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.

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Hello everyone

Thank you so much for being so helpful in the past. I have another question regarding your experience with treatment. 

My mother has stage IV Melanoma, mets in brain (3) and in the lung (1). 

There was swelling in her brain caused by two of the mets (liquid around them) which was taken care of during the operation. Two of the mets were taken out during the op and 1 is still there. 

We are preparing to move her to another hospital, but doctors are considering giving her first round of treatment now. 

We have mentioned Keytruda to them which they know about and think it may be helpful, but they are saying that Keytruda may produce another swelling (liquid) in her brain. 

Is that a known side effect of Keytruda and other immunotheraphy drugs?

Thank you 

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MelanomaMike's picture
Replies 4
Last reply 7/28/2017 - 1:48pm
Replies by: sister of patient, Anonymous, WallyE

Hello brothers & sisters of the Melanoma bug, im Mike and i stumbled upon this site thank God, its been a chalk full of info so far. I was first diagnosed in 2008 stage 3b all in my left leg, since then ive had 6 surgeries one being in my Lymphnode area {left groin} where it had traveled to. We spoke {my team} of chemo but decided on just surgeries. My last surgery was June 29th 2017 {surgery #6} also in my left leg {shin} apparently its DNA wasnt related to past Melanoma tumors, a new breed of sorts, and some sad news, my last PET/CT revealed a spot in my Right lung {lower lobe} & a smaller one in my Left. I see an Oncologist tomarrow morning for a second opinion {other then my primary one} out in Riverside Kaiser to discuss a game plan. Ive already spoke with a Thorax spc. of course hes talkin surgery, a brutal one in comparness to my leg ones, braeking rib bones, deflate lung, poke & feel around for the tumor and finaly "snip"..yixe!!!..so, i wanna get a second opinion, im thinking hell, itr keeps coming back now, Chemo just has to be my answer right? surgeries seem to average 2 to 3 years then comes back. Now that its broken through my {what i call} Lympatic Road Block, and now in m my lungs, i think its time. Ill post what happens tomarrow after my visit, im very glad i met you all here at MRF {MPIP}...Feel free to ask questions or give insight, im seeing alotta good things about Yervoy so, i will ask about that...Thanx...Michael Pruitt Van Nuys Calif.

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msitz's picture
Replies 6
Last reply 7/28/2017 - 2:13pm

My father was diagnosed with stage 4 Melanoma (primary unknown) in March 2015 with lung, bowel and lymph node metastases at the age of 59. He had a very large tumour burden with multiple huge (up to 8cm) tumours and had a bowel perforation prior to starting treatment. There were no treatment options available for him in Canada so we brought him to MD Anderson for an opinion.

He was started on Keytruda in March 2015 and had a near complete response. He did have an inital scan immediately after starting treatment that looked like progression but this turned out to be pseudoprogression as subsequent scans showed a dramatic reduction in the size of all of his tumours. Once his CTs stabelized, he underwent a PET scan that showed that he had just one tumour that was still active. This one tumour remained active on PET for 6 months so we decided to remove it in case it was a resistant piece of melanoma.

He just underwent surgery at MD Anderson last week to remove this piece of tumour. The final pathology report is back and there was no melanoma in the tumour, just inflammatory cells. He had a complete response to Keytruda!!

I am posting this to let those of you out there know that there is hope despite a large tumour burden. My was extremely sick in March of 2015 (details in previous posts). Positive stories on this forum kept our family going so we are hoping to pass along the good news.

All the best to everyone.

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betsyl's picture
Replies 5
Last reply 7/27/2017 - 9:51pm

Greetings! I have a question that has been nagging me for a while.

According to cancer.org:

"The numbers below are among the most current available. But to get 5-year or 10-year survival rates, doctors have to look at people who were treated at least 5 or 10 years ago. As treatments are improving over time, people who are now being diagnosed with melanoma may have a better outlook than these statistics show."

"Stage IV: The 5-year survival rate is about 15% to 20%. The 10-year survival is about 10% to 15%."

https://www.cancer.org/cancer/melanoma-skin-cancer/detection-diagnosis-s...

So, my question is when will we know the *new* 5-year and 10-year survival rates now that more effective treatments are widely available? Keytruda/Opdivo were approved in the last few years, right? So that means the new "official" survival numbers will be available in the early-to-mid 2020s? And, of course, the "new normal" is a moving target as further advances continue to be made.

With all this in mind and given that we already have some data on response rates and durability, are there any credible estimates for the new 5-year and 10-year survival rates?

