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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caitybird's picture
Replies 2
Last reply 2/6/2018 - 6:44pm
Replies by: DoubleTT, Boise Steve

I am wondering if anyone out there has been on the seviprotimut-l (pol-103) trial and experienced any side effects. I have 1 more injection to finish my 2 years, have always had skin reaction (my arm looks like a drug addict that doesn't know what a vein looks like), but I've been having chronic stomach/abdominal pain for a year now, nothing helps, also having pressure changes in my head for lack of a better description. Nothing I can find in research mentions side effects beyond injection site; Dr is unconcerned; ct scans show nothing. I'll mention the Dr is not my original, I moved after starting trial and had to find another study site. The Dr I was assigned was a hematologist but left, my replacement is also a hematologist. Lymphedema specialist says maybe its lymphadema; gastroenterologist says maybe its superficial nerve pain. My next step is demanding endoscopy and colonoscopy. But, I have found articles on other immunotherapies that have caused stomach/colon responses due to basically autoimmune response. I just would like to know if anyone else has had any side effects or if I'm just falling apart.

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beeme's picture
Replies 4
Last reply 2/6/2018 - 1:43pm
Replies by: beeme, ABlazek, Treadlightly

I'm not sure if it's too early to write on here. I've had a strange, non-symmetrical mole on my foot for about 2 years. I previously saw a GP who was very dismissive and hardly looked, she just said that moles come and go and people overreact! Two weeks ago I went back to see a different GP and he immediately said it looked concerning and referred me to a dermatologist on the 2WW (2 week wait) pathway for possible cancer.
I can't fault the NHS, I had a hospital appointment this Tuesday and the specialist said it needed to come, that day. So they rang round and found a minor op surgeon who could do it straightaway. Whilst I think it's very impressive and was pleased everything happened so quickly, I'm not sure that is a good sign for how serious they think it might be...

Anyway the surgeon warned me he'd take away about a 2p size excision and it's all sewn up. He said the results would take 2 weeks, but then the specialist nurse said up to 4 weeks - does anyone have experience of how long they tend to take? the surgeon kept saying how much he'd had to take, but he'd got everything worrying. He started off saying 10 days before the stitches could be taken out, but changed it to 18 - 24 days due to the size of the excision. But I can still remember his face and tutting noise when he first looked through the dermoscope.
I'm staying positive, but at the moment I can't really walk without crutches and can't drive. I was wondering if any one had had similar on the sole of their foot and when they could drive? The Dr said I'd know when I'm ready, but it's not doing me any good working from home on my own, as I can't get into the office.

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Annikins's picture
Replies 2
Last reply 2/5/2018 - 11:57pm
Replies by: sister of patient, Anonymous


So my brother (46) was diagnosed with incurable melanoma in October 2017.  Information has been pretty hard to come by from the consultants, and I'm not sure if he's sharing all the info he gets anyway, partly because he's an adult and might not want to, and partly he has mets in his brain so I'm not sure how much he remembers.

He is on trametinib and dabrafenib, and has been seeming like he's doing ok, relatively.  He was more or less bed bound for a while, but has gradually got more energy.  He can't walk far but has a wheelchair and is making it up and down the stairs.  He has been able to spend some time with his two young children, which has been good.

But this week he has become very confused.  Is this a side effect of the medication?  Or maybe a sign that the mets in the brain are growing?  He had some scans last week, but he won't get any results until next week, so I'm just looking to maybe find out what this might mean.  I know no one wants to look negatively, but I just want to be a bit prepared.

Does anyone have any idea what might be happening?


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dmarie's picture
Replies 10
Last reply 2/5/2018 - 8:24pm

This forum has been a phenomenal source of information and I so appreciate your knowledge and experience. I am trying to help my husband make some really important treatment decisions, so I am hoping that some of you who have experience with brain mets who have had either WBR and/or SRS will give me some insight. 

My husband (49 years old) feels better than he has in years. He is eating well - fish, eggs, veggies, no processed food or sugars. He's been going to the gym. He is disappointed that he hasn't lost any weight, but he feels and looks really good. And, I suppose, therein lies the conundrum. His disease appears to be progressing. Taf/Mek seems to have stopped working. The radiation oncologist saw him a few days ago and said, "you look so much better than your scans would indicate." (Thanks??) He is completely asymptomatic, and returned to work full time a week or so after surgery in August. He is an IT Systems Analyst, so focus and analytical thought is really important to him, and working is also very important to him, and he is good at what he does.

