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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sharmon's picture
Replies 1
Last reply 4/6/2011 - 7:54pm
Replies by: King

Hi everyone,

We just got the news that after 14 months his tumors are growing again,  He is Braf negative,  has tried luekine,  ipi  with chemo, and bio chemo,  the gsk mek trial is opening combo trials using chemo and MEk together and they want to move him into one of those right away at MD anderson. 

Does  anyone have any ideas.

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claudia-uk's picture
Replies 7
Last reply 4/6/2011 - 7:08pm

My husband received his first infusion of Ipilimumab 2 weeks ago. He was tired before, but since then he sleeps most of the time. About every 3 hours (during the day) he has to sleep for 1-2 hours. Then he goes to bed at about 9pm and can still sleep all night.

And he does barely eat anything.

Has anyone else on Ipilimumab experienced the same? Will it get better eventually?

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Peter L's picture
Replies 1
Last reply 4/6/2011 - 5:45pm
Replies by: MichaelFL

Howdy Everyone...

If one knew from pathology report that their mitotic rate was 2, would there be any way to then use that number to calculate their own tumor doubling time ?  Maybe it's way way more complicated than this but I thought I'd just ask anyway.

 

Regards, Peter

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Lavge's picture
Replies 0

Does anyone know how quickly a melanoma can evolve after a mole has become itchy and sore?

The reason I'm asking is that about 2 months ago a mole on my back started itching. I saw my doctor about a month ago but still has to wait 3 more weeks before I can see the dermatologist. I've now noticed that it's changing rather quickly. I don't know how long it has been changing for as being on my back I haven't wantched it much before it started itching.

I'm now really worried. I have loads of moles and some clearly growing. i have no family history, but is fair skinned, burns rather than tans and was repeatedly burned as a kid.

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/6/2011 - 4:07pm
Replies by: premedy, MichaelFL

Questions....How hard is it to get into MD Anderson? Any doctor recommendations?  We are being told that we are out of options where we are and want to get the best chance of survival, so are seriously considering a move to a great melanoma center (according to a lot of you, MD is one of the best).  Any advice, comments would be appreciated.  My husband is stage 4 with mets throughout his body and brain, and has not responded to interferon, braf,  ipi, etc.  We need to make a decision asap.  As a lot of you know, waiting is killer!!!

Thanks

laughter is the best medicine

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I finally made it to MD Anderson this week for consultation with Dr. Falchook. My creatine level was elevated and kept me out of the pi3k trial I wanted. He  told me the next best option was Avastin & Revlimed. It looks like I start on April 14th for first infusion then go back every two weeks alternating with revlimed.

Hopefully someone can help.

Thanks for all your help,

Rocky (Stage IV Liver Mets)

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I was watching the news yesterday evening and was shocked to hear that part of this budget hold up is due to certain riders the House of Representatives is attaching to the budget.  One of the riders is to abolish Medicare.  The House is also asking for trillon dollar cuts to medicaid.

Medicare is paid by everyone through a separate tax, its our Social Security /Medicare tax.  So each one of us pays into this system which is suppose to be a very well run system.  However there is a movement to privatize Social Security or to get rid of it.  Its our money and our entitlement and the House or Representatives shouldn't be messing around with it.  I don't know how many of you are receiving treatment through medicare or medicaid, but these two sources of health care for folks who do not have regular insurance is in jeopardy. 

If you are a person receiving health care through one of these programs, please email your congressman and senator urging them to stop the gutting of these programs.

We have two wars, and another possible one in Libya where we are spending billions monthly and they want to gut medicare and medicaid.  I know many people who are on Medicare and I don't think its right.  Its our money and its our entitlement.  Let them find another area in which to cut. 

C

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Replies by: premedy

Help to prevent the risk of melanoma. Please sign my petition to the RI Legislature to support House Bill 5627 to prohibit minors under the age of eighteen from going to an indoor tanning facility without a Doctor's prescription. This bill failed last year due to lobbying from suntan parlor owners and the Indoor Tanning Association. Research shows that there is a 75% increase in the risk of melanoma from exposure to UV radiation from indoor tanning. In 2010, it was estimated that the indoor tanning industry generated 2.6 billion dollars.
My petition to stop skin cancer in ri is on the change.org website. You can access the link with http://www.change.org/petitions/stop-skin-cancer-in-ri. My husband was diagnosed with Stage III melanoma in 2006 and lost his courageous battle twenty months later. My thoughts and prayers reach out to each one of you touched by melanoma. Never give up and never give in.