Cheers and best wishes,

Betsy

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Hollybmeuc's picture
Replies 6
Last reply 7/27/2017 - 8:48pm

This site is amazing. I've learned so much here and I thank you very much. I have stage 3a melanoma and 3 days ago I just started yervoy treatment. 10 mlg every 3 weeks x4.   I'm wondering how others experiences were with side effects, who've had this treatment.       I'm only  itching really bad and get fatigued early in the day.  I feel pretty good so far.                                                            I'm hoping I can continue working okay. I'm also curious of if it's helped as well. Thanks,    Holly

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/28/2017 - 2:15pm

For those of you who responded to my queries about coumadin and biopsies, I wanted to thank you again and let you know that my husband's biopsy today went very well and that he did not have to stop his coumadin.  The surgeon said he thought the lesion was squamous cell and no danger but we'll get the formal results within a week.  We don't anticipate further issues.  The personal stories you shared alleviated so much stress for me.  Thank you all!

 

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Anonymous's picture
Anonymous
Replies 0

For those of you who responded to my queries about coumadin and biopsies, I wanted to thank you again and let you know that my husband's biopsy today went very well and that he did not have to stop his coumadin.  The surgeon said he thought the lesion was squamous cell and no danger but we'll get the formal results within a week.  We don't anticipate further issues.  The personal stories you shared alleviated so much stress for me.  Thank you all!

 

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Sorry for wimpy question.  I am having two of these on upper/lower back for "evolving melanoma in situ" and a severe atypia.  Think both are 5 MM margin cuts.  I choose local against surgeon recommendation for general anethesia. He said--this will hurt!

Any advice for pain/nerves for this procedure under local only. wasnt nervous until he said it would hurt and started thinking about the whole dx and the surgery.  thanks for all the great posts and feedback.  This site has helped me a lot in the last two weeks understand something i didnt know anything about.  THANK YOU

Jason

jason

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Photopassion's picture
Replies 2
Last reply 7/26/2017 - 5:43pm
Replies by: Photopassion, AZSoCal

I just got my pathology report from a mole that recently developed a dark spot within it (during pregnancy, if that's relevant). It was officially diagnosed as a junctional spitz nevus in a special site.

After reading about the spitz nevus, I became worried since they normally occur in children and are often very similar to melanomas.

My doctor told me it was benign but recommended getting it excised with 2 mm borders which I plan to do. I'm thinking about getting a second opinion on it from another pathologist just to be sure.

In the meantime, I was wondering if anyone could help out with the pathology report to see if it sounds like melanoma was confidently excluded. Everything I read about the Spitz nevus and the sudden change in the mole made me very anxious. Thanks!

There are sharply demarcated nests of large spindle and epithelioid melanocytes confined to the epidermis which shows hyperkeratosis, hypergranulosis, and hyperplasia. These nests are relatively uniform in size amd shape, and vertically oriented. A lymphohistiocytic perivascular infiltrate, dilated blood vessels, and edema of the papillary dermis are noted. Additionally, significant loss of P16 expression is not noted throughout the melanocytic population, a reassuring feature. An MITF immunostain is done and no significant upward spread of melanocytes is identified. Multiple deeper sections were studied.

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Anonymous's picture
Replies 3
Last reply 7/27/2017 - 10:56am
Replies by: Jamie1960, geriakt, Prd10

Hello all,

I was diagnosed with melanoma in situ in the matrix of my left thumbnail in late 2012.  The tumor was excised using slow Mohs surgery in Dec 2012 - margins pronounced clear.  

In Sept 2015, I underwent a 2nd series of slow Mohs excisions of the same area after a biopsy of pigmentation of skin in the same area as the tumor was declared to be "dysplastic nevus".  Again the margins were "cleared". The wound encompassed the top of my thumb, including a small portion of the tip, almost to the knuckle and extending the full width to either side.

In June 2017 a new freckle appeared in the same area near the site of the original nail bed.  There is also slight darkening of the area around the small stub of nail that has regrown (twice).  Biopsy revealed "Junctional melanocytic proliferation, recurrent, extending to the deep margin".

The pathologists comment was: Given the history of melanoma in situ, as well as an atypical melanocytic proliferation worrisome for recurrent melanoma at this site, a complete excision is recommended in order to ensure that this lesion does not re-recur.

At the follow-up with my dermatologist, he stated that due to the previous surgeries having gone down to the level of the bone and the extent of the area removed, he wondered if he would be able to give me clear margins.  Also, since this is the third time abnormal cells have appeared, there is some reason to think they will keep growing in that area.  So, he referred me to an orthopedic oncologist and the treatment plan is amputation of the distal phalanx of my thumb.  

Has anyone else had a similar experience?  I am having a hard time scheduling the removal of half of my thumb (although it is on my non-dominant hand), but I understand that the reccurrence of abnormal cells and the lack of tissue at the site have led to this recommendation.

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selenarae's picture
Replies 2
Last reply 7/27/2017 - 9:46pm
Replies by: selenarae, SABKLYN

I had a mole biopsied in early March and it came back as a "Compound Melanocytic Nevus with Moderate-to-Focal Severe Atypia". The lesion extended to the deep biopsy edge. I then had it excised and got myself a tiday 18 stitched in my back and there was no remaining nevus after excision.

