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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Replies by: Bubbles, mrsaxde

I have been stage 3 for about 1 year, following removal of inguinal and pelvic nodes. Currently on Opdivo. Metastasis found this week in hilar (lung) node. Clear everywhere else. My MD Anderson oncologist has asked the thoracic team if this is operable. No answer yet. Another option she mentioned is radiation with continuation of Opdivo. Has anyone had a hilar node removed? Is it possible?Radiation to hilar node? Desperate for information about these
treatments, any successes, failures or advice. Please and thank you.

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Hukill's picture
Replies 7
Last reply 3/22/2018 - 9:42pm

Last Friday I received the new 480mg dose of nivo. On Monday my dr called me to see how I was doing. They said they were checking on everyone who received the 480mg to check on them. I just got another call to check on me and was told they have had 2 patients admitted to the hospital for side effects after the 480 mg dose.

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Anonymous's picture
Replies 12
Last reply 3/22/2018 - 8:39pm
Replies by: NSNewf, Bubbles, Rob578, CancerSpouse, mrsaxde, Anonymous, DaveNB, GeoTony

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I am looking for answer and to understand everything that is going on with my mom.

My mom was diagnosed with stage 4 rectal melanoma in June of 2017. She had a quick growing hemorrhoid. Once they removed it and found it cancerous she had a colostomy performed in July 2017. In August 2017, they found tumors on her liver and pelvic bone. She was put on Keytruda. The Keytruda did not work and was found to have more spots on her liver and lungs. During all of this my mom felt great and worked. She felt normal. In the beginning of Feb. 2018, she was put on Yervoy. Her first treatment was fine. After her second treatment, she felt very nausea with diarrhea and vomiting. Her second treatment was almost a month ago and she is still felling horrible. She was admitted to the hospital for a week to regain strength with IV and potassium. Once she got out she started to decline in strength again and sleeps 20+ hours a day and is totally out of it. She is on hydrocodone. When she does wake up she says she’s in pain and is nauseas. She went in for scans 2 days ago and it has shown the tumors have stopped growing but they have not decreased. The doctor says she should have 2 more treatments.

My questions are. Is this normal, my mom was full of energy off or Yervoy and is now in pain and sleeping all of the time? When she is awake she tells us things like "remember I will always be watching over you". Do you think she can pull out of this after the treatments are finished? It has me very worried. Thanks

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melhoff13's picture
Replies 3
Last reply 3/22/2018 - 4:34pm
Replies by: melhoff13, Janner

Hello all.  New to the board and new to this diagnosis.  I am 36, light skinned and have had hundreds of moles/freckles all my life.  I have been seeing a dermatologist off and on for the last 10 years or so.  In that time span, I had 5 or 6 moles removed and biopsied with nothing to speak of.  Last week (3/15/2018) I had another mole removed from my chest, but this time it came back as melanoma I guess.  The doctor called yesterday (3/21/2018) and said it was caught early and the treatment is to make a deeper cut.  I am assuming this is the wide incision I have been reading about on this forum.  I haven't seen the pathology report so I don't know all the specifics, but I am going back in this morning (3/22/18) for the follow-up excision.  I am going to ask for a copy of the first report so I can post the details, but I just wanted to join the community and hope for the best.  I know many times these things are somewhat routine with moles and light skin, but I have been freaking out the last day or two.  I really wish I had the report or knew what the details were, but the doctor called when I was driving and I didn't get a chance to ask many questions.  Hopefully I can find out more today.  Any how, thanks for the forum and I look forward to interacting with everyone.  Cheers. 

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Replies by: cancersnewnormal, TomW, keepthefaith11, Anonymous, Bubbles

My father was just diagnosed with stage IV on 3/5/18. His PET scan on 3/2 revealed at least 20 lesions in his brain, and metastasis all over his body including brain and bones. My family has been through a roller coaster the past 2 weeks and we’re looking for any encouragement or advice as we navigate through this new world of cancer.

He was hospitalized on 3/4 due to swelling in his brain, they began full brain radiation on 3/5. Dr. Panares is his oncologist at St. Jude, however we have not been thrilled with his treatment plans or aggressiveness.  We have a family consult with Dr. Hamid at Angeles Clinic on Monday and hopefully will see if there is anything more they can do to treat this.

