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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snow white's picture
Replies 4
Last reply 10/5/2016 - 2:16pm

My Dad (and Mom) met with Dr. Christopher Dumas and Dr. Amanda Shroyer today at Hoag.  Dr Dumas is a brain surgeon and specializes in the Gamma Knife.  Dr Shroyer is a specialist with the Cyber Knife.

My Dad called me (unfortuanely I am away on a Business trip that he was supposed to take) this afternoon and sounded very good on the phone, he said he felt very confident in the Doctors and felt that they answered any and all of his and moms questions.  Dad was worried that he had to many mets (8+) to do it, but the doctor reassured him that he has done 20+ before and not to worry.  Dr. Dumas inquired where else Dad has mets and Dad told him that he has them in the Spleen, lower abdomen and upper thigh.  Dr. Dumas said that they could use the Cyber Knife on those, but that the most important right now is the Brain.  They will do the procedure on Thursday with a High Def MRI just before.  I told Dad not to be surprised if they do the MRI and they see more than they origanally told him that he had.  So he is prepared for that.  

We still havent heard back from Dr, Margolin at City of Hope to see what treatment he will do afterward, she is on Vacation until the 13th.  

So praying all goes well on Thursday!!


PS. Still absolutely no symptoms, he said "I feel just fine, just like I did before" LOL.  I said well that's a good thing :)


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Anonymous's picture
Replies 2
Last reply 10/5/2016 - 12:59pm
Replies by: Polymath, Bubbles
Daisyduke's picture
Replies 12
Last reply 10/5/2016 - 12:35pm



I just got back from my appointment and what t thought was a Stage III B prognosis turns out is Stage IV and the Doctor wants me to start either Keytruda or Opdivo,  Which one do most people use and how bad are the side effects?


What have you found to be the success rate when you go back for further scans?  The Doctor seems to feel that this is the best option for me and probably the only choice for right now.  I guess once you are on this drug it is for life is what I have heard.


What is the best and easiest way to get these drugs administered that you have found, going in through an IV in you arm, a PICC line or a PORT?  I am still trying to cope with this new information so I can move on and make the right choice.


I know that with this support group out there I will be able to cope and make it.


Thanks everyone.

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Lizz's picture
Replies 9
Last reply 10/5/2016 - 10:17am

Hi I was diagnosed with melanoma three weeks ago.  Its all very scary and everything feels so uncertain.  I just want to make sure Im doing everything I should be.  I had an appointment yesterday with a surgeon who said at the moment I was at a stage 2b.  He spoke about a sentinel lymph node biospy giving me the impression that this was not the best route to take and I should just "sit and wait" and see how things go.  I really dont want to just do nothing and wait for the melanoma to spread!.  I decided to go for the sentinel lymph node biospy regardless.  I am hoping to have an appointment within the next two weeks.  The brislow on my nodular melanoma was 5.5 (on my arm), I get the impression that because it is so large that it is likely that the melanoma has spread?  Anyone else had a sentinel?  If it has spread to lymph glands does that mean it has probably gone elsewhere as well.  Sorry for all the questions but  im new to all this. 

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Sgarceneaux's picture
Replies 4
Last reply 10/5/2016 - 8:51am
Replies by: Fish, Becky, Anonymous, Janner

My 11 year old daughter was just diagnosed with an atypical Spitz tumor that started in the scalp and now has moved to the lymph nodes in the neck. The initial pathology was done at UCSF and further test are being done at Sloan Kettering. We are currently seeing our local Pediatric Oncologist/Hematologist who has advised us to hold tight  for the test results to come back and do a PET scan in 2 weeks. I am looking to get a second opinion as not to waste time and he said he would facilitate this for us but I want to make sure I go to the best place for this second opinion and don't waste anymore time. Does anyone have any experience with this type of tumor and where the best place would be to go? Any info would be greatly appreciated. 

