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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Jenine's picture
Replies 5
Last reply 10/6/2016 - 7:10am
Replies by: Bubbles, Jenine, debwray

Hello All,

Has anyone participated in case study 13-105?  My husband is considering this as an option for treatment. From what I understand it has been in trail phase for 2 years but feedback is limited.  Thanks.

Wishing everyone strength and good health♥️ 


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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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Replies by: Anonymous, Bubbles

Samantha posted some replies to my earlier post even though she was dealing with the passing of Mickey. I am grateful for her contributions (as I am everyone's) on this forum.

From 9-29-16

"Sadly today I will lay my sweetie to rest.  He had passed away at MDAnderson on 9-24. His LMD was under control and he had started the TIL trail for progression in his liver,lungs and lymph nodes.  They did a CT of the chest and abdomen on Sunday  and all was stable. The third day in his blood oxygen were low and blood pressure was low, they did a chest X-ray that showed possible aspiration gave him lasiks then they took him to the ICU where he passed away. They asked if I wanted an autopsy I said no more cuts.

Mickey's LMD was in his spine and they did do radiation there so that maybe way he had to have the flow test both times.  He did the intrathecal with the IL2  but had to stop to get on this trial.  We were going every eight weeks.  In 2013 Mickey developed hydrocephalus (which is a side effect if intrathecal) that was when they put the shunt in.  he had had WBR and two gamma knifes done and by the end of 2015 his brain was getting tired.  He had the intrathecal done in 12-15 and by the time I got him home he could not make his legs move so we went back down there nothing found he got better we went home then the next one after being home an hour he couldn't talk we went to the ER here at home they said it was a seizure. When we went back for the next one Mickey progression had gotten worse so they wanted to try to get him in this trial.

I keep coming back here for the LMD Warriors, I know he would say he would do this treatment all over again. It was bumpy but I would go on the journey again knowing what I know."

Wishes of strength and support go out to you over the next weeks and months Samantha. Always think of Mickey's arms wrapped around you in his warm embrace. From now on every round of Mickey's includes a hole in one.


Even after the warriors have past they continue to contribute to those left behind. As the anniversary of Artie's death (which hit me especially hard even though I had never met him) I find myself reviewing many of his posts in search of pain relief options for Adriana.

My gratitude to all.



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Anonymous's picture
Replies 3
Last reply 9/30/2016 - 9:14pm

I am a 23 year old white male with numerous freckles and moles. After a friend pointed out a very atypical mole on my calf, I went to a dermatologist for a biopsy. I was diagnosed with a melanoma In-situ, and was okay after my dermatologist explained the excellent prognosis. I have had my WLE with clear margins. I went to pick up a copy of my pathology report for my files, and noticed the diagnosis was an "irritated early evolving melanoma in Situ". I am a bit of a hypochondriac, and it worries me that I haven't seen this exact diagnosis with my google searches. When I went in for my WLE, the doctor assured me that it was in situ. Can anyone more knowledgeable than myself explain what the "irritated" component of the diagnosis means? The pathology reports last line reads "there is perivascular lymphocytic inflammation with melanophages". Thanks in advance for your help!

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Replies by: Hukill, debwray, Anonymous

We live in Miami Florida. This week my father who is diabete and 74 yrs old received the following results from his dermatologist.  Any advice and recommendations the first appointment with the oncologist is this monday. I am going with him and I want to be prepare as much as possibe.

Thank you for any information and help you can provide. 

Skin Biopsy, Mid Upper Forehead -
Malignant Melanoma, Clark's level at least IV
Breslow thickness at least 2.8 mm
Ulceration - present
mitoses -<1mm 2 square
panthologic stage - pt3b
Note: the lesion extends to peripheral and deep histologic margins. Pan melanocytic cocktail Mart-1 and tyrosinase) is performed. 

How bad is this?
What is the best possible treatment for this?

Thank you
from his son 

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Jacqueh27's picture
Replies 3
Last reply 10/1/2016 - 8:10am
Replies by: Anonymous, Maria C, Becky

It has been a long time since I have posted, but I wanted to report that my daughter Jessica, who had a 14 cm on her liver two years ago, has finally had her liver resected and has NO evidence of disease!!! This will be her third time cheating death as she was diagnosed at 20 and has had initial mole removed, lymphectocmy and now half of her liver.(she is now 26) She has been on Yervoy, Keytruda, Obdivio, Y90 Radiation crystals, had three embolizations and then Braf Inhibors. While this fight for her was long and grueling, she never gave up. We are thrilled with the results and pray she will stay melanoma free for years to come. Never give up!!!! Mayo Clinic in Jacksonville, Florida saved her life!

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snow white's picture
Replies 14
Last reply 9/30/2016 - 9:23pm

I am just wondering if placing a Port O Cath is normal when undergoing treatment.  I know when I was going through chemo 4 years ago, I had 18 treatments and had a Port that made things much easier.

