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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Replies by: debbieVA

This Saturday, July 9th, I'm having a global, stay where you are, celebration commemorating the third anniversary of the removal of my mole, or, of I Wish I Had Listened to My Mama.

Here's Facebook link to all info.

http://www.facebook.com/event.php?eid=228256307197192

Our own Rich McDonald has rewritten my theme song "Celebration" to fit the occasion.

http://www.hotelmelanoma.blogspot.com/

Whether you sign up to attend or not, please say a prayer for melanoma research, do a full-body skin check, and if you can and will donate to melanoma research. I highlight James Jones Harley ride across the USA (he's posted that on here too) and there's a Miles for Melanoma Walk in Cary NC that same day that I also link to. All proceeds from these two events go to MRF.  Donate to the research of your choice and/or country.

Thanks.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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A board of cancer professionals determined Wed the cancer drug Avastin should no longer be authorized by the FDA for breast cancer patients. The panel claimed it was ineffective and had unsafe side effects. The Food and Drug Administration will make a final decision in July. Source for this article - A panel recommends disapproving breast cancer drug by Newsytype.com.

 

Subsequent time looking at it

This is the subsequent time a board has ruled negatively on the cancer narcotic. The group agreed that Avastin was not worth it last December. They said that cancer patients' lives wouldn't be improved or extended. A subsequent hearing was prompted by demonstrations from Roche.

In 2008, the FDA approved Avastin for breast cancer treatment. This was because it showed that it could slow cancer tumors for over five months with chemotherapy. But further studies have shown the benefit was closer to three months and the drug did not extend the life of the patient. High blood pressure, internal bleeding, holes in the stomach and other extreme side effects have been shown to occur in the narcotic.
 

Survivors were able to give testimony of it

Breast cancer survivors were there for Roche on top of the expert opinion. Roche had Survivor Patricia Howard said "I am alive today due to Avastin." "I am alive today due to Avastin," was what Patricia Howard said. She was the survivor.

Terry Kelley is the husband of a cancer patient. "Make no mistake, this hearing is a death trial, not of Avastin but of these women who rely on Avastin to say alive," he said. "You are each personally responsible for the consequences of your own vote."

The panel unanimously voted 6-0 to get to the same opinion. Natalie Compagni-Portis, a member of the panel, said, "I think all of us wanted Avastin to succeed, but the reality is that these studies did not bear out that hope."</p>

Some angry
 

After the decision was handed down, the room exploded with unfavorable reactions from the drug's supporters. Christi Turnage, of Madison, Miss., who claims her cancer has been undetectable in the two years since she has been taking the narcotic, shouted, "What do you need us to take? We have nothing else!"

It was called a kangaroo court by Steven Walker who is a spokesman for the Abigail Alliance patient advocacy group. "There wasn't one dissenting thoughts up there, let alone one dissenting vote," he said.

Not finalized yet

After July 28, FDA commissioner Margaret Hamburg will have the final say as the panel's decision may not be binding. Brain, kidney and colon cancers can all still use Avastin FDA approved. Even if it isn't approved, it can still be used for cancer treatments although the narcotic may not be covered by insurance businesses for probably the most part.

 

Information from:

 

Huffington Post
huffingtonpost.com/2011/06/28/avastin-breast-cancer-patients_n_886217.html

CNBC
cnbc.com/id/43582047

Forbes
forbes.com/feeds/ap/2011/06/29/health-health-care-us-breast-cancer-drug-fda_8541968.html

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To celebrate the 4th and encourage all to practice safe sun, I wrote some new lyrics to "Listen to The Music" by the Doobie Brothers.  Best wishes to all!

www.hotelmelanoma.blogspot.com

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Bill in Mtl's picture
Replies 8
Last reply 7/6/2011 - 10:21am

10 years ago - I was diagnosed with stage 1 melanoma, and dysplastic nevus syndrome.  10 years ago, I found MPIP and it's wonderful community of people.  I spent a great deal of time here, learing about the beast - and getting to understand what it meant to me. 

Today is my 10th year with NED status.  Stage 1A

Just wanted to say thank you to everyone here - who made it just a little easier to cope

Have a good one

Bill

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boot2aboot's picture
Replies 6
Last reply 7/7/2011 - 6:29pm

To all the stage 4 vets out there i need your help...i reposted this on suggestion of Linda...