Anyway, as you can see by the following chronology, this is all relative new, and he's only been on one treatment plan so far. And Taflinar / Mekinist seem to have been working for 4 months or so. Until they seem to have stopped working.

August 23, 2017 - craniotomy to remove tumor (largest, causing aphresia; 12 smaller lesions remaining in brain)

August 25 - diagnosis, metastic melanoma

September 23 - start Taflinar & Mekinist

November 14 - Follow up CT scans and brain MRI showed tumor reduction in many sites, and some reduction of brain mets, but possibly 6 new lesions in the brain. And 1st we've heard of tumors in bone (femur and illium).

November 15 - met w/ radiation oncologist to discuss GK surgery. He reviewed scans, and thinks "new" lesions "could be" bleeds, rather than new tumors. Brian opted to be re-scaned in 6 weeks and see where we are.

December 20 - results of scan are inconclusive. Some mets have reduced; but several new lesions, scatted all over the brain. Recommended WBR, rather than GK. Brian opted to 'watch and wait' and re-scan in 6 weeks. 

January 31 - now radiation oncologist is "concerned" as several tumors have grown in size. We were not told the number. (I am guessing that there are +-20 currently, but only a guess). He is recommending WBR, (non-hippocampus sparing), as soon as possible. Medical oncologist wants other CTs done as soon as possible to monitor progression of other sites (lungs, liver, lymphnodes, bones, pericardium, etc.) The idea being that if Brian is having radiation tx for the brain, he can have other sites 'zapped' at the same time - not sure how this works. 

We are really concerned with cognitive impairment caused by necrosis with WBR, and, from what I've read, would prefer SRS in concert with immunotherapy. I don't know what the oncologists' recommendation is for drug therapy at this time. It was not discussed at the 1/31 visit. I have read many journal articles, blog sites, Cancer Commons, this forum's offerings, and Celeste's blog, (amazing work! THANK YOU!!!!) It is all so informative, but really overwhelming. 

Is our concern (fear) of cognitive impairment valid? Is SRS better tolerated? Are the effects of one less harmful than the other? What questions should I be asking the docs? Is it possible to push for SRS over WBR when radiation oncologist wants to do WBR? 

Compounding this situation is that he was laid off from his job effective February 1, and has interviews lined up in the coming weeks. He wants to put off radiation until he finds a job. The recommendation from the doctor is to get radiation done before the job search. I heard the urgency in the doctor's message. I don't think Brian did, however. He is of the mindset that rushing into things is not necessarily the right course, and that we should have time to digest all of this and make well educated decisions. He is also of the mindset that diet is the key, and "cancer can't live in an alkaline environment" and "sugar feeds cancer". (While I am sure that a good, healthy diet is ideal, eating salad is not going to cure him). I am assuming that these little buggers (tumors) are not on his timetable and are growing as fast as they can, with the intention to kill him. (I do think that my husband is in some denial about all of this - given that he does feel good, etc., and who wouldn't be?? Who wants to deal with any of this??)

Thank you so much for reading. I look forward to any and all responses. Diane

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welcome32's picture
Replies 3
Last reply 2/5/2018 - 9:40am

I am worried sick about my 24 year old Daughter, who is Stage 3.  She was diagnosed over a year ago.  She has had clear scans, ultrasounds, and seen dermatologist every couple of months.  She is not under treatment but, going with the watch and wait.  All of a sudden she told me that she had a spot under her toenail and noticed it several months ago and didnt think much of it.  She took off nail polish and now it is still there.  we are contacting her doctors etc....but I have to say I am scared out of my mind.....

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Hi, my girlfriend was diagnosed with Metastatic Malanoma with her initial sign being a mass in the parotid gland.  She is 28 and very healthy/active so this had come has a major surprise to everyone.  I am joining this forum for any help and advice I can get going into this battle.  I have heard of immunotherapy having successful results as well as clinical trials. Also, I have been told about some non-traditional clinics (in Tijuana and Germany) that have had wonderful outcomes.  All I am looking for is some direction.  We are all very scared and want to make sure we are being proactive and stop things in  their tracks. Anything helps. 

