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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Eileensulliv's picture
Replies 3
Last reply 2/23/2015 - 6:52pm
Replies by: AshleyS, Bubbles, BrianP

Happy Sunday! A few weeks ago I posted asking if anyone could share their experiences on ipi and nivo, amd I am very grateful for the responses! I decided to go forward with the trial to treat my mets in my bowel and lung, and I also had a wider excision of the recurrence in my back on Feb. 5th. The path report stated there were all clear margins of that tumor. The incision is healing nicely, and despite of the fact that I still cannot wear a bra, I am going back to work on Monday (this should be interesting!) 

This Thursday I am going for my first infusion of Yervoy and Nivolumab at Johns Hopkins. Although I am a bit nervous (I've never had any treatment of any sort) I am also very excited to get this started!! I am so hopeful that this will help!! And I am also excited because my dad arrives here the night before my treatment and will be staying for a week!

There is some talk of putting in a port, just because I have lymphadema in both of my arms, but they said we would revisit the topic after my first treatment. 

On a side note, we got about 10 inches of snow yesterday. Although it's beautiful, I'm ready for spring and some cherry blossoms... And a plow truck on our street would be nice, also! C'mon, Spring!!!

Eileen 

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5dives's picture
Replies 12
Last reply 2/23/2015 - 4:32pm

Hello all, 

I am currently T1bN1a (stage 3b) and feeling really well. My SNLB / WLE was July 10th. I see my dermatologist every three months and the oncologist every three months, so I'm under somebody's watchful eye every six weeks. I feel like my anxiety is under control, and I'm finally able to focus on diet, exercise, and being proactive about my health.  I am in a good place and in good hands, but like many melanoma patients, I wonder if I could be doing more. 

I did not have the lymph node dissection or interferon after my one node came back slightly positive. I am treated at Loyola in Chicago and I have been seen by Dr. Postow at Memorial Sloan Kettering. 

My question is this: If / when a clinical trial becomes available for which a patient might qualify, does their doctor point that out to them, or do patients have to keep their eyes out for trials? I am the kind of person who would like to help move the science forward, especially if I can be useful in some way...but I do understand that trials involve exposing oneself to risk.  Am I supposed to be agressive, or wait until I "need" a trial? 

I see that there is a vaccine trial (NCT02129075) at MSK that I might qualify for. Since I'm a patient at MSK, would you expect a doctor to contact me? How is this handled? 

If you are of a mind to tell me to sit tight and don't worry about clinical trials until one is necessary, I welcome that kind of feedback. I just know that I've learned quite a bit from this site, and I know NOTHING about trials. 

Thanks in advance. Best,

Elaine

http://melanomadame.blogspot.com/

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dmk252003's picture
Replies 11
Last reply 2/22/2015 - 11:11pm

Hello

My mom was diagnosed with Stage IV melanoma. She has tumors in her lungs, spine, adrenal gland, clavicle. Her oncologist is recommending Yervoy. I would like to get feedback from people who have gone through similiar situation. I appreciate it. Thanks, Donna

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ashlee12's picture
Replies 5
Last reply 2/22/2015 - 10:04pm
Replies by: Janner, ashlee12

So I've had my report for awhile I just now am looking at it again... I need some help with what this means..... It says 

 

 

severely atypical lentiginous junctional melanocytic proliferation , favor Early evolving melanoma in situ (narrowly excised)

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Julie in SoCal's picture
Replies 5
Last reply 2/22/2015 - 3:12pm
Replies by: Anonymous, BrianP, Marianne quinn, Mat

Hi there friends!

Well it seems that I am not a complete responder.  A couple of weeks ago  in late Jan. I found a rice grain size piece of funk near-ish my WLE.  I was pretty sure it was another in-transit met.  I hoped I was wrong and that it was just scar tissue or junk or whatever.  But that grain of rice sized funk is now pea sized funk.  So I'll go see Rock Star Doc next week.

I hate this disease!  I had so hoped that IPI had kicked mel to the curb.  Alas it isn't completely so.

Meanwhile, friends and I have created our own 4 day weekend this week and we're going camping.  Imagine sleeping on the beach along the rugged California coast!  I can't wait.  I'm bringing my best friends (a few of them anyway) and a small pile of books.  And I'm planning on laughing, reading, hiking along the beach, and of course having long staring contests with the waves.  I'm grateful for the time and I don't know what I would do without my friends.

I'll keep you all updated after I hear from the Rock Star.  Thanks for standing with me!

Shalom,

Julie

Stage 3c: WLE, SNB, HD-INF, GM-CSF, IPI, ??

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, INF, Keytruda?

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Mat's picture
Replies 7
Last reply 2/22/2015 - 2:43pm

I had my first infusion of Keytruda / pembro yesterday.  I didn't see much on the forum on infusion-related side effects, so I thought I would post my experience.  The infusion itself was fine--30 minutes from the time the bag starts flowing (versus 90 minutes for ipi).  Shortly after the infusion, I began to feel tired.  (I would get this same effect from ipi.)  I napped for about an hour and then awoke with nausea, stomach churning and chills.  Shortly thereafter, I had a bout of diarrhea that had me concerned enough to contact my onc's office. (I had colitis while on ipi.)  I took one Lomotil and my stomach settled down within a few hours (~8 hours after the infusion).  This morning I'm feeling fine.  I have some residual tiredness, but it seems that my GI issues have settled down (hopefully not jinxing myself).  Apparently infusion-related side effects are more common with Keytruda than ipi.  Hope this proves useful.

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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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