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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Shelly in Switzerland's picture
Replies 5
Last reply 3/1/2011 - 1:20pm

I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf inhibitor. 

Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

Has anyone experienced similar side effects? 

Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

Thank you for your help.

Shelly in Switzerland, stage IV

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I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf. 

Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

Has anyone experienced similar side effects? 

Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

Thank you for your help.

Shelly in Switzerland, stage IV

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acyr's picture
Replies 6
Last reply 2/22/2011 - 11:10pm

Hi everyone,
Below is an update provided by Sharyn's husband Jim tonight regarding her surgery. As all of us who have come to know Sharyn, she has come out of this in true Sharyn style - we send her our best wishes for a speedy recovery and hope she can get back on her trial soon.

Annette

Hi everyone
Sharyns surgery went well this morning and she is resting in Special Care, in fact when I dropped in after work she was eating her supper, she seems a little brighter then she has for a while and is in very good spirits.
Well that's it for now, she should move into her room by tomorrow night or Wednesday then hopefully home by Friday.
Regards
Jim

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This abstract from 2009 claims that adoptive cell therapy is the best treatment (available in clinical trials) for metastatic melanoma.

http://www.ncbi.nlm.nih.gov/pubmed/19304471?dopt=Abstract

I recall reading about this in 2009 while my late wife was stage 4 and struggling with the side effects of chemo.

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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heg50heg's picture
Replies 17
Last reply 2/22/2011 - 5:10pm

hello , as of this afternoon I found out my results from brain and body scan and was happy to hear they all came back clear. this was good and bad news as now my chemo dr. says I have 3 options - wait and see and be examined basically do nothing more - do a year of interferon , I understand that makes you pretty sick - or participate in a clinical trial, unfortanately there is none going on at this time for stage 3 patients. Stuck trying to decide what to do, should I or not do the interferon. Had 1 lymph node infected at time of surgery. will it spread yet . many many questions and really confused what to do. any thoughts or comments greatly appreciated here.

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4hope's picture
Replies 4
Last reply 2/24/2011 - 7:41am

Hi - I am a new poster but have been reading your postings recently and find them helpful and encouraging.. I have filed my profile and would greatly appreciate reccomendations or experiences that might help me to make a decision going forward on the treatment I should use.

I am stage IV with my initial melanoma removed Feb. 2010 with a 4mm tumor on my left side. . I went through 4 weeks of Interferon in  May 2010. Since then I have had a reoccurance of three melanoma nodules 1 on left side and 2 on left breast. They were surgically removed in Sept . Now I have again four more reoccuring nodules again on left side and on left breast.

I am lucky enough to live close to New York City and Phila. and have been speaking to 2 Doctors, one with the phase III Oncovex Trial and the other with the possibility of joining the phase I study of Ipi/PLX4032.

Since I am in the early IV stages of Melanoma I am uncertain which Trial if any is the right course of treatment for me. My CT scan and PT/CT show nothing yet - not even the small visable nodules. Any experience or advice would be greatly appreciated.

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lindas58's picture
Replies 5
Last reply 2/21/2011 - 11:34am
Replies by: MichaelFL, lindas58, Janner

My husband was diagnosed in Dec 2010 with a melanoma on his back. Has since been removed along with the sentinal nodes in his armpits. (they were clear).  I am very confused about his diagnosis & was hoping maybe you could answer some questions  for me. Initial pathology report was very brief, 0.42 Breslow depth,  clarks level lll, 1.6 x 1.1 cm with ulceration. We can't seem to get an answer on what stage this is or if we should be concerrned at all. The drs feel there should be no re-occurance. I am beside myself with worry it will show up elsewhere. The oncologist did tell him a few things to watch for but I feel this isn't enough. Am I just a worry wort?

