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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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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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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DeniseK's picture
Replies 12
Last reply 1/31/2013 - 12:03am

Hi Everyone,
Well it's been a week since I saw Dr. Minor in San Fran. What a great visit.
One of my first questions was would he have done wbr on one brain lesion, his answer was no. Well I was disappointed that was the case but it's over and done so the positive is that if there were cells cruising around up there they most likely would be stopped.
I had been on z for about 9 days when I saw Dr. Minor, I had a horrible red, itchy, rash/burn all over my head, this concerned him so he took me off z fora week and iI've been applying a cortaid creme 4xs a day for the last week. My head is getting better.
I've finished the meds for thrush and food is tasting better, but I've been off z too so not sure if that will come back. I've been sleeping a lot!! Like all day for days. Probably from the wbr.
He's sending me to see a great dermatologist Dr. Kashani. Every mole on my body is surrounded with a red ring. I have basal cell diagnosed under my right eye that noone has addressed.
What I found concerning is noone has tested my LDH levels until now. I don't know the results yet but at least I've been tested now. He's got what I feel a pretty good treatment plan that makes total sense. I'm going to stay on z for 3-4 months to reduce or eliminate my tumor load, depending on what happens with my brain I will then do ipi or bio chemo.
He did say that the mek was due to be fda approved along with dabrafentib (spelling) the othe braf inhibitor was due out in the 2nd quarter this year, possibly anti pd 1 this year as well. Very good news!!
He said no to the ketogenic diet because it can mess with your liver enzymes which isn't good while on z and preparing for ipi or bio chemo.
After 9 days of z and off for 3days I got some pretty debilitating knee pain and bottom of feet pain, it went away 2days later but man oh man that wasn't fun, if it happens in both knees I'm gonna need a little rascal to get around.
I've been meaning to post earlier but sleeping became priority. Overall I'm doing good very mild headaches, a bit emotional, and a positive outlook for the future with a treatment plan in action. The top priority is brain stability, this could open more doors for treatment in trials. But for now it's day to day's. Brain mri on February 15 then I go back. I got a lot of hope for all of us in this fight that this can be beat and with more and more drugs coming its a matter of time till a cure comes.
All my best to you all,
Denise :)

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

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

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bikerwife's picture
Replies 3
Last reply 1/29/2013 - 12:25am

Lynn has 12 new brsin lescions. Gamma knife on Feb 4. body scan on the 13th. But im afraid z has stopped. With brain this bad there may be nothing else rfor us. 

What God leads u to he will. Lead you through

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buffcody's picture
Replies 3
Last reply 2/2/2013 - 9:29am
Replies by: buffcody, awillett1991, POW

I've had metastases to the lung and brain so far. All have been treated or removed.   Just had a PET scan done yesterday and won't see my oncologist for my results till next Wednesday, but an "inside source" who got a look at my scan report says that there is a suspicious marble-size tumor on my left hip accompaied by bursitis.  Anyone know anything about mets to the hip?  I don't even know if they are talking about the hip bone right now. I'm so bad with anatomy that I am not sure whether when someone tells you that something is on the hip that means the hip BONE or not? 

Not happy, of course, with the presumed news. I've been on ipi since October 30 with fourth infusion over three weeks ago.  No other body mets supposedly when I went on ipi and the brain mets were zapped 7 weeks in.   Am happy there was nothing suspicious besides this showing up in my first PET in 3 1/2 months.  I have had left leg pain for a few months, before the last PET scan in October, that I was receiving physical therapy for and baffled two therapists.  But why no sign of this tumor before the last PET scan? Anyway, I won't jump to conclusions but am interested since I know what I know in learning more.

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shep's picture
Replies 5
Last reply 2/1/2013 - 1:33am
Replies by: JerryfromFauq, shep, POW, Janner

My daughter's biopsy came back as melanoma 1/22/13.  Her dermatologist told her it was 2mm deep but had her schedule a surgery to remove more with a surgeon. This procedure is to take place 2/7/13 along with a radioactive 'tracer(?)' test, I guess, to find out if it has metastized? Did the dermatologist ask her to see a surgeon because it could be deeper, or is this just a normal practice? Her appointment today with surgeon left us with more questions. He will be taking a 'diamond' tissue removal instead of 'circular'. This has no meaning to us, and she has not been 'up' to asking questions yet... thanks for any help!!

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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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sheri47's picture
Replies 5
Last reply 1/29/2013 - 12:31am
Replies by: meeshka6059, Anonymous, CateB, POW, vicuk

Hospice said 2 weeks tops left for my mom at this point praying for a peaceful passing , damn mm

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TAC's picture
Replies 2
Last reply 5/18/2013 - 8:44pm
Replies by: kylez

Haven't been here in quite a while. Am Stage IIIb and have been for almost 12 years in spite of 6 recurrences..all surgically removed..all on the skin or just underneath. Have had 8 surgeries, 4 skin grafts, 2 sentinel node biopsies, chemo (interferon), radiation, a vaccine and then Leukine for 8 years. Fortunately none of the recurrences were in organs. I did have renal cell carcinoma (kidney removed) and in 2008 had adenocarcinoma (lung cancer and upper left lobe removed....I don't smoke). Been quite a journey in the cancer world but so far so good.

Chicken Soup for the Soul was soliciting stories for their Cancer Book. So I submitted a story called The Room of Hope, my story in the chemo room. It was included in the book. My view of the chemo room was and is that it is a place where Hope lives so I wrote it from that perspective. If you are interested in reading many good, hopeful and yes, sad stories, get the Chciken Soup for the Soul - The Cancer Book. My story is one of them.

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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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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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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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