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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FayFighter's picture
Replies 5
Last reply 2/22/2015 - 9:07am
Replies by: FayFighter, JoshF

Hi Warriors

Last time I posted it was good news; 30% reduction in liver lesions.  However, it seems the inhibitors are petering out now.  Next best step?  We love team at MSKCC but you guys always get me thinking.  All advice and suggestions welcomed.

 

Recap;

Husband is 45 y.o. Irish, blue eyes...raised on the jersey shore (lots of sun exposure).

July 2010 Melanocytic Nevi removed from left calf. 

F/U with Derm exams x1/6 mos

June 2013 Nodules appear under skin on left calf. We thought they were vericose veins.

July 2013 Swollen left lymph node in groin area. Biopsy.  Melanoma. BRAF WT.

Slide from 2010 reread by MSKCC as melanoma in situ

August 2013 Lymphadenectomy of left groin.  Just uppers Cloquet node negative.  5/19 nodes positive.

October 2013 Start Yervoy

November 2013 Radiation to Lymph node basin of groin

January 2014 Prednisone needed to control colitis from yervoy. Genomic Studies show NRAS positive.

March 2014 End Prednisone

April 2014  PET/CT Scan shows 3.5 cm lesion in fundus of stomach. Confirmed through biopsy.

May 2014 start PD1/KIR trial

July 2014  too much bleeding from stomach tumor.  Surgery to remove. 

July 2014 Scan shows mets to liver.  numerous.

August 2014 Start MEK/CDK4

October 2014 30% Reduction in liver lesions

November 2014 20% more reduction

December 2014 Stable Lesions.  Heart EF low...need to lower doses

Today Scans...new Liver lesions.  Subcutaneous lesion on back.  Maybe on ribs.

 

Options: checking HLA-A2, if positive candidate for IMCgp100 (Monoclonal T Cell Receptor anti-CD3 scFv Fusion Protein) IMMUNOCORE trial at MSKCC.

Options: Speaking with NIH nurse tomorrow about IL2 trial eligibility.

 

We did a big tumor genetic profile test of in September at MSKCC.  Still waiting for results.

 

What would you do?????

 

Thanks in advance,

 

Angela (wife of Mike)

 

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troy's picture
Replies 3
Last reply 2/21/2015 - 9:51pm

Hi I am new to this my wife has stage 4 metastic melanoma and has been fighting it for 2 years.We live in Australia and recently she was on a EAP for Merck 3475.After 6 treatments her ct scan was not good and so they took her off.What we want to know as it is a EAP is that normal? Over here they are still debating weather or not it should be approved by our FDA which is known as PBS.

She had Yervoy prior but only 4 doses and that showed some tumor regression but also more showed up so they went for  the 3475.

I feel that because it is a EAP they want to see improvement straight away.

Any comments welcome I just dont want her to die without trying every possible thing we can.

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Just thought I would share antibody drug conjugate trial NCT02302339 - Glembatumumab Vedotin is recruiting in several places.

However unless I'm mistaken it seems to be the same med presented at ASCO 2010 with this report:

http://ir.celldex.com/releasedetail.cfm?ReleaseID=715940

That trial had an overall response rate of 15% and median progression free survival of 3.9 months.

So I'm not sure what they are thinking. Maybe something for those who even pd1 failed them. I dunno.

Artie

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/21/2015 - 3:37pm
Replies by: _Paul_, Teochasse

If you have a local recurrence and NED everywhere else and you are in good health would you just keep on trucking on or would you try to get into a clinical trial?

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susan-scalp MM 2014's picture
Replies 18
Last reply 2/21/2015 - 9:26am

Hi to all tonight and prayers for those in the fight and their caregivers, family and friends!

Went to my 6 month check with Melanoma Oncologist Surgeon today. I am Stage 1B scalp Melanoma and was expecting a routine check. My upper abdomen began swelling a few weeks ago and no pain only discomfort from it pushing up on lungs, some short of breath. My Dr looks at my belly and says "What the hell?!!!"  I love him and if it weren't serious I would have laughed out loud. He is concerned that the Melanoma could have spread through the blood system and is ordered a CT scan to find out what is going on. Has anyone had this kind of spread or symptoms? I am oddly at peace with this, just feel like I went through a tornado and now have landed on the warm sand of the beach with all sun protection on of course!

Susan

It is well with my soul!

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killmel's picture
Replies 37
Last reply 2/21/2015 - 6:46am

Hi Everyone.

.

Many MPIPERS have taken IPI over the years with various clinical trials. Now, the FDA has approved this drug, more people will have access to IPI.

I thought it would be nice if we posted our experience with IPI and results on the drug. Some of us are just starting taking this drug like Jill & Eric,

while others are in the middle of treatment, like Valin. Most importantly, are those who courageously finished treatment and have seen results like

Donna fromVermont. If you got mixed results on IPI or no results, it is important to share your experience so other  can anticipate possible realistic

outcomes on IPI.

 

Please share your experience with IPI to give hope & encouragement for those who will be embarking on IPI treatment.

Thank you for feedback.

