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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shellebrownies's picture
Replies 12
Last reply 5/11/2011 - 3:52pm

My husband Don was given info on three trials he might qualify for if he doesn't have brain mets. We've started reading through the packets, but it's kind of mind-boggling right now.

I was wondering if anyone has been on or has any good information on the following trials: 

BRAF/MEK

Ipi with Bevacizumab

Ipi with GM-CSF

 

I appreciate any feedback, experiences, or information you can provide. Thank you!

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/9/2011 - 9:12am

Hi Donna,

 

I saw an  earlier post that you said that you were going to do a 2nd round of IPI yet you are NED.

My questions is why did you decide to do a 2nd round if you are NED w/o any tumors/subqs on your leg? Did you have scans before deciding on the 2nd round of IPI.what were the results?

 

I wish you a good response on your 2nd round.

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Sherron's picture
Replies 3
Last reply 5/7/2011 - 6:21pm

Leaving to go do the Melanoma Walk in Dallas, Texas in memory of my Jim, and for ALL OF YOU OTHER WARRIORS!!  WISH ME WELL....

TAKE CARE,

SHERRON,WIFE TO JIM FOREVER!

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Lunawest's picture
Replies 7
Last reply 1/30/2012 - 6:52am

I am 3-1/2 weeks out of melanoma surgery for a stage 1 tumor on my ankle. My tumor excision wound and skin flap healed beautifully, and thankfully, the results of my lymph node biopsy were negative. As a result of SLNB incisions, I now have two seromas (sacs of lymphatic fluid), one at the site of each lymph node incision (upper thigh and groin). I understand this is a fairly common side-effect of lymph node removal.  My surgeon suggested letting them heal on their own and using compression garments to alleviate the discomfort, which I have been doing fairly successfully. Now that I have returned to work, the condition seems to be escalating rather than resolving.The seromas seem to be getting larger, and my entire right leg is swollen with fluid by the end of the day. Elevation usually relieves this somewhat.

My surgeon is a purist who will not treat the seromas by aspiration due to the risk of infection.(A position I respect.)  If they don't resolve on their own, he is recommending another surgical procedure to drain them, followed by wound vac therapy to heal those wounds infection-free.

I was wondering if any others have had experience self-healing a post-surgical seroma. How long did it take to resolve? Remedies for the discomfort?

Also, has anyone had a serome treated surgically and/or wound vac therapy? What was that like?

I know that in the big picture my prognosis is good and I am grateful for that. Would love to hear your experiences/advice.

Health and healing to ALL :)

 

Quality, not quantity...

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shellebrownies's picture
Replies 4
Last reply 5/7/2011 - 7:07pm

Bad news from Dana Farber today; Don is officially Stage IV. It appears that it is spreading even more rapidly than the doctors expected. The PET scan done last week showed not only increased tumor growth deeper in his right shoulder, but it also showed at least 2 mets in his liver (one on each lobe), bone lesions in several areas away from the original site.

We are still waiting for the BRAF test results (our old hospital dragged their feet on getting DF the sample...), but Don had to get another CT and MRI today and he will be getting a liver met biopsied the early part of next week. The doctors are hoping to get him into the BRAF/MEK trial, assuming the test results are in the brain are still clear.

Please.... we could really use listening to your stage IV sucess stories right about now.... 

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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petie540's picture
Replies 2
Last reply 5/6/2011 - 11:11pm
Replies by: petie540, Charlie S

Being a melanoma patient and a practicing psychiatrist perhaps I could be of help to the folks out there

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I don't know how many people have read about the remarkable work that Dr Steven Rosenberg has
been doing. As many new members of this forum may not realise that one of his patients has a
truly amazing story to tell, I think that is it timely to post the link to the details of his
"journey through stage 4 melanoma" here:
http://wgalinat.blogspot.com/

This is a link to a recent post by Warren Galinat that somehow didn't get the attention that it
deserved:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/hi-all-warren-galinat-here-back-nih

Frank from Australia

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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kjshaner444's picture
Replies 3
Last reply 5/7/2011 - 2:59pm

I've read a lot, but am still uncertain whether Yervoy is prescribed only for late stage (Stage IV). Thanks.

