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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betsy's picture
Replies 2
Last reply 4/27/2012 - 10:00pm
Replies by: gabsound, JuleFL

We're celebrating 3 years melanoma free! Ron had a deep and large tumor removed in his back, and total left inguinal lymph node dissection. The lymph nodes were matted, so we really didn't know how many were involved. He did interferon for 10 months. There have been some issues with pain and lymphedema, but no signs of recurrence. We are so blessed.

For 2 years I could barely leave this site. I watched, asked questions, and posted sometimes. It was an invaluable source of information, help, and support for us as we scrambled to learn. Thanks to those of you that continue to be there for all of us that are faced with gathering information on a subject we really don't want to have to learn about.

Ou prayers will continue for those facing this disease.

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LLJB's picture
Replies 1
Last reply 4/27/2012 - 9:07pm
Replies by: Janner

Hi Everyone,

I'm new to this forum...just having a bit of a freakout...I had a melanoma in situ removed by wide local excision nearly two years ago. I've just noticed some bruising directly adjacent to the site - can't remember doing anything to get the bruises, and quite a bit of puffiness around the right hand side and bottom of my scar from the removal.

Very anxious that it could have spread to the lymph nodes....Saturday here in New Zealand so no chance of getting to the Dr until Monday unless I went to an after-hours clinic, and not sure it warrants that.

Just wondering...what are the symptoms that melanoma has spread to the lymph nodes, on the shin? Had a bit of a google and didn't find anything much. Also had bad headaches lately...not sure if that's got anything to do with anything...

Thanks in advance.

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/27/2012 - 8:44pm
Replies by: yoopergirl, Anonymous

Hi

 

I am 63 years olds and  live in Californa. I have been receiving SSI for 6 months. I am having to wait 2 years to qualify for Medicare.

I am stage 4, and on a clinical trial for 6 mos. and just became  NED.

I know nothing about what qualifies a cancer patient to be able stay on  SSI and Medicare.

I would appreciate any informationyou can give me.

Thanks so much for taking the time to reply to my questions.

BettiJo

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Replies by: LynnLuc

 

Released: 4/27/2012 1:00 PM EDT
Source: Moffitt Cancer Center

 

Newswise — TAMPA, Fla. (April 27, 2012) – At Moffitt Cancer Center, patients with stage III and IV unresectable melanoma are now routinely genetically profiled for several gene mutations, including the BRAF gene, a known driver oncogene for melanoma. Research has shown that mutations in the BRAF gene determine sensitivity or resistance to a class of drugs that are BRAF inhibitors.

Moffitt Cancer Center Researchers Working at Frontiers of Melanoma Research  

 

Best Regards,

 

Jimmy B

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Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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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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Hi Everyone.  Anyone have any thoughts or have been taking Curcumin for Melanoma.  I speak to so many patients that believe it has helped their Melanoma treatment.   What do you think. ?

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Hi,

We live in Wales, United Kingdom, my husband is Stage IV and 8 weeks ago finished 8 rounds of dacarbazine with the trial drug E7080, he is currently on a maintanance programme with the E7080.

In the UK we only normally give 6 rounds of Dacarbazine but as this is an American and Japanese trial he has had 8 rounds, he tollerated everything really well for the past week has had debilitating fatigue and pins and needles in his feet.  he is being monitored closely and is having a weeks break from the E7080. 

He has had really good results and is now stable but this fatigue and the pins and needles is really getting him down.

I wondered as we in the Uk are not aware of the side effects of 8 doses of dacarbazine has anyone out there had any similar symptoms, if so any help or advise would be appreciated!

Many thanks x

 

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Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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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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OB Mike's picture
Replies 3
Last reply 4/26/2012 - 9:19pm

I am finishing my 4th dose of ipi soon and my abdominal tumor is still growing causing me shortness of breath and weight loss. Does anyone have information for my onc about raditaion therapy?

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himynameiskevin's picture
Replies 6
Last reply 4/26/2012 - 8:47pm

I've got a few random questions,  if any one has any answers or insights, I would love to hear. Help put my waiting/worried mind at rest.

1. I finished my last dose of Yervoy on Dec 20th and so far it doesn't look like I am going to benefit from it. The last time I talked to my doctor, he mentioned that he wouldn't give up on it just yet, and explained that sometimes it take a while to "work". Has anyone experienced any kind of delayed or late response?

2. As of about 5 days ago, I am experiencing what seems like mild paralysis in my left hand/wrist. No pain/numbness/tingling, it's just not quick to respond. Like my fingers don't wiggle or move as usual. It's a bit clumsy I guess. I read this could be an uncommon side effect that could arrive weeks/months after the last dose. Every time I went in for a dose of yervoy a few of the numerous questions asked if I've been dropping things or have had trouble gripping. Has anyone experienced this?

3. After finding out I have three brain mets last Friday, I understand that this paralysis feeling could be something neurological, maybe there's one of the lesions is causing pressure and problems? If that's the case, has anyone experienced something similar? If that what's causing the problems and the stereotactic radiation successfully takes these guys out this week, could i expect my hand to come back to normal?

 

That's it for now. Thanks in advance. For anyone wondering, I have an appointment with the radiation oncologist on Tuesday to see about zapping these guys out. As for the results of my ctscan, I still don't know. I dropped off the disc last Tuesday, called twice but have yet to here back, I'm not sure if that's a good thing or bad thing. My doctor is a great guy and never seems to waste a second informing me, so I'm sure there's an explanation. Should be getting a lot of news this week, I'm a bit worried, but doing my best to stay optimistic and hoping for the best. -Kevin

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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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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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yoopergirl's picture
Replies 10
Last reply 4/26/2012 - 5:49am

We traveled to Madison Wi to see my Oncologist, had blood work and then saw the doctor. He just asked how I was doing and then took a look at my arm and said that my lumps were getting bigger but nothing can be done now, he ordered a ct scan for June 4th to see if the Yervoy did any good even with just 3 treatments. I am having alot of itching so I asked about that and was told just keep using the cream that I get over the counter, I don't know was I expecting more from that visit? BTW my blood work was all good. So now it is a waiting game again. I should have asked him why they don't remove the tumors on my arm, so many questions and not getting all the answers. He is a specialist in Melanoma so I guess I just have to have faith in him. 

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