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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RGal's picture
Replies 1
Last reply 2/24/2015 - 12:53am
Replies by: Jubes

My father has just begun a trial of Anti pd-1 trial.  He had one infusion and has been on the  oral inhibitor pills for just about 2 wks now.  After week one he had enough fluid in his lungs to have him hospitalized to drain the lungs.  There is now some sort of mass that the doctors need to break up so they can continue the draining to continue.  Has anyone had a similar experience with lung nodules?  Any info you can share would be most apprectiated.

 

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ldub's picture
Replies 8
Last reply 2/25/2015 - 2:34pm
Replies by: ldub, Charlie S, Mom2Addy, Janner

Hi - I had two moles taken off last week.  Unfortunately, one of the moles was MIS.  What's bothering me is that my dermatologist (very experienced - 40+ years, academician, metropolitan area) said that he was not impressed with the mole on my calf that I pointed out and that we could just wait and watch (it was about 5 mm).  The mole bothered me as an ugly duckling and stood out from the others on my leg, so I told him I would just like to get rid of it as I might obsess on it.  Imagine my surprise when it came back positive as early MIS. My doctor has reassured me that I am very lucky that we got it at such an early stage (and I completely agree) and that I do not have to worry.  Of course I am freaking out now.  Now he also mentions that he thought it was dysplastic (which he never told me when I was there). 

Because my doctor did not think the mole was any big deal before the path came back,  I am now questioning everything - my path results (even though they were sent out to a separate dermatopathologist whose CV seems OK), the correct staging (hoping overread and not underread) and I now have serious reservations about going back to him for further monitoring once I have the WLE done in three weeks at a melanoma clinic.  I keep asking myself - What if I listened to him?  What if he misses other strange birds hanging out on my skin?  Although I have been to him a few times for other mole removal and basic checks and we have a pretty good relationship otherwise, I am pretty sure this physician/patient relationship is doomed because he essentially missed this.  Have others out there had this happen to them?  Also, can anyone provide some coping advice as I wait for the re-review of my path slides and the WLE experience?  I am having a lot of anxiety even though my prognosis seems good at this time.  Thanks!

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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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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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FayFighter's picture
Replies 14
Last reply 2/28/2015 - 12:05pm

 

 

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.

past Friday : 2 small liver mets. Uggggh.  Possible gastric met.  Sub qs popping up

nih wouldn't take him because of colitis.  

 

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.

Update:  He is hla a2 match for immunocore   Plan b is abraxane/avastin and gamma for brain  

 

What would you do????? Thoughts on il2?  The immunocore phase 1 showed 13 percent response  

Scrambling here in NJ  

 

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lanasri's picture
Replies 2
Last reply 2/27/2015 - 8:49am
Replies by: lanasri, Becky

My son's wife and a couple of good friends have created a website with his extraordinary landscape photographs to honor his memory by donating all net proceeds to the Melanoma Research Foundation.  

Jeffrey and I visited this forum often and always came away with an abundance of knowledge and support.  The amount of compassion in this forum is truly a gift and one that Jeffrey had supported through the sale of his images.  Here is the link to his website, which really tells Jeff's story.  Clicking on each photograph will provide poignant memories evoked by the image, along with a link to purchase.  

Please pass the link along to everyone you know!  As we are all painfully aware, there is nowhere near enough money going toward Melanoma research.   This is our way of contributing.  

http://www.jeffitandbethere.com/

Thank you for your support!

Stay strong!

Lana

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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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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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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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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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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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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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andimd's picture
Replies 7
Last reply 2/24/2015 - 7:12pm

I have been being treated for a fungus under the nail on my big toe for 3 or 4 months. In the past month, not only has it not gotten better but it is changing a lot. I have an appointment with a podiatrist in 1 1/2 weeks but hate the wait. A spot started that looked kind of brown, it now takes up half of the toenail and keeps getting darker. The cuticle and surrounding skin is also getting dark (pretty quickly) and today I noticed an almost yellow small circle in the middlevof the black area. I'm trying not to worry but not sure that I like how fast it is changing. Has anyone seen anything like this? It is very ugly but I would post a pic if I knew how. Any info or opinions are appreciated, thanks!!

Andrea Domeier

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Dear MPIP Community:

We are looking for approximately 6 melanoma patients who were diagnosed at Stage III and are willing to participate in a two-hour online discussion focus group on Tuesday, March 10, 2015 from 5-7pm ET. During the focus group, we will discuss the following topics:

  • Knowledge of treatment options
  • The lack of treatment options for Stage III patients
  • The psychosocial effects of a Stage III diagnosis
  • Decision-making around treatment
  • Obtaining a second opinion
  • Supportive resources
  • Your overall experience

A $100 honorarium will be provided for your participation. In order to participate, you will need a telephone, a computer with high speed internet access and a webcam. If you do not have a webcam, one can be provided to you at no charge.

If you are interested in participating,  please click HERE to answer additional screening questions. You will then be contacted by our hosting technology company with next steps. 

You may contact me directly if you have questions about the focus group. Thank you for your help!

Sincerely,

Shelby - MRF

education@melanoma.org

(202) 742-5945

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