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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Anonymous's picture
Replies 4
Last reply 1/31/2014 - 2:10am
Replies by: JerryfromFauq, Anonymous, tschmith
 
 
Breath test may detect signs of lung cancer: Study
Healthday // Healthday

Examining breath samples from patients with suspicious growths might help determine who needs surgery.

By -- Robert Preidt
 

x-ray of a human lung (Medioimages | Photodisc)

(HealthDay News) -- A simple breath test might reveal if a person has early-stage lung cancer, according to a new study.

Researchers tested the exhaled breath of people with suspicious lung lesions that were detected on CT scans. The breath was tested for levels of four cancer-specific substances, called "carbonyls."

The breath samples were analyzed using a special device developed at the University of Louisville.

Having elevated levels of three of the four carbonyls was predictive of lung cancer in 95 percent of patients, while having normal levels of these substances was predictive of a noncancerous growth in 80 percent of patients, the researchers found.

Elevated carbonyl levels returned to normal after lung cancer patients had surgery to remove the cancer, according to the study, which was to be presented Tuesday at the Society of Thoracic Surgeons annual meeting in Orlando, Fla.

 

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I am posting this article because melanoma can metastisize to the lungs.

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Janet Lee's picture
Replies 9
Last reply 2/9/2014 - 7:30pm
Replies by: Swanee, MoCedar, POW, Janet Lee, Anonymous

My husband Don and I have participated in a couple of research interviews designed for metastatic melanoma patients and/or caregivers. This researcher recently reached out to us because his client is looking for in-person interviewees in the NYC area in February. He has about ten slots open. If anyone is interested, please let me know (email me at leejanet4550@gmail.com) and I'll send you the contact info. They usually pay a little honorarium and seem very reputable.

Janet Lee

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frankMill's picture
Replies 6
Last reply 2/2/2014 - 10:41pm

Hi Everybody,

I was diagnosed with Stage IV in August 2013.  We all remember that dark day of diagnosis and going through the denial, fear, anger, tears, prayers, and depression.  Almost every warrior on this forum knows what it feels like to face the possibility of an early death.  It's a terrifying, dark place that we all have to wrestle with when the doctor says "I have your biopsy and the results aren't good"

What got me through the darkness?  It certainly wasn't the surgeons or oncologist at the hospital that first treated me, they gave me little hope.  What made the difference for me were the warriors on this forum.  The fighters like you who have been diagnosed before me.  You gave me hope by giving me knowledge, support and best of all...the inspiration to fight hard and not give up  Your words and posts were bright pin-points of light at the end of a very dark tunnel.

Some of us never emerge out of the darkness after the diagnosis, they give up hope and don't seek out the information or contact the best possible specialists.  Fortunately, because of you, I did start learning about Mel and sought out the best specialist I could find.  Luckily, Dr. Weber at Moffitt was close by.

I've been in the GSK Mage 3 clinical trial since last October, getting the recMage vaccine plus the Poly ic:lc booster.  While the trial resuls weren't promising on the previous stage of the Mage trial, I'm hopeful that it will be a success in my trial (it's more genetically targeted).

The good news is that I am NED!!  But I know that I may not be cancer free, my body is fighting that battle every single minute. 

For those of you coming to this forum for the first time, you have come to the right place.  These melanoma fighters rock!! I have great respect and admiration for every one on this forum.

Thank you.

Frank

 

 

 

 

 

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JerryfromFauq's picture
Replies 3
Last reply 1/30/2014 - 1:13pm
Replies by: Tamils, JerryfromFauq

 

Anybody know the identifier?

The team tested their vaccine implant in mice with melanoma. Control mice that were given implants without the vaccine material died from their cancers within 25 days. Mice that received one vaccine implant showed slower tumor growth, some tumor regression, and survived longer. Of the mice that received two vaccine implants, half completely eliminated all tumors. No other cancer vaccine to date has shown such an effective anti-tumor response.

And now, four short years later, a human trial has started. (Usually it takes about 10 years to move research from animals in labs to human patients.) It’s a Phase I trial—meaning it’s testing for safety in a small group of patients. Each participant will receive four implants over the course of four months. If this trial shows the implant is safe, further trials will be conducted on larger numbers of patients to determine its efficacy—not just in mice, but in humans.

