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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Anonymous's picture
Replies 1
Last reply 7/9/2014 - 12:50pm
Replies by: ltalley

Hello All,

Ive noticed since I got my tatoo on my stomach, a mole that they tattood over at the time has been getting slightly larger... Though Ive put on a few lbs, and the skin has stretched a tiny biy anyway, it worries me because a little line of the tattoo has disappeared and the mole seems to have gotten bigger (across AND upward) ....Ive read on tattoo forums that it's not good to tattoo right over a mole, but he did anyway, I have a smaller freckle/mole growing next to it too but that one has not gotten bigger. Ive had melanoma before (thin-completely excised)

Anyone else have issues with moles inside of tattoos? What doe sit look like? Has it come back positive?

I need to see the dermatologist anyway, but can't get in until october...

 

Help?!

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Are they getting closer to learning who Interferon will help the most?  -   ------

Phase II randomized study of high-dose interferon alfa-2b (HDI) versus chemotherapy as adjuvant therapy in patients with resected mucosal melanoma.        -------------------

http://meetinglibrary.asco.org/content/95739-114

I'm me, not a statistic. Praying to not be one for years yet.

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Wilbur's_Mom's picture
Replies 5
Last reply 7/9/2014 - 11:59pm

My father had a melanoma on his leg that was removed by wide excision in October 2013.  He was staged at IIa and was told he needed no further treatment because his sentinel nodes were clear.  In late April he noticed three new lesions near the surgical site.  They were all three melanoma and he was referred to a melanoma group in SF.  In June he had another wide excision around the three lesions and three MORE brand new lesions.  He had sentinel node mapping again and three nodes were identified - two superficial and one deep.  His melanoma surgeon chose to only remove the two superficial nodes.  One of the two came back positive with melanoma and he was re-staged to IIIc.

His oncologist told him the group was recommending radical lymph node dissection of the groin - taking all nodes superficial and deep.  When he consulted with the surgeon, the surgeon wanted only to remove the superficial nodes.  He now has to decide whether to to the radical or superficial with not much information.

One concern I have are that there's still a deep node that hasn't been examined with potential for cells.  The second concern is that the surgeon wants to rely on PET scans for evidence of metastasis.  My father has had several clear PET scans but has active disease in his leg and inguinal nodes so I'm not sure how reliable they are for catching movement early.

Following the surgery (either surgery) he will join the clinical trial for Yervoy vs. Interferon.  If anyone has advice or experience about opting for radical or partial lymph node dissection we welcome input.

Thanks,

Stephanie

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Outcome of isolated limb infusion (ILI) treatment for Chinese acral melanoma patients with/without gene mutations. -------------- http://meetinglibrary.asco.org/content/127757-144

I'm me, not a statistic. Praying to not be one for years yet.

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RJoeyB's picture
Replies 2
Last reply 7/10/2014 - 7:05am
Replies by: RJoeyB, Bubbles

Exciting to see some activity in this area...

LUNGevity Foundation, Lung Cancer Research Foundation, and Melanoma Research Alliance join forces in first-ever research collaboration
Research into PD-1 Inhibitors to Benefit Patients with Brain Metastases
 
 

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Credit goes to Rick who posted this article on MIF:   http://www.fiercebiotech.com/story/anti-pd-1-cancer-star-nivolumab-wins-worlds-first-regulatory-approval/2014-07-07

Some folks seem surprised by Japan acquiring the world's first regulatory approval for anti-Pd1....but the history of the drug tells the tale.  From a prior blog post.....

"Once upon a time (2005), in a land far, far away...(Japan), ONO Pharmaceutical generated ONO4538, an anti-PD1 monoclonal antibody, in research collaboration with Medarex (who called the product, MDX1106).  In 2009, the big, getting ever bigger, (? benevolent) King of the World, Bristol-Myers Squibb (BMS) acquired the rights to develop ONO4538/MDX1106/BMS936558  (now called Nivolumab) in North America.   In an additional agreement in 2011, BMS attained the rights to the product in the rest of the world...except Japan, Korea, and Taiwan...where ONO retained exclusive development rights and conducted Phase II studies with ONO4538 in non small cell lung cancer and melanoma and Phase III studies in renal cell carcinoma currently.  However, results of those studies are hard to find."

Hopefully FDA approval will not be far behind!  Thanks, Rick!  Celeste

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/10/2014 - 2:39pm
Replies by: Anonymous

MRI, CT scans say no hypophisitis. Endocrinologist said that my adrenal insufficiency is not due to hypophisitis.  At a recent routine eye examination opthomologist told me that I have convergence insufficiency or palsy in binocular eye movement.  This explains headaches when I read.  How about the fact that the third cranial nerve, the ocular motor nerve crosses right behind the pituitary. Hypophisitis, anyone?   Eye doc doesn't want to go there yet.  I'm to do pencil push ups for 6 weeks to see if exercise can resolve this.  If it isn't one adverse reaction to Yervoy, it's another.  I know that adverse reaction(s) can mean that the Yervoy has stimulated my immune system even though I had only two 3 mg infusions. I just hope my immune system has gone after any melanoma cells in addition to just about everything else.

