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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Rick from NC's picture
Replies 2
Last reply 1/28/2013 - 11:42am

Is anyone planning to go to the UNC Melanoma Symposium in Chapel Hill on Feb 6?

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squirrell68's picture
Replies 2
Last reply 1/28/2013 - 1:01am
Replies by: Ali, jag

I haven't posted for a little while but just a quick recap, my brother has received biochemo at the Sheba Centre in Israel for liver and brain mets. His brain mets were treated with SRS in August. He has an unknown primary with suspected mucosal melanoma. He has now completed five cycles and has had a partial response, last MRI was clear and the liver mets reduced by about 80%. He is feeling really well, back at work and exercising. He is BRAF and CKit negative.
His Oncologist is now recommending ipilimumab as the next step. I would like to hear from any of you who have gone onto ipilimumab after biochemo, I was thinking he would continue on IL2 low dose as maintanance but maybe this is only if you have a CR, we have lots of questions to ask next week but any advice would be great. Tracey

Determine to keeping fighting.

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Redhorse's picture
Replies 3
Last reply 1/26/2013 - 11:00pm
Replies by: Gene_S, Redhorse

Just had more melanoma cut off right shoulder. Also have metastic prostate cancer. Have been having severe pain in left armpit, and down left side, and arm. Had biopsy and Dr. Had to cut below left shoulder blade, and go inmwith his hand to find out what type of cancer I had for the prostate cancer.

Going in for another CT scan. I believe most of this is from agent orange. Got ischemic heart disease, stent inserted in 2011. Worried that I might be doming down with non hopkins lymphoma.

Anyone here dealing with pain inmthe armpit?

Mike

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Anonymous's picture
Anonymous
Replies 0

  As a stageIV paient  I am wondering if the new drugs rumored to be approved this year can be expected to be covered by insurance plans?Does any one have any idea what the costs of treatment  might be ex: anti-Pd1 and the other one I can not recall .Mind is having trouble focusing today for some raeson.Any thoughts on subject or info  greatly appreciated.  Thanks

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alankravitz's picture
Replies 3
Last reply 1/26/2013 - 11:50am
Replies by: aldakota22, Anonymous

I am a Stage IV melaonoma survivor and melanoma activist. I have been invited to participate in the Patient-Centered Clinical Trial Summit at the Partnership in Clinical Trials Conference. This gives me a unique opportunity to present a patient perspective to key stakeholders in Pharma, the CRO industry and the regulatory community. I am looking for additional patient input concerning the design, conduct, financing and analysis of clinical trials as well as the regulatory process.

The entire Translational Research Model in the US and internationally is under scrutiny by groups at home and abroad. ( see for example: the Conference on Clinical Care Research sponsored by the Friends of Cancer Research in November of 2012). We are close to significant changes in how our FDA will regulate Breakthrough Therapies under PDFUA 5. However, the international picture is not as good: requirements for approval such as  endpoint selection, randomization, comparator arms, use of placebos, and etc. are all based on antiquated notions of what constiutes scientific proof. They treat all diseases alike, they were designed to evaluate synthetic chemical treatments. They do not recognize that critical diseases like metastatic melanoma require a different approach to clinical trials because too many people are dying and because new targeted and immunologic therapies may not yet cure but have higher response rates, more durable responses, more tolerability and more practical benefits than the Starndard of Care. With the globalization of the pharmeceutical marketplace and the globilization of clinical trials to reduce costs and problems of patient recruitment, the problem of  differential standards has been exacerbated. I intend to use as an example the recently announced BMS Phase 3 trial NCT01721772) of anti-PD-1 (BMS-036558). It is the breakthrough therapy that saved my life (Extended 1B Trial) and an excellent example of the need to change regulatory practices and trial design now. As I am fond of saying , we need anti-PD-1 and we need it now!  If we want participatory medicine, we must participate not only at the level of personal choice but at the policy level.

As I prepare my thoughts, I need to know yours. You may respond here or to me directly at alankravitz@aol.com if you desire your comments to be kept private.

