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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Dwilkinson's picture
Replies 2
Last reply 9/26/2017 - 10:34pm

Any advice?

I need to get my path report tomorrow to see it with my own eyes. But I had a mole removed for suspected melanoma on 8/28. Path went off to Mayo for several weeks, had cytogenetic testing, melanoma FISH, not sure what else and came back the dermatologist told me today "Severely Atypical Sptiz Nevis, Malignant Melanoma can not be ruled out"

She found 2 other moles she didn't like that she shaved off and sent off to Mayo. She told me I'm in a rare "grey" area where no one knows how to treat me because people my age typically don't get these moles? I'm 34 and my mole appeared after a month in the tanning bed 2 years ago. It started as a scab and when it healed it was a mole. It was on my leg and I couldn't see it so I just never did anything about it. I did already have a wide excision and she said my margins were clear but weren't 1 cm.

She said that 20% of people who have a lymph node biopsy will get a false positive for melanoma and could cause me to get unnecessary treatment. If I want a second opinion, where do I go? Oncologist? Another dermatologist? 

 

Thank you you for your help! I feel confused and lost. 

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/26/2017 - 8:56pm
Replies by: stanjuza, Anonymous

Hi,

I recently noticed a mole on my back that was black but very tiny (2mm diameter).When I saw how dark it was I panicked. I dont know how long it's been there as its in the middle of my back and never noticed it before. I looked through some pics found it one a pic from 2 years ago, but it was from a far, so can't tell if it was as dark as it was before removal, but I don't think it looks dark in the pic, but hard to say... but it was definetly there 2 years ago. It was round, small, slightly raised and the concerning feature was it was very dark, much darker than my other moles. 

The derm seemed concerned and did a punch biospy, and now I am waiting. I am mentally prepared that this will come back as melanoma, and trying to learn as much as I can so that when the results come back I can have some idea of how to proceed. It is very scary time and I have never been under so much fear in my life. I hope it's ok to come here for support even though I haven't been diagnosed yet.

I may be grasping at hope, but what are the chances that a mole that is so small in diameter (2mm) could be very deep? If it has been changing color but not size or shape, could it be early stages? I read a few medical articles that say that small diameter moles are rarely invasive. I am a Mom of 2 young kids and I terrified that this small mole could be invasive. For the last 3 months I have noticed my lymph nodes under my collar bone to be tender, not hard or big, but just tender to touch. I am worried it has already mastized. 

Thanks for any help.

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Sapporo73's picture
Replies 9
Last reply 9/26/2017 - 8:39pm

Recently diagnosed with Stage 4 melanoma in lung and abdomen among other sites.  Choice ahead is to begin standard treatment (Nivo) or participate in clinical trial combining modified IL-2 with Nivo.  Leaning towards the latter choice as I am only 44 and in otherwise good health and want the most aggressive treatment possible out of the gate.  What would you do?

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Anonymous's picture
Anonymous
Replies 0

Hi,

I was just wondering if NM always presents with the dome shape or blister? Is it always fast growing? Can it be very small in diameter <3mm and still be quite deep?

Thank you so much

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To my count, I've had 4 biopsies done where the mole was graded atypical but the biopsy didn't remove it all, or at least the pathology didn't indicate either way. Everything that's at least mild-to-moderate or above has been fully removed in some fashion. One of my milds grew back quickly after its biopsy 6 months ago, one of them never grew back in the year since its biopsy, and the other two are brand new biopsies and too soon to tell if they will grow back.

I didn't think anything of leaving the milds behind. My derm said it's standard practice and we can "watch them." For what, I don't know, because he's not at all concerened about the one that's shown regrowth. Then I saw a theory that a biopsy causes trauma to the mole and changes the nature of the cells which can turn them into cancer. I feel like I can't win! Leave the ugly moles unbiospied-- worry that they are cancer. Biopsy them-- turn them into cancer.

Does anyone know if this is true? That trauma can advance a mole toward cancer? And would it even be possible to have the mole I biopsied a year ago fully removed now? I'm at high risk for melanoma, so trying to be cautious and do my best to live to see old age with my husband. Thank you for any help!

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Chasbray's picture
Replies 5
Last reply 9/26/2017 - 1:44pm

A I'm just learning about this fatal cancer that doctors miss a lot apparently. Why? Because it doesn't look like the typical melanoma!!!! Oh my gosh!! And how I found out about it was tryin to research a spot that popped up 7 months ago and has drastically changed literally in two days! I made an appointment today and I'm sick and terrified. Does anyone know much about this type of cancer?

