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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rjcravens's picture
Replies 4
Last reply 1/26/2012 - 11:14am
Replies by: scots, King, fdess056, Wendi Lynn

I only have three months of interferon left. Its been a long haul, i finally have the fatigue, depression and nausea under control. I have really been feeling good. And picking up extraa shifts at work. (I am a nurse). Then, starting this past weekend, i started getting this sever itching on my lower back. Its spread all over my back area and sometimes on my hips. But there no rash, no reddeness, no areas of concern...its just plain itching that is driving me crazy! No changes in fabrics or deterg or soap or any of that. Has anyone ever had this problem? I am walking around the house trying to find any corner i can use to scratch it. I am going to end up in a straight jacket.

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atcchris's picture
Replies 8
Last reply 1/26/2012 - 11:01am

I know, I know, it's my decision and I gotta be good with it, but wondering what some fellow warriors think about the rationale.

I was initiall diagnosed in January 2009, lesion on my back.. can't remember the depth, but I know there was some concern that it was deep.  It had progressed to the sentinal node, but no other of all the other nodes in the cluster.

I did interferon, one month high dose, then started on the rest of the year and made it for 5 more months but decided to stop it because the side effects were just so bad.

Scans every 3 months since then.. started with PET and MRI, then after a year, CT and MRI.  All is well until June, when they saw a spot with the CT on my lung.  Next scan, spot had grown, so a PET was done, and it wasn't particularly "hot", so 3 months later, another PET showed still not "hot", but had grown 3mm (doubled in size).  Decided to do laproscopic surgery to remove it, and it turned out to be melanoma.  No other evidence of disease at present.

Talked to my surgical oncologist, who said there were 3 options:  watch and wait to see if something else popped up,  see if it has the BRAF mutation and then take the pill (ZELBORAF), or take YERVOY.  He said if it were him, he'd put in the port, do the YERVOY and be done with it and referred me to the medical oncologist who had administered the interferon.  In talking with this doctor, he echoed my options, but added some information.  He told me that, over time ZELBORAF lost its' effectiveness.  In a case where there was no tumor load, a person could conceivably take it indefinitely and never know if it had done any good at all.  YERVOY usually was done 4 times, but he had a 78 year old patient with significant tumor in his groin who respended quite well, and continues on a once every 3 month maintenance regimen.

While I was there, my medical oncologist called the surgical one and they talked about my case together, and both seemed comfortable with a plan to wait, watch and scan, and if something popped up, treat it with ZELBORAF initially to see if ZELBORAF could get rid of it.. If the tumor could be eliminated with ZELBORAF, fine and good, but if only stability was gained, if the tumor was operable, surgically remove it and continue on ZELBORAF until another tumor showed up.. otherwise, go on and try YERVOY.

This seems reasonable to me.  On the other hand, there is the thought that there's less than 20% chance that I don't have anything else pop up, so maybe I should hit whatever's in there as hard as I can at the start in hopes of eradicating it all while it's just a few cells running around my bloodstream.

Just hard to know if I'd be using all those drugs and enduring the side effects for nothing or if the odds really are great that taking one of these new drugs would actually wipe out whatever melanoma cells I have.

Any thoughts?  As I said, I'm leaning toward watch, wait and scan, knowing that the odds are I'll have new tumors, and I have no way of knowing where they might show up.

 

Thanks for your responses... and don't worry.. you're not likely to offend me by any of your thoughts on the subject.  I'm in information absorbing mode.

 

Chris

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It's been a very long time since I've posted last...mainly because I've been out living life.  But recently, I've developed pain under my right arm but with no apparent lymph node swelling.  In 2004, I had a full axillary disection on the left arm, and have been NED since 2005.  I've read that there is a relationship between Melanoma & Lymphoma and am a litle concerned.  Does anyone have any experience with this? 

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Lisa13's picture
Replies 2
Last reply 1/25/2012 - 10:44pm
Replies by: momof2kids, WendyPam

Today was my 24 week scan from ipi. Keep in mind, they were fabulous with 50 percent shrinkage and some even disappeared. Now at 24 weeks, they've all marginally grown and even my dr. seems confused. My lymphocytes were high during the ipi and then the day I got my 16 week scan and results, the lymphocytes went down to 0.53. Today, they are back to 1900 which my dr. feels a reintroduction of ipi would be the best idea.

I know if you're a responder to ipi, you have a good chance of it working again. Has anyone experienced this? does anyone know why something would be so great and then all of a sudden stop suddenly.

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

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Today was my 24 week scan from ipi. Keep in mind, they were fabulous with 50 percent shrinkage and some even disappeared. Now at 24 weeks, they've all marginally grown and even my dr. seems confused. My lymphocytes were high during the ipi and then the day I got my 16 week scan and results, the lymphocytes went down to 0.53. Today, they are back to 1900 which my dr. feels a reintroduction of ipi would be the best idea.