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Happy_girl's picture
Replies 5
Last reply 10/4/2016 - 4:49pm

I posted a few days ago about being nervous about my scan.  Well - I just had my scan and my doc gave me my results- she didn't have the official results, but she still looked at and compared both scans.  The sub cm spot was still there- it didn't change in size and no other spots showed up.  She felt comfortable and confident saying the spot is not melanoma.  My next scan - baring any unseen issues - praying that forever stays!

thank you all for listening and your support! 

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SOLE's picture
Replies 6
Last reply 10/4/2016 - 4:47pm

Hi everyone,

Found out today that my WLE and SNB results are finally available from the hospital archives.

As some of you know, I had my surgery on Sept. 9th and my official appointment with my onco surgeon is Oct 13th...........

My question to you: should I wait until my scheduled appointment or should I go get the results myself asap?

Did you find any comfort having a doctor tell you your outcome? Was it reassuring? Etc...

Really looking forward to your input all of you

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Maria C's picture
Replies 6
Last reply 10/3/2016 - 5:13pm

Hi all,

Yesterday I had my third infusion of pembro and am dead tired today, with an achy body. We restarted immunotherapy after a summer (June - August) dealing with brain mets recurrences that have left my scalp very sore and tender from the radiation. I've also had all 4 ipi-nivo infusions last year.

What confuses me is trying to identify what are side effects from the immunotherapy and what are just "normal" health issues. For instance, I've had hot & cold flashes for many months now, and believe I am in menopause (I'm at that age). However, reading these boards I have learned that others experience fevers and chills (at any age). In addition, my knees ache today like I've got the flu, plus I walked all over the city yesterday surrounding doctor appointments ... but I've read on these boards that "joint pain" is a common side effect.

Also I noticed my feet occasionally feel differently lately but it's NOT tingling. Am I imagining symptoms or are they real? How do we know what's what?

Any & all thoughts appreciated!

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

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Replies by: Melodygrace, slh4448

Hi all,

This may be a long shot, but I am wondering if any of you can recommend a good dermatologist in the Kansas City area. 

I have not had melanoma, but have had several dysplstic moles removed and have an immediate family member who had melanoma.  I know my risk is high, so I am looking for a reliable dermatologist.

Do any of you have an experience with university hospitals? Pros/cons? 

Or any websites where I could find reviews? I am having trouble finding much information right now.



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Anonymous's picture
Replies 5
Last reply 10/3/2016 - 2:25pm
Replies by: Polymath, debwray, Anonymous, btcedarr

I'm having a hard time understanding what insurance is obligated to pay for if a treatment fails. What's the best resource for understanding insurance obligations for covering treatment? For instance, if I were to start on Keytruda, would I be able to take an inhibitor, ipi/nivo, ipi or something else if that doesn't work? Does that change if I were to take ipi first, etc?

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Anonymous's picture
Replies 20
Last reply 10/3/2016 - 10:30am

Found out I had malignant melanoma and not pyogenic granuloma under my right foot right in between 4th and 5th toe. It had been growing for probably 6-9 months and given the nature of the thing, of course it was ulcerated (most pyogenic granuloma are). So my location is under the foot right at the cushion of flesh supporting 4th and 5th toe which supposedly is thicker (3-4mm) than the forehead flesh (1-2mm). Needless to say it is amelanotic. Type is acral nodular.

My initial pathology report said the following

Peripheral margins: involved in invasive melanoma

Peripheral margins: involved in melanoma in situ

Deep margins: involved in invasive melanoma

Breslow: 2.85mm at least (to base of submitted specimen)

Clark: level 4 at least (to base of submitted specimen)

Ulceration: present, extensive

Mitotic index: 4MF/mm2

Microsatellosis: not identified

Lymphovascular invasion: not identified

Perineural onvasion: not identified

TIL: present, non brisk

Tumor regression: not identified

Growth phase: vertical

Stage: Pt3b

I have underwent the WLE (not accepting amputation of my toes and skin graft is healthy and slowly healing: I think they got approx 2cm almost all around but maybe 4-5mm short beneath the toes particularly the 5th one) and SNB. Surgeon found two uneventful nodes and all was sent to pathology on Sept 9th. Believe it or not, I will likely get my results next Oct 13th... 5 weeks of excrutiating wait. Needless to say, my life has stopped and I have multiple anxiety problems. Girlfriend is as supportive as can be but I've been driving her crazy since the day I received my report on July 13th.

