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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oconnorr's picture
Replies 2
Last reply 9/22/2017 - 1:12pm
Replies by: oconnorr, Cindyco

My dad was diagnosed with stage IV mucosal melanoma in April 2017. He had been receiving opvido immunotherapy weekly for 18 weeks, and this week he had an MRI. 

There tumor in the maxillary sinus has shrunk, but the tumor in the frontal sinus remains stable, and they still don't feel it is resectable.  

His oncologist is suggesting follow up with a radiation oncologist to explore that option, but cautioned that targeted radiation therapy is not always effective with mucosal melanoma. 

I thought targeted radiation therapy is usually used after surgery, and if he starts it now, future surgery will not be an option.  And I know it will make him ineligible for some clinical trials. 

Does anyone have any thoughts? Advise? I'm confused and don't want him to start something that is t promising. 

Rachelle M O'Connor

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YVAN's picture
Replies 1
Last reply 9/22/2017 - 7:57am
Replies by: YVAN

My PATHO report mentions a stage1A melanoma 0,3mm after the punch biopsy (all the rest is good: no ulceration, no regression, mitotic rate=0, noxyz, etc....  But it mentions also atypical melanocytes at the margins.... I thus go for a wide excision...But my questions are:

(1) Are atypical melanocytes at the margins = melanoma...Are these already tumor or only susceptible to become melanoma tumor (??)... My doctor's answer is not clear.....

(2) I bleeded a lot after puch biopsy...if atypical myelanocytes at the margins were indeed already cancer, could they have spread in the blood (??)

YVAN, an anxious patient...

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/22/2017 - 10:39am
Replies by: laulamb, Janner

I'm post stage IIa melanoma about 16 months and I just tonight discovered a pea-sized lump in my neck near my throid.  I've been on synthroid for low thyroid for over 20 years.  Does anyone have any information about increased risk of thyroid cancer after melanoma?  I plan to contact my oncologist tomorrow, but am wondering if there is some kind of connection.  Thanks!

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/21/2017 - 9:32pm
Replies by: bridgeyb33, Janner

Hi,

If you have a nevus that exhibits severe dysplasia upon first biopsy with clear margins, do you still re-excise anyway? 

I had a nevus removed and the path report came back as severe dysplasia with margin involvement thus further re-excision was recommended. But, I want to know, had the margins been clear upon first biopsy would re-excision still be necessary?

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/21/2017 - 9:19pm
Replies by: Anonymous

Found this interesting. I had thought that melanoma arose at 50/50 chance of being from an exisiting mole vs a new one. This study shows that only 29% of existing moles turn into melanoma and most come from new moles. Mine was a new mole and aggressive, so makes sense to my personal case.

https://www.medicalnewstoday.com/articles/319173.php

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Replies by: Janner, hellokitty1, Anonymous

When I was 12 or so, I developed a mole on my upper arm near my arm pit. It was an ugly, black cluster of freckles. I remember learning about melanoma at 15 and eyeing that sucker very suspiciously. In my 20s, I gained 100lbs (yeah, I know). That mole now looked more speckled and spread out. The black parts were still black, but there seemed to be more white skin speckled throughout the freckles. I didn't know if it was a change or stretched skin. It took me like 8 years after the changing to get it biopsied. The changing never did seem to get worse. Like it evolved and then stayed steady for the next few years. I showed it to my derm in 2012 and he passed up biopsying it. In 2016 when he took it it was no worse than it'd been in 2012, at least not that I could tell.

The biopsy came back as having moderate-to-severe atypica and being either an atypical lentigo or an evolving junctional nevus, with the first one getting more votes when they reviewed it at conference. It's the UPENN lab, which my derm said is one of the best in the world. The path noted things like focal crowning but does not mention regression anywhere.

Is that something a path could miss or not mention? I had a WLE. It's been gone for a year. But now I'm noticing lots of moles on me fading, and rapidly.

Obvioulsy the cells that were still left on the dermis at the time of extraction are gone. But what about the regressed cells? Could those have moved to other parts of the body, turning or turned into melanoma?

I asked my new derm if maybe it never changed after all. Maybe it looked different because of the weight gain and it was moderate to severe all along. He said no way. Moles never start out severe and it must have been regression.

I am SO WORRIED about developing melanoma without primary that I decided not to have children. I don't know what else to do. If my body is eating the cells instead of keeping them trapped in the skin, how am I supposed to fight this and catch it in its earliest stages?

I know maybe no one can help me. I know maybe I have a bit of health anxiety, but if there's any advice anyone can offer at all, I'd appreciate it.

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thinkingofu's picture
Replies 5
Last reply 9/21/2017 - 2:40pm

Hello again. Thank you so , so much Bubbles and Cancersnewnormal for answering my previous question. I hope it is OK for us to ask eveyone another one following the earlier thread. 

