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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Tim--MRF's picture
Replies 9
Last reply 6/10/2016 - 9:47pm

ASCO is now over and I thought I could provide a few more updates. As mentioned in an earlier post, this year did not include any major breakthroughs for melanoma. Still, the news is positive.

Five years ago the median survival for Stage IV melanoma patients was 10-11 months. Data at this meeting showed that patients treated with the BRAF/MEK combination (either dabrafenib/trametinib or vemurafenib/cobimetinib) have a median survival of just under 3 years. Similar results are found with patients treated with the anti-PD1 drugs pembrolizumab or nivolimab.  For both groups, a subset of patients live far beyond that.

The highest response rates are with patients receiving anti-PD1 and anti-CTLA4 (ipi/nivo). We don’t yet know what the median survival will be with these patients, but it will likely be longer. The issue is that many patients have to stop treatment because of side effects. A new study is looking at pembrolizumab plus ipi, but using ipi at a lower dose. The ipi/nivo combination uses ipi at 3mg of drug per kg of body weight. This new study is at 1 mg/kg. The results look comparable to what is seen at the higher dosage, but the side effects are lower. The data is still new but are promising.

The big question is whether to offer BRAF/MEK first or immunotherapy first. The answer, it seems, is that it depends. The researchers who have focused on immunotherapy push for using it first, but for some patients targeted therapy should be first. Many doctors use targeted therapy when the patient has a lot of tumor or rapidly growing disease. The idea is to use fast-acting targeted therapy to slow things down and then transition to immunotherapy. This may not be the best strategy, however. Patients who do best on targeted therapy have lower LDH and fewer metastases. A lot of work still needs to be done, but the field is beginning to understand how to evaluate patients so as to tailor care for their specific situation.

The clinical trials for immunotherapy generally excluded patients with uveal melanoma. I heard a presentation that looked at a small group uveal melanoma patients treated with anti-PD1 drugs. The results are not very promising, though include some indications that a sub-group of patients might do fairly well. Cutaneous melanoma has a very large number of mutations, more somatic mutations that any other cancer. Uveal melanoma, in contrast, has very few mutations. This may explain the challenge of having immunotherapy work in this area.

I met with a company that is developing an IDO inhibitor. Some tumors release IDO, which starves T-cells and prevents them from attacking the cancer cells. This drug blocks the function of IDO. The company is particularly interested in combining their IDO inhibitor with an anti-PD1 drug. This combination might give the higher response rates seen in ipi/nivo but without the side effects.

Another company is working specifically with patients whose tumor has an NRAS mutation. They have a MEK inhibitor that seems to be effective in this group, about 20% of the cutaneous melanoma population. Currently no targeted therapy is available for patients with NRAS mutated tumor, so this could be a good advance.

Finally, a lot of conversation is happening about “value” in cancer care. The driving factor is the cost of cancer drugs. Globally we are seeing countries that will not provide the newer drugs because they are expensive. This leads to a conversation of cost vs. benefit. This conversation is most often tied to the price and the quality life-years that the price provides.  A number of agencies have developed what are called “value frameworks” with which to make that evaluation.

The problem with all of these frameworks is that the patient perspective is not considered, or at best is considered only marginally. People are not numbers, and the care of people cannot easily be priced out in terms of days and years. Value varies from patient to patient. I heard of a young person who wanted to be treated with ipi instead of an anti-PD1 drug because if ipi worked they would be taking 4 doses and then be done with treatment. Anti-PD1 would be ongoing infusion for months or years. Some people want to go through anything and everything if it will buy them a few more months. Maybe they want to see their daughter get married, their son go off to high school, or experience a few more months of retirement. Others are not willing to go through potential toxicities and prefer to simply live out the time they have left. The MRF and other groups are pushing to be sure the patient perspective is part of this conversation. We are recommending convening panels of patients to provide input as the value discussion happens and as the frameworks are developed.

My overall perception of the meeting is that we still have a lot of work to do, but progress is still taking place. The feeling among melanoma doctors and researchers is definitely positive. I commented on the fact that we didn’t have any big news this year and one person replied, “I think it may be 2018, but more big news is coming.”

Tim--MRF

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heatherrenee_c's picture
Replies 7
Last reply 6/13/2016 - 11:05am

Hello,

I had a mole removed and biopsied last Thursday. My dermatologist called yesterday and told me it's melanoma and rated a Clark Level 3.  I meet with a surgical oncologist tomorrow and will get more information then, but am feeling anxious not knowing anything about this.  The mole was on the upper back portion of my left arm.  She said they will biopsy more of the site and possibly biopsy my lymph nodes.  I didn't even know what questions to ask her yesterday, but feel prepared to ask the surgeon a lot of questions tomorrow.  How long typically from the original diagnosis do they determine what stage it is?  Is Clark 3 bad?  Any info you may be able to share is appreciated!  I'm trying to stay away from google searches so I don't get ahead of myself without more details, but ran across this site when looking for information about Melanoma in general.  Thank you!