Jan. 8, 2018:
Biopsy of Parotid Gland - Results: Trace of Melanoma
Jan. 18, 2018:
Dermatologist - NO PRIMARY FOUND
PET scan - only mass showing in Parotid, suspicion of abdominal area (liver)
MRI - brain scan came back clear
Scope of Mouth/Nose/Throat - all clear
Eye scan - clear
Jan. 22, 2018:
MRI of abdomen - lesions on liver and mesentery seen as abnormal
Scheduling now (Jan. 23, 2018):
biopsy of liver and mesentery

tyler nieland

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Sjack's picture
Replies 2
Last reply 2/4/2018 - 2:26pm
Replies by: cavsnut, CindyJ


I had a malanoma (mole) in my calf, tumor site operated on January 8th, and they did do a sentinal lymph node biopsy (groin) which turned out positive for cancer cells, and so we go from there. I am told the margin was clear.  Then LDH blood test, and the results are "normal".  Also, the mitotic rate was "normal". 

PET scan on Monday Jan. 29th, results on Thursday Feb. 1st. 

PET scan looked good - that is, no problems, nothing lit up. One or two tiny little spots on the lungs, but nothing he was concerned about - no biopsy or anything recommended for the time being. Lymph node was “micrometastatic", and size/depth do not make him want to go in for a CLND (complete lymph node dissection (removal) at groin). Five years ago they would have done it as a matter of routine, but as I wrote about before, they do not see any real improvement in outcome so nothing for now. I’m really happy about that, because a lot of what I’ve read indicates that Lymph node nonsense is almost worse than cancer itself. Well, sort of. So, I’m staged at 3A. So the choice of action is CLND vs Surveillance. We’re feeling certain that surveillance is the right path. This means 1) skin checks with dermatologist every three months, 2) Ultrasound of left groin every 3 months for 1 year to check for node changes, then every 4 months for year 2, then every 6 months for year 3, and 3) CT Scan every 6 months going forward. Of course IF anything pops up along the way, the scheme will change accordingly. He said he thought for someone in my situation there’s a 70% chance that nothing else will come up. Well, and I crazy or is this GREAT news? Yes, every test will have me sweating bullets a bit I suppose, but I'll take this as a good day.  So, for today at least, there's only one thing we say to death, "NOT TODAY!!!!"

Am I just being overly optomistic? Or did everybody start off this way?

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thinkingofu's picture
Replies 4
Last reply 2/3/2018 - 5:10pm

Hello everyone xxx

For those who do not remember, my mum is battling stage IV melanoma with mets in brain and lungs

So far, she has had 3 Yervoy+Opdivo ivs, 10 sessions of SRS and have been taking steroids and Warfarin injections to battle embolism she developed a few weeks ago.

She has not been very well. She has become aggressive with us and at times acts very out of character. When she lost consciousness a couple of days ago, doctor did a CT scan which showed she developed two tiny metas in her brain. 8 months following the beginning of the treatment. 

My question is this: is there still hope? Can immunotheraphy still work down the line even if tiny new metas appeared 8 months later? Have any of you had similar experience and now in remission?

Thank you and love to all of you xxx

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Anonymous's picture
Replies 3
Last reply 2/3/2018 - 1:56am
Replies by: Anonymous, Janner, jennunicorn

Hello! I have read this forum for over a year now, but just signed up after a second melanoma. First melanoma discovered Jan. 2017 on upper left back. Was staged aged melanoma in-situ. Did deep excision surgery to ensure all was removed and got clear margins. I continued to go to dermatologist nearly every month, removing 3 moles at a time, all moles came back as mild-severe dysplastics. Jan. 2018, I noticed one on my head was a little larger than I thought it used to be. My doctor had it removed and called a couple weeks ago to tell me it was another melanoma. I am in the process of scheduling surgery for removal. At my appointment my doctor recommended a specialist and an oncologist for an evaluation. My husband and parents are pushing for a PET scan. My doctor says typically with new (less than a mm) melanomas, they don’t usually order PET scans. But we can take the steps we can to try to get one and have Insurance cover it. Has anyone here had two melanomas within a year, that went on to an oncologist and had scans done and found nothing? And the opposite. Has anyone had two in situ melanomas within a year, went an oncologist and discovered it was internal? I don’t want to over react, but I don’t want to be in denial either. Any/all information is helpful. Thank you!

