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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Just got word this morning that Kaiser has approved my going to UCSF to participate in the BRAF/MEK clinical trial!  I realized that most of my "angst" could have been avoided if my oncologist supported my participation in the trial. Other Kaiser members on this board just got referred over with no problem because their Kaiser oncologist supported their decision to participate.

Next steps for me are going through the pre-testing to qualify for the trial. I know I am BRAF positive from an earlier test, but because it was done before the current standards it needs to be repeated. Scans, lab work, eye exam, vist to dermatologist and oncologist all in the next week or so. I have two more weeks to finish the "wash out" of my previous therapy, Nexavar, so the pre-qualification stuff should be completed in time for me to start the trial on May 9 or so.

Thanks to everyone on this board for your suggestions and encouragement. I will be looking for a new oncologist once the dust settles. I was going to change health plans but now I realize that if I just get the right doc I can manage, at least for now, within the Kaiser system. Since my care will be basically under Dr. Daud at UCSF during the trial, I will have access to a great melanoma specialist without having to change health plans right now.

Keep on fighting!

Eileen L

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Lisa13's picture
Replies 16
Last reply 4/30/2012 - 9:15am

I just finished my last ipi reinduction.  I'm had a brain tumour, but lately have had eye problems.  Mine is basically blury and colour. Are these normal problems with people who've had ipi? What perscriptio do they give you? 

So far, the large brain tumour with blood is stil there and hasn't moved in 13 days.  I'm off to Florida tomorrow with so mucy perscriptions just in case. The brain tumour hasn't moved, so I'm hopefully, I want to be abe to enjoy the trip.  More than anything, it's the eye problems.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Hi again,
Yesterday Dr.Halpern froze everything on my scalp, face, neck and in my ear. Tonight I start applying Aldera again. He said that there is a risk in the ear because we could be damaging the cartlidge, but that the benefits outweigh the risks. When I asked what happens if the cartlidge is damaged and he said we'd deal w/it, I didn't have the energy or desire to question him further. Not being an informed patient is not my style. I'll ask next time.
He confirmed that the mel on my "prior-irradiated" scalp are great size for new cohort of BMS PD1 trial--too bad they only want virgin skin.
He is leaving one met under my chin alone--maybe it will grow a bit, especially that my 4 th ipi infusion, if I get it, is on hold.
Could be way worse as all u warriors have shown me, so I'm working on putting more gratitude in my attitude.
Have a good day,
karen

Don't Stop Believing

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I am continuing my battle with Kaiser to get approval for participation in the Genentech BRAF/MEK trial. I just found out some information that makes me feel a bit better about all of this.

I am a Kaiser member through a Medicare Advantage Plan. Medicare regulations states that when you participate in a trial at a Medicare approved facility, the facility bills Medicare directly. If it is an outpatient service, Medicare will pay 80% of the costs as long as the service is something Medicare would usually cover. The Medicare Advantage plan may chose to cover the other 20%, and you need to go through whatever their approval process is for going to an outside service.

For me, this is fantastic since I was looking at potentially paying out of pocket for the first two months of this trial for services not covered by the study. The items that weren't covered included a PET/CT scan, which is big $$$! Twenty percent of big $$$ sounds better than 100% of big $$$! My stress level around this approval just plummeted!!!!

I had an Alice in Wonderland type of day with pushing the approval process forward, I had a health plan representative tell me the health plan never pays for any expenses related to a trial, which is totally against California law! Then I had my doctor's nurse confirm that he is not going to advocate for me with the health plan approval process because he just doesn't support participation in Phase I clinical trials! So I am trying to get to speak to the physician who is reviewing the request for the health plan to make my case. All this is way more than anybody should have to do just to get approval for a covered service.

That's it for now. Take care everyone, and keep up the good fight!

Eileen L

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Hi all. I am wondering if anyone has heard of the term Post lymph node dissection pain syndrome? 

