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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kensmom's picture
Replies 4
Last reply 10/9/2016 - 8:59pm
Replies by: kensmom, Polymath, debwray

Hi!  My son was recently diagnosed with melanoma.(Sept 12, 2016) We have been given very little information. The initial biopsy was 3.9 mm deep and the mole had been bleeding for several weeks. The surgeon we were referred to performed an excision and sentinal node biopsy on September 21, 2016. It was supposed to be a 2 cm excision and the whole proceedure was supposed to take about 30-45 minutes. instead, it took almost 3 hours for the surgery and he has a 4 inch concave incision on his fore arm. We went for removal of the stitches on Oct 7, 2016 and were told the path reports are not complete. Apparently the pathologist wants an expert opinion on a "funky" node. We were told to come back in 2 weeks. And that is all the info we have. Any thoughts or suggestions.

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Laura-lou's picture
Replies 10
Last reply 10/9/2016 - 4:25pm

Hi all,

I had a biopsy on Monday, and by today, I have decided if I haven't heard anything, it's nothing.

My mole was 7mm with two colours - black and brown - and what looked like a mole, within a mole, within a mole.

Presented total A-E, but I've been using reading some moles do present like melanoma, and they're not.

A good chunk was taken, 9 stitches, or so.

What I'm interested in knowing, is how long did it take for you to be told it was melanoma. I'm thinking if I don't hear, defo by tomorrow, it's fine.

Thank you :)


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keepthefaith11's picture
Replies 2
Last reply 10/9/2016 - 3:51pm
Replies by: keepthefaith11, geriakt

My dad had his second infusion of Opdivo this past Wednesday. Thursday he started feeling really off balance and dizzy, especially in the first part of the day. This went on for three days. Today Sunday, he is completely fine again. Has anyone experienced dizziness from your infusions? Also, if you have side effects from one infusion does that mean you will keep having them after every infusion?


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cancersnewnormal's picture
Replies 26
Last reply 10/9/2016 - 12:32pm

Hi all!

I was on Keytruda for 20 months. It worked quite well for me, including a stoppage of any new brain mets! In July, i began having pancreatic issues, and we stopped/paused infusions. My brain scan as of 4 weeks ago, is clear, so it seems as though the immune response continues. WHEW! Although my pancreatitis cleared up, and the enzyme levels have gone back down, I'm now finding myself with joint/muscle pain, and the ever so annoying sinusitis. I've had a stuffy nose since early August, and I snore like a grizzly bear, even when wearing a breathe right strip! Thus far, the joint pain has been "contollable" with over the counter NSAIDS. There are days though, when the pain is too high for normal daily function. We're blood testing for Lupus and rheumatoid issues. Tests showing inflammation came back as out of range high, but not crazy high. 

My questions...... Has anyone had these same kinds of issues? As for treatment of them... did discontinuing immuno infusions do the trick? Were you able to "spot treat" body areas (ex. knee or nose), or did you have to rely upon systemic steroids? I'm not a fan of how the dex makes me feel, and I am concerned about systemically slowing the immune response, because I absolutely fear the return of brain mets. However... something has got to give.

-- Niki

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Anonymous's picture
Replies 5
Last reply 10/9/2016 - 9:22am
Replies by: Anonymous


My husbands pathology report states the below in the comment section, could someone please help me work out what this means. 

'A difficult meloncytic lesion. There is at least melanoma in situ and in one early level a solitary atypical dermal meloncyte. This is deemed early largely regressed melanoma' 

it is the early large regression which has me confused. 

His report states 0.4mm, no ulceration, mitotic figure 0 per mm2, superficial spreading, radial growth phase, brisk TIL. I know all of these are signs of good prognosis however I can't help but think they aren't true as it had largely regressed therefore could have been deeper/VGP etc

Any advice would be appreciated :-) 

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Rita and Charles's picture
Replies 5
Last reply 10/9/2016 - 1:32am

So........hope is funny.  I have read of those with great blood tests, low ldh, nothing sticking out of the ordinary raising red it dangerous to put to much emphasis on blood work?  Could the Mel still be there even though the blood looks normal?  I know.....impossible question.




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Jango's picture
Replies 9
Last reply 10/9/2016 - 1:26am

Hi everyone I am new here and it is my dad that has melanoma . Or that is what is suspected as they have found a mass near his bowel. He will have to go for ct scans and then biopsies etc. But they are suspecting melanoma as he had stage 1 a few years ago on his abdomen. It was removed successfully with nothing found in the area. He was declared NED and followed up for a few years after. All clear until now. Of course my mind just jumps to the worst that he will not survive this. But maybe some of you have been through similar situations. I am just now starting to read the posts. Please, please give me some hope. I hate that I have to be here or any of you, but just glad there is a community.

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SOLE's picture
Replies 15
Last reply 10/8/2016 - 6:00pm

Hi again!


Can somebody tell me what this equals to? In my readings on the subject on the net (and they are hard to find) it tells me that there was no cluster of cells and that the diameter of those cells is less than 0.1mm.


Is this true? Am I really a stage 2??


BTW, WLE on plantar of my foot came back clear!!!!!!! And I got to keep my toes!!!!

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hutch562's picture
Replies 5
Last reply 10/8/2016 - 4:27pm

Hi I am the wife of a wonderful man just diangnosed with 2a melanoma.  Had 3 nodes taken out and one is dirty so I guess the stage will become stage 3.  Had mole on upper shoulder.  New to this cancer thing and trying to take it all in.  I realized already I cannot do this alone.  In the process of looking into treatment options and center that have the most current treatments.  We live in Virginia.  Any info at this stage of the game would be much appreciated. 



