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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nickmac56's picture
Replies 12
Last reply 5/14/2013 - 6:21pm

I am of a mind that alternative treatments as varied as coffee enemas, high dose Vitamin C, turkey trot mushrooms, clinics in Mexico are bunk and a way of nefarious people preying on the fears of people with serious diseases with the objective of extracting their money. 

My wife has very advanced melanoma - at this point it is at  the deadly disease stage with the dying part not that far off. Conventional therapies have failed, as have the new wonder drugs (Yervoy). She could go through a few more very tough chemo/biological regimens, but the evidence on their success is miniscule - naybe eke out a few more months but at a hihgly copromised quality of life. Especially if she has to treat more brain mets and lose more brain function.

So her therapist suggested she look at this alternative treatment - indicated in the subject line. I haven't found anything on this board that has looked at him or his theory and found compelling evidence to stay away, as I have had with researching  other suggestions from well meaning friends.

Anyone know about this, and care to offer facts or an informed opinion based on their research? I am not interested (for the sake of all of us) in rekindling the entire alternative medical approach debate. I am just interested in this one approach and this one clinic and if anyone knows of anyplace or information nexus where I can find anything about them which has a shred of evidenced based outcomes.

thanks, Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Some are from Asco 2011...it's not a fancy website, but it's mine!

 

 

http://www.gentlewinds.org/index_files/Page2761.htm

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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MariaH's picture
Replies 3
Last reply 6/30/2011 - 5:28pm

My husband Dave and I met with the thoracic surgeon today and scheduled a bronchoscopy for Friday.  The mass seen in Dave's CT scan is multiple matted lymph nodes (the largest measuring 3.7 cm in short axis).  We were told that it is not surgically resectable.  The biopsy will reveal whether it is the melanoma coming back or possibly a lymphoma.   Regardless of what it is, it looks as though since we can't cut it out, and systematic treatment is on the horizon.  My question, though, is if it IS melanoma, do we try IL-2 first and then switch to IPI if it doesn't work?  Or has IPI shown to wipe out melanoma (not just prolong survival)?

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laneyb's picture
Replies 4
Last reply 6/30/2011 - 2:56pm

I had a melanoma on the bottom of my toe in August 2010. In September, after two positive lymph nodes, I had a complete inguinal lymph node dissection - superficial and deep. I recovered well and went on with life and interferon (another story). Though I had some swelling and numbness in the thigh, I was doing well. Then, about 4.5 months after surgery, my leg really started swelling. Sensations at first, and then size increases. I finally got in to see a lymphedema specialist, who recommended we start with compression. I wore a 30-40 mmHG, thigh high garment for about 8 weeks and went back to the doctor complaining that it only worked on my lower leg. From the knee up, the swelling got worse.

So, now I'm scheduled to see an occupational therapist to do the complete decongestive therapy. I'm looking forward to the end of that, and hope it helps. But, in some ways, the therapists seems stumped by the swelling in the thigh. Graduated compression garments don't apply as much pressure above the knee where I need it, so I'm worried that all this time and money might be for naught in the end.

Does anyone have experience with such thigh swelling? Is there a better garment than just the thigh high compression hose?

Thanks so much for any information.

laneyb

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stretch's picture
Replies 14
Last reply 7/1/2011 - 11:27pm

I AM 63 AND WAS DIAGNOSED WITH STAGE 1 MELANOMA - I HAD SURGERY EARLIER THIS MONTH AND ALL SHOULD BE OK (NEGATIVE MARGINS)

HOWEVER I AM TOTALLY STRESSED AND CONFUSED AS TO HOW TO GO ABOUT LIVING MY LIFE - IS IT OK TO BE IN THE SUN WITH UV PROTECTION CLOTHING OR AM I TO AVOID IT AT ALL COSTS?

MY HUSBAND AND I ARE ACTIVE PEOPLE WHO LOVE CANOEING, SWIMMING, ETC; WE HAVE A FAMILY REUNION IN JULY ON A LAKE IN NEW HAMPSHIRE AND I HAVE NO IDEA WHAT PRECAUTIONS ARE NEEDED (OTHER THAN THE UV CLOTHING AND LOTIONS)

I CALLED MY DERMATOLOGIST, WHO SAID I WAS NOT TO BE IN THE SUN AT ALL!!! THAT SEEMS CRAZY (IMPOSSIBLE!) AND I AM HOPING TO GET MORE CLARIFICATION BEFORE I RESORT TO LIVING MY LIFE IN A CAVE

THANK YOU ALL IN ADVANCE FOR ANY ADVICE/SUGGESTIONS/CLARITY YOU CAN PROVIDE!