Douglas

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Sharon in Reno's picture
Replies 17
Last reply 2/21/2015 - 6:36am

Hello Friends,

Im serioulsy considering Ipi over BARF and was looking for Ipi success stories and or anyt thoughts or comments on Ipi. Thanks, love, Sharon in Reno, Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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http://emedicine.medscape.com/article/1372666-overview#aw2aab6b2

This is a fairly long, interesting, detailed article reviewing all the recent developments in targeted cancer treatment with some comments on future directions.  Our malig mel is in the Big Tent with all its cancer sibs where research findings in one type of cancer apply to other types also. The author discusses the mutation processes that occur in a cell becoming cancerous, how the cancer cell creates its survival environment, cell vulnerabilities, the 10 hallmarks of cancer and much more.  It's technical but well within layman speak, I think.  Hope you find this helpful.  A.L.

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Your journey matters.

Journey DX, a patient research company, is working with patient advocacy group Canadian Skin Patient Alliance to better understand the patient journey for melanoma, as well as the impact of this disease.

We are conducting telephone focus groups for Canadians with advanced melanoma, and their caregivers. The focus groups will last approximately one hour, and will be conducted over the telephone to be comfortable and convenient for patients and caregivers who would like to share their experiences.

A compensation of $50 will be provided to those who participate, in appreciation of their time.

If you would like to be involved or would simply like more information, please contact Dr. Jennifer Pereira, Research Director of Journey DX (jennifer.pereira@journeydx.com, 416-485-7387).

Thank you for your consideration.

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/20/2015 - 2:56pm

I'm trying to find a good derm in NYC  - looking for recommendations.  I referred my friend to one on the East Side but she doesn't take Aetna insurance anymore.  Any suggestions would be appreciated.  This will be for annual skin checks from someone that is at risk but currently not a melanoma patient - but a faimly history.

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clthomas2131's picture
Replies 6
Last reply 2/20/2015 - 12:31pm

 

Does anyone have any experience on or about the trials for:

 

Avastin and/or Yervoy 

 

Interferon and/or Yervoy?

 

Those were 2 of my options with the 3rd being just yervoy.

 

Just trying to get as much feedback as possible.

 

Thanks!

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odonoghue80's picture
Replies 8
Last reply 2/20/2015 - 10:58am

Hi all, just looking for some insight. I've had stage 4 melanoma for a few years now but over the last 6 months I've had an extremely large tumor in my groin that will not shrink. The tumor is protruding from my right groin/pubic area and it's about the size of a grapefruit. To say the least, I need to figure out how to rid this tumor. From September -December I had 4 rounds chemotherapy (taxol/carbo) that really helped and shrunk or killed many of my other tumors. I also had direct radiation for 10 days to the tumor. However this particular tumor is stubborn and possibly encapsulated itself. Seems that any of the treatments can't penetrate this area. Recently I switched from chemo to Anti-PD1 Keytruda and have had two rounds (3rd this Tuesday) but no response yet.

I've checked with a few surgeons, radiation onc, and a few oncologists so far, and nobody has an idea. Surgery is not an option because of location. Has anybody seen or heard of anyone having any tumors this large? Or are other alternatives to reduce tumors? 

After feeling during some real rough stretches and being on multiple treatments, a brain surgery, clinical trial, chemo, radiation, and now Keytruda, I'm finally feeling a bit better, but this tumor is preventing me from getting back to close to normal. If anybody has any ideas please share.

Thanks,

Shane 

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AshleyS's picture
Replies 5
Last reply 2/20/2015 - 10:01am

After feeling like I was being led down the wrong path for the past 2 months, I finally feel like I'm heading in the right direction. We met with my new care team at MD Anderson yesterday. I will either go on a trial for ipi + IL2 or ipi + PD1.  I'm hoping for the latter. 

Being on a trial with MDA will require me to pack up my 2 year old, 2 month old, and husband for a move from ND to TX, but I know it'll be worth it. 

Thanks to everyone on the board for all the advice, especially for urging me to seek out a specialist. 

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My husband is a stage 4 melanoma patient at UCSF who has been on PD-1 for the last 7 months. He has three main tumors in his liver that are being treated and with a combo of PD-1 and a couple of chemo embolization surgeries his scans have stayed mostly 'status quo' since he was diagnosed. No spread outside the liver and no major growth in the liver.

 

We just got back from the National Cancer Intitute (NCI) and was accepted into a t-cell therapy clinical trial. It's excellent news and we're in the process doing our research and getting opinions from his melanoma specialist and interventional radiologist at UCSF just to ensure it's the right decision for right now. It seems like a slam dunk but as you all know it's a huge lifestyle shift to move across the country for such an intensive treatment.

 

Has anyone on the forum gone through it and had a good or bad experience within the last year or two? I found threads from 2012/2013 but treatments change so quickly.

Amanda

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Jacqueh27's picture
Replies 2
Last reply 2/19/2015 - 9:29pm

Jess has been doing so well since we found out that the tumor was shrinking, however it's still big 11cm. She gets a PET next Thursday to see how much of that is actual cancer. She's been having pain again though and I'm worried. Same tumor pain as before. :( could this mean it's growing again or normal after Yervoy?

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