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Charlie S's picture
Replies 5
Last reply 6/15/2016 - 11:49pm
Replies by: desertsun, JoshF, jade1111, Anonymous, Bubbles

In 1987 I was 36 years old when I had my first knife fight with melanoma and came out with the lump under my arm ended up being  diagnosed Stage 3 Melanoma with a unknown primary .

That lump , which was a lymph node was surgically removed with a bunch of others and  well............there I was.

Surgery did it.  No further problems......................until.

Nine years later a lump in my chest.

I do not have a patnet here anymore due to security concerns.

Here is the long and short of everything.  

I am now 65 and my scans yesterday  say nothing bigger, nothing smaller and nothing new, but melanoma is inside of me.

I think, I lose track, it has been seven or eight  recurrences for me.

Anyway 26 bags iof IL2 under my belt last month and Monday going for more.

Jeeze, half of my lifetime suffering from melanoma.

I want to give hope,  I want to empower.  I want to educate.  I want to question I want to support, I want to live and I will decide.

And if any post by me have pissed people off, here is quote from an old Simon and Garfunckle tune the Sound of Silence

"Silence like a cancer grows"

I have enough problems, so the last thing I am going to do is shut up about my opinion and approach of how to kill that no good dirty rat bastard melanoma.

Maybe not a cohesive post, but I think I got everything in.

 

Cheers,

Charlie S

 

 

 

 

 

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Anonymous's picture
Replies 5
Last reply 6/10/2016 - 4:58pm
Replies by: ECTechnology, Anonymous, Janner
I went in for a skin check at a dermatologist, I haven't had one for about 3 years. I'm a 34 year old male, grew up in Australia and now live in the U.S.
 
The person who did the check (a Physician Assistant?) identified a small, 2 mm, mole on my back that looked suspicious. He was not concerned, but wanted it biopsied to check. I went back for the biopsy with the dermatologist on the same day.
 
The dermatologist removed it and said it's 50/50 whether it's melanoma, but if it is, we most likely caught it early. Here is the mole: http://imgur.com/G4bzIVM
 
The thing is, the order called for a 5(?) punch biopsy, but the nurse stuffed up and handed him a 4, he only realized after but told me it should be fine as he didn't "think it was very deep".
 
I'm freaking out a little that I have melanoma, and that the biopsy might miss it because of this mistake. What does this 4/5 mean? Any help or reassurance would be great...
 

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Replies by: Kim K, Anonymous, jennunicorn, MoiraM

Dear friends,

I have a question if anyone have some information or experience Yervoy's side effects on fertility.

I am 40 years old- diagnosed 1 year ago stage3 spitzoid metastasic melanoma. My left grain lenf nodes were removed. I did 1 year interferon treatment- INTRON pen. Thanks god that my Pet CT and MRIs are clean. My oncologist suggested 3mg/4 dose Yervoy treatment for protection. I wonder if anyone got pregnant after Yervoy. 

I can not decide to do the additional Yervoy treatment because we were just married and planning to have a baby before I was diagnosed. Any comments or experience sharing much appreciated. 

Many thanks and take care..

Ekin

P.S. Anyone who has specific questions on interferon treatment can reach out to me from  here or my e-mail below. I would be happy to help based on my experience ( ekin.erim@sap.com

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/8/2016 - 4:56am
Replies by: Kare83, Janner

Just asking where I should be checking.. at last check up the Dr didnt check..I didn't realise until Iwas half way home.

Is it my upper neck/under my ear area I should be checking?

Or around colarbone region/ under arm?

I had a Melanoma removed from my shoulder blade.

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Kimba67's picture
Replies 13
Last reply 6/13/2016 - 10:53am
Replies by: Kimba67, FrankB, jennunicorn, WithinMySkin, DZnDef, Anonymous, MoiraM

Hi peeps, I am new here, trying to calm my crazy with a little support from you guys.  I have T2B (Stage II).  I am scheduled for more removal the and of this month as well as removal of Squeamish Cell Carcinoma below the site, lymph mapping and biopsy or removal of lymph under my arm. 

My father has had several bouts with Melanoma and I was warned about this particular mole in 2003, but like an idiot, never moved on it until this year.  Not sure what motivated me this year, but I did.  They removed the mole, but didn't get it all.  It was coned and in the dermis.

