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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jc2dad's picture
Replies 1
Last reply 9/26/2017 - 1:37am
Replies by: Bubbles

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 0

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

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 (node by ear)

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CHD's picture
Replies 5
Last reply 9/25/2017 - 2:05pm
Replies by: 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 2
Last reply 9/25/2017 - 2:06pm
Replies by: Jess58, 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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Anonymous's picture
Anonymous
Replies 2
Last reply 9/24/2017 - 3:37am
Replies by: Anonymous

Melanoma diagnostic 1a, 0,3mm with Atypical melanocytes intraepidermal present at the margins.

My question: Are these atypical cells already cancer (melanoma) or just susceptible to become cancer if not removed?

Thx

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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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Scooby123's picture
Replies 1
Last reply 9/25/2017 - 8:42pm

Hi all hope you all well has can be. Some think been on my mind and you guys might be able to solve it.

 

when I had my pet scan end of June my 3 month bloods was due at my GP at the end of July. On that test my thyroid was lower which my GP said we will keep watching it in 3 months time on next bloods. Unfortunately I had 2 nodes in chest positive so started keydruda. On bloods test my thyroid had reduce to 0.4 which was discussed in clinic on visit. They asked me how I was feeling as this was low and would start treatment if had symtoms. 

I replied this is what I am dealing with at present. The Mel, going through menapause, sinus issues and now low thyroid. I suppose lots of side effects I am feeling could relate to most of my issues. They have decided to wait 3 weeks for next bloods. 

 

What point if you had a thyroid issue went on treatment and can pets an interfere with thyroid results.

 

Scooby❤️

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Sapporo73's picture
Replies 7
Last reply 9/26/2017 - 10:33am

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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jennunicorn's picture
Replies 24
Last reply 9/25/2017 - 10:22pm

Thank you to everyone who helped me out on my last post. I just got a call from my onc. The tumor board reviewed my case and agree that surgery is a good option right now to get rid of this last stable stubborn armpit tumor. I will schedule a surgery consult next week and continue on with Nivo infusions for a while longer. But, now, I feel like I see a light at the end of this long tunnel and it is so nice!

I did ask her thoughts on adjuvant radiation, but she said while it may help keep that one area from recurring, it will also destroy all my good lymph nodes in there, and I'm a big fan of keeping as many lymph nodes as I can... as I sit here with double ear infections and a chest cold... I need all the fighting power in my body I can keep. And, if the mel wants to show up elsewhere down the line, radiation to one small area isn't going to do much anyway. So, surgery, little bit more Nivo, and hopefully I can have a more "normal" life for a while... whatever normal is anymore :)

Wishing everyone a good weekend and sending big hugs to anyone that needs one!

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

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KAF's picture
Replies 10
Last reply 9/25/2017 - 11:55am

HI all,

I have been one of the lucky ones who, after being diagnosed stage 4 in May of 2016, has had a full response to the drugs (3 x opdivo/yervoy, opdivo every 2 weeks since end of Oct 2016).  I have had the rashes, blown up pituitary 2x, vitiligo, swollen joints, etc... but I'll take it all for the amazing response I've had to the drugs.

At my opdivo appointment today my doc informed me that she had gone to a conference 2 weeks ago and new data shows that being on Opdivo for one year after full response is sufficient but some docs still feel that 2 years is optimal.  She is not making any rash decisions but we were going to discuss again in a couple of weeks.  Does anyone have any knowledge about this or can share what they chose to do?

 

thanks

karen

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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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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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Anonymous's picture
Anonymous
Replies 3
Last reply 9/22/2017 - 10:35pm
Replies by: Toby0987, laulamb, Janner

I'm post stage IIa melanoma about 16 months and I just tonight discovered a pea-sized lump in my neck near my throid.  I've been on synthroid for low thyroid for over 20 years.  Does anyone have any information about increased risk of thyroid cancer after melanoma?  I plan to contact my oncologist tomorrow, but am wondering if there is some kind of connection.  Thanks!

 

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