Chasity bray

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CHD's picture
Replies 6
Last reply 9/26/2017 - 11:51am
Replies by: CHD, Anonymous, cancersnewnormal, jennunicorn

Since it is 2-1/2 weeks before my next appt with my onc, so I am wondering.... So last night, in the process of trying to reassure my son that the swollen lymph nodes in his neck are NOT cancer, and reminded him that his doctor told us Friday that the more worrisome ones are supraclavicular and he doesn't have any of those, at which point I was demonstrating where the clavicles actually are...  I happened to feel a fairly large swollen node below and sort of attached to my left clavicle!  Sheesh.  Anyway, I love this board and thought I would take advantage of the combined wisdom of all of you and ask if a melanoma can or does actually metastasize to a distant node?  My original melanoma was vulvar, stage 1-2, 4 years ago.  Vulvar is quite some distance from clavicular, so I would think a metastasis would tend to be closer.  But who knows.  My last PET-CT was last summer and normal.  Anyway, just wondering if it is even possible.  If any of you have any experience or insight with this, would appreciate.

Cheri

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MovingOn's picture
Replies 2
Last reply 9/26/2017 - 1:47am
Replies by: Bubbles, MovingOn

Hi All,

I’m considering a clinical trial (Pembro+T-Vec or Pembro+placebo). Is there a way to

find out what follow up is provided by the trial (e.g. scans) and if I can still use my insurance for additional scans if I feel that I need more. Also, if a better treatment option presents itself in the future, how long is the commitment to the first trial?

i believe that clinical trials provide very good follow up, so please interpret my questions in that regard. Also, I am a person of my word so I don’t want to break my commitment if a justifiably better treatment comes along.

(Note: I looked at the clinical trial summary but it didn’t cover the follow up aspects only the medications.

thank you

Danny

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (nodes in back of ear and parotid)

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/25/2017 - 5:50pm
Replies by: Anonymous, cancersnewnormal, Jamie1960

Pathology reports a darkening spot in the scar from a primary to be early formation lentigo.  Also large tumor in epitrochlear lymph node found to be metastatic melanoma which is extracapular. Any advice appreciated.

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Bubbles's picture
Replies 25
Last reply 9/25/2017 - 1:04pm

I put this together if you are interested, Joshie.  Not alone....but with a lot of help from YOUR friends!!!  Just so you'd have things in one place if you wanted to refer.  MPIP won't allow a lot of links...so I put them in this blog post. 

Perhaps this might be useful for others if needed....when you've been through a lot of therapies...but still need something.....

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/trials-for-joshie-and-paulster-and.html

Don't know if it is of much help....but that's what we came up with.  Hope you are back at home with your dear ones.  Much love and hugs.  Celeste

 

 

 

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I am a melanoma survivor,  5 years out!    For the last few months I have had abdominal and pelvic pains/discomfort and am finding it hard to sleep at night and only able to lie on my left side very briefly.    It's all on the left side from beneath my rib cage and lower and around into my back.    I had two ultrasounds; a couple of months apart and nothing showed up, then my doctor followed up with a CT scan, which first necessitated a blood test for Creatinine levels.   The results showed a flagged eGFR rate at 57; Glomerular filtration rate.    I should hear from the CT results in the next few days.   Has anyone had any kidney issues arise post treatment for melanoma; interferon.  Am I just getting over concerned with no reason or is there any connection between my results thus far and a possible recurrence?

I am just wanting to be prepared should this be round 2 with melanoma.

Thank you for sharing, it does help.   

Cee 

Stage 3

 

Cathy

Stage 3a

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oconnorr's picture
Replies 4
Last reply 9/24/2017 - 7:57pm
Replies by: Bubbles, Cindyco, oconnorr

My dad was diagnosed with stage IV mucosal melanoma in April 2017. He had been receiving opvido immunotherapy weekly for 18 weeks, and this week he had an MRI. 

There tumor in the maxillary sinus has shrunk, but the tumor in the frontal sinus remains stable, and they still don't feel it is resectable.  

His oncologist is suggesting follow up with a radiation oncologist to explore that option, but cautioned that targeted radiation therapy is not always effective with mucosal melanoma. 

I thought targeted radiation therapy is usually used after surgery, and if he starts it now, future surgery will not be an option.  And I know it will make him ineligible for some clinical trials. 