 

My family has been very supportive, but I don't call them with my petty thoughts because I don't want to upset or worry anyone.  Meanwhile, here I sit...casting my fear, anxieties and ...well...I'm scared to death given the time I neglected the warnings that I am beyond stage 2.  My BP was 187/124...during my pre-surgery work ups...they had a cow (rightfully so) and I have had to work extra hard to get that down below 150 systolic before they will do surgery.

I have only told family and asked to keep the social media out of my life.  I don't know what I am wanting from anyone, but maybe if you know where I am or what my little brain is doing to me...I would appreciate some insight.  I'm feeling very alone and the closest family I have is over an hour away, but I tend to be kind of an Island with anything other than sunshine for everyone else.  I just get tired of being the sunshine and have found myself sleeping more, hibernating, just breathing in and out.  I can only imagine it is a little depression setting in, I have a strong relationship with my God and to be honest...that has been my only connection right now. 

It really just chaps my butt when people say "oh, you'll be okay"...I mean, my DR. can't even say that yet...I know they mean well...but Dear Lord, don't they realize minimizing this to the PT is not only thoughtless, but rude?  I might be a little hard on people...I don't know.  Common sense should come into play at some point (I would hope).  So Here's to hoping I stay at stage II!

 

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Maria C's picture
Replies 21
Last reply 6/14/2016 - 10:08am

Hi all & sorry for dropping off the boards in between "scares" - time seems scattered lately and it passes in disjointed ways...

It has been about a year since my diagnosis of mucosal melanoma with brain mets, and tomorrow I go for the  results of my latest scans (MRI + CT). I've been through all 4 ipi/nivo treatments, dealt with a whole host of unnervving side effects, and then took a break when my last set of scans came up NED. But 2 months later, preliminary results show progression in the brain again, and I've been feeling "off" for weeks - off balance, faint sometimes (especially when I stand up after sitting for awhile), ringing in the ears, etc. 

Tomorrow is my appointment with my oncologist to hear what the new plan is, but I am quite nervous. One big worry I have is whether gamma knife (which I've had twice so far) ALWAYS works...is it possible for brain mets to dodge that big zapper? Has anyone heard of melanoma brain tumors being resistant to gamma knife treatment?

Many thanks in advance as always for the support & wealth of personal & specific experience shared on this board...am so thankful for this community!!

 

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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stevecathy's picture
Replies 4
Last reply 6/7/2016 - 4:10pm

My husband was dx July of 2015. Mel of 4th toe , ampution of toe , lymph node direction groin. 4 total nodes positive. Had yerovoy all 4 infusions then had Mets in transit on thigh. All removed, then started mekinist and taflinar. He suffered from fever and chills bad , reduced dosage twice. Before starting mek/taf scan showed nodule in lung measured 2-3 mm ,and lymph node by heart was large . Now today's scan shows improved, nodule 2mm and lymph node smaller. So continue mek/taf but reduced to 75 mg twice day instead of 100mg. I've been researching nodule in lung being so small . What I've read of under 2 cm it's likely to be benign. He's is 2 mm. I'm curious of thoughts , wondering if going overboard with mek/taf and not giving yerovoy a chance . His is treated at ctca. We love them but my mind is getting the best of me wondering if he is getting toxins that maybe not needed. Please , welcome any thoughts and advice. Thank you

Cathy Jewell

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I've talked to doctors. I have talked to nurses. I really, really want to talk to someone who has long-standing damage to their anterior pituitary caused by ipilimumab-induced hypophysitis.

I've been dealing with this for a year now. I have made progress. I no longer feel terrible. I no longer feel exhausted. I do, however, have zero tolerance for stress.

I used to love my stressful job. No longer. I want to check out whether there is a medical reason for my inability to cope with stress and whether it can be tackled. If not, it will be goodbye to the job with its life insurance policy and excellent pension benefits.

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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G-Samsa's picture
Replies 9
Last reply 6/7/2016 - 7:00pm
Replies by: Charlie S, Tim--MRF, Ed Williams, Polymath, Bubbles, Anonymous

In response to Charlie's comment about the somewhat strange concern expressed at ASCO about how the success of some of the new immunotherapies to offer viable treatment may be a worrisome disincentive for participation in trials.....Unfortunately, I have to say "fear not"--with more than half of the patients not responding there should be a sizable (and hopeful) population looking for the next breakthrough drug (especially if trial protocols can be defined to include non-naive patients!)  My MM began to progress after three year successful run on Ipi/Nivo (as part of a trial) and I can tell you that for all the advances once you fail the combo the treatment landscape looked bleak.  I am currently stable after a life raft TIL treatment in November.  My worries center more on any reticence on the part of drug companies to develop new next stage drugs until the current generation has earned the expected profits ( hasn't BMS bought the company developing IDO inhibitors?)  As a MM patient I have learned to keep an eye out for the next new thing-/I for one would love to know that IDO, OX40 and some other promising molecules were approved or available in innovative trials-- and would be willing participant in a trial (out of self-interest) if it comes to that.  

