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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JPost's picture
Replies 6
Last reply 7/6/2011 - 10:34pm
Replies by: JPost, Lisa13, nicoli, Jenjen, Janner

Wondering if anyone knows if there are specific characteristics that distinguish clearly between the two (dermatofibroma vs. Nodular Melanoma)?  I have a history of several dysplatic (i call them my "crazy moles"!) removed in last 5 years, with the worst one on my back which came back as Melanoma In Situ...no problems in last 3 years, then recently (in last 2 months) a new "growth" on my right shin emerged.  I'm having it removed/biopsy in a couple of weeks....it's growing, sort of tan color, like a mole, but raised....is/are there any specific characteristics that tell these 2 apart from visual appearance?  thx!

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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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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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Hi everyone a good friend of mine was diagnosed last year with stage 3a melanoma he decided not to do interferon did lymph node dissection and all nodes clean only micro amount in sentinel node. He has been getting CT chest every 3 months and it was clear in march. Just this past week he had a CT chest scan that revealed he has a 2.5th metastatic mass in his right lung. He is having PET scan and MRI head to make sure it's not anywhere else. Could any of u please tell me what the next steps usually are if this is the only metastaic lesion. Do they usually take a wedge segment out of the lung? And what treatments have u don't that has worked or responded to? Thanks so much!!!!!! It's crazy we both work together and have both been dealing with melanoma. He is 32 btw and I'm 29 diagnosed at age 24.

Thanks
Alicia NED stage 3 with 3 primaries

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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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Wondering if anyone knows if there are specific characteristics that distinguish clearly between the two (dermatofibroma vs. Nodular Melanoma)?  I have a history of several dysplatic (i call them my "crazy moles"!) removed in last 5 years, with the worst one on my back which came back as Melanoma In Situ...no problems in last 3 years, then recently (in last 2 months) a new "growth" on my right shin emerged.  I'm having it removed/biopsy in a couple of weeks....it's growing, sort of tan color, like a mole, but raised....is/are there any specific characteristics that tell these 2 apart from visual appearance?  thx!

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clairemharvey's picture
Replies 3
Last reply 7/5/2011 - 7:24pm
Replies by: Janner, clairemharvey

Hi all! Just got the results back from a shave biopsy. They are .6, clarks II/III nodular melanoma. I got a copy of the pathology report and there is no description of the margins. None whatsoever. No lateral or vertical margins mentioned. I'm scheduled for a WLE tomorrow and I am not sure how I feel about doing this yet. How can I be confident in the .6mm without knowing that the margins are clear? I hear these shave biopsies can be innaccurate. Any advice? Thanks...

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Terra's picture
Replies 1
Last reply 7/5/2011 - 12:21pm
Replies by: claudia-uk
Below is an article from OncologyStat.  This is the trial my husbnad, Derek, started 3 weeks ago.  He has a PET next week which will hopefully show something good - then scans at the end of the second month (28 day cycles) that they use will use to compare with the pretrial scans.  He is feeling pretty good, lots of anxiety and tension and I think fear, but side effects generally speaking have been a rash on his face that has been kept pretty much in control.  He has kept up with his pain meds but is going longer inbetween and missed one yesterday and didn't seem to feel the pressure in his sides from two of the larger tumours. 
 
 
 
 
Anti-MEK-PI3K Drug Combination Reduces Lesions in Solid Tumors
 
Elsevier Global Medical News. 2011 Apr 11, S Worcester ORLANDO (EGMN) -
 
Combined treatment using compounds that block two interacting and frequently mutated cancer pathways was safe and well tolerated, and demonstrated antitumor activity in a phase Ib dose-escalation study of patients with advanced solid tumors. Such combined approaches to cancer treatment are "likely the future of targeted therapy in cancer medicine," Dr. Johanna C. Bendell said at the annual meeting of the American Association for Cancer Research, where she presented early data from the ongoing study.
 
The two drugs tested by Dr. Bendell and her colleagues were:
 
• GDC-0973, a novel, potent selective MEK 1/2 inhibitor that targets the RAS/RAF/MEK/ERK signaling pathway.
 
• GDC-0941, a novel, potent, highly specific class I PI3K inhibitor that targets the PI3K/PTEN/AKT signaling pathway.
 
Both pathways are deregulated in multiple tumor types, and both agents have been shown in phase I trials to have suitable tolerability and pharmacokinetic properties. In preclinical models, concurrent administration of these agents showed improved efficacy, compared with the efficacy of either agent when administered alone, said Dr. Bendell, director of gastrointestinal oncology research and associate director of the drug development unit at the Sarah Cannon Research Institute in Nashville, Tenn.
 
In the current study, the combination was generally well tolerated in 30 patients who were treated on a once-daily 21-days-on/7-days-off schedule. The most common side effects were diarrhea (occurring in 90% of patients), fatigue (in 61%), nausea (in 61%), rash (in 50%), vomiting (in 33%), decreased appetite (in 17%), and taste changes (in 17%), but the vast majority were mild and did not differ from the adverse events seen in single-agent trials.
 
Furthermore, the pharmacokinetics of each agent did not appear to be altered by combined administration.
 