LIsa Hutchison

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Tbailey's picture
Replies 9
Last reply 10/8/2016 - 2:58am
Replies by: CindyCo, Anonymous, Tbailey, jennunicorn

Went to Doctor with what I thought was a hemorrhoid. Was sent to Surgeon who did a biopsy and results came back an Anal Melanoma. I have an appoitment with MD Anderson on 10-18-2016. So Nervous.

Tonya Bailey

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Buddy0513's picture
Replies 8
Last reply 10/7/2016 - 9:26pm

Hello everyone,

I have been posting here about the whole treatment with my mom and we have a new update. I was wondering if anyone had someone similar or any insight to any of this...

She started her immunotherapy last week. That night was horrible, she was very sick, couldn't stand up, had a slight fever, diarrhea etc...this slightly continued into the next day when her ankle swelled up as well (we were checked out and it isn't a blood clot). About 24 hrs (close to this...) the tumor in her stomach basically looked as if it had doubled in size. She had many pains and found it hard to walk. About 3 days after treatment, the other side of her stomach where there was no tumor swelled up as well. She has been in/out of pain, both on and off high stength pain medicine to help her sleep. She has a lot of fatigue (which I am assuming is from the treatment last week)

After meeting with our Dr. He mentioned he wanted to do chemotherapy (Taxol and some other one that starts with a C) because we don't have more time to wait with the location of tumor (it's basically crushing her insides). We start chemo on Thursday. They went over side effects such as hair loss, fatigue etc...with the hope of shrinking the tumor faster since the Dr had mentioned we cant wait the 12 weeks for immunotherapy to respond.

Does anyone have any insight or experience on this? We keep feeling like we are getting worse and worse news at this point. Ever since she started the immunotherapy she has been sicker/in pain more than ever, even compared to the 1.5 months we were waiting to start all of these treatments.

I don't know much about chemotherapy since I didn't expect this to be thrown in with the mix. Any thoughts would be helpful. From what I have Googled Taxol doesn't sound very good, but again I don't fully understand what I am looking for.

I also want to say thank you to everyone who has been following/giving input for this case. Since it is mainly me taking care of her everything has been very hard and any help/prayers are appreciated.


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SOLE's picture
Replies 9
Last reply 10/7/2016 - 8:04pm
Replies by: Bubbles, SOLE

So here is how it reads:

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snow white's picture
Replies 4
Last reply 10/7/2016 - 5:49pm

Well I am happy to report that Dad did well with the Gamma Knife procedure.  I on the other hand can't stop crying, my heart just aches for him.  I guess I am just feeling sad because I know this is going to be such a long journey for him, he has always been my rock and cheerleader, and to see him go through this just kills me.  But, I will be his rock and cheerleader now, no doubt about it!!!!

It took 144 minutes and they got 15 lesions, we knew to expect more than orginally diagnosed.  He says he is feeling tired and a bit of a headache.  The nurse told Mom that its possible that he will have pretty bad insomnia, but that he can take meds to help with that.  They also doubled his dose of Keppra.  Happy to have this behind us and moving on to the next thing.



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Becky C.'s picture
Replies 13
Last reply 10/7/2016 - 12:17pm

Hi. I am stage 3a, had microscopic cells in sentinel node, had 6 more nodes removed that were all clear. I was given a very good prognosis by my oncologist, he said it is most likely that I am cured but he can't tell me one hundred percent, because it did get to the one node. He said there is that small chance that cells could bypass the nodes or that cells could have been in lymph vessels in between the primary and the lymph nodes. I don't feel that worried about the nodes, I think it most likely stopped at the sentinel. i do worry alittle more about the other, because I did have a high mitotic rate. My breslow was not real deep, 1.57mm. Does anyone have information about how often this happens? In the reading I have done, I have not read any examples of  a recurrence in the lymph nodes after having a dissection.  If it did, would it go to my remaining nodes that are there? Thanks, I appreciate any feedback

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G-Samsa's picture
Replies 4
Last reply 10/7/2016 - 9:24am
Replies by: cancersnewnormal, BrianP, Bubbles, Anonymous

I am officially considered a failure of the NIH TIL trials...After 9 post-cell-infusion months that reversed a tsunami of pre-Til progression, and reduced most tumors by 15 percent, I have developed a new tumor which has made me something of a pariah ( perhaps because I have upset the treatment statistics).  I have been returned with a feeling of defeat to the Dr. who recommended the TIL treatment for me. I am now initiating  some of the other more conventional approaches we all know about.  I find it really interesting that someone who has spent the last nine months feeling great and totally drug-free should feel defeated coming off the prior three years of infusions, debilitating genetic therapies, and all kinds of reactions.... This interim period of partial TIL effectiveness has felt more like a holiday ( one that has sadly ended).  I suppose if I have any misgivings about TIL it was not about the treatment, or about durability -- they are, after all, what they are.  Perhaps I'm just too much of a lowly Gunea Pig to be let in on the science of it all, but I hope there is something more than trial and error tabulation at play here.... If you have long term regression you succeed if you don't you are cast out in shame. It would seem to me that there is much to be learned from failure ...( there are original tumor samples, samples of tumors after immunotherapy, and new tumors after TIL--is there something for example to be learned from comparing their genetics that may contribute to a breakthrough?)  I believe (and suspect most trial subjects would value knowing)  there is no failure in science, only an opportunity to learn and that somewhere in here each lowly patient makes a contribution to getting at the big answers and just how that small contribution might fit in---no delusions, a holiday is usually just a bonus. 

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