.

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My 7 year old daughter was diagnosed with Melanoma about 2 months ago.  It was a T1b.  She had a wide excision and a SLNB with 4 nodes removed.  They all came back clean.  So now the protocol is just to go in for skin checks every six months.  No scans.

But I am worried there might be something inside her that we don't know about.  I know it is a good sign that the nodes were clear, but I keep reading here about people who had no signs until a metastisis was later found in a remote area.

Should I ask for an MRI to check lungs / brain? (I don't want CT for her -- too much radiation at that tender age).  It isn't called for given the size of the tumor and the clear SLNB, but I feel helpless wondering if there is something growing that we don't know about.   

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

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Anonymous's picture
Anonymous
Replies 0

How likely is it that melanoma would go to my groin lymph nodes?  My mole was on my mid back- the slnb was under my left arm.  The lymph node came back negative.   (So right now I am stage 1b).  I'm panicked that it will go to my groin lymph nodes.  Is that common? 

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Hoping someone could possibly shed light on this phenomenon. My dad has had 3 doses of Yervoy thus far and and the subcutaneous tumor on his back (growing right on the WLE scar), started regressing quite noticeably right after the second dose (turned purple and shrank considerably). 2 weeks ago he began suffering from watery diarrhea and was put on a course of steroids for 1 week. During the course of steroids, the tumor started growing and reddening again. Could this be an "ipi flare" or could the steroids possibly have counteracted the effects of the Yervoy?

He has a doc appt tomorrow for his 4th and final dose of Yervoy now that he is off of the steroids, but we are freaking out about the re-growth after such a promising start to this treatment.

Any input is greatly appreciated. Thank you in advance!

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BMS announced today that they'll be making their official application to the FDA for approval of their PD-1 checkpoint inhibitor nivolumab this fall.  Of lesser importance, they're going with the brand name Opdivo.  MarketWatch article here:

Bristol-Myers Squibb Announces Plans for Third Quarter Submission of a Biologics License Application for Opdivo®(nivolumab), an Investigational PD-1 Immune Checkpoint Inhibitor, for Previously Treated Advanced Melanoma

http://www.marketwatch.com/story/bristol-myers-squibb-announces-plans-fo...

Interesting because many expected that BMS would wait until early 2015 to submit.  They'll be seeking approval similar to the way Merck's approval will likely come through and the EAP's are being constructed, namely that it will require prior failure with ipilimumab (Yervoy), and for BRAF-positive patients, prior BRAF-targeted therapy.  First-line approval would then come later once the final Phase III trials are completed.

Joe

 

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Tim--MRF's picture
Replies 10
Last reply 7/11/2014 - 6:59pm
Replies by: arthurjedi007, RJoeyB, Bubbles, BrianP, Anonymous

BMS has launched an Expanded Access Protocol for the combination of ipi and nivo, their anti-CTLA4 and anti-PD1 drugs. Earlier this year both Merck and BMS opened EAP programs for the PD1 drugs alone.

The combination of ipi and nivo has some very strong results. In one study, 88% of patients with metastatic melanoma were alive after two years. Side effects are a concern, with about 2/3 of paitents having Grade 3 or Grade 4 toxicities. The doctors involved with the study felt that these issues were rather easily managed.

This was just announced this morning, so no sites are open yet. As we have seen, sometimes these sites do take a while to open.  For more information you can go to the EAP posting on clinicaltrials.gov.  

Some details:

--mucosal melanoma is included

--must not have had prior treatment with ipi

--brain mets are allowed, if MRI confirms no progression in 2 weeks

I hope to have more information soon, but in the interim here is the link to the posting:

http://clinicaltrials.gov/ct2/show/NCT02186249?term=nivolumab+melanoma&t...

 

Tim--MRF

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brittanyx's picture
Replies 28
Last reply 7/12/2014 - 6:33am

I have read SO many mixed views on Interferon. I'll be starting it soon for year, 5 times a week for the first month, and 2-3 times a week for the rest of the 11 months. Lately i've been reading that is only "prolongs" the cancer, not getting rid of it for good. Has anyone done it and have been clear? Also I don't understand how it is supposed to help. One person described it as your immune system fighting it. If that's the case why are there all these bad side effects that make you sick? I'm 19 and I don't want to be sick for a year and  have it come back and I did it for nothing. I know no matter what there's always that chance, but like I said lately i've been reading that it only prolongs it. I'd love to hear everyone's personal experiences. 

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Replies by: Jydnew

I am sure they exist, but I have never heard about anybody who did the "watch and observe" after a positive node detection and be cured at that point. Seems it always comes back and they have to have the CLND anyway.

Please let me know if you or someone you know of has been so fortunate.

 

Thanks

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