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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FYI..  It looks like it will be an interesting day... Jerry from Cape Cod

Call to Action Conference, Saturday, March 19, 10-2, MIT Endicott House, Dedham, MA

Did you know that 750,000 people are living with melanoma in this country and another 4 million first degree relatives are touched by this disease? Can you just imagine the impact of patients, survivors and relatives moving out into their communities, sharing their stories and delivering life saving messages about the importance of prevention and early detection? How empowering to those whose lives are forever changed with melanoma and how life changing is the message when someone is diagnosed early and cured of melanoma.

MFNE is having their first "Call to Action Conference on Saturday, March 19 from 10 - 2 at the MIT Endicott House in Dedham. 

Hosted by MFNE Executive Director Deb Girard, and Alan Geller, chair of the Foundation’s Medical Advisory Board, the conference will cover the following:

▪    If you are a melanoma survivor at any stage, a family member or have lost a loved one from melanoma, you can make a difference by sharing your story and delivering the important message about early detection and prevention to your community

▪    You can become part of our legislative initiative to ban indoor tanning

▪    Strategies and hands-on learning will be provided to help you create powerful presentations that communicate your passion about the importance of reducing the risk of melanoma

This is an opportunity to find out how to make your voice heard and network with others who share your passion.
 

Pre-registration is required.  You can register by emailing Deb Girard at dgirard@mfne.org

Feel free to contact Deb with any questions or concerns at 800.557.6352 or dgirard@mfne.org.

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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mom3girlsFL's picture
Replies 2
Last reply 3/16/2011 - 10:15am
Replies by: Lisa13, RMcLegal

Does the amout of nodes involved affect the progression and prognosis?  I've had two groin surgeries - 1st 9/11 nodes were melanoma and 2nd 4/5 were melanoma.  I had a clear PET in nov 2010 after discovering the recurrence in september (PET) while on interferon.  Guess I'm just working myself into a frenzy before my oncology appt on Monday and knowing another scan is around the corner!

Thanks for your help. Laurie

Do not fear tomorrow, God is already there.

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RMcLegal's picture
Replies 3
Last reply 3/5/2011 - 4:16am
Replies by: Fen, RMcLegal, Erica A

Has anyone else felt like their brain was hijacked during chemotherapy, taken for a long joyride, and later returned with some dings and dents?   I underwent biochemotherapy treatments (a combo of interferon, interleukin-2, dacarbazine, vinblastin, and cisplatin) in 2003 following a Stage IIIc diagnosis.  I've blogged a bit about my lingering "chemo brain" challenges at www.hotelmelanoma.blogspot.com.   I'd love to hear from others who've experienced similar "challenges" and read your stories about the challenges you've experienced and how you try to manage them.  Thanks, and best wishes.

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Replies by: Rocklove, jbergman

Hello Everyone,

Bernhard just completed his second round of leukine on March 1.  A blood test taken to monitor his potassium level (high) showed something new = a creatinine level of 5.85; it was 1.3 January 19, before he started round one of leukine.  This creatinine level indicates possible kidney failure, B is in the hospital now getting the kidneys hydrated, and the condition reversed, we hope.  All doctors have stopped the two medications B has taken for years for hypertension and the next round of leukine may be delayed until more is known. 

So, does anyone have any experience with leukine and either of these two drugs, Lisinopril/Zestril, or Hydrochlorothiazid?  The doctors are stumped.

Thanks for any advice, experiences.

Julia

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Bob Hilley's picture
Replies 8
Last reply 3/9/2011 - 3:54pm

I'm new here in terms of posting but have checked the site off and on since I was first diagnosed in 2000.  I won't go into all the details because I have fairly specific issue that I would like help with.  My MM was in my left leg and when another showed up not so far away from the primary, I got to be part of an isolated limb perfusion clinical trial at MD Anderson.  That went well and I was NED for three more years with a couple of sub-q's and some sarcoid tissue over the next few years---but no organ involvement until recently.  The doctors did an endoscopy because of some gastric problems.  The visual showed masses of anomolous tissue while the biopsy confirmed melanoma.  I had a PET last week.  The PET radiologist says that the scan shows involvement of the duodenum.  My surgical oncologist's interpretation is that there is a 6x7-cm mass between my duodenum and liver with infiltration into both.  Because of the nerves and blood vessels in the area, he has declared it inoperable until it can be reduced with radiation. 