Now, a couple of weeks ago, I had 4 other suspicious moles biopsied. I just got the results and only 1 is recommended for excision with the other 3 being given the option of "wait and see" or "excise if you want to"...My question is, what would you do? I'll be discussing all of this with my doctor, of course, but I'm curious about other people's opinions. After describing the 4 lesions, I'll add other details.

These are the 4:

1) Lentiginous Junctional Melanocytic Proliferation with Moderate Atypia. The lesion extends focally to the deep edge. Conservative re-excision of this lesion is recommended.

2) Lentiginous Junctional Melanocytic Proliferation with Mild Atypia. The lesion extends to the peripheral biopsy edge.

3) Lentiginous Junctional Melanocytic Proliferation with Mild Atypia. The lesion extends to the peripheral biopsy edge.

4) Compound Melanocytic Nevus with Mild Atypia Extending to Deep Edge.

OK, so obviously #1 has to go. I think #4 is fine, with monitoring, and doesn't need further excision.
 

#2 and #3, however, though they have mild atypia, extend to the peripheral biopsy edge. In my lay opinion, it seems to be that the medical assistant just didn't cut widely enough, and missed getting some of the mole at the surface level. Would that be a case where they could just re-do a wider shave, or is it OK to just leave alone and watch it? The reason I am hesistant to excise any more than I need to, is because #s 1-3 are all along my spine. :( I'l already concerned about having a "conservative excision" so close to the middle of my spine, just under my bra line. Then again, I figure if they are going to cut me at the top of my spine, what's 2 more cuts? 

I'm pretty new to this and I know these have not yet reached full melanoma status, but I feel like I am working to stay ahead of them, so that they don't have a chance to turn into melanomas. Any insights would be greatly appreciated. 

--Selena

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Anonymous's picture
Anonymous
Replies 7
Last reply 7/26/2017 - 7:38pm

  If one had to choose one over the other--which would it be?  Does one have fewer side effects?  I realize everyone will resond to the treatment differently.  I just would like some input on why one is "better" than the other.  

Thank you

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Mat's picture
Replies 2
Last reply 7/28/2017 - 10:00am
Replies by: Mat, Bubbles

Hi folks, I'm generally doing well and will post a more detailed update.  In the meantime, question--my latest side effect is pneumatosis (gas bubbles in colon wall).  It is asymptomatic, but has been showing up on scans--and increasing--over the past several months.  Has anyone seen this as a side effect of treatment (nivo) or prednisone use?  If so, how has it been treated?  Thanks.

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/26/2017 - 5:47pm
Replies by: AZSoCal

Hello Everyone,

First off, I just want to say that my deepest thoughts, prayers and condolences, are with everyone fighthing this horrible disease. I feel bad for posting my maybe good news on this forum because everyone else is going through so mucj, but I am not sure where else to go for some advice in this subject. About 7 months ago, I was diagnosed with Stage 1a melanoma at a depth of 0.23mm with regression present (Did not specify how much) and no mitotic activity (0 mitosis per square). It did not contain any other worrisome factors such as ulceration, lymphocytic inflatration, etc. so in that sense it was a low risk lesion. Even though it is a low risk lesion, I was having trouble psychologically dealing with this and moving past it. I would constatntly think about this returning and coming back, and it has been on my mind daily sense my diagnosis. When I did receive my diagnosis I asked if we could send the slides to another pathologist for a second opinion to hear their thoughts and just confirm the original one. The pathologist that the slide got sent to has specialized in second opinions on melanoma for around 20 years now, and he has over 30 years of experience researching and dealing with melanoma, and is considered one of the experts in his field. Anyhow, my lab group ended up sending the slides to him and he took a second look and just recently about one week ago changed my original Stage 1a Melanoma to a severly aytpical melanocytic hyperplasia. I have already had the WLE done on my original site and all margins were clear with no problems at all. I do realize that my original legion was not extremely high risk, but just the fact that their was that risk messed with me psychologically pretty bad, and it was affecting my day to day life. When I got the second opinion back from the other doctor, I really just could not believe it and still cannot. I mean to have this actually not have been cancer would mean so much to me mentally and I am not sure what I should do at this point. Should I take the second opinion and be overjoyed with the good news? Do you think I should get a third opinion, what is everyones thoughts. Thank you everyone for taking the time to read this post, and again, my thoughts and prayers with everyone going through such hard times at the moment.

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Andrea in Nashville's picture
Replies 1
Last reply 7/26/2017 - 5:42pm
Replies by: AZSoCal

Hi guys,

First time posting but I've been lurking since I was diagnosed in April. Just wanted to share some good news. I was slated to start Ipi on Friday. My oncologist saw the press release about the ipi/nivo adjuvant study and asked my insurance if they would cover the nivo, and they said YES! I can't beleive it and I hope this can help some of you stay away from ipi if possible. 

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