The researchers hope that, like vaccines that confer long lasting immunity to infectious diseases, this new vaccine may endow patients with resistance that keeps the cancer from coming back. That would be an enormous breakthrough—for patients with melanoma, and perhaps for the treatment of many other cancers, too.

http://directorsblog.nih.gov/2013/09/17/personalized-cancer-vaccine-ente...

 

I'm me, not a statistic. Praying to not be one for years yet.

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Cathy's picture
Replies 10
Last reply 3/13/2014 - 8:36am

My world fell apart last week when I found out I have anal melanoma.   My colorectal surgeon ordered a PET scan and a CT, both of which I've completed.  We met last night with the multidisciplinary team at our local hospital's cancer center.  

I am so fortunate to find out that it has not spread, and I need to have a wide local excision to get clean margins.   I talked to my doctor today and she said she may possibly need to remove part of the sphincter muscle which would cause me to need a bag for the rest of my life.  I really want a second opinion, but there's not alot of specialists in this type cancer.   Surgery is scheduled for February 7.

Also, the PET scan showed a spot in the pelvic area that may or may not be the cancer in the lumph node, but the CT did not show it.  They said that if it was definitely the cancer both tests would show it.  It could just be a false positive.  Could be just part of the bowel   I will need to go back for another CT in 3 months to watch it.  

Anyone know of any specialists on the east coast?  I live in Delaware but will travel to where ever.   Johns Hopkins can't see me until February 25.   University of Pennsylvania's melanoma center referred me to a dermatologist.   I've heard about the Dana Farber center in Boston, and I have no problem flying  up there for a consult, but February 7 will be here soon.   I don't want to put off surgery as I know that this type of cancer is very aggressive.  

Anybody out there have any advice for me?  I just want to scream because I am so afraid and confused. Thanks for your help!!

Cathy

 

 

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Michelem's picture
Replies 12
Last reply 1/31/2014 - 2:57pm

My husband has now moved up to Stage IVa and will begin a course of Ipi in a week. Because they know that all the cancer was not removed from his groin area (doc says it has "radiated into surrounding tissue" and there's simply no way to be certain of getting it all surgically") they also recommend radiation. The radiation will begin about the time of the second Ipi infusion - so they'll know for sure how he's tolerating the Ipi before beginning radiation.

I'm wondering if anyone else has had this combo, and how it was tolerated?

Another concern is that our various doctors do not agree on the value of radiation. Our surgeon and radiation oncologist recommend it. Our medical oncologist is carefully neural. Next week we will see a melanoma specialist in San Francisco, and we are told that he does not recommend radiation.

Thoughts appreciated!  mm

MicheleM

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NYKaren's picture
Replies 2
Last reply 1/31/2014 - 3:13pm
Replies by: NYKaren, Anonymous
As some of you know, I'm on Tafinlar for 6 months and Menkist for 1.  I thought I was failing again, so I literally ran to Dr. Pavlick's office on Wednesday, and my scalp mets (relatively new) look better on their photo, and even better, my LDH went down considerably. Have MRI scheduled for 2/12.  My brain feels ok (no loss of speech, confusion, etc. that have accompanied prior mets.)
 
Dr. P told me about Pan-RAF yesterday, which is in a phase 1 clinical trial.  I've been researching it, and found it on clinicaltrials.gov.  The # is MLN2480.
Supposedly it's for use in BRAF+ people...I THINK they either use it alone or might take away the Menkist and add the Pan-RAF drug.  I also think it's for MEK resistance???
I said to her "well, what happens if I fail with BRAF/MEK and PD1 is still not approved; will I miss out on this trial like I did at Sloan with PD1 phase1?"  She said no, she thinks this will be around for a while.
 
anyone know anything about it?  Jerry??
 
BTW, I heard PD1 Q3 2014.  Fingers crossed!
 
Karen
 
Don't Stop Believing

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gaby's picture
Replies 8
Last reply 2/6/2014 - 8:22am

Please need support , because I am very sad.
My husband was diagnosed in 2012 stage3a melanoma , because he had micrometastasis in the sentinel node , the rest were clean. He had in 2012, 38 years old. He started in October 2012 with high doses of pegylated interferon for two months and after that continuous average dose to date. He was positive despite the side effects of pegylated interferon and was determined to complete the two years of treatment. He had from the diagnostic CT every 6 months , thank God for all normal except when some nodes increased in size , according to the doctor was normal by interferon . Last week was the result of his last TAC and are desperate because said to have focal lesions in the liver , which are new. Next week we have an appointment with the oncologist , but these days are endless waiting .... It might be the 3rd stage melanoma has gone so fast and to the liver ? God wants to be caused by interferon and not melanoma lesions.

