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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kp23's picture
Replies 6
Last reply 8/27/2017 - 7:29pm
Replies by: kp23, Janner, Anonymous

Hello...a little background before my question.

End of July I noticed a spot on my right thigh - not a mole and not a freckle - a little bigger than a freckle, but smaller than a pencil eraser. It has been there my whole life, but I noticed it seemed to be darker. Didn't notice any new colors, and there was no change in the size at all, just seemed darker than normal. I kept an eye on it, and of course poked around at it - because, anxiety - often to assess whether the texture/feel of it had changed (it had not). Then a couple of weeks later, I noticed it seemed just slightly raised...scratched and poked it and was able to kind of peel away a layer. No blood or oozing, and a thin scab formed after. A week later, I saw my dermatologist. Scab was still partially there - showering had washed away part of it and underneath was pinkish skin. 

Dermatologist did a shave biopsy, and results came back last week benign. I have not read the full path report - I spoke with my dermatologist over the phone and she explained it was a benign sun spot according to the report. I did check with the lab to verify that it was a dermapathologist who did my biopsy. My dermatologist is going to have their in house dermapathologist look at my biopsy, too, for peace of my mind. 

Here is my question - not sure if it's crazy, but I've been feeling super anxious and need to ask it. Is it possible for a path report to be wrong? What if this happened to be a fast growing melanoma that grew downwards quickly...would it be possible for there to be no more atypical/cancerous cells at the surface, therefore resulting in an incorrect diagnosis of the biopsy? Does that even make any sense? My dermatologist told me not to worry, but I am so worried! My fear is what if the path report is wrong, and the cancer spreads and game over. 

Thank you in advance to anyone who takes the time to respond. I deeply appreciate it. 

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Kristi A.'s picture
Replies 5
Last reply 8/27/2017 - 10:35pm

HI guys! Haven't posted in a while but I was wondering if someone could help me out with something. I've been having a bruised pain feeling on my left ribcage for about a week(same side as my melanoma-stage 4). Doesn't seem to be getting better and I don't remember doing anything that could have caused it. Hurts to touch it, twist top part of body and when I'm stretching. I do not see any obvious bruising or redness on the skin, just bruised pain on the inside. So my question is is has anyone had any mets to the ribs and if so, what was the pain like or how did you know you had a met there? Just a little worried and hoping to hear others experiences. Any thoughts or ideas are greatly appreciated. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/7/2017 - 11:54pm

Anyone have any experience with large tumors in abdomen area?  My husband was rushed to the ER last week with the starting of a distended abdomen and other symptoms. He was clear 3 months previous. Very very scary and in the hospital for a week. He is now on Taf/mek. 

Any info would be appreciated. 

Thank you. 

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Hawthorne7304's picture
Replies 2
Last reply 10/13/2017 - 3:27am
Replies by: jetdoctor67, Anonymous

Hello! I was diagnosed with Superficial Spreading Melanoma 2 weeks ago. This past Monday I saw a plastic surgeon who will do the wide excision and sentinel node biopsy. My derm did a shave biopsy, the pathology report showed 0.82mm thickness (although I'm feeling like that's probably not accurate given the shave biopsy), cells are showing mitosis and the borders were not clean. This thing came out of nowhere and grew FAST. My biopsied spot has healed and as of two days ago just appeared dark pink. Tonight I noticed it's black again and looks larger than before!! My surgery is schedule for Sept 5th and I'm afraid that's too long to wait. Is this normal to wait this long or should I call and push them a little? I'm 39 and a mom to two little ones and this is all I can think about. 

Thank you for your feedback!!

Noel

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mjanssentx's picture
Replies 5
Last reply 9/2/2017 - 10:18am

...I never know if I should post good news at this point but you know what, good news is good news.  For newcomers, I was diagnosed as a 3A patient 2.75 years ago.  I was one of the last patients to get Interferon.  At the time, it was the only approved treatment for Stage 3 patients...but I survived it after a pretty miserable 2015.

Anyway, after 2 years of quarterly PET scans and annual brain MRIs I continue to show no signs of reoccurrence (NED if you will)....got my last scans 2 weeks ago and did the happy dance.  My underarm still hurts where they did the full nodal removal but I can live with that.  More importantly my confidence and attitude toward life in general has improved dramatically.  My son got married a few months back...and my wife look forward to planning an extended life together after 32 years of marriage.