His team at St. Jude does not seem to work together in a timely matter, when every second counts this becomes very frustrating. We have an oncologist, radiation oncologist, neurologist, and ICU doctor all working on this yet it seems they all have different ideas on what is happening.

My dad is unable to walk much, speak or swallow, although he does still understand what is said to him. We realize that at this point he is probably not eligible for clinical trials but are wondering if anyone else has been in this situation before and what you recommend? Or any advice on Hoag hospital, USC, UCI, or UCLA?

Any advice is appreciated- thank you all and thankful that this forum exists!

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smiller's picture
Replies 3
Last reply 3/22/2018 - 2:46pm

  My husband just had his latest checkup after having to stop the Opdivo/Yervoy treatment.  He made it through three treatments and the side effects were just too hard on him--the last infusion was in June of 2017.  The tumors are still continuing to shrink to this day.....We feel incredibly blessed.  My heart aches when I read some of the postings here and I just wanted to throw out some good news for those of you who are having a difficult time.  A little hope can go a long way.

Thank you to all who have been such an encouragement to me. 

Bubbles (Celeste)---many many thanks to you for all you do!

Jim's wife

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mrsaxde's picture
Replies 14
Last reply 3/22/2018 - 12:23am

Hello Everybody,

There hasn't been anything going on with me lately, so I've not been around much. But last week I got the call from NIH that my cells are ready for transfer.

Dr. Shindorf told me that my melanin cells weren't "sticky" (her word) enough for them to do the newer protocol they had been looking at for me. But she said my cells grew well and are reactive, and so they are ready to do the bulk TIL transfer.

I go to NIH to be admitted on Monday evening (3/19). I'll get scans and have a tunneled catheter inserted, and then on Friday 3/23 I'll be starting the chemo preparatory routine. The cell infusion is scheduled for Friday 3/26.

I'll provide updates as things go if and when I feel well enough to do so.


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tedtell1's picture
Replies 8
Last reply 3/21/2018 - 10:05pm


In the last 4 or five days I have a new and weird growth on my chest. It does not look like a mole, rather it started by looking like a pimple now it has grown and looks like a blister with some redness around it it is about 2-3MM across and is gradually getting bigger. This came up really quickly so I can't believe it is melanoma related plus it doesn't look like a mole. This is all new to me since my first experience was a malignant tumor that was below the skin with no primary found. Any thoughts, I started Nivo three weeks ago and have had two infusions so far. 

I know I am hypersensitive, sorry, but this growth is also unlike anything I had before this diagnosis...

Thanks for any help you can give,


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Replies by: CancerSpouse, rosa1, Bubbles

I hope anybody who is in the path of the latest nor'easter is enjoying watching the snow as much as I am from my room at NIH. I know it's creating havoc on the roads but it's beautiful.

So the chemo starts on Friday afternoon, as long as my cells are confirmed to be ready when they do the final check. This morning I was presented with the latest bump in the road: I now have a brain met.

Fortunately one small brain met doesn't disqualify me from this trial. Drs. Shindorf and Yang explained to me this morning what was up. The met is about 3mm, on my cerebellum. Dr. Yang said that due to the nature of melanoma, sometimes brain mets respond to cell therapy. If it does not, he says it is in an area that would be easy to reach via surgery, or it could be treated with radiation, with what he said is about a 95% success rate. He did feel that surgery would be the better option if needed because it wouldn't leave behind any dead tissue.

So we're moving ahead, and we'll tackle that bump if and when we need to. Now back to watching the snow.


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justscared's picture
Replies 10
Last reply 3/21/2018 - 7:53pm
Replies by: justscared, Janner, SABKLYN

I haven’t received any sort of diagnosis - in fact, can’t call til Monday to even try to find a dermatologist. But I’m terrified right now. 

I have a spot about midway down my ribcage on my left side. I don’t think it’s even 5mm. But it’s a little oval almost that’s single-color tan in the center and rimmed by reddish brown. What’s driving me crazy is that I can’t remember how long it’s been there. It’s always hidden by my bra. 

I’ve never really concentrated on it before. It’s ever so slightly raised, but maybe it’s always been? And maybe that reddish brown has always been there too. But I’ve convinced myself it’s melanoma because I was an idiot 10 years ago and used a tanning bed occasionally. I’m 32, fair skinned, blonde hair and blue eyes. Can’t get much more high-risk than that. 