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lindas58's picture
Replies 3
Last reply 2/24/2011 - 9:35pm

My husband was diagnosed in Dec 2010 with a melanoma on his back. Has since been removed along with the sentinal nodes in his armpits. (they were clear).  I am very confused about his diagnosis & was hoping maybe you could answer some questions  for me. Initial pathology report was very brief, 0.42 Breslow depth,  clarks level lll, 1.6 x 1.1 cm with ulceration. We can't seem to get an answer on what stage this is or if we should be concerrned at all. The drs feel there should be no re-occurance. I am beside myself with worry it will show up elsewhere. The oncologist did tell him a few things to watch for but I feel this isn't enough. Am I just a worry wort?

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Replies by: Janner

Here is an abstract from a recent study that finds that a fever can be beneficial when receiving treatment.

http://meeting.ascopubs.org/cgi/content/abstract/28/15_suppl/8569

It seems that a higher than normal temperature is a sign that the immune system is responding as it should. Could it therefore be that fever-reducing medication should be avoided if possible?

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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lslv's picture
Replies 3
Last reply 2/21/2011 - 7:59am
Replies by: Vermont_Donna, lslv

hello, i was diagnosed with stage 3c melanoma and had 42 lymhnodes removed from my neck in november and two were positive.  i am currently NED.  i started ipilimumab have had three treatments and have developed swollen lymphnodes in my neck starting 4 days after first treatment. they ae soft and movable and i had two needle biopsied and it came back negative. i am curious anyone has expierienced the same or heard of it.  Iam still nervous about them.  thanks in advance.

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ValinMtl's picture
Replies 3
Last reply 2/24/2011 - 9:46am
Replies by: ValinMtl, Vermont_Donna

Hi Donna, I read your reply below and was wondering about the"solaris garment".."its thick and padded kind of like an oven mitt, that you slip your foot and leg into..it goes toes to groin".  Could you tell me where you were able to purchase it? 

I fly up from Florida for CT scan on Tuesday...stressful time.  Left groin is still swollen and the new sub-qs are still there although many of my other lesions have diminished....I'm praying hard.

Val

Live Laugh Love Nothing is worth more than this day!

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CLPrice31's picture
Replies 4
Last reply 2/22/2011 - 1:00am

So, my very first meeting with Dr. Dickson at Memorial Sloan Kettering is on Friday. I am anxious for it to get here! Ready to get the show on the road!

 

I am trying to put together a list of questions that I make sure to ask him. I know I don't want to overwhelm him with every question under the sun, but I was wondering if there are any qustions you all wish you had asked right away. You know, the question you thought of AFTER you got home.

 

I figure if I have a list, I will be less nervous and the appointment will be as successful as it can possibly be. smiley

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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heg50heg's picture
Replies 13
Last reply 2/21/2011 - 12:30pm

Hi everyone , this is my first post on hereb and I really could use some info. Iwas diagnosed as stage 3 melanoma after having a wide excision surgery and lymph node mapping with 2 nodes removed and one come back posative for cancer . In jan o this year had rest of lymph nodes under arm removed amd all were negative. Went to see a chemo dr. and he wants to scan my brain and lungs and abdomen to see if the cancer has spread. that really scared me as my surgeon said I was stage 3 and would have to do a year of interferon and now this dr says something different . What do I believe or does any Dr. really know what this desease can do to person. any thoughts or prognoses info would be apprciated

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kpcollins31's picture
Replies 19
Last reply 3/19/2011 - 9:46am

I am 37, the father of three young boys, and the sole provider for my family. I was just diagnosed with melanoma on Friday (2/18/2011) and am wading through all this new information. It is intimidating and frightening. I had a growth on my forarm... was large and unsightly but the doctor was not concerned. Initial diagnosis was keratoacanthoma. Now I get this report on a malignant melanoma... Breslow thickness >8mm, Clark level V, ulceration present, mitotic rate of 7. All Greek until I start doing some reading. Now I am almost wishing I had not read anything. Still a little shocked and scared. I am scheduled for a sentinal lymph node biopsy in a week on my birthday of all days. Hoping for the best present ever which would be a negative result.

Happy to have found this forum in my reading. Wish me luck.

Kevin

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