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.

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Hello all,

I read over on melanomainternational.org that the FDA has published June 3 as the announcememt date (I hope I'm getting this right--hopefully Tim can clarify) for decisions on both of GSK's drug submissions--the BRAF inhibitor and the MEK inhibitor.  I'm not sure if that's a firm date or not--again, maybe Tim knows.

The drugs were submitted separately as monotherapies, so I guess there's the possibility that one could be approved and not the other, although it seems that both will be approved.  The fact that they will have separate approvals begs some questions, such as: what happens if someone stops responding to Zelboraf...will the MEK inhibitor be added to the Zel, or would the person be prescribed both drugs?  When someone first begins the BRAF drugs, will we be able to receive uniform insurance coverage for both, or will it be an insurance company-by insurance company decision?

You can hop on over to the site and look at the entire post...I didn't know if it would be permitted to cut and paste it here.

Karen

Don't Stop Believing

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sharmon's picture
Replies 12
Last reply 4/6/2013 - 9:43am

is almost over.  he is in hopsice in ohio.  oxygen to 60.  blood pressure is low and his temperature is low,  heres the kicker.  after not having anti pd 1 since the end of jan and his tumors growing in feb,, they are now shrinking and he is to sick to move from hospice to any kink of nursing care for iv fluid or any kind of oxygen to help him live.  I can see the big tumor almost down to nothing and the the smaller one on his flank is gone.  they will not consider that at this point there is anything that can be done since his system is shutting down. 

the lesson from this is to not go to hospice care after an immuntheraphy because it can take some time to work. 

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pawillcox's picture
Replies 2
Last reply 4/4/2013 - 9:29am
Replies by: Janner, Anonymous

Hi everyone,

In August 2006 I went to a skin cancer clinic concerned about an abnormal lesion on my right forearm. After being told it was nothing to worry about I did just that.... I left it for over 6 years! I have recently had both my husband and his mother battle cancer, fortunately my husband is now in remission, unfortunatley my mother in law is terminal and at 45 only has a year to live.

I am now quite cancer paranoid and it consumes my thoughts daily.... as a result I went to my GP feeling quite stupid.... he too siad it didnt look like much but was willing to biopsy it to give me peace of mind. A few days later, a saturday morning I received a phone call from the medical centre asking me to come in urgently.... It was pretty obvious what the results were but I went anyway.

My path results were Superficial Spreading type, Breslows 0.3mm (great I know!) Clark Level II. It DOS NOT MENTION ULCERATION AT ALL! The reason why I was worried about the lesion and decided to get it checked out is because it had been scabbing up and weeping for the last year.

I have since seen a plastic surgeon and have has a wider reexcision, path results came back with no further evidence of disease

Plan going forward is to see the plastic surgeon 4 monthly.

My concern is that no lymph nodes have been looked at, no bloods taken, no scans taken. Just the surgeons belief that it could not have spread.

I know my original path results were quite good, I was lucky.... however when my husband had cancer just over a year ago he too was told that his surgery would be all that was needed, that the cancer was contained and that he could go on surveillance for a year. Luckily for him the did a blood test before they sent him home. They called first thing the nect morning and his ldh was through the roof, started 3 months of chemo the next week.

I need some sort of assurance that this is gone, not just the surgeons word because quite frankly I have had enough of being let down by doctors.

I am only 26, have two little girls and dont want to continually have melanoma on my mind.

Any advice?

 

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/4/2013 - 11:05am

Just wanted to know you're in my thoughts.

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Thought you might like... There is a longer version with more info on the web.

J Neurosurg. 2012 Aug;117(2):227-33. doi: 10.3171/2012.5.JNS111929. Epub 2012 Jun 15.
Radiosurgery for melanoma brain metastases in the ipilimumab era and the possibility of longer survival.
Knisely JP, Yu JB, Flanigan J, Sznol M, Kluger HM, Chiang VL.
Source
Department of Radiation Medicine, Hofstra University North Shore-LIJ School of Medicine, Hofstra University, Manhasset, New York 11030, USA. jknisely@nshs.edu.
Abstract
OBJECT:
A prospectively collected cohort of 77 patients who underwent definitive radiosurgery between 2002 and 2010 for melanoma brain metastases was retrospectively reviewed to assess the impact of ipilimumab use and other clinical variables on survival.
METHODS:
The authors conducted an institutional review board-approved chart review to assess patient age at the time of brain metastasis diagnosis, sex, primary disease location, initial radiosurgery date, number of metastases treated, performance status, systemic therapy and ipilimumab history, whole-brain radiation therapy (WBRT) use, follow-up duration, and survival at the last follow-up. The Diagnosis-Specific Graded Prognostic Assessment (DSGPA) score was calculated for each patient based on performance status and the number of brain metastases treated.
RESULTS:
Thirty-five percent of the patients received ipilimumab. The median survival in this group was 21.3 months, as compared with 4.9 months in patients who did not receive ipilimumab. The 2-year survival rate was 47.2% in the ipilimumab group compared with 19.7% in the nonipilimumab group. The DS-GPA score was the most significant predictor of overall survival, and ipilimumab therapy was also independently associated with an improvement in the hazard for death (p = 0.03).
CONCLUSIONS:
The survival of patients with melanoma brain metastases managed with ipilimumab and definitive radiosurgery can exceed the commonly anticipated 4-6 months. Using ipilimumab in a supportive treatment paradigm of radiosurgery for brain oligometastases was associated with an increased median survival from 4.9 to 21.3 months, with a 2-year survival rate of 19.7% versus 47.2%. This association between ipilimumab and prolonged survival remains significant even after adjustment for performance status without an increased need for salvage WBRT.

