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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MovingOn's picture
Replies 1
Last reply 9/28/2017 - 11:27am
Replies by: MovingOn

Has anyone with hypophysitis from Ipi/Yervoy had their prolactin levels checked afterward?

My prolactin levels are normal from a test done today (8 was my result and the range is 1-17). I don’t believe that I am supplementing them in any way (does another gland besides the pituitary produce some prolactin?) so it may mean that my pituitary is doing something instead of nothing after hypophisitis.

I’m not getting my hopes up but I would really like it if my pituitary starts producing cortisol again someday. The ups and down of the short half-life of cortisol replacement medications have me wishing for a slow release solution (for example, thyroxine is good. It doesn’t have highs and lows but instead is released over time). By the way, my cortisol came back as too low to measure for the second time today even though I’m taking 20mg of cortisone. Going to get that worked out before starting Pembro on Monday.

Wishing you all the best.

Danny

Jan‘17 Mel. 3B unknown primary. Neck dissection Feb’17 (tongue atrophy from surgery). Ipi Mar‘17-May’17(Hypophysitis), recurrence Sep’17(nodes behind ear&parotid). Pembro Oct‘17-

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/27/2017 - 7:24pm
Replies by: Anonymous, Julie in SoCal

Any thoughts or experiences with nivo plus radiation?

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barry_g's picture
Replies 3
Last reply 9/28/2017 - 1:06pm
Replies by: Nashvillian, barry_g, Anonymous

I'm newly diagnosed with melanoma in situ on my face and want to be able to make informed treatment decisions. My dermatologist wanted me to make an appointment for excision by him. In his description of the procedure, there was no indication that pathology at the margins would be checked microscopically during the surgical procedure. He also mentioned there could be a significant scar. I would appreciate information on two questions:

1. Don't some surgeons perform a stepped excision procedure and go slowly and check microscopically as they go along so it's a minimal but thorough excision? Perhaps I need to find such a surgeon in my area?

2. Do some patients opt to have a combined excision + plastic surgery procedure to take care of much of the scarring in advance?

Thanks very much.

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lshepard27's picture
Replies 1
Last reply 9/27/2017 - 8:15am
Replies by: Bubbles

My partner, David, was diagnosed w/ Stage 4 in February. Lesions in the brain, lung and liver.  Surgery took out 3 lesions in brain. Started clinical trial of Yervoy and Opdivo/Nivo.  Could only handle one round of double. Since May has been getting Opdivo infusion every other week.  3 remaining tumors in brain are too small to measure, everything else has shrunk consistently. 

But now, he has cancker sores in his mouth that seem directly related to the infusion. The farther from the infusion, the better it gets. But it's severely impacting his eating.  He's lost 7 pounds in last 6 weeks.  Dr. Atkins @ Georgetown, who we love, says he hasn't seen canker sores as a side effect. 

Anyone know anything about this side effect?  Or what to do? Thanks, Lisa

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CancerSpouse's picture
Replies 14
Last reply 9/29/2017 - 10:51am

Hello Everyone,

I'd appreciate recommendations and other ideas regarding oncologists specializing in melanoma in the Los Angeles or North Orange County area. My husband had a melanoma lesion removed from his torso in 1989. The margins were clear and no further treatment was needed. He's seen a dermatologist regularly with no recurrance of melanoma skin lesions, including now, although he's had a couple of other skin cancers.

Flash forward nearly 30 years, a growth thought to be a lipoma on the back of his head came back positive for melanoma last week. It was fully encapsulated. Two more growths, a walnut-sized one on his deltoid and, most troubling, a three-centimeter growth engaging his left adrenal gland, were revealed in full body scans. Nothing in his brain or other vital orgins.

Although he will lose an adrenal gland, the surgeries to remove the remaining masses should be rudimentary. But I would appreciate advice on an oncologist in the aforementioned region because John will need treatment for systemic melanoma. Would also appreciate any other ideas/thoughts/miracles. Thanks in advance! 

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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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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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jc2dad's picture
Replies 3
Last reply 9/28/2017 - 8:43am
Replies by: Bubbles, jc2dad

Got my genetic testing complete results back today.  I have no NRAS, CKIT, or BRAF mutations but do have mutations in BIRC2, BIRC3, MDM2, and PIK3CA.  I did a little research on these genes and mutations but really can't decipher what it all means as it relates to treatment.  I have found that having the PIK3CA in subcutaneous melanoma, for a white male without NRAS or BRAF mutation is extremely, extremely rare.  Does anyone have any insight?  Thanks in advance.

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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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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

Jan‘17 Mel. 3B unknown primary. Neck dissection Feb’17 (tongue atrophy from surgery). Ipi Mar‘17-May’17(Hypophysitis), recurrence Sep’17(nodes behind ear&parotid). Pembro Oct‘17-

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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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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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Jess58's picture
Replies 4
Last reply 9/27/2017 - 6:57pm
Replies by: Jess58, jrtufo, Cindyco

Hi,

Looking for help.

My wife is Stage IV, in lymph nodes and bones. Found out April 2017. Total surprise.

She has concurrent follicular lymphoma which has disqualified her from every trial up to now.

Progressed after 4 rounds of ippi and divo.

Had one dose of keytruda and doctor stopped due to new Mets.

Now getting radiation for pain.

After radiation Dr will start her on Abraxane.

She has no mutations.

Hopefully she'll qualify for trial so no one will take her even though follicular lymphoma is indolent.

Hope abraxane works post one round with keytruda.

Was in contact with Dr Davies at MD Anderson whom successfully tested patient with Abraxane and keytruda after profession on ipi and divide, but our insurer won't cover that combo. I got them to cover Abraxane but it was like pulling teeth.

All advice is most welcome.

So far we have not caught one break.

God bless

Jess58

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