These last months had hopes that the melanoma was not as aggressive as it only had a positive lymph node micrometastasis and clean and all the rest. As you might already left the liver ?

 

From diagnosis to live with anguish and sadness

 

Thank you all , I read you always

Gabriela  (34 years old) from Argentina

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mwcollins's picture
Replies 3
Last reply 1/31/2014 - 2:52pm

Hi all! As many of you know, my husband Kevin is set to have a small bowel resection on Tuesday. I am very hopeful form this procedure since that is the only spot that lit up on the PET scan. Even OK with the dreaded watch and wait afterwards. Now, being the dutiful wife and mother that I am I've called in reinforcements to help while Kevin is in the hospital, I have gotten the laundry done, house cleaned & anything else within my power to prepare for the surgery. What I didn't expect was a snow storm in North Carolina of 1 inch worth of snow keeping my kids home from school, a baseball lesson location to not charge me the monthly fee I had expected and want the back pay, and to top it off, the 4 year old to come down with a wicked fever! I know I can handle it all. God gives us only what we can handle with his help, but should I keep the little one away from his daddy just to be safe? I'm going to go to the pediatrician in the morning just to be on the safe side & is it too late for Kevin to get a flu shot before his surgery?

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FYI GSK has a number of patient assistance programs for eligible patients in the United States who need help affording their medicines and vaccines. Through our programs, in 2012, more than 250,000 patients received approximately 2.3 million prescriptions for GSK medicines and vaccines free of charge. GSK is committed to helping eligible patients who need Tafi...nlar and Mekinist receive therapy. In the United States, patients who qualify for the programs may benefit from GSK’s Commitment to Access program for oncology and specialty medicines which offers services and programs including co-pay assistance in addition to traditional patient assistance support. For more information, patients can call 1-8ONCOLOGY1 (1-866-265-6491).

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Replies 2
Last reply 1/31/2014 - 8:07pm
Replies by: POW, maryb-z

Have melonoma and looking for a recommendation for a good Melonoma Speciality Clinic in So. WI

I need a good derm to follow up with every 3 months as well as oncologist annually. Insurance will cover

almost anyone but UW Health physicians (Dr. Albertini)

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Get Help:1-800-4-CANCER
HD IL-2 + Vemurafenib in Patients With BRAF Mutation Positive Metastatic Melanoma
Long list of sites participating
http://www.cancer.gov/clinicaltrials/search/view?cdrid=740240&version=HealthProfessional
I'm me, not a statistic. Praying to not be one for years yet.

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http://www.ncbi.nlm.nih.gov/pubmed/20930514
 

Cancer Biol Ther. 2010 Dec 1;10(11):1091-7. Epub 2010 Dec 1.

Unsuccessful high dose IL-2 therapy followed immediately by near continuous low dose temozolomide can result in rapid durable complete and near-complete remissions in metastatic melanoma.

Abstract

Metastatic melanoma remains a disease with a very poor prognosis. High dose Interleukin-2 (HD IL-2) and temozolomide (TMZ) are both approved treatments for this malignancy but response rates remain poor. HD IL-2 is the only approved therapy that has been shown to induce durable complete responses albeit in a very small percentage of patients. The combination of TMZ followed by HD IL-2 as biochemotherapy has been studied previously but did not improve responses over what had been observed for HD IL-2 alone. In our clinical practice, we noted surprising rapid and dramatic responses to TMZ when given as therapy at 75 mg/m2 for 21 days per one month cycles in 6/9 (67%) sequentially treated patients who had just completed a full course of HD IL-2 and either had failed to respond (11%) or frankly progressed (89%). The TMZ therapy began on average within 6 weeks of stopping the IL-2. All responding patients had complete or near complete responses (CR and nearCR) to TMZ. The responses became evident rapidly, typically within 1 or 2 cycles of TMZ. Three patients remain alive and completely disease free, two are off of all therapy to date. Two patients recurred after initial CR and nearCR. One patient died from an acute myocardial infarction while in a CR. One patient had prolonged stable disease and 2 patients progressed. These were much better responses than what is typically observed for single agent TMZ; indeed, durable CR to TMZ that persists off therapy is an unrecognized phenomenon to our knowledge. TMZ is an oral atypical alkylating agent that in addition to having cytotoxic activity against melanoma has also been shown to decrease the T regulatory population of lymphocytes (T-regs). We hypothesize that the TMZ may be synergistic with HD IL-2 in a sequence-specific fashion by allowing the immune activation induced by the HD IL-2 to proceed without negative feedback applied by the T-reg population of cells whose major function is to inhibit an exuberant immune response. This postulated mechanism would result in the sequence-specific activity noted in our patients. Of interest, 3/6 responding patients and 1/3 stable/ non-responding patients also exhibited persistent polyarthralgias that began on TMZ suggesting the induction of autoimmunity which may be related to anti-melanoma effects. The durable CRs that persist after the cessation of treatment suggest that this sequence-specific combination should be studied further, ideally in a prospective trial of repeated courses of HD IL-2 followed strategically by continuous TMZ.

