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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Ingekk's picture
Replies 2
Last reply 7/31/2017 - 5:41am
Replies by: Jacquie, J.bun

So I am back home from surgery. Still recovering, and my neck is looking like something from a Frankenstein movie. I dont mind it, but they removet a tooth from my lower back jaw, and that really hurts. GOing back next friday to hear what they found in the removed tissue. They told me that they could not se anything else than one large lymph when doing the surgery, so I guess that is good news. They still tell me thet the surgery are going to heal me, and they tell me that it will not likely come back again, as there is no evidence of any melanoma spreading trough the blood system. Still they recomend me to take radiation to be shure that any leftovers from surgery are taken care of. At this point there is no other treatment available for me as they think I should be free from melanoma after this surgerey. At the same time they also states, you never know for 100% with this diease.

Inge Kristian

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Anonymous's picture
Replies 1
Last reply 7/30/2017 - 7:21pm
Replies by: Janner

I recently had a mole shave biopsied. It was my first experience with any changing mole (I'm 45). It started feeling like there was a pimple underneath it and it got reddish. By the time I saw dermatology (about 8 days later), the symptoms were fading -- discomfort was gone, redness was gone, though the original mole was a still a bit raised at that point. I have no known family history of melanoma. 

The shave biopsy came back as "Compound melanocytic nevus with congenital features and mild to moderate junctional atypia. Junctional atypia focally extends to the margin."

I was sent to dermatology surgery for excision. The surgeon told me these rarely turn into melanomas but that hte standard is to excise.  When I asked about the reasons, he told me that when they get into that "moderate" range they like to remove them, and that they also wouldn't want me to forget about the spot and not notice changes in the future.

I did my own research and what I'm finding is studies that suggest the outcomes for moderate atypia are similar to mild in that they don't turn into melanomas, whether excised or not. Further, recurrence of the atypia is low (4%). (for example, this, this, and this).

Am I missing some research that conflicts with these conclusions? I understand that the conclusions in these studies aren't absolute --- that they can't say there isn't any risk, but they do seem to suggest that risk is pretty low of just observing plus annual skin exams rather than excision.

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MindyD's picture
Replies 28
Last reply 7/30/2017 - 1:35pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

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Detroit97's picture
Replies 5
Last reply 7/30/2017 - 12:03pm

Hello everyone! My name is Julia, I'm 38 years old and diagnosed yesterday with melanoma. I've had this spot on my back, literally on the skin above my spine, for several years.  Recently I've been really sick but now I'm wondering if this is all related.  I'm also wondering that if it did metastasize, would it go to my spine? I'm still waiting to hear back the specifics from my doctor but I do know the sample size was 4 mm. I saw the sample and it did have some depth to it. Has anyone gone through a similar situation? Thanks for all of your help and support! I'm nervous. sad

 

Julia  

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/30/2017 - 9:31am

  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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jennunicorn's picture
Replies 4
Last reply 7/29/2017 - 3:08pm

Hi guys! Just wondering if any northern cali peeps will be at the Miles for Melanoma 5k tomorrow in Golden Gate Park?

Team Jenn will be out there walking our butts off :)

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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thinkingofu's picture
Replies 6
Last reply 7/29/2017 - 11:58am

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 

heart

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Mat's picture
Replies 3
Last reply 7/28/2017 - 8:48pm
Replies by: Bubbles, Mat

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 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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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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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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Casitas1's picture
Replies 8
Last reply 7/27/2017 - 6:56pm

Well, after a long day... An hour and a half drive, (luckily along PCH ) three hours of scans, needles, blood and waiting. You all now the routine! My Oncologist ( Rock Star) after what sounded like an ear full from a not so happy patient next door(These Drs. have highs and lows just as we do) came in and told us your scans are perfect! You are still NED!  Ned and i have been hanging out for a year now and have been off Pd-1 Pembro after jumping ship due to side effects 8 Months ago... Thank you all for loads of support and tons of the best info around!

Best wishes to everyone, Paul

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/27/2017 - 11:41am

I will be starting immunotherapy treatments next week.   Nivo.   Naturally my Dr. discussed side effects with me but here's what I didn't ask.  As far as nausea, rashes, fever, etc., are concerned, for the most part...is it typically something that starts right after treatment and then gradually subsides until your next treatment or is it something that stays with you.  I know everyone is different and experiences different side effects, but I would like to hear about your experiences.  If I do have some or all of the side effects I would like to know if it will remain an issue or if I might start feeling better after a few days or a week.  Also, does it get any better after additional treatments or stay the same.  In other words can you build a tolerance the side effects once your body is more used to the drug.  From what I'm reading it sounds like that's unfortunately not the case; as some people mentioned having to stop a particular treatment because of side effects.  

Thanks everyone, and as always hoping and praying for the best for all of you!

 

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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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Anonymous's picture
Replies 1
Last reply 7/26/2017 - 11:21pm
Replies by: CindyJ

My husband was recently diagnosed with stage IV melanoma which has spread to his lymph nodes.  So far he has felt just fine (physically), and treatment will start next week.   However, the day after an MRI (with compound) two weeks ago, his arm where the IV was became extremely sore as did the areas where the tumors are near his armpit, chest and neck.  His forearm was red and swollen.  This lasted about 3 days and slowly subsided.  I googled and read about extravasation which is a problem that occurs when contrast leaks into the tissue around the vein with the IV was placed.  An article I was reading said it was rare but it happens, and it described his exact symptoms.  We assumed that’s what had happened.   Than late last week he had a CT scan and it happened again.  He was in agonizing pain all weekend.  Saturday you could tell through his shirt that his peck muscle on that side was swollen.  Sunday that was gone but there was swelling around his neck and shoulder.  Today he is starting to feel better.  He just thinks it’s the cancer; the tumors starting to cause pain.  I think it’s pretty odd that it happened each time after those two tests.  However, I researched and was unable to come up with any information that MRI’s or CT scans caused this kind of discomfort, and I know the same compound is not used in both tests.   I’ll ask his Dr. at our next visit, but meanwhile I’m just wondering if anyone else has experienced this. I know we have more serious things to worry about down the road, but I am just wondering if all this pain is from the cancer or from the test.

Thank you

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