Just wanted to post to encourage others that have been diagnosed recently and are scared to death like we were.  I used to cry myself to sleep for almost 2-3 months after being diagnosed, lost 25 pounds, and clouds were out everyday.  Looking forward to Yellowstone next month...

Stay strong.

Michel

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Bubbles's picture
Replies 19
Last reply 8/29/2017 - 3:18am

Hey guys, 

Having written the basics of current care for melanoma (for Stage IIIb and up) for folks on this forum and via emails at least every other week for years....it suddenly dawned on me to put it together...for realz!!!

So...here you go:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

Feel free to pass the link on to any that you feel might find it useful.  Wishing you all my best.  Love, celeste

 

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NicholePhillips's picture
Replies 3
Last reply 8/25/2017 - 2:31pm

I was diagnosed in February 2015. Stage 3b. I was NED since April 2015 and had interferon treatment for a year which was completed in June 2016. My latest CT scan showed tumor in my rt pelvic area and confirmed melanoma. They believe its lymph node related. I did have 8 nodes removed back in 2015. I see the surgeon and oncologist next week. Anyone else with recurrence like this and if so what is next? Surgery and more treatment? 

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/31/2017 - 10:07am
Replies by: cancersnewnormal, jrtufo, Anonymous, Bubbles

Hello, my mother was diagnosed with Malignant Melanoma in 2014. She had undergone surgery wide excision and reconstruction on left lower part of abdomen and hip region. In 2016, she had left inguinal LN recurrence and  went through Left ileo inguinal block dissection. Currently, she is detected with BRAF v600 mutation. PET scan shows metastatic liver, spleen and bone lesion.

The doctors are suggesting either to go with Zelboraf or Chemo therapy. Can you please suggest, will Chemo be useful in case of Malignant Melanoma?

If we go with Zelboraf 960mg, 4 tablets in every 12 hours, will this help? I wanted to check, how effective Zelboraf is, and will it help curing Malignant Melanoma? This medicine is not readily available in our country and if it is, the suppliers are sellig at a very high rate.

Can you please help me decide if I should go with Chemo therapy or Zelboraf? 

Your quick respose is highly appreciated.

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Yesterday, I went to the dermatologist to look at a nasty "mole" on my thigh. He looked at it, did a partial excision for biopsy and basically said: "I suppose I could be wrong, but I'm almost sure that's melanoma and it's very thick. Once you go over 4 mm it really doesn't matter, and this is definitely over 4 mm. We'll put a rush on this, and my guess is we'll send you down to [local big hospital with cancer center], and they'll do a full excision and test what's called a 'sentinel node' and other nearby nodes to see if it has spread."

So I'm waiting on the biopsy and just learning about melanoma while I wait. The Derm didn't struck me as a cavalier guy, so I'm thinking he feels pretty confident in his diagnosis--though I obviously hope he's wrong.

So what I'm trying to get a feel for (and can't find anywhere) is what percentage of "thick" melanomas (assuming for a second that's what it is) end up being Stage 3 or Stage 4? I've had some family members and close friends with cancer, so I'm well aware that "every case is different" and all that, but I'm an analytical type, and I just want to get a sense of my odds. We have to wait on the biopsy results, and then (presumably) go down and have the nodes tested, so we're still a good number of days away from finding out whether it's spread IN MY CASE, but I just want to get a sense of what the likelihood might be. 

55 y/o WM, fair skin, red hair, blue eyed, but no family history of melanoma. Anyone know where I might find the percentages I'm looking for?

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Megara984's picture
Replies 6
Last reply 8/25/2017 - 4:03pm

Hey all. My husband just started having really bad knee pain behind his left knee. He's had some pain there before being diagnosed with melanoma. I'm wondering if the Opdivo/Yervoy is making it worse? He taking a low dose of Advil or Tylonel to help. Has anyone experienced this? Is it a side effect? Or is it the immunotherapy working on his bones. (His Melanoma is in his bone to some extent). Thanks. 

