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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jessica_f's picture
Replies 11
Last reply 7/13/2015 - 8:20am

Hello everyone, it's been 14 years since I was last on the MPIP forum. I had Stage III cancer when I was 25, did a year of Interferon, and it recently came back in my lung. 

I had surgery in June to remove a 8mm met to my lower left lobe, margins were clear, as of now I should be NED. Wondering about next steps. Doc recommending 3 months of Yervoy. 

Suggestions I've heard from others (people who have fought Stage IV melanoma / clinicians in the field):

- Expanded access just opened for CHECKMATE 218 cliincal trial (Opdivo and Yervoy combo)

- PD1

I'm new to all of this again and the landscape has changed drastically since '01. Gathering info so that I can ask smart questions when I go for my second opinion.

Thanks for your help :)

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/12/2015 - 6:50pm
Replies by: _Paul_, Jenncat0402, Janner, Anonymous

I have Melanoma on my anterior deltoid ( front of my shoulder) and will be having an excision about 6 " in length. Is there any advantage of having a plastic surgeon perform this surgery over my dermotologist? 

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Rita and Charles's picture
Replies 9
Last reply 7/12/2015 - 6:37pm

So we haven't even allowed ourselves to worry about what the drugs cost - in the end , who cares we are going to find a way to get therapy. But just cuious what the costs are of Nivo or Ipi?? Charles has a Medicare Supplement Plan through Healthnet - PPO...... of course he is in the damned "donut hole"!

Anyone have any insight to what health insurance coverage averages?? Vemurafenib + MEK, Keytruda, Ipi?

Rita

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Replies by: kylez, Patina

My husband Charles' brain mri came back with NO mets!  Yahooo!  After meeting with a melanoma specialist and our oncologist, Charles has opted to start with a BRAF targeted therapy rather than immunology. 

A little background, 15 years ago he was in a horrendous accident - broke most everything, collapsed lungs, spleen out, hip, leg, ribs, shoulder blade - so lucky to be alive.  Broken back pain has haunted him through the years, plus his hip........he lives with pain.  To look at him you wouldn't know - but everything seems to hurt.  

For the past year he has hurt more than ever. now I wonder if that was any warning signs. He also developed these "mystery spots" that no doctor was able to figure out - rash, itchy over his legs, chest, arms - really bad at times and truly his legs - wow!  He had his derm biopsy the spots, we went to a rheumotologist..........no one could figure it out. ANA titer through the roof........what finally helped the spots was prednisone and he has been on and off it for the last 5 months or so.

The past two months have been overwhelming - he is not the normally positive guy, I am that part of the relationsip. He battles with depresson as well as pain. 

So............we start with BRAF + MEK for lung tumor and subcarinal lymph nodes........we opted not to surgically remove all the lymph nodes and the mid lobe.  He wanted to keep off the table as long as he could.  

Strength wise, and because of the spots, we are not doing Nivo first..............

So here we are.  I am terrified that we are making the wrong choice - but who knows?  I read about Keytruda and wonder if that is better than the BRAF + MEK.............but knowing him, the targeted therapy to show some quick results , get his spirits up, make him feel better. 

Its a crap shoot I guess?

If anyone has any good results going with BRAF + MEK - please share. As well as any side effects he might have.........plus how you took the pills. 

Thank you!

Rita

Rita

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LisaName's picture
Replies 4
Last reply 7/12/2015 - 5:32am
Replies by: LisaName, Janner

Hey, I have mentioned that you guys here have many God answers, so I hope to hear your opinion on my dx)

i am a girl who leaves in Czech Republic, Europe, but originally I am from Ukraine, so when I decided to remove my mole, I did it in Ukraine. 

My childhood friend there is having the whole family of professors, so her brother(surgeon) removed my mole with radio wave method(surgitron) and they sent it to the pathologist who is my friend's grandfather) 

So the diagnosis from pathologist is following:compound dysplastic nevi, with proliferation of tha pagetoid cells. 1 cm in diameter, removed with healthy tissues.

but also it was sent to immunegistochemical examination which said: tyrosinasa,HMB 45 - bright positive cytoplasmic reaction in the epithel with cells up to basic layer. Negative reaction in the dermal layer.

Ki67 - positive reaction up to basal area in the epithelial layer.

conclusion: morphology and immunefenotype are similar to melanoma evolving from nevi.