Alan

Make it Happen

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Carolmcq's picture
Replies 8
Last reply 1/26/2013 - 11:37am

Hello all,
Over four years ago I completed a month-long intensive interferon treatment and, after a return of the melanoma, I went through isolated limb perfusion. Tomorrow I learn how to put together a leukine injection and administer it to myself. It will be two weeks on, two weeks off for a year. I've read about the anticipated side effects, and am wondering if anyone in the community has experience with this therapy. How much will it impact my day-to-day life? Will I be able to still work a 40-hour week? Do I need to put weekend trips on hold during the two weeks on? Do side effects lessen after the first two weeks?

Thanks for any personal experiences! I realize that each person will experience it a bit differently, but at least your stories will help me prepare.

Best,
Carolmcq

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sjl's picture
Replies 6
Last reply 1/26/2013 - 10:38am
Replies by: Jim M., lou2, NYKaren, Tina D, jcmp

I've posted on here a number of times about my husband's fantastic response to carbo/taxol but it has quit working.  He's developed a new tumor on his neck and one other that had been shrinking is growing again.  He was given chemo in the beginning instead of Yervoy because his tumors were so agressive that there wasn't enough time to try anything else.  He needed a quick response and he got it and continued to respond extremely well until a few days ago when I noticed the new growth.  The chemo began in August.  He's not eligible for a clinical trial because of a second primary lung cancer.  So, for those of you who have been or are on Yervoy, what can he expect?  From what I can gather, it may take awhile for us to see results and I've read about the possible side effects.  First, we have to get it approved by our insurance company.  We have Highmark Blue Cross Blue Shield PPO.  Anyone know if they cover it or not?  We were told that he could continue to work and so on as usual.  Do most of you find that to be generally true?  And do you get good results with it?  There just don't seem to be a lot of options for him.  If this fails they said possibly more surgery or radiation.

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I am a Stage IV melaonoma survivor and melanoma activist. I have been invited to participate in the Patient-Centered Clinical Trial Summit at the Partnership in Clinical Trials Conference. This gives me a unique opportunity to present a patient perspective to key stakeholders in Pharma, the CRO industry and the regulatory community. I am looking for additional patient input concerning the design, conduct, financing and analysis of clinical trials as well as the regulatory process.

The entire Translational Research Model in the US and internationally is under scrutiny by groups at home and abroad. ( see for example: the Conference on Clinical Care Research sponsored by the Friends of Cancer Research in November of 2012). We are close to significant changes in how our FDA will regulate Breakthrough Therapies under PDFUA 5. However, the international picture is not as good: requirements for approval such as  endpoint selection, randomization, comparator arms, use of placebos, and etc. are all based on antiquated notions of what constiutes scientific proof. They treat all diseases alike, they were designed to evaluate synthetic chemical treatments. They do not recognize that critical diseases like metastatic melanoma require a different approach to clinical trials because too many people are dying and because new targeted and immunologic therapies may not yet cure but have higher response rates, more durable responses, more tolerability and more practical benefits than the Starndard of Care. With the globalization of the pharmeceutical marketplace and the globilization of clinical trials to reduce costs and problems of patient recruitment, the problem of  differential standards has been exacerbated. I intend to use as an example the recently announced BMS Phase 3 trial NCT01721772) of anti-PD-1 (BMS-036558). It is the breakthrough therapy that saved my life (Extended 1B Trial) and an excellent example of the need to change regulatory practices and trial design now. As I am fond of saying , we need anti-PD-1 and we need it now!  If we want participatory medicine, we must participate not only at the level of personal choice but at the policy level.

As I prepare my thoughts, I need to know yours. You may respond here or to me directly at alankravitz@aol.com if you desire your comments to be kept private.