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smyers5015's picture
Replies 3
Last reply 8/24/2017 - 3:31pm

Hi All,

I was diagnosed with metastatic melanoma in April 2017.  I had a 8x6cm mass on my left adrenal gland and a 1.3cm nodule on my right lower lung lobe (according to the PET scan just before treatments started.)  I'm also hypertensive which I take lispro, and type 2 diabetic which I take insulin.  I was able to make all 4 treatments and really the only side effect I went through during treatments was fatigue.  At 3 weeks after the final infusion I had a 2nd PET scan which showed the adrenal mass had reduced to 4.5x3cm and no change in the lung nodule.  A day or 2 after that PET scan I started having some bad side effects... extreme fatigue, muscle and joints sore to the point I didn't have full mobility, diarrhea, lost normal taste, and now produce almost no saliva.  On top of that without changing my meds or usuall diet I went hypoglycemic 3 times and found my blood pressure had dropped to 107/54 (probably the cause of the extreme fatigue).  My oncologist put me on Prenisolone 5 day pack and by the end I felt better than I had in months... seems everything cleared up except for the taste and saliva production.  The night after the pack was finished my blood pressure dropped again, and 2 days after all the symptoms came back with fever and chills added.  For some reason he seems adverse to keeping me on the steroids.  Has anyone had these type of symptoms?  What did your onc. do for it?

 

Thanks for any input!

Steven

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yulkame's picture
Replies 2
Last reply 8/24/2017 - 6:26pm
Replies by: yulkame, Bubbles

Hello,

Has anyone successfully tried T-VEC injections at an advanced stage 4? What was your experience/side effects?

Ippi/Nivo, and Pembro seemed to have failed. Lots of bone mets, and the platelets are very low, requiring frequent transfusions. Bone marrow is probably involved. 

Another question--has anyone tried intralesional IL-2 injections? What was the outcome/side effects?

This is for my mom , I wrote the post about her history in (https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/treatment-options-failed)

One more question, has anyone tried any targeted therapies for NF1? If so, what are the side effects and outcomes?

Thank you!

Yuliya

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Anonymous's picture
Replies 5
Last reply 8/24/2017 - 3:55pm

My husband was diagnosed with melanoma 2 days ago.  The dermatologist did an excision biopsy.  The Breslow depth is .24mm but that is all of the information my husband was given.  I've requested a copy of the pathological/histological report and I will find out the Clark level, mitosis factor et al.  The dermatologist referred him to a surgical oncologist.  Is this standard procedure for a very thin tumor or does this referral suggest something more serious was seen in the report but not shared with my husband?  His appointment with the oncologist is in 3 weeks.  That seems like a long time.  I won't be able to wait that long for staging information.  I'm preparing myself to understand the pathology report.  Can I be given the actual histological images the pathologist viewed?  Those are what I'm focusing on.  I have jumped head long into learning everything I can about the biology of this disease.  I'm not a wierd, bossy, control freak wife but my husband isn't big on in depth research of anything medical, especially a diagnosis that is scaring him badly.  I'm scared too but knowledge is power and I'm more frightened by not understanding.  Thanks. 

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Jdc's picture
Replies 6
Last reply 8/29/2017 - 11:22pm
Replies by: Jdc, BrianP

Hi all, I finally got in to  melanoma specialist for my second opinion. unnfortunatley it was after i started 1 round of ipi, the specialist advised me that a pdl1 test should have been done as was not. He sent for the test and it was positive pdl-1 and also braf positive. he advised that i not resume ipi and start on keytruda along with radiation on another spot on lung that grew from 6 to over 9mm in 3 months. I had some pituitary swelling about 4-5 weeks after ipi infusion causing severe headaches and some vision changes.Wondering if anyone knows if keytruda will effect this also? i see the doc this friday ill update more then. Thank You all!!

Joe

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AlexBogues's picture
Replies 3
Last reply 8/23/2017 - 7:25pm
Replies by: Anonymous, Janner, AlexBogues

So about two weeks ago I went to a dermatologist for the first time to have a mole on my left shoulder/back checked out (http://imgur.com/a/OiTNU see image). I got the results last week and they said it was a Compound Nevus with Severy Atypia. I was very scared hearing sever and began to worry. I am scheduled to get it removed this Friday and am afraid some of the back pain and sholder pain im having on the same side as the mole is melonoma that has spread.

My question is how unreliable could a shave biopsy be to diagnose melonoma? If they called it Sever Atypia could the worse the diagnosis be "Melonoma in Situ?" Could my back pain be melonoma that has spread to my bones.

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