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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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 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 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 [3mg/kg] 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
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.




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Dear friends.. I need your opinions since we have to decide how to proceed tratment for my father. He has mucosal melanoma, secondary mets to liver. Had 6doses of keytruda, and 6 doses of DTIC. Since last CT showed progression doctor says:
I recommend to add low dose interferon-A subcutaneously (i.e 3 million units three times weekly to begin with) to his current treatment with Dacarbazine. He could start dacarbazine this coming week. Interferon also stimulates the immune system. Alternatiively he could add interleukin-2.

I know this is older drug, in my country all new is unavailable :-( What to expect from interferon? I'm really very scared and confused :-( Thank you all!!!

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sheephead1231's picture
Replies 9
Last reply 6/9/2016 - 7:35pm
Replies by: DZnDef, MoiraM, sheephead1231, Anonymous, youngann

I have had a hard mole on my head for at least 4-5 years. It is red and is probably 1/4 of my index fingernail in size. It is hard, and has been since I remember it. If that mole were to progress to stage IV would it take less time than 4 years? Also, would the mole increase in size if it was nodular melanoma. It has never increased in size, or colour but very recently it did scab a bit because I rubbed it pretty much consistently for about 3 days.

I should also point out it has had an almost identical friend about an inch away on my head for the same amount of time.

So main question is would nodular melanoma definitely grow in some noticable way before it killed you? I ask because I have been having some pretty heavy systemic symptoms. Such as orange urine, lumps all over rib cage and weight loss.

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Christine.P's picture
Replies 3
Last reply 6/6/2016 - 12:53am

This may be kind of a dumb question, but will a PET scan pick up melanoma on the scalp? I am stage 4a and just had my quarterly PET scan (it found a new lesion on my leg above the primary site I had removed last August) but have been noticing some sore spots on my scalp the past month or so. I have a friend who is going to take a look at these spots for me and will mention them to my doctor at my next infustion on Tuesday. It seems like the PET would have found anything unusual on my scalp, but wanted to see if anyone has experience with this. 

Thank you all!

Christine P. 

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Belah's picture
Replies 6
Last reply 6/6/2016 - 1:01am

We are having a hard time with side effects. My husband is stage 4 with smallish Mets in his bones, liver and spleen. He was on Braf and mek inhibitors which caused pretty severe side effects.

Now he's on opdivo. He's lost a lot of weight and is struggling to keep any fat at all. Now he gets very short of breathe when walking and today nearly passed out from being in the heat (just from walking from the car into a store.)

It's hard watching him go through this. The doctors here are a joke. He goes to MD.Anderson when we can actually get there. (August is our next trip.)

So I feel like I have to treat his symptoms. And I have no idea what to do. He is 30 and walks like a frail old old person. I don't know if it will ever get better, but I can tell you, the moral is dismal. Can ANYONE who has gone through any of the symptoms, shed some light on what they did. Or give me any insight as to what a caretaker can do.


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Anonymous's picture
Replies 3
Last reply 6/5/2016 - 10:24am
Replies by: Anonymous, jennunicorn

It's very hard to tell so just look for another opinion with a clearer head than me!

This is 2 months ago

This is today

Also what type of mole do you think this is?

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cstearns's picture
Replies 9
Last reply 6/5/2016 - 5:59pm

Wow! This is happening fast. I'm Pharmacist and helping a friend with just Diagnosed Stage 4 Melanoma; He is not medical knowledged and I am not with Melanoma, but reading vigorously to catch up.     We live in area of general oncologist not specialist in Melanona.  I read he has much better chance now to get aggressive with newer immunotherapy treatments.  We are equidistant from La and Bay Area.  We are not familiar with staying at centers focused on Melanoma and looking for how to set him up for aggressive treatments. He has good insurance, FYI.   Thanks for your thoughts....Charlie

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Anonymous's picture
Replies 22
Last reply 6/18/2016 - 12:35pm
Replies by: Anonymous

I have no diagnosis of any skin cancer. A few days ago, when I got out of the shower there was an itch on my skin under my left forearm. I looked down, and saw this weird reddish bump where the itch was. I wondered if maybe it was allergies and thought that wow this is one heck of a reaction. The itchiness has subsided over the past few days, but the weird bump is still there.


Location: Under left forearm on skin.

Size: Nearly the size of a U.S. penny on one side (19.05 mm), and shorter on another side.

Shape: A kind of irregular elliptical shape, asymmetrical. Some concave areas.

Color: A generally reddish color, with a more pinkish color near the border on one side. A few dark specks that I guess are dead hair follicles.

Feel: Still a little itchy. It is raised above the skin.

Relevant features: I am light-skinned with natural blonde hair.

Picture: Not very good, as I don't have a camera other than my big heavy laptop, but the bump should be clearly visible.

I'm going to walk in to my doctor's office today, as they have walk-ins on Saturday. In spite of the lack of dark colors, my fair features make it still cause for concern. The abrupt development of this "bump", its persistence, and its characteristics have me concerned.


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