I was initially diagnosed in April after finding a golf ball size tumor in my right armpit-stage 3c...i had surgery, 3 consults and decided on biochemo...before i could begin treatment i grew another mel in the same place...got it cut out and local radiation for 1 week then rescanned...to find 5 questionable spots in lungs and one definite mel in liver...so you see i have very aggressive mel...i am still on learning curve.

My onc suggested i start chemo on tuesday and biochemo was out of the question and IL2 put on hold until after the chemo...she said she was also considering me for a plexxon trial depending on braf results (which we are waiting on)...she wants to do 6 rounds of chemo (5 day week 6 week) and rescan and do another couple rounds  before starting me on Immunotherapy(i think i heard this right)...i am especially looking for input from Charlie, Jimmy B, MichaelFL, King...but anyone with aggressive mel and liver mel i would like to hear from...i know i can't sit on the fence long if at all, but i want to do the best thing for me and i just don't know enough....i take a lot of nutritional suppliments but do not want to compromise liver...

boots

don't back up, don't back down

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shellebrownies's picture
Replies 8
Last reply 7/6/2011 - 5:02pm

Don is 2 weeks into his second 3 week cycle. His improvement since beginning the chemo has been remarkable--one might even call it miraculous.

The palpable tumor(s) under his right arm has gone from softball sized before the chemo to 2 marbles after 1st round and last Thursday he was down to one that was the size of a chickpea. His LDH number has come down from 2375 day of 1st chemo to 539 after 1st round and down to 388 on Thursday. His pain medicine regimen has been dropped from 10mg/3xday methadone to 7.5/3xday to 5/3xday to 5/2xday. And still, with all these changes, he has not had to use any breakthrough pain meds. 

He had a 4 day period at the beginning of this 2nd round where he had some brutal vomiting, but since getting him the right meds to deal with it, his nausea has completely disappeared. He has much more energy, is eating normally. 

Don goes in on Tuesday for a brain MRI (he hasn't had one in a while) and a CT scan of his torso. We will meet with Dr. Lawrence on Thursday to discuss the results and our plan of action from there.

I have found myself at a bit of a loss. I have had kind of a difficult time switching gears from what we were facing to where we are now, and while it is almost impossible to not be hopeful in light of these changes, I do still worry about the durability of his response and just how much melanoma has really been beaten back by this treatment.

I am hopeful that the scans will prove the huge response his other actions and tess seem to indicate, but, of course, I am experiencing some serious scanxiety. Everything seems so up in the air right now...I can't wait for some kind of answers, you know?

Michelle, wife of Don

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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DeniseK's picture
Replies 5
Last reply 7/5/2011 - 9:44am

Hi All,

If your on facebook please go to  this link and like this page!  This absolutely breaks my heart!  There are alot of people on here that could offer some good advice and positive outcomes for this little girl and her family!!

Serenas fight   http://www.facebook.com/pages/Serenas-Fight/178408288887479?sk=info#!/pages/Serenas-Fight/178408288887479 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/8/2011 - 2:18pm

Hi All,

Does anyone know that if your interested in a clinical trial that is far away from you do they help pay for expenses?

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Anonymous
Replies 0

Hi All,

Does anyone know that if your interested in a clinical trial that is far away from you do they help pay for expenses?

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Lisa13's picture
Replies 8
Last reply 7/7/2011 - 1:11pm

Next Friday, I have my second session with dacarbazine and then a CT scan 10 days later. I know this form of chemo has had little benefit, but I can only hope that my low tumour burden responds to it. I'm remaining hopeful, but in the back of my mind, I have to be prepared for a Plan B. That being said, my onc. suggested ipi if the dacarbazine works, but I want to know if anyone believes IL-2 is a better option or should I leave that as Plan C?

Here's hoping I won't have to venture into Plan B.

Lisa

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

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MariaH's picture
Replies 2
Last reply 7/2/2011 - 2:41pm

Does anybody have any experience/suggestions for a good surgeon in the New York, Pennsylvania, area?  We want Dave to get a second opinion on his enlarged lymph nodes (they are large and matted) - the surgeon at Roswell won't consider removing them.  We just want to make sure that this is the right call - and for those of you who have done second opinions, how do we go about doing it and what medical records do we need?  There are so many options out there today as opposed to when he was diagnosed in 2008 - and for that, I am very thankful!!