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shellsbells's picture
Replies 15
Last reply 4/4/2013 - 10:46am
Replies by: natasha, Anonymous, POW, Janner, shellsbells

Ok, so, I got diagnosed with in situ on the left arm. I went in probably within 6 weeks of noticing the first signs of change. The papule was so small (pen or pencil tip size) and black. Dermatologist almost did not send it. Said she thought it was "nothing to worry about". Well, it was in situ. My measurements were pretty small, I cannot remember what.. but the pathology report showed the surrounding skin was "normal" and "cancer free". I got it removed with 0.5mm surrounding area within 2 days of results. I keep reading all these horror stories of it metastisizing.. it scares me. I am an RN so, I think the worst.. I cannot see just statitstical reassurance, and look into the worst case scenario... My dad's brother died of melanoma 8 yrs ago at 43.. but it was melanoma caught late..

I need some reassurance, or success stories, or personal experiences, or tips!.. please help

 

Shelly

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lrkg1234's picture
Replies 2
Last reply 4/5/2013 - 7:02pm
Replies by: awillett1991, kkhalsten

My husband Scott is really helped by taking Zofran for nausea, he needs one a day. 

The insurance only covers 10 and gives us a lot of trouble to get more.  It's a big hassle and worrysome.  He needs the Zofran in order to maintain his weight.

He is going to see if his oncologist can do something to improve the situation, maybe write an letter or call??

Has anyone else had this happen and what did you do?

Thanks, Lisa

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Acacia's picture
Replies 4
Last reply 4/4/2013 - 4:15pm
Replies by: Tim--MRF, Tina D, Acacia, jmmm

My husband was diagnosed with Melanoma on January 31, 2013 and began taking Zelboraf on Febuary 1st. He was told he'd be on it for the rest of his life (or till it stops working pretty much) Has anyone else been told they'd have to take these pills for the remainer of their life? This struck odd to both of us.

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Gene_S's picture
Replies 3
Last reply 4/4/2013 - 7:20pm
Replies by: Phil S, Anonymous

The purpose of this thread was not to upset any readers here. The real purpose was to educate you that MD Anderson is a business. The CEO has put demands on employees to generate more income! In order to generate more income are they giving you more tests than are necessary? Keeping you in the hospital for extra days. Unneeded medication that is not to your benefit?

I am quite sure that the people that you deal with, the doctors and staff are outstanding and are trying to do the most they can to help cure your melanoma.   Is this the beginning of "Profits over People?

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Replies by: Theresa123, Colleen66, MaryD

I have had interferon, biochemo, TIL, and Yervoy.  I am blessed to still be here since I have had unresectable Stage IV melanoma since 2009.  Now they tell me my chronic pain is probably due to fibro.  Has anyone else had this happen?

Every day is a miracle.

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swissfarm7's picture
Replies 10
Last reply 4/4/2013 - 7:52pm

Next month the Melanoma Research Foundation and Seattle Cancer Care Alliance are presenting a melanoma symposium.  It's a free educational event.  Have you ever attended something like this?  Would you, if given the opportunity?  More to the point, what does it say about my "new" life that the thought of going to a melanoma seminar lights my fire? ;-D

Cheers,

Colleen

Keep on keeping on.

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swissfarm7's picture
Replies 5
Last reply 4/7/2013 - 4:27pm

Can't think how to title this post; forgive me, please, if the phrase "watch and wait" doesn't work for you.  I feel like we're in limbo on this melanoma journey.  It's difficult to know how to process where we're at and even more difficult to explain to others. 

Six months of interferon was enough for Hans (stage 3B).  His white blood cell counts were so critically low for so long, he would have needed another drug to counteract the effects of the interferon.  He understandably wasn't willing to go that route.  So now it's a matter of...what?  People here that he stopped the drug and glibly ask me, "Oh, he's all better?" or refer to him "kicking cancer".  They ask if he's in remission.  And, well, I don't know how to respond.  How have the rest of you handled this?  I usually just tell people that as far as we know there's no current evidence of the disease and that he'll have another scan this summer.  I guess that's all there is to say, huh?  I don't know...Some how melanoma seems so different from other cancers.  That's why I'm posting here.  Because in "real life" I know many people who have encountered cancer, but not a single one who's dealt with melanoma (or at least not at this stage).

Best,

Colleen

Keep on keeping on.

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Sharmon, just was reviewing forum and noticed you have not posted in awhile.  Hope Brent is well and you also.

Keep us posted maybe we can help.

Susan...Sister of  Angel Peter...12/6/2012

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Phil S's picture
Replies 6
Last reply 4/4/2013 - 1:26pm

Okay, I usually don't quote Hillary Clinton, but I feel like fighting melanoma really does take a village of people. Not only do we need the medical professionals (doctors,nurses, scientists), we also need the drug companies who run the clinical trials, the family and friends who care for our children, all the people who offer us emotional support and prayers, and our mpip family who truly understands our struggles and fears! When Phil went stage 4 in July 2011, I was so scared and unsure of our future! When the nasty beast spread to his brain only three months later, I thought our family was doomed! I felt for sure, we would be losing Phil soon! But, we got ourselves to MDAnderson, Phil did six rounds of biochemo and the TIL trial. He finished the TIL trial in May/June 2012, and we are thrilled to say that today in Boston, he got STABLE scans again, 11 months post TIL cell day! So, we have another 3 months of treatment free living, and get to enjoy the Spring with our children, and more importantly Phil feels really well. So, THANK YOU to all who have helped us fight against the very bad odds, we love our teams at MDAnderson and Dana Farber! No one has ever taken Phil's hope, they all encouraged him to keep fighting! So Stay Strong Warriors, you are all AMAZING, and dont forget to kiss/hug your caregivers, the village truly starts with them! God bless, Valerie (Phil's wife)

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