Alan

Make it Happen

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Tritzy's picture
Replies 13
Last reply 1/25/2013 - 10:19pm
Replies by: Redhorse, audgator, Anonymous, Tritzy, Charlie S, POW

My boyfriend has just recently been diagnosed with melanoma. He hasn't actually been staged because we haven;t gotten the PET scan to see if it has spread but by the depth of the tumor from biposy the pathologist was fairly certian. From what they took it was 3mm deep but the tumor went deeper. This is scary. I have read alot and know how bad it might be. I was trying to keep this from him. He is sort of a hot head and I didn't want him to freak out and do drugs and drink like crazy. He is an ex-addict and an alcholic. Well lately he has been growing more and more impatiant. We haven;t gotten anymore treatment other than a biopsy because he has no insurance we have applied for PCIP and gotten approved but coverage doesn't start till febuary 1st. So he got an appointment with the county hospital through American Cancer Sociery. He thought he would get more answers but that isn't what happened. They told him what he already knew. This angered him which he has already been getting angrier and angerier. Then the other night awoke with terrible night sweats. This freaked him out so of course naturally he googled it. This told him how bad it probably is. The thing I have been holding from him in hopes that I can keep him happy for that much longer. He became very very angry, He says hurtful things to me and starts fights with others. I just don't know what to do. I feel so alone. I want to be there for him. I love him more than I ever thought I could love someone but being with someone that seemingly hates you and everything you do is really hard. I can't talk to my friends because our relationship hasn't been perfect and they just don't understand. They either say that its because of all the other things he does or that what we have just isn't love, people don't treat people they love that way. I just wanna yell at them. HE IS ANGRY BECAUSE HE IS PROBABLY DYING!!!!! HE TAKES IT OUT ON ME BECAUSE HE IS CLOSEST TO ME!!!! This is something I understand. I just don't know how to not involve my own emotions, To not get upset when he is angry at me. I just need someone impartial to talk to. Or advice.

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

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karebear1905's picture
Replies 4
Last reply 1/25/2013 - 9:38pm

I just finished an ippi treatment for a clinically trial I am on. With stage 3, I am always worried about results. I had my CAT scan done also. The scans went smoothly but a doc who read the scan indicated I had a 4cm growth in my right abdominal. But my onc said he did not see anything in the scan and not to be worried. Should I be worried?

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jag's picture
Replies 6
Last reply 1/25/2013 - 5:10pm

I remember when I was first diagnosed reading about stage IV People who used Celebrex to keep their disease stable.  I was wondering if they are still alive.  Especially since a lot of people on here have been having trouble with pain management lately.

Insert Generic Inspirational Motto Here

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Hey People,

Just saw this article about how injections might soon be less poke-y. My first thought, bizarrely, was that I hoped to have cancer long enough to experience these awesome new injections. My second thought was that was first thought was way stupid and that I don't want any more cancer or injections, needle-free or otherwise. Still, this could be very helpful for those of us who are getting daily blood clot injections, and if they could manage to draw blood with them that would be pretty excellent as well. Anyway, here you go:

 

http://health.yahoo.net/experts/dayinhealth/new-laser-device-delivers-ne...

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Amanda's picture
Replies 3
Last reply 1/25/2013 - 2:28pm
Replies by: Owl, Amanda

So, my boyfriend has been trying to get into the Merk Pd-1 trial at UCLA , and were told once his scans were done, that the radiologist found something in the brain,and it needed to be compared to his previous mri's to make sure it wasn't something new.  It took two weeks to get them the disk and for them to compare.  

The doctor sent back an email saying the scans were compared and that if we could meet with him because ''We need to discuss the results and decide how to proceed.''

I'm very upset, since i was hoping for an all clear to start the drug...now it sounds like (to me) that it's not going to happen based on new brain lesions.  any opinions on the wording of his email?  Or are we probably disqualified?

I replied to the email asking straight out if we were disqualified, and i'm waiting on a response...

thanks- Amanda

"Give thanks in all circumstances"

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dflohr's picture
Replies 6
Last reply 1/25/2013 - 11:38am
Replies by: Ali, NancyGM, Marcia1, Anonymous, POW

Does anyone have any experience with this drug? Has it worked for you and did you have any side effects? My husband had Stevens Johnson from Zelboraf so cannot go back on that or Ippi. Are getting a second opinion today but doing research on my own there is not a lot available until debrafenib and trametinib are approved. Thanks for any help  you can give me.

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