All the research i find is for breast cancer patients, but this research states that there are tons of people with this issue. Since my doctors are always trying to figure out why im still having such bad pain year after my surgeries, im thinking this could be a great topic at my next appointment. Just wanted to know if anyone else has heard of this or is experiencing severe chronic pain months or years after having their nodes removed. 

 

thanks!

 

Dj

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Angela C's picture
Replies 13
Last reply 4/29/2012 - 11:30am

Hi everyone.

I got home yesterday after three weeks at NIH for IL-12 TIL treatment. Everything went really well. I had a week of chemo, followed by cell infusion then about two weeks in-patient while they monitored me for any side effects. I had a lot of fevers, some pretty high - 103-104. The doctors think things look good and they were able to see levels of IL-12 and interferons in my blood. My TIL cells were very active and grew extremely well in the lab. They are supposed to continue to multiply in my body and release IL-12 as they encounter Melanoma cells and kill them. I go back in about three weeks for my first follow up scans.

I'll let you guys know what scans show next month. I'm feeling very hopeful. They have seen results in almost all of the patients in the higher doses. I had one billion cells put back in my body. I'm in the 9th cohort out of 12.

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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triciad's picture
Replies 3
Last reply 4/26/2012 - 9:36am
Replies by: triciad, vivian, lhaley

I am really confused and need any help or guidance you can offer!

In July, I found an intransit close to my original tumor (buttocks).  I went to my dermatologist who tried to excise, but it was too deep.  She sent me directly to surgeon.  The piece she got out was biopsied and came back melanoma.  I had surgery and did 6 weeks of radiation.

A couple of weeks ago, I found a similar bump.  I went to my dermatologist who told me she spoke with my oncologist and he said not to biopsy, go and get PET.  I got the PET.  My oncologist's PA called me the next morning to report the PET showed absolutely nothing...probably fatty tissue.  I was in shock because it was right between my 2 previous melanomas and felt exactly like the one in July.  I thought something wasn't right, but the temporary elation was wonderful. 

I just happened to have my regular checkup with my oncologist that afternoon, so I still went to see him.  He looked at it and said, "It's definitely melanoma and set up surgery with the surgeon".  So I did, and I had the surgery.  Path came back...melanoma.

Naturally, I'm bewildered.  How could the PET not show anything (path report says specimen was 3 x 1.5 x 1.3 cm)?  In addition, if I didn't have my regular check up, I would be walking around with this melanoma growing and growing inside of me!

I'm wondering, what would you do?  Do I say something to my oncologist on Monday about the "all clear message"?  I used to have such faith in the PET scan findings, but now, I'm not so sure.  Also, I don't know if it's time to get a new doctor? 

PLEASE give me your advice...what would you do?

Thank you so much for all of your help.  I've said it before and I'll say it again...it's my MPIP family who I trust!

Tricia

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triciad's picture
Replies 2
Last reply 4/25/2012 - 4:20pm
Replies by: triciad, Janner

Hi Everyone,

Well, here's my history. 

7/09 - first diagnosed...SNB, WLE - 3 nodes positive...groin area

10/09-10/10 - Full year interferon

7/11 - Intransit...same area...surgery to remove and 6 weeks radiation

4/12 - found another intransit...surgery...what's next?

So, I just got a copy of the pathology report.  It says, "Recurrent malignant melanoma, mulitlpe foci, focally present at the inked edge of the specimen.  Lymphovascular invasion is present."

It doesn't have anything about mitotic rate.  Also, never had "lymphovascular invasion present" mentioned before.  Please let me know if you know what this means...the good, the bad, and the ugly.

Thanks so much for your help.  I have an appointment with my surgeon tomorrow and oncologist on Monday, but I'd like to have some questions lined up.

Keeping you all in my prayers!