I met with two radiologists today.  One said that he wouldn't risk doing radiation because of the likelihood of damaging the liver.  The other wants to start radiation and chemo next Tuesday.  So some doctors say surgery is inoperable and others say radiation is too dangerous.

My interest is in getting additional opinions about these and other options--especially any experiences with surgeons who may not be so quick to declare a tumor inoperable.

Thanks.

Bob

 

 

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Jim M.'s picture
Replies 11
Last reply 3/5/2011 - 9:17pm

Hi everyone,

 This has been one of those weird rollercoaster weeks (2 weeks) for medical appts. First something suspicious appeared in the ileum, the end of the small intestine. Then I did the small bowel follow though. I drank the barium contrast and had x-rays of that area. Nothing appeared. It was completely normal and the radiology doc. showed and explained the x-rays to me. I thought maybe this would be satisfactory to Dr. Weber. Wrong! He said sometimes masses hide in the walls of the intestine and also hide due to the folds in the intestine. He mentioned intussuseption is possible. I read that's when one bowel slides into the other. Apparently the small bowel follow through isn't fool proof.

 The next step is a PET Scan which should give a difinitive answer. I'm scheduled for the scan this Wed. early in the morning. I'm glad Dr. Weber is being proactive. I got permission th discontinue Alendronate as the bloating, and abdominal pain are side effects of this drug.

 I 'd appreciate  your prayers. I will post when I know something.

 God Bless to all,

 Jim M.

 Stage 3C

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KRob's picture
Replies 1
Last reply 3/3/2011 - 11:34pm
Replies by: amberhulin

After reading the report on the study by the Wellcome Trust Sanger Institute on genome sequencing in melanoma, I was wondering if anyone on this board has been part of the study and had their genomes and melanoma mutations sequenced.

I know genome sequencing is expensive, but they article indicated that there is an ongoing effort to establish further studies of genome sequencing.

 

Thanks,

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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dawn dion's picture
Replies 14
Last reply 5/20/2011 - 10:03pm

After a verrrry long 10 weeks of PET scans, biopsies, CT's, MRI's, ECHO's, EKG's and many blood draws I am finally starting my new trial.  After having ipi fail me and testing positive for a gene change (much to the excitement of my Dr.  - still not sure how excited I am) I now start  the B-RAF/MEK combo.   Here's hoping that it works because I am really tired of being poked and prodded.    I swear I don't know how some of you stay sane! :)  I know why you do it - believe me I get it, but sometimes this process really pisses me off.  So I'm putting on my big girl undies and do what I have to do win this war!  

Now enough of my whining - Any input from anyone who is on the B-RAF/MEK - I would love to hear from you.   Many of you out there have posted amazing stories on this forum and might I say THANK YOU!   It really makes it easier to live in this world  when you know you are not the only one out there fighting the fight and surviving all the odds.  It's a impressive bunch.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Ohdearjessica's picture
Replies 9
Last reply 3/3/2011 - 8:42pm

I can breathe again until the next scan!

 

I got a prescription for soma for my shoulder/neck pains. Has anyone tried this before? I am uninsured so I have to figure out how much it will cost me

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Hi folks,

I didn't go, but I thought I would post the link the the Melanoma Conference that was held at UNC on 2/24/2011.  The first link is just photographs -- not much information:

http://unclineberger.org/news/2011/release02241/

The second link is to a powerpoint presentation on staging, which might be of use to some of you.

http://www.med.unc.edu/cme/events/third-annual-unc-conference-on-melanoma

Best wishes to everyone!

ellen

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/4/2011 - 2:03pm
Replies by: Anonymous, KatyWI, Laurie from maine, DebbieH, lhaley

Hi Everyone,

 

I am new here so this is my first post. I am stage 3 & have had a few surgeries to remove recurrence oin my leg.

I am now facing another surgery on my thigh (3rd sugery at same area). The suregeon tells me the tumor has grown down into the muscle & he will have  cut muscle out to try to get clear margins.

I would appreciate any feedback from others who have had surgery that cut out muscle. What is the recovery period ?, any long term side effects of cutting muscle out.? Pain? etc.

Thank you for your time & any comments are sincerely appreciated.

