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.

Clinical Trials

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?

Does melanoma metastasize first to lymph nodes distant from original site?

Since it is 2-1/2 weeks before my next appt with my onc, so I am wondering....

Round 2? or too far ahead of myself?

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.

Abraxane next

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.

Patho Report

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

Path report

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.

Pets scan and low thyroid after scan

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. 

Clinical Trial vs. Standard Treatment Stage 4

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?

Update For My Peeps

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!

going off Opdivo???

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.

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