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LynnLuc's picture
Replies 12
Last reply 7/4/2011 - 12:06pm
Replies by: kylez, nickmac56, LynnLuc, Anonymous, MariaH, nicoli

I saw this and thought to share it! Its for the B raf folks! It uses Anti PD 1 and ipi!   http://clinicaltrials.gov/show/NCT01245556

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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Anonymous's picture
Anonymous
Replies 2
Last reply 7/3/2011 - 3:03pm
Replies by: cfw9186, LynnLuc

Check out the discussion on MIF (www.melanomaforum.org)  anti PDI is more effective and has less side affects.  It is definitely going to be an exciting treatment.

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DeniseK's picture
Replies 5
Last reply 7/3/2011 - 1:08am

Hi All,

I just went to my surgeons yesterday for a check up and discussion.  He went to a tumor board on Monday and discussed my case with others.  They all agreed that my next step should be a Brain MRI and PET scan.  I'm extremely high risk of reoccurence and because of the size of tumor 14mm Breslow depth and clarks level V the cancer could have spread to other areas via the blood vessels.  He said with a tumor this size it doesn't necessarily take the lymphatic channel.  He's also referring me to the Northern California Melanoma Center in San Francisco for a consultation on what kind of treatments I should have.  This will also depend on the MRI and PET scan.  So another week of waiting!!  How long does it take to get the results of these procedures? 

OH YEAH!  I asked for xanax and I got some.  I don't really notice the effects and today was the first day taking one.  If my headaches stop then they were definately due to stress. 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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NYKaren's picture
Replies 6
Last reply 7/4/2011 - 10:11pm

I've been having rather a rough time of it.   After developing diarhhea fairly early on (1 week after first infusion), Dr. Wolchuk put me on Entocort EC.  I had a gastric bypass roughly 4 years ago, and I think that made me susseptible to gastric side-effects.  He hadn't seen anyone present with diarhhea so early (shortly after 1st infusion).  After being on the bland diet and 8 days ago having a colonoscopy that did not indicate colitis, Dr. W. took me off the Entocort.  After the colonoscopy, I just kept going and going.  The prep was the harshest I've ever taken, and I was still going for days after.  I controlled it with Immodium**, then got constipated.  Of course, I should have called Dr. W., then, but did not.  I still thought I could manage on my own.

My bypass dr. was very concerned, so on Thurs. night (after my resuming the runs and having pain) he met me at the ER, and performed an exploratory laproscopy for suspected hernias, which was negative (but still necessitated an overnight in the hospital in addition to the surgery.)    I have an upper endoscopy scheduled for Thursday at 6:00 PM (my 3rd Ipi infusion is scheduled for that day as well.)

Today I spoke w/Dr. Wolchuk and he put me back on the Entocort.  We had a very frank discussion...he told me that if the diahhrea is not controlled after 2 days on the Entocort, they  might have to go to Prednisone, and if that doesn't work, to go off the Ipi.  Needless to say, that freaked me out.  the ** next to the Immodium is because he told me that Immodium is NOT the treatment indicated for Ipi diarhhea.  The steriod is.  He told me that they want to hear from me whenever ANY possible side-effect occurs.  They want to hear from me 3 times a day, every day, if necessary.

Dr. Wolchok was one of the pioneers of Ipi, and he has a "perfect track record of managing his patients' side-effects."  Meaning, he hasn't lost anyone yet, and he doesn't want me (or anyone else) to break that record.  Of course, that means stopping the Ipi if  he feels it's necessary.  

So far today, the Entocort seems to be working, so I'm praying it doesn't progress to needing Pred.  The good thing about Entocort is that it  works only on the gut and not systemically.  If I have to go on the Pred, then my whole immune system will be affected, and the Ipi works by BOOSTING  the immune system, so it makes sense that it would compromise the effects of the Ipi.  He did tell me that  he will continue the treatments if I have to remain on Entocort and it's working, so that was comforting.  As much as I like him is how much I just don't feel connected to one of his fellows, who always says "well, we'll have to see if you'll be able to continue the treatments..."   

Sorry if this is rambling, but I've been want to post for over a week--just been too scared & depressed.  So far, only other side-effect has been mild rash/itching. This isn't easy--I'm working full time.  I only took one day off after the surgery because I've taken so much time off already for the melanoma surgery/radiation/ipi.   So, I'm very much looking forward to this 3 day weekend of doing nothing but lounging around and reading.  A Sunday night movie, which my daughter just suggested, would be a high-point.

Hope everyone has a good weekend.

Karen

Don't Stop Believing

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