Thanks,

Amy

 

 

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This is some new info about how melanomas often develop resistance to the B-RAF kinase inhibitor PLX4032:

http://www.nature.com/nature/journal/v468/n7326/full/nature09626.html

 

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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vickirs's picture
Replies 41
Last reply 5/21/2012 - 6:35pm

Dr Rene Gonzalez has opened thie study at univ of colorado.  After failing many trials including compasionate us ipi, i am finally responding to something.  2 weeks ago i was told i had about 2 months to live.  I started this trial then instead of hospice and there is already a noticable improvement.  I lost 13 pounds in fluid wait above my liver and down my right leg.  I started readintg again after months of not being able to.  my upper abdonan no loner feels 10 months pregnat.  when dr gonzalez felt aound today he can tell there is definately shrinkage going on.  It doesn't matter if you are BRAF or not.  I am not BRAF.  And it is as simple as taking pills once a day. Uf any buddy else is on this trial let me know.  up unti know there have only been about 50 people on this study but with such great results they are expanding the the trial.   This definately brings new hope to me.

melanoma is a word...not a sentence

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Amy K's picture
Replies 8
Last reply 3/5/2011 - 11:16am

Hi Everyone, 

First of all, let me say thank you to you all for the posts and comments on this board!  It has been a wonderful support to me as we've dealt with this awful disease.  It is nice to hear from others going through similar things.  Sorry we all have to meet on this page though.  :)

My husband was stage 3 in 2002 (we found this out a couple weeks after we got engaged), did interferon high dose 6 weeks, low dose 11 months.  We did great for 8 years. We have 3 young, wonderful children. 3 months after our third was born, BOOM this cancer came back and we're now at stage 4.  We were shocked it came back 8 years later.  (We had thought we had made it past 5 years, and thought  there was a low chance it would come back, and we weren't in that low percentile.)  It came back last August and we entered the Roche BRAF inhibitor  BRIM trial.  We were disappointed we got  the chemo instead of the pill, but after 6 months of dacarbazine, the tumors are gone (all 35)!  We are now so happy that we are NED.   

There's one problem my husband is still dealing with.  I wondered if anyone had anything similar or knew of anyone like this.  So, in July of last year he noticed his lymph nodes enlgarged and his eye was bothering him.  The lymph nodes were melanoma and we have done lots of scans of his eye and no cancer is shown in the eye.  However, he's had 2 eye surgeries to fix the glaucoma and then recently to reattach the retina.  His eye is not doing well.  We have heard of auto-immune response to chemo or IL2, but his eye started going bad before we were on any treatments.  Just recently they tested the vitreous (the fluid) of the eye for cancer and came back negative!  Great news.  But, we're still tyring to figure out what is wrong with the eye.  We've gone to several doctors and no one knows the cause and his eye is causing him lots of pain and annonyance.   A couple doctors are suggesting enucleating (removing) the eye.  We're trying to wait and not do that right now.  Any thoughts?

Another question I had.  So, we are so happy the cancer is gone.  Dacarbazine was awful and my tough husband endured that for 6 months even though he kept saying I don't want to do that again after/during each cycle.  We are so glad to be done with chemo.  We know chemo isn't a cure for melanoma.  The doctors expect it to come back but it's just a matter of when.  The doctor said it could be 2 months, and he thought really hard of a case where it didn't come back for 18 months.  We are thrilled chemo has worked so well for us and wondering if any of you have had experiences to how long it can keep the tumors from coming back.  

We are still on the BRIM trial and we can get the BRAF inhibitor drug if (when) it comes back.  We also wonder if IPI would be a better choice.  Although if we did IPI next we couldn't get back on the trial for BRAF inhibitor.  So, I guess BRAF should be first while we can get it and then do IPI.  Let me know if that sounds right to all of you who have dealt with IPI or the Roche drug more than us.  

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RMcLegal's picture
Replies 2
Last reply 3/3/2011 - 10:11am
Replies by: RMcLegal, mom3girlsFL

I'm a very lucky seven-plus year survivor, healthy and NED, after a diagnosis of Stage IIIc melanoma in 2003.  I read the posts of much younger patients, so often with young kids, who are struggling with my diagnosis, or worse, and it just pisses me off that they have to face this trial.  (Excuse my language, please.)  My heart goes out to everyone who is struggling with this beastly disease.  I don't have a clue why I've been so fortunate and so many others have not.  So, all I can do is blog about the lighter side of my journey at www.hotelmelanoma.blogspot.com and hope it provides a few smiles and a bit of encouragement.  Best wishes to you all.

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