I know if you're a responder to ipi, you have a good chance of it working again. Has anyone experienced this? does anyone know why something would be so great and then all of a sudden stop suddenly.

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

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Today was my 24 week scan from ipi. Keep in mind, they were fabulous with 50 percent shrinkage and some even disappeared. Now at 24 weeks, they've all marginally grown and even my dr. seems confused. My lymphocytes were high during the ipi and then the day I got my 16 week scan and results, the lymphocytes went down to 0.53. Today, they are back to 1900 which my dr. feels a reintroduction of ipi would be the best idea.

I know if you're a responder to ipi, you have a good chance of it working again. Has anyone experienced this? does anyone know why something would be so great and then all of a sudden stop suddenly.

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

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himynameiskevin's picture
Replies 4
Last reply 1/25/2012 - 12:46pm

The good news is that, appointments have been made and I should have these three lesions in my brain taken care of by SRS in the next week or two. The locations and small sizes (largest one showing at 9mm) imply that the procedure should be pretty routine with no expectations of complications. Fingers crossed that it stays this way.

My doctor saw the CT results of my lungs, the good news is that there's nothing new. The bad news is that each one has gotten a little bigger since my last scan on Oct 4th. The largest one increasing from 3cm to about 4cm. I was reminded that sometime things get bigger before they get smaller, and that sometimes Yervoy can take a little time to do it's thing. So I'll be getting another CT of my chest around the second week of February to better show the effectiveness of the treatment. My doctor also pointed out that all the tumors appeared.. I forget the word he used, but he was saying how they're close to perfectly spherical, like cysts or something... implying that "they're doing something". I hope it's something good, like shrinking...

And that's about it for now. As long as the SRS goes as planned, the scan three weeks from now will be most important, not sure what options I'll have available, I've heard mention of something-Antipd1 - not sure where I'd have to travel for that or if I'd be accepted. The BRAF one is an option, possibly Yervoy or NIH again depending on the results of the scan.. so we'll see when I get there. In the meantime, I'm taking good care of myself, My diet is phenomenal, most thankfully to the place I work. I'm naturally very active and continue to be. And although it tough, I'm doing my best to stay optimistic and keep my state of mind focused and worry-free. I remind myself that I commonly see people on here overcoming the the odds, and updating all of us with a post titled "Good News!". May we all be fortunate enough to do that some day. Hoping for the best.

To our health.
-Kevin

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samcanada's picture
Replies 5
Last reply 1/25/2012 - 11:50am
Replies by: dodgedh2, Gene_S, TracyP, bdhf, Janner

My husband just had his first visit with an oncologist last week during which she informed us that he has a 40% chance of recurrence.

My question is, and I know this may sound silly, does that mean that he has a 60% chance of being just fine and this being gone?

I was under the impression that is was just a matter of time before this showed up again, that it was pretty much a done deal if you will. Every story I have read seems to point to the fact that it will definately come back so I'm not sure what to believe?

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piii's picture
Replies 12
Last reply 1/25/2012 - 11:39am

Just an update – and venting. I did the one month high dose and started the year of low dose but I decided to stop today. I know the high dose was going to be tough but I could get through 1 month I just can’t go a whole year with the symptoms. They are just as bad as the high dose. My wife feels I am giving up. She is pretty mad tonight but I think she is afraid if I give up it will come back. I am not giving up – I need to feel good to start living again and not worry about cancer. I believe the positive mind is a powerful thing and I can go a whole year feeling like I do know. Anyway thanks for reading.

 

Peter

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bekahboo82's picture
Replies 4
Last reply 1/25/2012 - 1:22am

Hi everyone.  I was reading a fellow survivors blog a few minutes ago and she stated that her doctors did not want her on Birth Control Pills because of her Melanoma (Stage 1B).   This was the first I have heard of this and of course it FREAKED ME OUT since I have been on Birth Control Pills for 10+ years.  I came off of them only to have my daughter in 2009.  My Melanoma (in situ) was diagnosed in Sept. 2009, 4 months after my daughter was born.  I am under the understanding that the concensus is that pregnancy does not cause melanoma but after the furious Google session I have just had on the subject I am now not so sure.  Neither my OB or my Derm has said ANYTHING about me needing to come off the BC Pills.  I am just confused and of course FREAKING OUT.  Does anyone have any insight?