Is this also the protocall for Melanoma treatment?


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Ross&#039;s.Mom's picture
Replies 9
Last reply 10/14/2016 - 6:10pm

Our 11-year old son, Ross, was diagnosed on 9/14/16 with melanoma on his ear. His slide has been seen at Mayo and UCSF and he is currently being treated at University of Iowa Children's Hospital. We met with Dr.Mo today- melanoma specialist in Iowa. Here's what I know from path report: Breslows thickness 2.4mm, Clark's level IV, mitotic index 5/mm(2), margins positive (melanoma focally present at deep margins), stage T3a. He is scheduled for wide excision and SLNB this coming Tuesday, 10/4. I'm deeply concerned about the lack of research on melanoma in children. Dr. Mo said about 10 cases/year in the US- that cannot be right!!?? We're still sort of in disbelief. Can this be happening??

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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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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 6
Last reply 9/30/2016 - 4:30pm
Replies by: Bubbles, Anonymous, BrianP

Hey, so I did IPI, but it came back in my lungs. Started Keytruda but two months later ended up in the hospital unable to breathe.

Dr. switched me immediately to debrafenib + mekinist combo, which relieved the pain immediately, but I know this is only a temporary bandaid.

Are there any options for long-term results after failing IPI and PD-1? Are there any promissing new trials in the pipeline?

Any long-term lung survivors after failing immune therapy?

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KAF's picture
Replies 10
Last reply 10/6/2016 - 9:49am

Hi all

I developed hypophysitis 1 week after my 3rd dose of ipi/nivo in mid July.  I've been on steroids, was weaned down when pituitary became inflamed again.  I went back on hi-dose steroids (100mg) a couple of weeks ago and now I'm down to 40mg.  I'm hoping to continue lowering that number but monday night (3am tuesday) I woke with what felt like flu- 103.2 fever and horrible chills.  I took advil and I felt fine the rest of the day except for fluctuating between chills & sweats during the day. The fever didn't come back during the day.  I have no sore throat, cold, or any other symptom that would make it seem like a flu.  Yesterday morning I woke up at 4am with a fever of 103.4 and chills again. I took advil, felt fine the rest of the day and the fever went away.  This morning about 2am my fever came back - 101.2 - and the chills weren't so bad but the muscle aches were painful.  The advil took the fever down and got rid of the muscle aches but my hands are tingly today and my vision is horrible today and I can barely read what I'm typing.

I called my doc and spoke with the nurse.  She thinks these are all side affects from the ipi since i've only been off it since mid july and she said this can happen after the treament is done.  I would have just thought that the hi dose steroid i'm on would have stopped the drug from all these side affect.  Does that mean the drug is still working in my system even while on the steroids?



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Anonymous's picture
Replies 1
Last reply 9/29/2016 - 8:55pm
Replies by: cancersnewnormal

It's been a year since my husbands surgery.  Stage IV, 8mm tumor removed from his right arm.  Every day has been a gift.  Its been 4 months since we ended Opdivo treatments and although we are still dealing with side effects and after effects, the scans are clear.  I am so grateful for each day.  I read here daily on the success stories and the struggles.  They help me stay hopeful and grounded.  I dont say much on here in responses, but I do say prayers for you all and shed tears as well.  Everyone here has become family.  Thank you all. 


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Fressia's picture
Replies 5
Last reply 9/30/2016 - 2:26pm

On Aug 30th I was diagnosed with malignant melanoma. Long story very short, at the time I was living overseas but recently transferred back to the states for treatment because the hospital out there did not have adequate equipment or professionals for my case. I finally met with the surgical oncologist on Monday and before we proceeded with the wide excision and sentinal node biopsy, he proposed we go with an ultrasound and fine needle aspiration of the palpable lymph node in my groin because this would help guide the surgery options. 

Today I had the ultrasound and it wasn't really painful but my anxiety was getting the best of me. I was shaking the whole time. Anyways, I guess I'm just even more worried now because of the comments the doctor said during the procedure such as "this is a funky shape for a lymph node", "they are clustered together", and "lymph nodes are usually round and these appear to be a little lumpy which means there's some time of process going on but that could be a process of anything". 

I was told it would take about a week back to get results, ugh this is just so stressful. I guess I'm more so venting, but has anyone also going through this testing procedure? 

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braunerk's picture
Replies 3
Last reply 9/29/2016 - 4:38pm
Replies by: Anonymous, braunerk, jamieth29

Has anyone had the side effect of mental confusion? I am on the BRAF drugs and ended up in the hospital with mental confusion. I am now on half the dose and not having a problem but with the full dose big problem. I had trouble with simple questions and have a loss of memory of about half a day.

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