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Anonymous's picture
Replies 3
Last reply 2/2/2018 - 8:17pm
Replies by: jennunicorn, sister of patient, Anonymous

Hi, I recently had a mole on my labia (L) shaved off and it has come back as melanoma in situ but apparently they didn't get it all and I now have to go back for a wider excision. I am unable to get into a surgeon for several weeks and I am concerned that as they didn't get it all, the cells remaining can spread. I am new to all of this so thought I would ask if this is true and whether I need to be pushing harder for an urgent appointment? 

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SOLE's picture
Replies 1
Last reply 2/2/2018 - 8:10pm
Replies by: jennunicorn

(in response to my fellow canadian Ed from Jennunicorn’s super NED post a week ago and to all of you too)

I am trying to hold on the best I can. About 18 months out of diagnosis, scanxiety has returned with a vangnce as I am due for PET/CT soon. Last groin ultrasound was all clear in December. Managed to also have an abdomen ultrasound done with another doc and all seemed ok.

I was in touch with a patient coordinator from BMS lately and she told me that Opdivo as adjuvant in Canada would probably be accepted by end of 2018 which leaves the provinces to negociate after. Basically another 12 to 18 months wait... Am seriously thinking of buying a few shots directly from BMS if I’m still clear.

I also pursued my investigation on my case of « rare isolated cells » in one lymph node and send my blocks and slides to the UK and then Amsterdam where Dr van Akkoii is studying and gathering information on this peculiar situation through his clinical trial. First, and to my utter disbelief, the company in the UK (oncologica) could not find any cancer in my lymph nodes!!! I wanted them to test my PD-L1 expression and they couldn’t find any cells!!! Then Dr van Akkoii came back with ... the same conclusion!!!! Dear Lord!! Funky staining in between the lymphocytes, all cells, cytoplasm, nuclei and morphology appear normal to him! So I might be ... stage 2b! This is better than stage 3b but not out of the woods. I will send my stuff again for a last revision to a very top pathologist and make peace with the « incompetence » we sometimes face along this gruesome journey.

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Anonymous's picture
Replies 1
Last reply 2/2/2018 - 2:49pm
Replies by: Janner

During a recent checkup, my dermatoligist found a very small (tip of a fine point Sharpie) mole on my upper abdomen, an area that does not see much sun, she did not like.  It was removed two weeks later and the lab results are as follows.  

"This is a bisected shave specimen showing ested atypical melanocytes along the dermal epidermal junction and within the papillary dermis.  There is associated papillary dermal chronic fibrosis with reactive vessels and chronic inflamation.  The degree of inflammation suggests regression/halo reaction.

Immonoperoxidase staining with MiTF does not show basal layer confluece or upward migration.  Dual staining with Ki-67 amd Mart-1 does not show an increased proliferative index in the dermal component.

This is a compound nevus with sever atypia.  The margins appear free of tumor in the planes of section.  Nonetheless, a wider excision with at least 3 to 5 mm margins is recommended."

I have dozens of other moles on my body.  Some have been removed in the past with no mention of such negative lab results.  Is the the recommendation to remove an additional, wider section the best course of action?


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Scooby123's picture
Replies 6
Last reply 2/2/2018 - 11:37am

Hi all , hope all as well has can be. For those who had treatment on brain tumour's.I had gamma knife in April 2016 for a tumour on brain. I have had scans since plus CT scans for body . I am on keydruda. 9 dose Monday. My scans are due but my consultant not scanning brain due to clear scans since treatment of gamma knife. So coming up to 2 years in April 2018. So those who have had brain tumours do you still get scans after 2 year clear or do you not. So happy head clear but bit nervouse not keeping a eye on still despite clear. Activity in chest nodes but have reduced on last CT scan from taking Keydruda.
Thanks for support
Scooby x

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Anonymous's picture
Replies 4
Last reply 2/2/2018 - 10:44am
Replies by: Brent Morris, Anonymous

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Rita and Charles's picture
Replies 8
Last reply 2/2/2018 - 12:31am

I haven't been on the page much, my heart couldn't handle seeing the struggles, the defeats but sadly the successes too.  All too much.  One year ago, my husband died in my arms at home.  His last day of full brain radiation, filled with tumors throughout the body.  In my heart, if we got to the last appt for the 10 days, the next day he was scheduled to start agressive immunotherapy.  That last day came too soon.

Hard year, in retrospect I wasted too much time researching and reading - I should have just been holding him.  My biggest regret.

Take care warrioirs, prayers are for you.




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