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Replies by: bruski1959

The same surgeon that removed Jackie's lymph nodes in August will be installing a port tomorrow. The port will be used for her weekly blood draws as well as the Yervoy infusions. Paperwork has been done with oncologist's office and specialty pharmacy to get the Yervoy delivered to our local cancer center. Yervoy has been requested for Thursday or Friday. Jackie will have the first Yervoy infusion Thursday or Friday if all goes well. We got a "treatment bible" from the oncologist's PA today, and have a much clearer idea of what to expect, who to call, what numbers to call etc. Her oncologist has treated melanoma before, and also has experience treating melanoma with Yervoy. Jackie also has an oncologist that has treated melanoma at the Mayo Clinic that we are working with who also is experienced treating melanoma with Yervoy.  We appreciate your feedback, your thoughts and your prayers as we take the next step in Jackie's battle with melanoma (left ring finger amputated, lymph nodes left armpit removed, lymph nodes metasteses recurred, PET scan shows melanoma in liver and lungs, liver biopsy postive for melanoma). 

Thanks,
Bruce and Jackie

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MeNDave's picture
Replies 4
Last reply 1/24/2012 - 5:45pm
Replies by: CarolA, lhaley, Phil S, samcanada

Since I have not been able to post new topics since the new CAPTCHA, I had to re-register.  Apparently there was something wrong with my original registry.  I had problems since switching over from the old system, so I am starting over.....

I just wanted to let everybody know that Dave had his first set of scans on Temodar at the end of December.  For the first time since June, he is STABLE!!!!!  Nothing has grown.  We were hoping for shrinkage, but considering how much disease spread he had while doing IL-2, he'll take it.  Nausea and fatigue are his constant companions.

He'll continue on the 42 day course of Temodar, and his next set of scans will be in February.

Best wishes to all the warriors/caregivers out there,

Maria (formerly MariaH)

Don't ever, EVER, give up!

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MeNDave's picture
Replies 1
Last reply 1/24/2012 - 5:25pm
Replies by: CarolA

Just thought I would let all of you know that Roswell Park Cancer Institute in Buffalo, NY just opened a clinical trial for those with stage IIB, III, and IV disease (both active disease, and resected for stage IV) with tumors that express the NY-ESO-1 protein.

It appears that prior adjuvant interferon is listed under exclusions, to which extent I'm not sure.  It does not seem to reuire the HLA blood typing either.  Dave has an appointment with the oncologist tomorrow, so I plan to ask more questions.

I'm not sure if the following link will work or not - but the trial is listed at www.clinicaltrials.gov.

http://www.clinicaltrials.gov/ct2/show/NCT01234012?term=melanoma+AND+Roswell&rank=12 

 

For those of you with stage II and III disease, it's nice to know that hopefully more options are coming down the pipe :)

Best wishes to all,

 

Maria

Don't ever, EVER, give up!

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Jerry from Cape Cod's picture
Replies 6
Last reply 1/24/2012 - 12:48pm

Hello all,

I just wanted to give you a very brief and I mean very brief update on my progress.  The paralysis on my right side is almost complete disappeared.  Unfortunately, I have a lot of muscle to repair and train again.  My left side has finally to everybody's amazement started to respond. 

 

Frankly, we all expected me to come out of Rehab with not much hope of left side recovery, but what was seen in the last two To three weeks has given us a tremendous amount of optimism for some decent level of left side response and return to useful status.  So when I walked to the great unknown with a lot of confidence in my rehab team and hope that my nerve pathways continue to look for alternative routing.

as far as a "Mass" in the neckwe really don't have any idea of what it is and currently what it's doing.  We have an MRI did for at least three months as I am remaining stable or improving in that area.  Depending on how you interpret the results to date.  The plans are to have updated MRIs done within the next three weeks and have a meeting with the clinical oncologists.  Shortly thereafter to review what's going on.  Because of the high dosage steroids and other meds I'm on and the fact that I'm going through active rehab with what appears to be stable, Mass. we frankly don't intend to do a thing for a while.

Due insurance restrictions.  I've moved to a smaller, but Okay Rehab facility But I was fortunate to be able to "select" two great specialiststo ensure I get the most for the time limitations and equipment shortness.

I'm trying to gather all the experiences to post in the blog and will try to have an update by the end of the week.

and most important of all, thank you all who have sent e-mails, cards, phone calls prayers and just plain kindness.  It is held so much get through this time.

Jerry from Cape Cod

note: Composing this e-mail required using the assistance of voice recognition software. I proofread diligently but find I sometimes miss errors. I'm still "training" the software but I notice capitalization, punctuation and usage problems crop up from time to time. Please let me know if you have any questions about content meaning, or questions that may have been caused by the interpretation of the software.. Thank you for your understanding.

 

 

 

 

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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"The researchers knew that a targeted therapy would kill only the tumor population, not
the fibroblasts in the tumor structure. However, the finding that fibroblasts contribute
to melanoma drug resistance was unexpected."
For the full article see: http://www.sciencedaily.com/releases/2012/01/120105131643.htm

Take care

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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