 

CAROL

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NancyGM's picture
Replies 6
Last reply 6/30/2011 - 10:53am
Replies by: LynnLuc, Vermont_Donna, Anonymous, boot2aboot, djpayn

I just got word after having a hearing with a disability hearing officer, which was the first step in the appeal process. I was well prepared and presented phsical therapy records, medical records and  letters from doctor and  employer.  I had gone back to work part time at job where I earned under the limit of $900 per month. I recently left this job stating that I felt I still had residual effects ( i.e. fatigue and shoulder issues after lymph node disection) and because my immune system seems to be compromised as I constantly caught viruses from the young children I worked with.

My docto'rs letter stated my life could turn around at any time. The reviewing doctor's advisory opinion was that "fatigue post chemotherapy would limit claimant's physical function to lighter work". The work  I have always done, as a preschool teacher is described as light work in the Dictionary of Occupational Titles.

I even brought up a case precedent that was set in August of 2010 when a judge ruled in district court that cancer is a disability under the American's with Disabilities Act Amendment Act even if it is in remission [Hoffman vs. Carefirst of Fort Wayne, 2010 U.S. District Lexis 90879, 8/31/2010 no. 1: 09-CV-251 ]. She did not comment on this.

Next step is to wait up to 9 months for my hearing with an administative judge. I will be able to keep medicare and SSDI because I filled out a form- which one must ask for-to continue benefits. I need to find an attorney who is willing to take on this case probono since I would not be getting a lump sum should I win.

So, please be warned going back to work can be used against you when your disability is reviewed a the 3 years "free of neoplastic disease" mark. By that time one is considered medically improved under their guidelines.

NancyGM

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Lisa13's picture
Replies 13
Last reply 6/30/2011 - 11:28pm

There is so much talk about all these wonderful new treatments for BRAF positive people.  Don't get me wrong, I'm extremely happy for everyone who will benefit from these drugs - they've come a long way!  That being said, what about the rest of us?  Is research now heading into the direction of the wild types?  I got so excited about the new vervemurafenib drug until I found out it was only for BRAF positive people. I truly hope that they find something for the rest of us so that we too can get excited about something.

I asked my surgical oncologist to test my tumour for all mutations so that I could be prepared going forward.  I'm happy I signed my tumour over to the lab for TIL testing because that could be an option in another 6 months.

I'm so thankful for all these breakthoroughs. I do believe that survival stats will double within the next 5 years.

Best of luck!

Lisa - Stage 4

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

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Lauradunc's picture
Replies 5
Last reply 7/13/2011 - 6:14pm
Replies by: Anonymous, jimjoeb, Lauradunc, Carol Taylor, FormerCaregiver

Hi All~

   I am new to this board.  I myself do not have melanoma, however my mom does.  She is currently Stage 4 with a mets to her lung and adrenal gland.  She was diagnosed in 2008 with stage 3b.  Went a whole year with no evident disease and in September of 2009 melanoma popped up in her lymph nodes in her left armpit.  It felt like she had surgery after surgery and we were always keeping up on getting them out.  One year later, August 2010 we found out it had gone to the lung or the bronchial tube.  She looks amazing and is clinically doing excellent!  We took a trip to LA to meet with Dr. O'day...what an amazing man!  He told us what his thoughts were. So, we headed back to Northern CA where we went to Dr. Wang at CPMC.  He also is an amazing dr, very knowledgeable! There we were able to get on IPI when it was compassionate.  She completed 4 rounds, and had a PEt scan.  The results were mixed.  most tumors responded with a few new ones popping up.  Dr Wang said that is very normal.  He said she needed another round.  So, we go this week for our fourth session.  She is still handling it pretty well.  she has been more tired this round and has actually had fevers. She has one nodule on her right side that feels like it has grown but doesn't feel as hard as before. Other than that no real symptoms. 

   So, my question for all of you who are on IPI or Yervoy, or have completed it, what were your symptoms? How did you tolerate it? Also, I am wondering what people recommend to do other than traditional medicine.  Like alternative treatments, vitamins, herbal stuff?  Any help would be appreciated. 

    We are trying to keep our spirits up and keep trusting in the Lord! 

     Thanks for you help,

             Laura (Mom is Stage 4)

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wgalinat's picture
Replies 6
Last reply 6/30/2011 - 4:49pm

Hi all. It's Warren G. As some of you know I moved from South Florida this year to be around my sons new "girlie cuties" out here in Las Vegas. They are four ( on July 4th ) and two now. Time moves quickly when you are having fun. It's important to keep fun in your life though I understand it's difficult often to think about with what we all have been through, and heard, and seen up close and very personal.
After my NIH trial five years ago I have continued to grow and have cut off various carcinomas over the years. I am not sure why they love me so much. I wear a hat always now and lots of sun screen. I've read that they may be certainly tied to radiation exposure and lord knows I've had tons of that. Any who, I came down with Merkel cell recently. Heard of it ? Probably not. Super rare and most docs have never ever seen it in person. It's like melanoma in that it's a very fast moving cancer and of course dangerous. So it was on the top of my head and before I could get the surgery scheduled here in Vegas it did progress some. I was admitted into the hospital and had a large halo cut out deep and wide. Then they took a skin graft about four inches by three inches out of my right hip and put it on my head. The bad news is I think my dreams of a big time movie screen career are probably over , well at almost sixty years old now they never came anyway, the good news is it was all eliminated ( hopefully for good but we have all been down these roads before ). So life continues and we plow ahead. Try to have some fun, and I hope the best for everyone !!! DONT EVER GIVE UP !!! Warren G

