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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Has anyone taken Yervoy and had unexplained fevers and chills that are intermittent?

My Mother has had reoccuring fevers, with only one blood test with a high white blood cell count. Blood tests are negative and CT scan doesn't show anything to go on.

Right now, it a bit of a mystery that has been going on for 3 weeks.

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ClaudeM's picture
Replies 15
Last reply 2/19/2014 - 7:16am
Replies by: ClaudeM, Anonymous, Bubbles, Cooper, lanasri, POW

Diagnosis: Nodular Melanoma, Breslow 5mm, Clark IV, no ulceration, no periphereal lymphoadenopathy. T4NoMo.

I was on Biological therapy with interferon alpha 2b. I went through the induction phase. 5 days a week 30 MIU  INTRON A intravenous.

Wow was that a living hell or what? My liver was so damaged by the end of the month that my doctor thought i had Hepatitis. My ast/alt were like 450, and 420.

The second phase was better, but still pretty damn bad. 18 MIU INTRON A 3 days a week for eleven months, subcutanously with Multi Dose Pen.

I remember I thought that eventually it will get better , headache, nausea, fever, leg pain but it's didn't. I mean, the fever was not so severe as it was in the begining but everything else just stayed the same.

Now i am doing a research of real life stories of how everyone handled their dose of "liquid hell".

Please, if you went through a therapy with Interferon, Roferon, Peginterferon, tell me how you dealt with it. What were the side effects? Did anyone found a way to deal with some of them?

Also, if you are about to start this treatment , please contact me and i will help you with all i know about it.

It's good to be here on this site, i don't know why i haven't found it sooner.

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Of course pun is intended.  Really pretty neat stuff. 

http://news.yahoo.com/video/doctors-using-therapy-shock-away-063513629.html

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A lot of this article is pretty common knowledge by most on this forum but there were a couple interesting comments made.

http://www.washingtonpost.com/national/health-science/new-therapies-raise-hope-for-a-breakthrough-in-tackling-cancer/2014/02/14/b4f8e4fc-8dad-11e3-95dd-36ff657a4dae_story.html

 

 

 

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triciad's picture
Replies 1
Last reply 2/18/2014 - 8:33pm
Replies by: Shelby - MRF

Now that I am in between shoveling, I can finally post a note here.  I just want ot thank Shelby and the MRF for putting on a wonderful synposium last week in NY.  Dr. Weber and the other doctors were fantastic!  A lot of information was presented, but most of it, I read about here on the forum.  The one thing that was shocking...PD-1 drugs have not been released for compassionate use. 

The trials are showing fantastic results, yet, the drug is not available to those who need it desperately.  Please take a moment and write to Merck and Bristol Myers Squibb asking them to please release these drugs for compassionate use.

Blessings to all for keeping the fight alive!

Tricia 

 

 

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Bleeds's picture
Replies 4
Last reply 2/18/2014 - 8:22pm

Hello all,

 

First post...

 

Looking for anyone or anything or anywhere with regards to a CLL patient (5.5 years) and recently diagnosed with Met Melanoma (liver, lungs spleen nodes). Already learned the acronyms for CLL now have to learn them for this. Still awaiting for BRAF mute and others. Waiting for an appointment at U of CO hospital melanoma group in Denver. Might be willing to go to UCLA. Anyone know of a good doc there? Clinical trials?

 

Thank you very much!!!

 

Gary

 

 

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Lil0909's picture
Replies 4
Last reply 2/18/2014 - 3:32pm
Replies by: Lil0909, mark1101, ecc26, Linny

I had a R axilla lymph node dissection about a month ago. I have a good amount of swelling in my chest/back area (under my armpit on my torso, kind of around bra line), as well as some on my arm. I'm getting fitted for a compression sleeve next week, and my therapist said to purchase compression tank tops for the torso area.  What I am seeing though doesn't really go up high enough on my back....I have tight workout tank tops, but the swelling seems to push up over the top. After googeling, I'm seeing tons of options for arm swelling, but not really anything for what I'm experiencing. 

Any suggestions on what to do/wear for the swelling on the torso area?

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Michelem's picture
Replies 9
Last reply 2/18/2014 - 1:27pm

My hubby has extensive mets throughout groin, liver, spleen, bones. He has just started ipi, but as I reading up on it I'm a bit unclear - if it works, is there a chance it may actually eliminate these mets? Or just arrest them? Or prevent from spreading further?