I’ve had other people look at it that say it looks like I gouged myself with my nail. But I don’t recall doing that, and why would it be brown still? And this has been there for a few months, I know that at least. Doesn’t appear to be changing. The center color matches a few other tiny spots I have down my torso.

I just don’t know what to do right now and my anxiety is destroying my life. 

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NSNewf's picture
Replies 13
Last reply 3/21/2018 - 7:41pm
Replies by: NSNewf, Rob578, bjeans, Linda5, Anonymous, Bubbles

Stay informed and know your sources.


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washoegal's picture
Replies 9
Last reply 3/21/2018 - 6:05pm

I am one of the "lucky" ones  with the BRAF mutation or so says my ONC.  Anyway my question for some of the more well studied in this group, if you have a gene mutation does that mean it effects you no matter you status (ie NED).  Specifically, is that Gene mutated within your body not just a Melanoma  Tumor?  What got me wondering was when my Onc suggested I have my regular cancer screenings Breast, Colon, etc more frequently.  Then I started reading the BRAF shows in Colon, non small lung, etc.  What I know about genes I can fill on about two lines.



Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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Anonymous's picture
Replies 3
Last reply 3/21/2018 - 2:36pm
Replies by: Janner, Anonymous

Our son started developing a growth along the left eye socket below his eyebrow.  At first we thought it was a pimple but then it got bigger and looked more like a growth, like a skin tag.  It was pinkish-red in color, not dark like a mole.  His doctor said it looked like a growth where the veins start growing outside the skin rather than inside and not to worry but recommended having it removed.  We took him to the dermatologist and they confirmed that it needed to be removed.

When we got the biopsy results, the PA asked my wife a bunch of questions but never explained the results to her but assured her that it wasn't cancer.  They said to her that he won't need chemo or anything but that they were going to refer him to a plastic surgeon to have the rest of it removed.  Based on the terminology of the report, I'm now wondering how can they be certain and how are they going to know how much to remove.  They made it sound as if the surgeon would know and that because they will have to go down to the fat layer and with it being on his face, the plastic surgeon would be a better option to minimize scaring.  We haven't spoken to the surgeon yet and we aren't sure if they are the right one to even speak to.  I'm going to try calling the dermatologist back and see what I can figure out.

I don't want to overreact but this is new to us and we are not sure what we are even reading.  I tried doing some research last night on Spitz tumors but I'm not even sure based on the wording of the report that this was the finding.

                                 ERYTHEMATOUS, GLISTENING, BLEEDING PAPULE.
                                 RULE OUT: PG VS. OTHER.




GROSS DESCRIPTION:  2 x 3 mm fragment

Sections show an intradermal melanocytic proliferation.  The melanocytic proliferation is composed of epithelioid and spindled cells with abundant eosinophilic to amphophilic cytoplasm and vesicular nuclei.  The nuclei display irregular contours and contain prominent nucleoli.  Rare mitotic figures are observed.  Within the epidermis, there are rare dyskeratotic cells.  The proliferation involves both lateral edges and is broadly transected along the deep microscopic edge.  Multiple level are examined.

The microscopic finding are those of the surface portion of an atypical compound melanocytic neoplasm with spindled and epithelioid cell features.  The morphologic findings favor the surface portion of an atypical Spitz tumor.  However, the lesion involves both lateral edges and is broadly transected along the deep section edge.  In view of these findings, as well as the presence of rare dermal mitotic figures, re-excision is recommended.

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Raco's picture
Replies 7
Last reply 3/21/2018 - 9:45am
Replies by: Linny, Raco, dessie, Bubbles

6days ago on March 12, 2018 I had CLND under my left are, my Dr noted that he removed a 

sack of lymph nodes and sent to pathology. No results yet.

question: Has anyone had issues with the back of

my upper arm feeling numb and from time to time I 

get needle pain around the 5.5” incision area. 

Will not see surgeon until end of next week for follow up 

And to have my drain tube removed, as of now

i getting about 4.oz in each 24 hr period but it will

be removed When it’s down to 1oz every 24 Hr period

THE next plan is to start on Opdivo every two weeks for a year

any feedback appreciated 





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