If doctors would not allow us to have SRS and Infusion ( yevroy+opdivo)  on the same day and we decide to postpone the infusion by one week, would be it be ok to delay it by that much in your learned opinion? In other words: if a patient is supposed to have the infusion every 3 weeks, would having an infusion a week later than planned (at 4 weeks) make the treatment less effective? Or in your experience it happens (e,g, someone is not feeling well, so must delay etc) and doctors are not concerned about it? 

Thank you. You are amazing. xxx

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Hello everyone xxx

As the title suggests, we are due to have a second infusion (yervoy + opdivo) on Monday, however, on the same day mom shall have a second SRS treatment. They state they can either give her her IV infusion or SRS treatment a week later because she cannot have both on the same day. 

If we choose to have the infusion on a later date, it would mean she will get her 2nd dose of Yervoy+Opdivo 4 weeks later instead of 3. 

If SRS, then there will be a 2 week gap between her first SRS and the second one (she will have her first one tomorrow). 

What would you suggest, please? Would someone with mets in brain better to have SRS or Infusion sooner?

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Quick background, stage 4 mel since 2014. Have tried Sylatron, IL2, yervoy, opdivo, trial of palbociclib, trial of glembatumumab vedotin &  now on keytruda.  Having some success with the keytruda, however I have an area on right upper maxillary/palate that is of concern to all.  Dr sent me to ENT who recommended surgery.  The two options were to do maxillary obturator prosthesis or a transplant/patch. Dr  recommended the transplan/patch surgery.  This  would consist of going in through neck up into mouth area to remove tumor, part of cheek bone and couple of teeth.  They will graft skin from leg or arm then "patch" the hole created from the surgery.  This will require a weeks stay in the hospital (2 days being in ICU to make sure transplant takes), be on breathing & feeding tube.  I'm scared but at this point something has to be done .  Wanted to get feedback on what you guys thinks.  Thanks!!

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http://chicagotonight.wttw.com/2017/09/15/study-vessels-spread-cancer-ca...

 

A new study found that the same process can strongly enhance the effects of immunotherapy in melanoma patients being treated with checkpoint inhibitors

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/21/2017 - 2:12pm
Replies by: hellokitty1, JuTMSY4, Anonymous

I've had a brownish stain looking thing under my toe nail for a few weeks now. I thought I had bumped it on something. Three days ago I noticed a small brown spot under my skin on the bottom of my toe. I'm not proud to admit I cut into it about an hour ago. I was hoping it was a blood blister but there was no blood. Just this little hard brown thing that seems to be in the bottom of my toe. There isn't any pain. But Google keeps bringing me here. I am not sure what to do.

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TexMelanomex's picture
Replies 18
Last reply 9/22/2017 - 12:05am

I wish this was a simple social call but I am back in the Melanoma mix after a short respite. I had a grape sized knot show up directly below my clavicle and back down to MDA today. I got the news that it was a node positive for mel...the blessing and the curse at MDA is that they result needle biopsies in about 20 minutes. CT first thing tomorrow to see what else might be going on and then discuss the battle plan with Dr. Ross and Dr. Amaria. Although I was quite content at Stage II, it looks like I have graduated.

 

I'm assuming that surgery is on the near horizon, but I'm sure what they are going to recommend beyond surgery. Any thoughts gang? I know, I know, there are way too many variables based on the info I gave but my mind is spinning tonight and I will know soon enough.

 

Although, I wish I was back here under different circumstances but even after a quick look through the most recent posts it was easy to see why this was such an inpsirational place 6 months ago.

Tex

Tex

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My father recently passed away and we asked in lieu of flowers to donate to MRF.  How can I see the donations that have been made in his name?

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daughter1's picture
Replies 6
Last reply 9/22/2017 - 2:38am

Hi Everyone.  My mom has mestatic melonoma in her liver and spleen.  MSK started her on Yervoy/Opdivo combo but after two doses, she was taken off due to her creatinine levels (forgive me if my spelling is incorrect.)   She then continued every two weeks with just the Opdivo and her scans are showing gradual decrease.  We are so happy that there are no new tumors and the ones that she has are slowly but surely shrinking.   Question:  My mother is complaining of horrible joint pain from her back down to her knees.  She has a difficult time getting up and literally had to stop and take a few breaks while walking to the car from the food store.   Have any of you experienced this?   The doctor seemed to be so happy with the scan results because she is responding so well.   I'm a nervous wreck and I feel badly that she is in pain. 

Robin 

 

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rabbits68's picture
Replies 3
Last reply 9/20/2017 - 6:16pm

I had my 2 month scan since starting the Clinical Trial at MSKCC. Yesterday's scan showed significant shrinkage in most of my tumors. This is my second run on the MEK combo with now added Phenformin to see if we can extend the time before resistance. I am so thankful for the reprieve as my pain level is decreased and I am off narcotics and enjoying life and praising the Lord for healing. I love Dr Shoushtari and the team at Sloan Kettering, they have worked hard for me. This trip was definitely worth it!

LisaG

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