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naty's picture
Replies 4
Last reply 5/7/2011 - 7:12pm

My brother had a biopsy on a mole.  The path came back positive melanoma cells.  He has another app't for a deeper excision.  Does this mean melanoma?  (he's the type to ask no questions and think everything means nothing.  Our father passed from melanoma 4 mo's ago and his mother also had melanoma twice (but died of other causes) 

I really want to go to his next app't.  Any idea on this ? diagnosis?

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kjshaner444's picture
Replies 0

Is Yervoy prescribed only for late stage melanoma? And, what defines "late stage"?  Thanks.

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Replies by: EmilyandMike

My husband is stage 4 with three subcutaneous sites and one that is on the vein leading to his pancreas.  He went on Ipi after no results with il2 and not qualifying for BRAF.  He has been on Ipi for 12 weeks and one of his sites has tripled in size and is now painful.  Our doctor thinks it's "swollen" because the Ipi has stimulated his immune system to attack it.  I don't like the "wait and see" approach so wondering if anyone can share their experience.  I would rather take action if the most common experience is that the Ipi didn't work if the tumors grew.

Thanks

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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nyalt's picture
Replies 10
Last reply 5/8/2011 - 5:02pm

Hi, I had a WLE on my back about a month ago.  I ended up with an infection in the wound and required a few extra doctor visits, special dressings and some antibiotics, but it is now healing well.  My doctor has me putting antibiotic ointment on it 2 x day with a bandage.

Here are my questions:

1. as your WLE healed, what color was the base of your wound? 

2. how long was it sore?

3. if your scar had an indentation in it, did it eventually minimize or did it remain depressed?

I've never had anything like this so I'm not sure what the range of 'normal' is.

Thanks again for your thoughts.

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petie540's picture
Replies 10
Last reply 5/9/2011 - 7:31pm

How many out there have responded to treatment and are unsure if this means  good things lie ahead or are you just getting closer to a new event with your luck running out. See my profile to understand

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Lisa13's picture
Replies 17
Last reply 5/15/2011 - 5:50pm

I wrote yesterday about getting rejected from the ipi/placebo trial in Montreal because they found some suspicious, tiny nodules in my lungs. They're too small to clearly see what they are, but they definately seemed concerned it's melanoma (up to 20 small nodules). I just had a Petscan at the end of February, plus surgery and a lymph node dissection and had clear CT scans as well. 2 months later, I've got these nodules and I'm scared out of mind. It's kind of a blessing I got screened for this trial, otherwise I wouldn't have gone in for scans until the end of June!!  I'm hoping since it's early, we can start trying to treat this. 

I have an 18 month old daughter, my husband and I just bought a home thinking melanoma wasn't coming back anytime soon and now I'm crushed. My oncologist suggested on the phone to wait a month to see if they grow, but I'll be telling him next week, I want treatment right away.  Why would I give this dreadlful disease a chance to invade my body??

First of all, since these are very small right now, can systemic treatment possibly make them disappear? Can it also help to kill any other rogue cells that are floating around or keep it from coming anywhere else?  I'm going crazy and have to wait till Wednesday to get any answers. My oncologist mentioned IL-21 and I"m willing to do anything.  Please let the Stage 4 people come on here and tell me there is hope that I can keep this from spreading.  I want to believe that this is a mistake and this won't be melanoma and will all disappear.   I went from being hopeful to utter despair.

Lisa

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

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Anonymous's picture
Anonymous
Replies 0

Hi Jim,

 

Came across one of your all posts & wondered how you are doing with your decision to have scans early or continue with the drug you are taking at Angeles clinic.

Decisions are always difficult when it come to treatment but I know that you will make the correct choice for you.

Please keep us posted.

Wishing you the best

Douglas

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