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/6/2016 - 10:06am
Replies by: Bubbles, Patrisa

Is there any evidence or has it been studied if people who durably respond to immunotherapy drugs are at a decreased risk for other types of cancers since their immune system has been ramped up?

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jahendry12's picture
Replies 3
Last reply 6/9/2016 - 2:36pm
Replies by: jahendry12, Anonymous, JuTMSY4

Hi everyone. Hope this evening finds you well. 

Question. My husband has had 7 keytruda treatments. After the 7th, he started experiencing diarrhea and it continued until he was suppose to have his 8th treatment. He's on steroids and it appears to be improving. He also has a rash on his arms, legs & shoulders that started after his 6th treatment. We just started noticing vitiligo as well. Anyone else experience these side effects?  If you experienced the diarrhea, did you continue treatment once it resolved and did it reoccur once treatment started up again?

i know everyone is different, but wanted to hear others experience. 

Thanks in advance.

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JohnA's picture
Replies 4
Last reply 6/6/2016 - 8:37pm
Replies by: keepthefaith11, JohnA

My wife has had 2 cycles of Ipi+Nivo and now has had a week of random fevers that don't seem to respond much to Tylenol or Ibruprofen. Her fevers range from normal to 102 or higher (even 104), and can change within a few minutes.

After 2 ER visits, it looks like she is neutropenic and has an overactive Thyroid gland. I've seen others post on thyroid trouble from Ipi-Nivo, but nothing on random fevers.

There are some endocrine tests still out and they are scheduling her for a CT to check more closely for infection (as a source for the fever).

Question: Does anyone have any experience with random fevers such as these?  Docs are having a hard time figuring out what is causing them and how these relate to neutropenia.

Thanks everyone -

 

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Tim--MRF's picture
Replies 9
Last reply 6/8/2016 - 12:33am

I am attending the annual meeting of the American Society for Clinical Oncology--a gathering of about 40,000 cancer doctors and practitioners who come together to discuss the latest research. The schedule is packed from early morning to late night (I finished my last meeting at 9:30 last night and attended a session at 8:00 this morning!). I thought I would offer a few comments here, and hopefully other updates over the next couple of days.

For many years ASCO was depressing for the melanoma community because of no progress at all.  That changed in 2010 with positive data for the first time ever, and since then we have seen great new advances at every meeting. This year is a bit different. Nothing major is being announced, but instead we are seeing some consolidation of data around the new therapies that have come online since 2011. Still, I have heard some interesting information. 

We continue to see very positive results with the "ipi-nivo" combination, but also see a lot of toxicities. Memorial Sloan Kettering reported that 61% of patients had to stop treatment because of side effects. And this is at a center that has a great deal of experience and expertise at managing these drugs. The concern is not for those patients at centers like this, but rather how well doctors who have very little experience will manage patients on this treatment.

I was surprised to see another report showed that showed doctors could use immunotherapy on patients who have autoimmune disease. I had suspected that ramping up the immune system in a patient with autoimmune disease would cause huge problems. The team that reported this data showed that while challenges did arise, they were largely manageable. That is good news for melanoma patients with lupus, arthritis, etc.

We are seeing more data that the anti-PD1 drugs (Opdivo and Keytruda) work in mucosal melanoma, though not nearly as well as they work in cutaneous melanoma. Clearly more research is needed in the mucosal and acral melanoma space.

And, this morning I heard a report combining the results of many different trials involving interferon. The presenter looked at Stage III patients who had all their tumor removed. Some received Interferon and others didn't . The Interferon group remained cancer free-longer. This was already widely known. This data showed, though, that the difference in overall survival at 5 years and at 10 years was about 3%, with the Interferon group doing better. Further analysis compared patients whose primary lesion was ulcerated vs. those whose lesion was not ulcerated. The survival benefit only applied to patients whose tumor was ulcerated.

Last comment (for now). The best melanoma doctors are all saying that we can have very good outcomes for at least 40% of patients with metastatic melanoma. One even said we can cure 35% of patients. The challenge remains of how to expand that number so we can have good outcomes for every patient. That progress can only happen through clinical trials. With several good drugs now on the market, researchers are concerned that patients will not agree to go into a trial and progress will stall. This is worth a great deal of thought.

Tim--MRF

 

 

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