Does anyone have any thoughts? Advise? I'm confused and don't want him to start something that is t promising. 

Rachelle M O'Connor

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Cindyco's picture
Replies 9
Last reply 9/24/2017 - 6:04pm
Replies by: Jess58, kim1224, Cathy M, Bubbles, Anonymous, Cindyco, debwray, BrianP

Sharing an update here in the forum in case it helps someone else.

After being told no more immunotherapy for my mom due to dose limiting toxicities, we were pretty disheartened since all the advances right now are in immunotherapy.  We were offered Abraxane, which only seems to buy time (and Dr. Ribas confirmed that the hope is to slow down tumor progression).  Celeste sent me a lot of trials to look into, and I also emailed Dr. Weber at NYU who she has said will recommend trials that aren't his own (he did! he responded very quickly as well).

In short, this is where we are at right now:

1.  Leaning towards getting the Abraxane as scheduled with hope that there is synergistic effect with the one dose of Keytruda. I know there are Abraxane/Avastin trials at the Rochester Mayo Clinic, but we asked Dr. Ribas about the combo and while he thinks that the role of Avastin is currently unclear, he is open to giving it to us, with the only caveat being that insurance might not approve.

2.  Getting the tumor tested by Foundation One for mutations for targeted therapy.  Dr. Ribas says that there aren't many actionable mutations in mucosal melanomas, but it is worth a shot.  We are also looking into NCI-MATCH, I-PREDICT (supposedly a more flexible version of NCI-MATCH, and the rare tumor clinic at UCSD. Waiting to schedule the appointment with UCSD, which does all three of these.

3.  Seeing Dr. Hamid tomorrow.  He called me today and said that there may be trial options at the Angeles Clinic, so we are going to see what they are.  I have a feeling that it is the Glembatumab + Varililumab combo that Paul is offered, since my mom is excluded by other trials by her severe hepatitis.  Coincidentally, Dr. Weber told me about a varililumab + vaccine trial by Celldex in his email. 

4.  Depending on what my mom's tumor testing reveals, we may look into MEK inhibitors, which Celeste suggested.

5.  Looking into two trials with Palbociclib that Celeste sent to me.  However, these are in PA and Boston, so we have to take the traveling into consideration.

6.  Looking into OX-40 trials that my mom might not be excluded by, as suggested by Dr. Weber. Will do this tonight.

7.  Looking into a Hu5F9-G4 Phase 1 trial at Stanford that Celeste had suggested for Josh.

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BrianP's picture
Replies 13
Last reply 9/24/2017 - 12:45pm

I'm at MDAnderson right now.  Flew in yesterday morning for scans and met with Dr. Tawbi this morning.  As far as MDAnderson and getting to and from the airport I had no problems.  To be honest I couldn't tell anything had happened here from my transit from the airport.  I guess there's still a lot of problems on the west side of the city.  Everything seems pretty smooth at MDAnderson except for the Infusion Therapy department.  I waited 2.5 hours to get a port accessed and a lady next to me waited 4 hours.  Not sure if that was Harvey related or not.  The port access service is always bad but not that bad.

Scans went well.  Still stable with one tumor slightly smaller.  I'm 9 months out from my CAR-T therapy and 6 months from my last Ipi infusion and seem to still be responding.  Dr. Tawbi is extremely pleased.  Says he will be even more optimistic at the one year mark if things are good and extremely optimistic at the 2 year mark which really made me feel smart because that's exactly what I told my wife before he walked into the room.

I wanted to share this trial with the board.

https://clinicaltrials.gov/ct2/show/NCT03131908?term=%22melanoma%22+%22M...

Dr. Tawbi and his colleagues seem to be very optimistic about this trial at MDAnderson.  If someone has progressed on PD-1 this would be one I would consider.

Brian

 

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YVAN's picture
Replies 2
Last reply 9/24/2017 - 7:07am
Replies by: Staywell, YVAN

My PATHO report mentions a stage1A melanoma 0,3mm after the punch biopsy (all the rest is good: no ulceration, no regression, mitotic rate=0, noxyz, etc....  But it mentions also atypical melanocytes at the margins.... I thus go for a wide excision...But my questions are:

(1) Are atypical melanocytes at the margins = melanoma...Are these already tumor or only susceptible to become melanoma tumor (??)... My doctor's answer is not clear.....

(2) I bleeded a lot after puch biopsy...if atypical myelanocytes at the margins were indeed already cancer, could they have spread in the blood (??)

YVAN, an anxious patient...

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