 

interesting fact, when path report was read by General oncologists in Ukraine they all said it was melanoma in situ.

but as I live in other country in Europe, I took my report to the DERMATOONCOLOGISTS here in the main hospital, where they also deal with melanoma and my dialog with doctor there was following

- darling, where did u see melanoma in situ dx here?

-in the end.

-as I can see here, it is just dysplastic nevi that tried to evolve, but didn't as it was removed.

 

so for my safety, she went to consultate with doctor who specializes in melanoma, as far as I understood she didn't see anything critical there too.

but of course they did a regular check up for me and sent for WLE(as it is the same thing they do for dysplastic nevi).

my WLE histology was : no atypical,malignant etc cells were found in the sample.

 

Still I was not sure and went to other dermatologist who has experience in dermatooncolgy and now works for private clinic and he said absolutely the same thing

- It is not in situ yet, he sees it as evolving nevi and it was just a call for me to check my skin from time to time.

 

Still it was not enough reassurance for me, so I called professor who did my hystology who said following:

"I didn't mention any formed tumor, what I saw is the spreading of atypical cells. Melanoma is atypical cells, but not all atypical cells are melanoma. If you were not like a grand daughter for me, I would just write dysplastic nevi, but I decided to send for check. Yes, this type of cells could have formed tumor if not removed, or they just would have continue move, without forming a tumor. But instead of guessing we just removed the mole"

 

so so he doesn't seem very worried too.

and I spoke to many doctors here and they say that immune tests are not informative in differing melanoma from severely dysplastic nevi. Melanoma from regular nevi - maybe yes, but not dysplastic.

 

and what is your opinion on that? Many doctors here seem to be sure, that it is not even in situ yet.

i understand that in Central Europe in melanoma center doctors are more experienced that regular oncologists in my small city(who did resection of both breasts to my 17yo friend, when she just had bening fibroma as the biopsy showed), but still I am worried and now checking all my body((.

now I cannot sleep because I think that my lymph node in the neck are enlargdd(the doctor said that they are normal for a person who was often sick in childhood and who had very bad otitis just this winter) and I think this is due to mole(even though it was in my right armpit and I am worried for my lymph nodes next to the left ear).

 

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Kelly---11's picture
Replies 2
Last reply 7/12/2015 - 3:18am
Replies by: Kelly---11, Patina

So I ended up in hospital due to my stomach swelling, we thought this might be due to ippy but they gave me a ct scan and showes I have several new tumors probably 100% more than my ct scan 6 weeks ago, it's hard to no weather ippy has made tumors look bigger due to tcells going around Tumor or I just am not responding at all I still have anothe 2 ippy treatments to take. I'm really scared.

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/11/2015 - 9:57pm
Replies by: DonnaK, Mat

Hello

I hope that this is not inappropriate for this site, but recently there was a story on CBC news about Camp Erin, a camp for children who have had a loss.

In the story, were two children who shared their experience of losing their father to melanoma.  Here is the link for the story.

http://www.cbc.ca/news/canada/camp-erin-blends-play-help-for-grieving-ki...

I am sharing this, as I recently lost my husband, and my children lost their father to this stupid horrible cancer. It was 8 months from the time of diagnosis to the time he died.  We did not have the opportunity to speak to him about dying.  My kids did not have a chance to share their feelings with their father, as the children in this story did, as at no time, despite multiple requests, did the oncologist share his prognosis. My husband was attending appointments and Ipi treatments.  The day after his second ipi treatment he had a brain hemorrhage and died a few weeks later.

Not sure if this is usual for a doctor to not share the prognosis.  All the doctor kept saying when we asked was "as long as it doesn't spread we are good".  We trusted the doctor and thought we were like many others with melanoma that live for years.  I was not prepared for the dark side of melanoma.

I am having a tough time grieving and have many regrets of not researching alternatives and guidance as many of you do here. I just wanted to share this, as if anyone ever unfortunately finds themselves in this horrible spot in their lives, that they advocate for themselves.  We had no idea where our path was leading.  I am thankful for this site and would like to find a way to spread the seriousnes of this cancer so others are aware.  