Tricia

 

 

                                            

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susanr's picture
Replies 4
Last reply 4/27/2012 - 8:00am
Replies by: susanr, hope4cure1, triciad

Hello everyone,

My brother just started Abraxane today.  He is currently Stage IV as of 2/12.  Had yervoy 12/11. after clear PET.  In Feb 2012 his PET lite up like a Christmas tree. Lung nodules, re-occuring Left pelvic mass---had radiation there but nothing, nodules in abdominal cavity along with a spot on right femur.  He has been on Temodor since 2/12 but after last PET 2 weeks ago they decided on Abraxane since no improvement and some enlargement.  Anyone been on Abraxane and Temodor combo.  Hope to hear some of you had good results.  It seems he has had no good news since being dx. 2  1/2 yrs ago. 

Only good thing we have had was that clear PET in Nov 2011 prior to the yervoy.  Also, He has a mass behind his left knee which has grown and now going to have radiation to help shrink so he can walk better.  He has had quite a few surgerys---skin graft on his foot where primary started.

I am probably not making much sense so If you need more info let me know in order to give me some help/advice.  i am in the medical field and unfortunately know how nasty this melanoma is and I am trying to be optimistic but it is very hard when you know the response rates are not great on how well melanoma responds to chemo.  This is my first time posting but have reviewed website for awhile and have to say everyone is great and amazing how supportive. 

Thank you Everyone!!!!!

Susan

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On my 4th month of zelboraf and am experiencing increased pore gland swelling. Dermatologist recommending retin A. Can't seem to find information about possible drug interactions - concerned with strength of retin A and adding another medication. Any suggestions? Steve

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Replies by: momof2kids, kylez

 

Interview with Dr. Jim Allison of Sloan Kettering

http://youtu.be/d1cgzCReuDY 

 

To Cure cancer, your immune system  must make memory cells that can distingush Melanoma cancer when and if you relaps. This done in at initial stage of T-cell Differentation and propagation. You must have the right Melieu (An environment or a setting )) in place. This can be done with Systematic Combinatorial Therapy.

Best regards,

 

Jimmy b

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Anonymous's picture
Replies 13
Last reply 5/7/2012 - 9:47pm
Replies by: Bob B., CLPrice31, Janner, Linny, natasha, Anonymous

We will be vacationing in Mexico, a beach vacation, for 14 days.  We are spending two days on a boat so will be very exposed to sun.  Would it be a good idea to get 10 minutes of sun a day before I go, so that my skin has a little natural protection?  I won't burn in 10 minutes, I will simply develop some protective color.  I had melanoma years ago, earliest stage.  I tried to find information on google but everything was conflicting. 

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Hypophysitis Induced by Monoclonal Antibodies to Cytotoxic T Lymphocyte Antigen 4: Challenges from a New Cause of a Rare Disease

 

Specific human monoclonal antibodies antagonize cytotoxic T-lymphocyte antigen 4 (anti–CTLA-4 mAbs), a negative regulator of the immune system, inducing unrestrained T-cell activation. In patients with advanced or metastatic melanoma, one of these agents, ipilimumab, produced considerable disease control rates and, for the first time, a clear improvement in overall survival outcomes. However, accumulating clinical experience with anti–CTLA-4 mAbs identified a novel syndrome of autoimmune and autoinflammatory side effects, designated as “immune-related adverse events,” including mainly rash, colitis, and hepatitis. Autoimmune hypophysitis has emerged as a distinctive side effect induced by anti–CTLA-4 mAbs. This condition may be life threatening because of adrenal insufficiency if not promptly recognized, but it may easily be diagnosed and treated if clinically suspected. Hypopituitarism caused by these agents is rarely reversible and prolonged or life-long substitutive hormonal treatment is often required. The precise mechanism of injury to the pituitary triggered by anti–CTLA-4 mAbs is yet to be fully elucidated.

 http://theoncologist.alphamedpress.org/content/17/4/525.abstract?maxtoshow=&hits=1&RESULTFORMAT=&andorexacttitle=and&andorexacttitleabs=and&fulltext=melanoma&andorexactfulltext=and&searchid=1&usestrictdates=yes&resourcetype=HWCIT&ct 

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Karin L's picture
Replies 2
Last reply 4/25/2012 - 12:35pm

One year after beginning HD IL2 the PET/CT showed all soft tissue disease resolved (numerous tumors in the groin lymph nodes and many in liver ) and all bone mets resolved.  Only issue was L5 area in spine.  Followed up with MRI of lumbar spine and it did show mel as well as a soft tissue mass close by encroaching on a nerve. 

