with this terrible disease.

Carol b

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/29/2011 - 7:43pm
Replies by: MichaelFL

Is a miotic rate of 2/10hpf considered high or low?  Just curious because I don't understand this part of pathology report.

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IF you are offered "wait and see" or HD interferon, you may want to do HD  interferon for 29 days and then get tested for phosphorylated STAT1 (pSTAT1) .

 Stat1 signaling helps differentiates the Naïve T-cells toward the TH1 phenotype needed to attack the Tumor cells.
 
High pSTAT1 in peripheral blood Tcells of Melanoma Patients may correlate with good clinical outcome in the first 29 days of HD IFN therapy.
 

TH1 adaptive immunity, and immunosuppression suggested that TH1 adaptive immunity has a beneficial effect on clinical outcome.

Bets regards,

 

Jimmy B

 

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Melanoma Rates May Be Higher for the Rich

Study Shows Link Between Melanoma and Higher Income Levels

 

http://www.webmd.com/melanoma-skin-cancer/news/20110321/melanoma-rates-may-be-higher-for-the-rich?ecd=wnl_can_032911

http://www.MelanomaResources.info

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Hi,

The first Oncologist I saw was not to keen on Interferon, was suggesting watch and wait, and going to check with colleague regarding clinical trials.

I opted to meet with Dr. Samlowski (he seems to be the Melanoma guy for Las Vegas) personally. I'm glad I did-he was very informative and much more comfortable discussing melanoma, statistics and treatments (not that I remember everything he said). He is suggesting interferon. The high dose phase for sure, and for as long as I can take take it the 3 times a week injections. He says it's tough, but they will help me get through it. He thinks it for sure prolongs time to progression of disease and therefore it is prolonging overall survival. He thinks in my situation ( Stage 3B with an ulcerated lesion) it could improve my odds by 10-20 percent.  I'm going to quote him he said "we keep running this horse, because it keeps winning". He is also optimistic about IPI-he says he has used it for years and he has patients with years of no progression in their disease. He said a trial is due to open very soon-early April.

After coming home I read all the news of Yervoy being approved (on this board) and happened to read the patient insert (link posted by another helpful member on this board). Yikes!!!! Some of the potential immune related adverse events sound pretty scary. Some irreversible and some even causing death. Tonight I looked up Intron and found some good ones in there as well.

My head is spinning-all the reading I do seems to make me more confused. Is there another choice I should be asking him about? Has anyone done both Interferon and IPI-is one easier than the other? I wouldn't get to choose if I'm in the clinical trial-it's randomized between the two. I meet with him again in a week. I also need to get a brain MRI, my PET scan was negative except for some reaction probably related to surgery and inflammation as it was only 3 weeks post surgery.

From what I have read on here-you have only so much time post surgery to get started on Interferon and some clinical trials.

I have to say though, I think I'm feeling better about doing something vs nothing. I reread my posts and they sound so jumbled up-so many of you post such eloquent coherent words! It has been so informative reading all the posts and I'm so thankful that you all have been so generous with your first hand knowledge about this disease. It is overwhelming, but I'm going to fight it!!

Julie in Las Vegas

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