Does anyone have any suggestions of good organizatons to support in creating a greater awareness of melanoma?  I am a bit synical in my thoughts of  some organizations, with either the mismangement of funds or involvement with pharmaceutical companies at this time.

Again, I am sorry if this was inappropriate to bring here.  The love, support, and hope on this forum is truly incredible.

 

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Anonymous's picture
Replies 2
Last reply 7/11/2015 - 9:46pm
Replies by: Patina, Anonymous

Friend recently diagnosed w stage 3 , depth is 2.1.   Thankfully PET scan and Ct came back negative earlier this week. Friend is self employed mother w NO INsurance!!

know they are million factors - but trying to get even very rough range of potential surgery costs to remove. 8k?, 40k...?   

 

Fundraising efforts underway but would be helpful to get even generalized idea of what surgery alone will be. And no one will prove.  Again- know million factors...but any guess even is appreciated. Thanks. 

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Friend recently diagnosed w stage 3 , depth is 2.1.   Thankfully PET scan and Ct came back negative earlier this week. Friend is self employed mother w NO INsurance!!

know they are million factors - but trying to get even very rough range of potential surgery costs to remove. 8k?, 40k...?   

 

Fundraising efforts underway but would be helpful to get even generalized idea of what surgery alone will be. And no one will prove.  Again- know million factors...but any guess even is appreciated. Thanks. 

Login or register to post replies.

Friend recently diagnosed w stage 3 , depth is 2.1.   Thankfully PET scan and Ct came back negative earlier this week. Friend is self employed mother w NO INsurance!!

know they are million factors - but trying to get even very rough range of potential surgery costs to remove. 8k?, 40k...?   

 

Fundraising efforts underway but would be helpful to get even generalized idea of what surgery alone will be. And no one will prove.  Again- know million factors...but any guess even is appreciated. Thanks. 

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democat's picture
Replies 9
Last reply 7/10/2015 - 10:34pm
Replies by: Anonymous, BrianP, jbronicki, Colleen66, SABKLYN, Mom2Addy

I've been waiting days. Kaiser SoCal usually takes a day or two or three, but are now making me wait over a week. Do they not understand that this is torture? Does anyone else have these issues?

 

Roxanne

 

 

Roxanne

Stage IIIa/IIIb

since 1/2013

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dfeng's picture
Replies 4
Last reply 7/10/2015 - 10:03pm
Replies by: tschmith, Bubbles, jamieth29, Mat

In march I was in severe pain in abdomen, during the surgery a 2cm tumor was found and removed. It turns out to be metastatic melanoma, stage IV. After three months, last week a CAT scan shows 6 more around liver size from 2cm to 3cm. It seems that I am really in bad situation.

 

I am going to do brain scan and chest scan again this Thursday. Since three month ago everything shows clear but now, anything could happen.

 

Talked to my doctor in MSKCC, I am going to start a clinic trial from next Thursday. I will never give up and definitely fight to the end of world.

I will try to keep this post updated.

D. Feng

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Rawlins Mom's picture
Replies 5
Last reply 7/10/2015 - 9:55pm

Several week lurker, first time poster

My mother was diagnosed with mucosal melanoma (lady parts...not fun!) at the end of May.  She had surgery to remove the main lesion, and the PET scan showed several mets to the liver, lymph nodes, and one to the brain.  She had specific radiation on the brain tumor (not sure the exact procedure), finishes her daily targeted radiation today (4 weeks total I believe), and started on Keytruda 2 weeks ago.  Side effects so far are actually OK.  Some fatigue, and an imodium here and there, but overall OK.  

I really appreciate all the posts here, both the uplifting ones and not so much also.  Puts things into perspective, and now I know that there are many options down the line.  

 

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/10/2015 - 9:49pm

I would like to know how long Keytruda treatment last. Hoping somebody on this board have experience with the treatment.
Good luck to all of you!

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/10/2015 - 3:22pm

My father recently was diagnosed with metastatic melanoma stage 4.  It was discovered during a routine biopsy on his head.  He has had a pet scan and it shows no attachment of any kind to his body.  How is it possible to be at stage 4 but not have anything showing in the lymph nodes, organs, etc.?  He is now recieving 6 weeks of radiation on his head.  He was told this was to hopefuly kill anymore spots.  Again I am confused.  To my understanding Metastatic melanoma cannot be cured.  What am I missing? 

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