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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swissie's picture
Replies 0

Hello everyone,

I haven't posted in a long time.
Short history, Stage IIIb since July 2009, started double blind trial with 10 mg ipi / placebo in September 2010.
Ended this trial on own request after 8th infusion due to side effects (fatigue and increase of spleen).

All my scans have been clean so far.
Half a year ago, I had a swollen lymph node in my right groin (the original melanoma was on my left knee, the met in my left groin).
Had an FNA which came out as a reactive lymph node.

Last week I had a second biopsy (increase from 2.2 to 3.5 cm), which is declared a reactive lymph node again.
Off course this is great news.

However, there is nothing mentioned about any melanoma marker testing.

Can one say a lymph node is reactive, just based on the kappa-lambda ration of 1.1 :1 and the existance of 66% CD3 positiveT-cells, 27%  CD19 positive B-cells  and the lack of CD5, CD10 and CD23?

It would be great if anyone can explain this (response from my doctor: "I guess if the cell line is clear (all lymphocytic cells) there is no need for melanoma markers").

 

Thanks for your help,
Swissie

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Brendan's picture
Replies 5
Last reply 4/23/2013 - 12:11pm
Replies by: kylez, Brendan, jag

Hi Everyone,

I had a brain met discovered last June (I was NED for 9 months prior). I had GammaKnife to treat (followed by ipi in Sep-Oct) . I then had a craniotomy in Nov to remove the met which was causing severe pain (pathology revealed dead cells and melanoma cells). A recent MRI showed a 16mm recurrence and I begin my CyberKnife on Wed.

Does anyone have any experience with both types of radiation?

Thanks!
Brendan

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Brendan's picture
Replies 0

Hi Everyone,

I had a brain met discovered last June (I was NED for 9 months prior). I had GammaKnife to treat (followed by ipi in Sep-Oct) . I then had a craniotomy in Nov to remove the met which was causing severe pain (pathology revealed dead cells and melanoma cells). A recent MRI showed a 16mm recurrence and I begin my CyberKnife on Wed.

Does anyone have any experience with both types of radiation?

Thanks!
Brendan

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Crystal0702's picture
Replies 3
Last reply 4/22/2013 - 1:30pm
Replies by: Crystal0702, Janner

Hello!  I was just diagnosed with Melanoma in situ based on a small sample that my PCP took. I have a Surgery Consult and Oncology appointment next week. My biopsy report inidcated that the Melanoma Cells covered the full tissue sample, which is why I need further surgery, can this diagnosis change? Is there a chance that the cells go deeper than the sample showed?

Also, Ive seen mix responses - but is this actually cancerous?

Thanks in advance for anyones opinion/advice/experience! 

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Sherron's picture
Replies 16
Last reply 4/25/2013 - 10:25am

Hi Everyone,

I will be doing the Melanoma Walk in Dallas on May 4th, 2013 at Bachman Lake in Dallas, Texas.  I am doing in memory of husband, Jim, some of you will remember his story.  And I will be doing for all of you also....If anyone wants to help support me in my effort, go to Aim at Melanoma to make a small donation...Every little bit helps in research and helps to find a cure...It is under my name  Sherron Clevenger.

Take Care,

Sherron, wife to Jim FOREVER

PROFILE  UNDER - Sherron

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Erinmay22's picture
Replies 17
Last reply 4/28/2013 - 6:02pm

I know this question has come up a few times.  Just curious as to folks thoughts on this.  Folks always seem surprised that I'm still working full time.  Had met to small intestine last year.  That was removed surgically in October but they left a lymph node they couldn't easily remove surgically.  Last May- Sept I did Zelboraf and then Sept- Nov Yervoy.  Started anti-pd1 in Jan.  Lymph node continues to shrink but my last scan  I did have a tiny lung spot show up.  Guess that is what got me thinking more about working full time.  I think maybe sometimes I try to do to much :)  (i.e. working full time, playing volleyball a few nights a week, and yoga 2 x's per week).  I just had dose #5 of Merck's anti-PD1.  No major side effects although starting to feel the fatigue.  

I know the work distraction is good - but also want to make sure I'm not pushing myself too much.  :)

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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MRI shows 6 more spots. The original 4mm spot was treated with radiation and showed raditation had done its job. The PET scan showed very little to no results so far on the original tumors. The PET scan showed more tumors in several areas under the skin which we noticed. Did not show any addtional on organs. The onc and raditation specialist meet and decided to treat the brain with WBR. Concerns were that before IPI might help the brain that she would get effects from the spots growing in the brain area. The WBR is scedule to starat the 22nd for 10 days. Not wanting to stop a systemic treatment they are going to start a small dose of Temodar during the WBR. The onc states next step is the anti PD-1 once completed with WBR. The doctors treating my wife at MOffit are Dr. Kudchadkar and Dr. Rao. She still is much more tired and/or fatigued during the day. She is also having sever gas which the doctor says is probably a side effect of the IPI. Any thoughts or concerns with the WBR and Temodar? Once you feel comfortable with your team of doctors, I guess you must always trust their plans of attack. 

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Becky C.'s picture
Replies 9
Last reply 4/21/2013 - 7:24pm

Hi , everyone. I just returned from MD Anderson and wanted to share my experience. I met with Dr. Wen-Jen Hu, and liked her very much. It was such a good feeling to talk to someone so knowledgeable about melanoma. We are looking at a clinical trial starting in May for Anti-Pd 1, but I have to have a brain MRI first.My brain mets have to be stable.They were stable on my last petscan so we hope they still are.  Is there anyone out there that has had this treatment? I would really like to know your experience. The research i have read about it sounds very positive.

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mark1101's picture
Replies 3
Last reply 4/20/2013 - 11:45am
Replies by: Linny, hbecker, Janner

Spring seems to be sputtering into life here and with it comes sunshine and outside activity.  I was never hypervigilant about sun exposure previously, although I was never a sun worshipper either.  Since my diagnosis 3 months ago I am curious about how paranoid of sun exposure I need to be going forward.  I don't think I've had a sunburn since I was a kid, I rarely use sun screen unless I'm planning to be in direct sun for over 30 minutes, usually always wear a hat, tee shirt and long pants when outside.  Does melanoma mean I should live in the shadows or can I enjoy my outdoor life as in the past?

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Anyone else on this study. My husband enrolled in November 2012. He's in the second cohort. Several weary months and then 3 weeks ago seems to be feeling much better. What experiences have others had?

 

Thanks

Sarah

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Anonymous's picture
Replies 5
Last reply 5/3/2013 - 3:14am
Replies by: gary1976mary, austintx

I searched the site and found a few posts on this trial but nothing recent.  Does anyone know where the trial is currently accepting participants or if they are?  Has anyone participated?

 

http://www.fiercevaccines.com/story/polynomas-melanoma-vax-pushes-late-s...

 

This article makes it sound like a great option over interferon. 

 

Thanks for any info.

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/20/2013 - 5:54pm
Replies by: buffcody, Anonymous, Linny, Randy437, Janner

I thought this had been fixed

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I thought this had been fixed

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Daughterwhocares's picture
Replies 1
Last reply 4/20/2013 - 11:11pm
Replies by: kylez

My father has stage 4 Melanoma. It was removed off his leg March 2012 and again January 2013. Petscan was clear- 8 weeks later cancer is everywhere. He has had his first dose of yervoy... He was in the hospital before the treatment and now after- he can barely sit up has no energy, no appetite and needs hospital fluids... Has anyone else been this effected? I don't think he can live like this through 2 more Yervoy treatments and then wait for the turn around...is there anyone out there who can give me hope.?

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