I developed severe neuropathy ( believed to be a side affect from the IL2 treatment) in January.  It got progressively worse as time went on to not only affecting both hands and feet but I had numbness everywhere including my lips/teeth/ears...etc.  I couldn't feel my feet or hands whatsoever.  Treated with high dose steriods and tapered off for 15 days.  This was in mid March.  You could draw a line from my lower back down to my ankle with severe pain (not tolerable) right before beginning treatment....which was the nerve.  The steriod treatment helped immensely but the pain is still there (tolerable)  as well as some numbness in that leg only at this point.  This treatment was from my neurologist after various tests and consult with my oncologist.    Now we know that particular pain/nerve/lower back pain is from the mel.  Both were going on at the same time.

Met with my onc. yesterday for follow-up after the MRI.  My choices were 1. watch and wait with MRI in 8wks to see if my immune system will resolve this issue since it took care of everything else.  2. Radiation.  One in three chance it will either relieve the pain, relieve the pain and resolve the tumor, or do nothing.  3. Surgery which would be abdominal due to the location and while not risky, not without much recovery and chance of damaging the nerve. 

Meh.  At this point I chose to watch and wait.  Other than the pain which is a little above annoying and is relieved with low dose pain meds I feel great and I am told I look great.  Dr. feels why take chances if what is going on may actually be healing. 

Am I crazy?  I agree with make your decision and don't look back but if anyone has anything they would like to say PLEASE do so.  Many times the thought process kicks into a higher gear with others thoughts.  Are we missing something? 

This is crazy long so if you read it, thank you.  If you reply, even bigger thanks!

Karin 

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Wilfred's picture
Replies 9
Last reply 4/28/2012 - 1:21am

 

Julie, and eveybody else, thanks for the comments on my post of March 20, 2012. It is important to me to have reasonable replies to my questions from people who have been there done that. I have been to see four doctors: Dr William Sharfman at Hopkins, Dr Anna Pavlick at NYUCC in NYC, Dr Lynn Schuchter at Abramson Cancer Cenetr at UPenn in Philadelphia and Dr Paul Chapman at MSKCC.  

Here are my thoughts; I am being honest, I am not here for brownie points, I am here for me and you: Sharfman is probably an excellent Oncologist but, for me, there was no fire in his belly. I got the impression he had been doing this gig for a long time and was going to play the same old tunes. Pavlick is a firecracker. She has a goal: she wants me to survive and play with my grandchildren. She said that if the trial she has going doesn't work in two months she would pull me out and do something else. She is interested in me, she is interested in my winning the fight with her help. Schuchter is a slightly more reserved Pavlick, but a strong person and great doctor. Now I had a real problem, I was a believer in both Dr Pavlick and Dr Schuchter: they were here for me, they wanted me to beat this thing. Then we met with Dr Chapman at MSKCC. MSKCC did not have a trial for which I would qualify and Dr Chapman was dream come true. He discussed my history in detai, he listened to my search for a trial and he examined me thouroughly. He said that I wouldn't go wrong with Dr Pavlick's BRAF/MEK trial. The next day I signed the consent form with NYUCC. The trial is with a combo of Zelboraf and an unapproved drug GDC0973. 

So... that's where we stand; in the past week I have had lots of tests and on Tuesday, May 1, I start the meds. The system/marketplace, whatever you want to call it is truly amazing. Within 45 days I have been able to meet with 4 of the top Melanoma Doctors in the US, and become a member of a very limited number of people privileged to join a trial with real possibilites of success. My family participated in the decision process and with lots of my friends will help me win this fight. Best wishes to you all, Wilfred

If you fight, you may lose, If you don’t fight, you will lose.

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