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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Judy D's picture
Replies 10
Last reply 1/30/2013 - 7:49pm

I am stage IV and am on Zelboraff. I recently have had two different nodes removed from my right thigh. My dr. Is recommending that I get a consult with a radiation oncologist. My question is has anyone done radiation for their melanoma and what was it like? Thank you for any advice on this subject.
Sincerely, Judy

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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You all know how devastated we feel right now. My beautiful, loving 63-year old husband has Stage IV Melanoma with a tumor in his brain, several in pelvic area, one on adrenal gland, several along spine, and some small lung nodules. My God, how could this be? He's always been so strong and so healthy!

We've been to Dana Farber and met with a melanoma specialist. But is she the best? Does she know everything that will help my husband? Should I go somewhere else for another opinion? Anyone know anything about the Sylvester cancer center affiliated with University of Miami for melanoma treatments?

Radiation started Friday to pelvic area (he's in a lot of pain). Cyberknife will be performed on brain lesion maybe this coming week. Dana Farber neuro-oncologists agreed with this approach. Dana Farber melanoma doctor is suggesting Yervoy  in a week (if he has the right "markers?")??

What else do we need to know? So much to learn, so much to think about. All I know if that I want more years with this wonderful man! Please help!

Thankyou.

Janet

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Replies by: meeshka6059

You all know how devastated we feel right now. My beautiful, loving 63-year old husband has Stage IV Melanoma with a tumor in his brain, several in pelvic area, one on adrenal gland, several along spine, and some small lung nodules. My God, how could this be? He's always been so strong and so healthy!

We've been to Dana Farber and met with a melanoma specialist. But is she the best? Does she know everything that will help my husband? Should I go somewhere else for another opinion? Anyone know anything about the Sylvester cancer center affiliated with University of Miami for melanoma treatments?

Radiation started Friday to pelvic area (he's in a lot of pain). Cyberknife will be performed on brain lesion maybe this coming week. Dana Farber neuro-oncologists agreed with this approach. Dana Farber melanoma doctor is suggesting Yervoy  in a week (if he has the right "markers?")??

What else do we need to know? So much to learn, so much to think about. All I know if that I want more years with this wonderful man! Please help!

Thankyou.

Janet

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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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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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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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