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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Tracyyy's picture
Replies 2
Last reply 3/23/2018 - 11:07am
Replies by: Tracyyy, Bubbles

Hi all! Just wanted to say that after all the struggles to find proper treatment in my country we managed to find a good trial here and mum finally started treatment today! She is in the triple combo Dab/Tram + PDR001 or Dab/Tram +placebo. We do not know what she is getting because it is double blinded but good thing is she is getting the BRAF inhibitors for sure. She is stage 3c unresectable. Hope she will get a durable response. Is anyone in the same trial? Best wishes to you all!

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dessie's picture
Replies 5
Last reply 4/1/2018 - 3:06am

Hey all

Yesterday was my second dose of 240 mg of Opdivo.  It went well but noticed it was over in no time... Came to find our they are now infusing the 240 mg over 30 minutes rather than an hour.  The only reaction  I have had is skin itching  and weird skin outbreaks (as I had and still have with my first infusion) but the fatgue was more this time. Slept 12 hours but going to work this am.  The nurse said that they are ramping up the time of infusions as well.  

Anyone taking the 240 mg dose notice this?  So every 2 weeks a 30 minute infusion of the 240 mg is now my regime rather than an hour.  As long as it works... im ok with it.

Beats the alternative!!

All the best 

Dessie

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dessie's picture
Replies 1
Last reply 4/16/2018 - 1:44pm
Replies by: Raco

Hey all

Yesterday was my second dose of 240 mg of Opdivo.  It went well but noticed it was over in no time... Came to find our they are now infusing the 240 mg over 30 minutes rather than an hour.  The only reaction  I have had is skin itching  and weird skin outbreaks (as I had and still have with my first infusion) but the fatgue was more this time. Slept 12 hours but going to work this am.  The nurse said that they are ramping up the time of infusions as well.  

Anyone taking the 240 mg dose notice this?  So every 2 weeks a 30 minute infusion of the 240 mg is now my regime rather than an hour.  As long as it works... im ok with it.

Beats the alternative!!

All the best 

Dessie

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Anonymous's picture
Replies 2
Last reply 3/24/2018 - 2:52pm
Replies by: Edwin, Bubbles

Hello,

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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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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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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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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Hukill's picture
Replies 8
Last reply 3/23/2018 - 2:38pm

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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tedtell1's picture
Replies 10
Last reply 3/28/2018 - 8:34pm

Hi;

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,

Ted

Ted

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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.

-Bill

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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.

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

DIAGNOSIS:

LEFT GLABELLA

ATYPICAL INTRADERMAL MELANOCYTIC NEOPLASM WITH SPINDLED AND EPITHELIOID CELL        FEATURES, SURFACE PORTION; PLEASE SEE COMMENT.

GROSS DESCRIPTION:  2 x 3 mm fragment

MICROSCOPIC DESCRIPTION:
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.

COMMENT:
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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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. 

https://rationalwiki.org/wiki/Joshua_Lee_Axe

 

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Anonymous's picture
Anonymous
Replies 33
Last reply 4/11/2018 - 2:37pm

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Casey301's picture
Replies 7
Last reply 3/20/2018 - 4:21pm
Replies by: Casey301, bjeans, Janner

Hi all,

I recently had a shave biopsy, I believe it was a deep shave. I didnt know that an excision is suggested when a mole is suspicious, so now I am questioning why the doctor removed it with a shave biopsy. My pathology results are:

diagnosis: compound nevus with moderate atypia at the dermoepidermal junction, dysplastic nevus, see note.

note: the lesion appears narrowly excised (focally very close to the base). If any pigment remains or recurs at this site, complete conservative re-excision would be prudent. 

Gross description: the specimen grossly was oval shaped, measuring 6 x 5 mm on the surface and 1 mm deep. It was divided into two sections on the long axis. All of the tissue was submitted for processing. 

Miscroscopic description: there is elongation of the rete ridges with atypical melanocytic proliferation in single cells and nests. The epidermal component is seen to extend beyond the confines of the dermal component. Papillary fibrosis is noted. Dermal nests show maturation. 

The report doesnt seem to mention if its definitely not malignant or not. Do I need an excision to be 100% sure? Or can I be sure this isnt melanoma? I made an apt with my doctor anyway to discuss the results and ask for an excision biopsy. I would like it all removed anyway. I didnt understand what narrowly excised and focally very close to the base meant. It sounded like the shave wasnt adequate?

any help would be appreciated, thanks. 

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Anonymous's picture
Replies 4
Last reply 3/20/2018 - 11:26am
Replies by: Janner, Anonymous

Hi All, 

i just noticed a spider like “mole” on my hand today. It looked so shallow but still a little bit brown. I never noticed it before. I had three atypical moles before and panicked at once. However, when I rubbed it really hard with my finger and soap. It was almost gone. I am on a business trip today and cannot call my dermatologist and I am so stressed now. Can melanoma appear overnight or rubbed off by hand? I thought it might be some ink stick to my hand, but still so hard to wash it off. Thanks 

 

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