If it halts or slows things down for now, but the cancer comes back in future months or years - do we do the ipi again, unless something else has come out by then?  mm

MicheleM

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Lisa - Aust's picture
Replies 8
Last reply 2/18/2014 - 12:25pm

Hi Everyone,

Craigs 2nd set of scans on the Merck PD-1 Trial look good. We only briefly caught Prof today, but he said there was further reduction in the size of the spot. Although we were fairly sure that these scans would be ok - the scanxiety was still very high! I guess you never know with Melanoma.

Anyway - just wanted to share the good news. Hopefully this amazing drug gets the go ahead very soon.

Cheers,

Lisa

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arthurjedi007's picture
Replies 9
Last reply 2/18/2014 - 10:46am

Just got call from Artie's Dad, they can't do the surgery because of the way the blood vessel is situated. He's devastated and is terrified to move. According to Dad, the doctors gave them no hope. If he moves wrong he could become paralyzed at any time just moving at all.
Right now, that is all I know.
I can't stop crying, he told me Sunday that this was his only hope of not becoming paralyzed. Hell he could sneeze and become paralyzed, that's how precarious his situation is right now.

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/18/2014 - 8:33am

BMS has this immunotherapy agent in its pipeline.  Is anyone on a trial or otherwise hearing the melanoma specialists talk about it?

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fernando's picture
Replies 4
Last reply 2/17/2014 - 8:00pm
Replies by: Brent Morris, BrianP, Gene_S, POW

Hello

My wife (44 years old) was diagnosed with sinonasal melanoma a year ago, she already went through two surgeries and radiation. After 35 sessions of radiation, cancer spread to her lungs in several spots.

She is going to start the trial for (ipilinumab and nivoluma, blind trial, we dont know what she is going to receive) on Feb 20.

 

Is there anybody that has participated in a similar trial?, I would like to know about side efects and how to handled them. When we asked doctors about side efects, they said it depends on each person, that everybody is different..... We would like to know from those who has already tried those medicines.

Thanks

Fernando

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arthurjedi007's picture
Replies 13
Last reply 2/17/2014 - 7:51pm

This is Artie's college sister......he's at Bjc awaiting spinal surgery on Tuesday to remove the T10 vertebrae and tumor to prevent paralysis.
Have the tafinlar and mekinist at home to start. Have gene analysis on tumor, still hoping to get to MSK and Sarah Cannon.

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Tina Botes's picture
Replies 3
Last reply 2/17/2014 - 2:01pm
Replies by: ukritam, Tim--MRF, fortiz

My husband was diagnosed with stage IV melanoma two weeks ago after a large brain tumor was removed. The tumor was 6cm x 5.3 cm x 5.2 cm and was a metastasized melanoma. What started out as suspected depression 8 weeks ago turned into a nightmare roller coaster ride.

The tumor was removed completely and a PET scan last week showed no other tumors - it did show however that he has Polycystic Kidney Disease (which explained a lot of his health problems). His kidneys are both significantly enlarged and misformed with multiple cysts, he also has cysts in his liver and spleen. His mitral valve is no longer functioning 100% and and and... Within a week he came face to face two enemies! Either one of the two will kill him. The oncologists though aren't even bothered by the PKD. I suppose melanoma is a bit more urgent than the fact that his kidneys will fail in a few (5 - 10) years.

He was at the dermatologist yesterday. The dermatologist took two skin shavings, but he said there is nothing even remotely resembling a primary tumor. We will have the results for the skin shavings tomorrow, but I suspect they will be clean since this is what the dermatologist said.

My question is really this: the oncologist recommends a single SRS session in two or three weeks and then nothing - just scans every three months. It feels so unsafe! They say without the SRS the brain tumor will be back in less than 6 months, with the SRS it can be longer. Shouldn't the treatment be more aggressive? Since the melanoma spread through his blood, shouldn't we try to do something more than wait?

I know there are other South Africans on this forum - please can you tell me who the oncologists are that know melanoma?

My hubby is 51 going on 30 - he has always been energetic and adventurous. Four weeks after his craniotomy I'm fighting to keep him off his motor bike. He still had staples in his wound when he was back on the driving range to check if his swing is still OK.

 

 

 

 

 

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I was searching for full body scanning practises and detection related things and came across these. I do not believe it is approved yet in the US however? I am in Canada and there is one within driving distance to me and very curious about it.

Has anyone had it done yet?

www.verisante.com

http://www.vancouversun.com/touch/story.html?id=9285899

Also came across this (Foto Finder http://www.medpoint.ca/specialists/dermatology/). Personally speaking after us trying to do it a couple weeks ago for the first time, I think it would be great. My husband took the pictures for me and finds it challenging because I have so many freckles/moles all over my body. I am sure we will get better at taking the pics as time goes on. Still nice to know there are options out there.

http://www.fotofinder-systems.com/index.php?id=341

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