Now, what are, realistically my chances of having a negative lymph node result? I read 20% everywhere but I have looked at stuff on youtube given at the 2015 AimatMelanoma conference (or something like that) that basically said 10 times your Breslow deapth is your chance of finding microcells in your lymph nodes.

Can I have your guidance and wisdom please?

I am in total disbelief... Comments on my report and chances of being stage IIB and not III...








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Happy_girl's picture
Replies 4
Last reply 10/3/2016 - 10:07am

Well- it's almost time.  I get my scan on Monday.  The history- my last scan in June they saw a sub cm spot on my liver.  It was too small to tell what it was ( this was through a ct scan)  my scan before that was a pet - and they didn't see the spot.

my doc (James cancer center - osu-Columbus Ohio) was very positive saying she is fairly certain it is just a cyst - but to rescan just to check.

so now it's time for the rescan and I'm scared to death.  I'm hoping cysts would be common and this is a cyst! I know this isn't really a question- just needs to share! Feel free to let me know your thoughts! 

Oh yeah- I'll be 2 1/2 years ned stage 3a if this scam comes cack clear!!!

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Anonymous's picture
Replies 4
Last reply 10/3/2016 - 9:57am
Replies by: cancersnewnormal, Anonymous, debwray

About 2 years ago I noticed a pink/brownish bump on my thigh.  It was a small perfect circle. I suffer from ocd and health anxiety so I was constantly poking and prodding at it.  At one point the top got some flaky skin on it.  It never grew and the flaky skin was the only issue.  After looking at thing for 8 months I asked it be removed and the doctor said it looked fine but he would remove it.  It was 4mm and he did a shave biopsy.  

I was told I needed to return to have it excised and was told it was an atypical traumatized spitz Nevus/ differential diagnosis of benign spitz.  The shave apparently got the entire mole because the excision was completely clear.  

I am 34 years old and started researching spitz Nevus and started getting anxiety that it might have been melanoma that they missed.   Spoke to my derm and he put me in touch with the dermatopathologist.  He is university of penn trained and worked under bernard akerman.  He went to great lengths to explain what he saw in my spitz and he said in his trained eyes it was a traumatized spitz Nevus and when I explained that I had been picking at it the doctor said then tgat explains the changes I saw ! Then tried to explain trauma in a mole.  The dermatipathologist said we removed it with clear margins and that is the standard of care.   He said in an adult a diagnosis of a complete benign spitz Nevus can never be made because they have atypical features.   He said get my yearly check ups and that the likely hood that this tiny lesion ever haunts me is almost non existant. 


For those who understahd this stuff it sounds like the only concern he had was the trauma of the spitz and the rest met the criteria for a benign spitz.  Is it reasonable to relax and put this behind me  and why is the trauma significant ? 

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Jenine's picture
Replies 6
Last reply 10/2/2016 - 9:13pm
Replies by: beans920, BrianP, Jenine, Bubbles

Hello all,

My husband was diagnosed with stage IIIC Melanoma two years ago.    He underwent immunotherapy including the maintenance program.    He had a CAT scan in June which showed nothing even though he felt pain in the center of his chest. Three months later he had a PET scan which resulted in a tumor in  his lymph node and sternum. Has anyone else experienced  something similar?   Maybe I'm naïve but I wasn't expecting a reoccurrence somehow.   So worried.  I'm trying to figure things out and be  strong for my husband and children.   Any input or suggestions for treatment you may have would be appreciated.

Wishing everyone strength and good health.

Thank you,








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