PMID:
20930514
[PubMed - indexed for MEDLINE]
 

Free full text

I'm me, not a statistic. Praying to not be one for years yet.

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Nadia's picture
Replies 6
Last reply 2/2/2014 - 1:23am
My husband, Dave, is Stage IV, dx in August 2013, and, of course, was told he has 8 months to live.  He was accepted in the Phase III, three arm double blinded Nivo+ipi, nivo, ipi, and he had the first IV on November 1st 2013.   The CT scan (Jan. 28) didn't bring us the good news we were hoping for.  Just to keep it short, some tumours decreased, some tumours increased.  No new tumours were seen.  The preliminary report shows close to 20% progression in the tumour load.  The biggest increase was noted on the liver tumour, and on the lungs nodules. Despite this, Dave feels great, energy levels are high, just like before the treatment started.  All his blood tests are normal, including the liver enzymes.  The LDH is 138 and it's been around this value since the beginning.
 
We are still part of the Trial, as Dr. strongly feels there is still a chance Dave can benefit from the trial. He is receiving an IV every two weeks, for the next six weeks, at what point he is getting scanned again.
 
My hopes are:
1. There were almost three weeks in between the base line scan and the start of the trial.  There is a very good chance the tumours grew fast in this time frame and actually, although the numbers don't reflect it, his tumours are stable in size or even a little smaller.
2. He is a slow responder to medication, and maybe the treatment will kick in soon.
 
I kept track of all the side effects he had, and he had a lot.  None of the side effects sent him to the hospital.  The only drug he took  was Reactine, 2/day, to deal with his skin rashes and itchiness. 
 
At some point I was sure he is on the combo arm (nivo plus ipi).  And then I thought he’s on nivo, and then on ipi only.  To tell you the truth...I have no idea.  I would almost prefer he was on nivo only, because that means ipi is still an option.  But if he was on the combo arm or on ipi only, well, pd1 is not available for him as a follow up.  He is BRaf positive (V600E).
 
We are very positive people, we are going to fight this with all it takes.  We are not giving up, we have an amazing life and we have all the reasons in the world to fight our fight.
I don't know how other people deal with the reality of this disease, but I am not listening to motivational tapes, or read positive and uplifting messages from the internet.  All I do in all my spare time is research, reading articles, links, blogs, fb, forums, all melanoma related.
 
 I hope from the bottom of my heart the scan in 6 weeks will show either stable or a decrease in the tumour load.  
But if there is progression, and he was on ipi, what Plan B, Plan C, and Plan D look like?
It seems the options would be:
•  Tafinlar and MEK.  That, of course if this gets approved as standard care for Braf positive patients.
-  TIL, either at NIH, Moffit, or MD Anderson
-  Vemurafenib (Zelboraf)) 
 
Now I need help from everybody involved in any of the above, or they know somebody that knows somebody:  please, let me know 
- Is there any other treatment option that in your opinion would work as well and I missed?
- what worked for you from the options listed above?
- based on what you know from your experience, or somebody else's, in what order would you do the treatments above?
 
Thank you very much for your patience and for your input.   As I said, I hope everything is going to be ok, but I need to know the answers and the options to the what ifs, it's my way of dealing, it's what keeps me going.  I have no prior experience with any kind of illness, I'm just doing what I can to take care of my man.
 
Also, english my second language, please be kind with my grammar and choice of words.
 

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