Six of 15 patients who underwent serial positron emission tomography at drug peak and trough concentrations showed a partial metabolic response to treatment, with at least a 20% decrease in the mean percent change from the baseline maximal standardized uptake value (SUVmax) at one or more time points.
 
Decreases in target lesions measurable by Response Evaluation Criteria in Solid Tumors (RECIST) occurred in five patients, including one melanoma patient with a wild-type BRAF(75% decrease), one melanoma patient with a BRAF mutation (27% decrease), one prostate cancer patient (21% decrease), and two non-small-cell lung cancer (NSCLC) patients with KRAS mutations (18% and 13% decreases). Four patients (two with NSCLC and two with melanoma) had stable disease for at least 6 months, Dr. Bendell said.
 
Dose escalation in this study was achieved using a unique 3+3 schema that allowed for increased dosing of each agent individually. Dosing began at two dose levels down from the maximum tolerated dose of each agent (20 mg and 80 mg daily of GDC-0973 and GDC-0941, respectively, in the first cohort), with dose increases in one drug at a time in consecutive cohorts. At the time of Dr. Bendell's presentation, dosing had reached the level at which drug activity had previously been seen in the individual drug studies, and dose escalation was ongoing to determine the maximum tolerable doses.
 
"Combining these agents is a very exciting thing for us in treating patients with cancer with targeted therapies," Dr. Bendell said, explaining that blocking two of the most commonly abnormal pathways in cancer cells has the potential to block each pathway individually as well as to prevent the "cross talk" between the pathways, which can lead to primary or acquired resistance to single-agent single-pathway therapy.
 
Seen within these pathways are mutations that cause upregulation leading to cancer cell proliferation, survival, invasiveness, and enhanced metabolism. Additionally, these pathways are downstream of many validated oncology drug targets including HER2, endothelial growth factor receptor, and KIT, she explained.
 
A particularly promising finding is the tolerability of therapy; there was concern that blocking two pathways instead of one would make treatment too toxic for patients, but that doesn't appear to be the case. "We're very pleased to find that we could do it safely - and with antitumor activity," she said.
 
As for whether this combined treatment approach represents the "elusive anti-RAS therapy" that researchers have been seeking for 3 decades, Channing J. Der, Ph.D., of Lineberger Comprehensive Cancer Center, Chapel Hill, N.C., the discussant for Dr. Bendell's presentation, expressed skepticism.
 
Although this is a very promising study that adds to the available evidence supporting a combined MEK-PI3K inhibition approach for RAS-mutant cancers, a great deal more work needs to be done, he said.
 
"We've been here many times before with promising and exciting preclinical studies only to be disappointed when we get to clinic ... so I believe the search for the elusive RAS inhibitor will probably continue.
 
"I hope I am wrong," he said. Genentech sponsored the study. Dr. Bendell said she had no relevant financial disclosures. Dr. Der disclosed relationships with GlaxoSmithKline, Millipore, Bristol-Myers Squibb, and Sanofi-Aventis.

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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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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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jimjoeb's picture
Replies 10
Last reply 7/4/2011 - 10:48pm

Well I met with the oncologist today. I am offered two options:
a) monitoring and follow up
b) standard interferon protocol
There is a possibility of the ipi trial at McGill for which I may be eligible. I need to learn about ipi, its benefits and side effects. ùmy oncologist would refer me there if I am interested.

Does anyone have info on trails for the use of ipi for prevetion of recurrence in stage III and the side effects and benefits

I need to let him know next week. If I choose the interferon it would commence as soon as I am deemed to be healed from my most recent surgery.

I intend to think it through but at this point, I see myself declining the interferon treatment and proceeding with the monitoring approach by the cancer treatment team and keep my eyes open for interesting trials. I will support the monitoring by the cancer centre with my own monitoring, my dermatologist's and that of my family doctor. In addition, I will be supported by my naturopathic doctor.

I am a very healthy person who looks after herself from both a nutritional and fitness perspective. I goes against my nature to take something that would both in the short and long term damage my overall health in hopes of delaying the chance of recurrance by a few months. I have the additional anxiety of being at high risk for breast cancer. I am closely monitored for that as well. My heart says stay strong and watch for a better medical treatment.

I welcome any thoughts and experiences, particularly from those who have declined interfereon. What percentage of stage IIIa patients refuse it?

Be Not Afraid-God is with you always Stage IIIa

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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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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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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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boot2aboot's picture
Replies 11
Last reply 7/3/2011 - 11:35pm

Hi,

i just finished my localized treatment protocol to my axilla lymph gland area...i had two reoccurances since april 2011when i was diagnosed as stage 3c...i had a ct yesterday and had planned on doing my adjuvent therapy right away and now i am sitting here waiting on pet scan to confirm lung /liver...what i need from this community is ideas for my next treatment options...do you think i am nuts to consider dr wolchuk's phase one trial with ipi combos at sloan?  i know the mel i have is super aggressive...i haven't even begun any bio yet as the tumors keep popping up and the surgeons keep whacking...the onc is meeting with me later today to go over results and treatment options...i am good with treatment option for stage 3c if i am lucky today...but, stage 4 opens up a new pandora box and i will need help navigating...maybe micheal fl, charlie or valin could respond?

boots

don't back up, don't back down

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