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research)

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Jeff's Mom's picture
Replies 2
Last reply 6/29/2011 - 9:32am
Replies by: Carol Taylor, lhaley

We got some good news - Jeff is NED!!  PET and CT - CLEAR!!  Brain MRI - CLEAR!!!

High dose Interferon is done - YEAH!!  It was tough, but he did it!!

He just finished radiation and suffered some awful side effects (sore throat, thrush and blisters), but he is on the mend.

He's going to try to do the low-dose Interefon regime...not sure if he'll continue because the side effects have been pretty awful (fevers of 103 and all night chills and rigors).  He's going to try, though.  I tell you, such bravery and courage in the face of this - he's an amazing young man (and I'm not just saying that because he is my kid)!! 

If he can't continue the low-dose IF, he'll try Leukine (Mayo's suggestion).

Right now we feel so blessed - he is NED!!!

I read this forum every day and pray constantly for all the warriors out there.

Jeff's MOM

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awg's picture
Replies 4
Last reply 6/30/2011 - 12:40am

Hello,

 

I will be seeing my Onc on 7/1/11 to discuss treatment options for my stage III mel. 

I know interferon will be discussed, peg vs high dose.

 

What are some key questions I should ask of my onc with regards to treatment options?

 

 

Thank you,

 

Allen

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The National Cancer Institute at the NIH just told me my wife is ineligible for any trial there. Ever. Their reason was not that there was evidence of active brain mets, or that we had to wait three months from the last brain met treatment. It was that my wife's brain tumors bled (requiring the craniotomy and Cyberknife) and she suffered a seizure as a result of the brain irritation from the Cyberknife. "The seizures make her ineligible".

I think we all know how terrible it is to have this disease and it's metastatic. It's worse if you have brain mets because you are excluded from any clinical trials that I can find, unless you are BRAF positive (which my wife is not). So the hope is that your brain is at least free of disease for long enough after a particular brain met treatment that you can slide into a clinical trial - like the adaptive cell therapy and andeslukin combo. 

If anyone knows of any clinical trial that does not have brain met exclusions or this new "no seizure clause" I'd love to know about it. 

And for anyone getting Cyberknife or any other form of brain radiation, be sure to get on sufficient anti-seizure meds (not just steroids) prior to and well after the treatment. Because then at least if you are clear for a period of time you at least have a shot at an NCI clinical trial.

We are of course devastated by this news.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Janner's picture
Replies 2
Last reply 6/28/2011 - 8:30pm
Replies by: LynnLuc

Not sure how much I like this or not as I doubt two of my melanomas would have been of concern - but it is worth being a conversation piece at least.  If it makes even one person more aware and sends them to a derm, it's probably worth it!

http://eu.techcrunch.com/2011/06/27/check-your-skin-for-a-melanoma-yes-theres-an-app-for-that-too/

http://www.MelanomaResources.info

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StevenK's picture
Replies 26
Last reply 6/10/2012 - 2:45am

My oncologist told me I have a decision to make. My depth is .6mm, but it is Clarks Level IV. It was excised with clear margins all around, but he says there is a 2% chance it has spread to my lymph nodes. A Sentinel Node Biopsy is the only way to know that for sure. It seems like a pretty large procedure to do when there is a 98% chance that it wont be of any benefit. I hate to admit that the size of the scar that it will leave me on my face and neck is a factor for me. To be honest, if it was anywhere else besides my face, I wouldn't have such a dilemna.

My oncologist told me that he himself would not get the procedure done if he was in my shoes. He said that 98% is pretty good odds. He did offer me as an intermediary procedure an ultasound, but he said that's not nearly as reliable as an SNB. I know that I'm lucky to be dealing with the kind of odds that I am. I'm deeply thankful for that. I'm leaning towards the ultrasound and so is my sister, who has been wonderfully supportive. May I ask... if you were were in my situation before, what did you do and why?   

Much thanks, Steve

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TracyLee's picture
Replies 12
Last reply 6/30/2011 - 12:47am

Hi Y'all,

About 1.5 weeks since my second ipi transfusion.

I'm suddenly seeing painful, swollen nodes on the "good" side.

Anyone else experienced anything similar? I have been trying to cheerlead myself that it is just ipi doing it's slash/kill of cancer cells, but I'm a bit down right this minute.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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