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jenniperry's picture
Replies 23
Last reply 4/5/2011 - 10:16pm

Miss you baby!  I can't believe what melanoma does to someone.  I was so angry at the cancer in your body when you died.  It's so unreal how bad it can get.  My heart breaks for those who are suffering this disease or are caregivers of those suffering.

Cherish every day you have.

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emilypen's picture
Replies 1
Last reply 4/5/2011 - 8:17pm
Replies by: Terra

Hi All,

What a journey the last few months have been. My husband has been Stage IV since June 2010 and after being randomized to chemo on the Roche PLX 4032 trial he started on the MEk & PI3K trial in Sept. 10.

Six months later and 15% reduction of the tumours he had a bad reaction to the drug ( a all over body rash) and was taken off the study for 3 weeks. Unfortunately during that 3 weeks one of the tumours in his back decided to start growing again and this time grew right towards his spinal cord. We found out it had only grown 14% which meant he could have gone back on the study but because it got so close to his spine, he needed emergency surgery. The study does not allow you back on if you have an "event". Talk about frustrating!

Now 3 weeks after surgery he is almost finished with 4 treatments of stereotactic radiation ( to take care of any remaining tumour near his spine) and he has been allowed to crossover to the PLX 4032 side of the study through the expanded access program. Our Oncologist is hoping it will work, there are some concerns because he was on the Mek drug that it might not.

His plan is keep my hubby on PLX until it fails and then start Ipi (Yervoy) if there is not anything else better at that time. In Canada Ipi is still on trials as our FDA has not approved it yet.

Anyone else go from a Mek to a Braf inhibitor?

I'm also wondering how long those of you on PLX have been taking the drug with success? And has anyone gone from Braf inhibitor to Ipi? Outcomes?

Thanks so much,

Emily

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Peter L's picture
Replies 8
Last reply 4/5/2011 - 7:05pm

Hey Everyone....

generally speaking, do melanoma primaries have pigment.  We noticed a small pencil-eraser-sized non-pigmented 'lesion' near the temple by the hairline last night and I don't know to be concerned or not.  She sees the derm in a few weeks, but sometimes a few weeks can be a really long time.  Do melanomas tend to be pigmented ?

Thanks to all

 

peter

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Yesterday my husband had his first two week doctor's appointment after beginning the GSK BRAF/MEK trial at UCSF.  We thought that some of his skin lesions looked smaller, but were afraid it was just wishful thinking.  The doctor confirmed that our observations were not merely wishful thinking. He looked at one lesion and said "You call yourself a tumor?"  Apparently, our doctor believes in trash-talking tumors.  We both left feeling more hopeful than we have in a long time.

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Just ran across this and thought it may be of interest.

http://therapy.collabrx.com/

 

From the Cancer.net website:

Targeted Therapies

This section is the result of a collaboration between ASCO and Cancer Commons – Melanoma and is updated dynamically.

As mentioned in the Treatment section, a patient’s treatment plan can be tailored or personalized based upon known subtypes of melanoma. This approach, known as targeted therapy, is designed to target or inhibit specific genes or pathways that contribute to melanoma cell growth. This is a major focus of research for melanoma.

Patients can learn more about these genes and pathways by using the Targeted Therapy Finder, a search tool that provides information on possible therapies and diagnostic tests based upon a patient’s melanoma diagnosis. Patients are encouraged to use this tool and share the results with their doctor when making treatment decisions.

The information provided through this resource is maintained by the Cancer Commons – Melanoma editorial board.

http://www.MelanomaResources.info

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KevinM's picture
Replies 14
Last reply 4/5/2011 - 11:23am

I can't believe that it has been 5 years since the surgery to remove the axillary lymph node that turned out to be melanoma. I have an unknown primary and after a full lymph node dissection, the one lymph node (2/3rds of a golf ball size) was the only one found positive for melanoma. I did 3 rounds of bio-chem in a clinical trial which was very challenging.......but I am still glad I chose this route.

To help celebrate my 5th anniversary, I am running The Boston Marathon for the 11th time and second with the "Running for Cover" Melanoma Foundation of NE marathon team. This will be my 19th marathon and 7th since my diagnosis. Running has certainly helped me get through the past 5 years and it has also provided an avenue to promote melanoma prevention and early detection. I feel great that my message has changed the mindset of many friends, family and colleagues.

This  year I am running in honor of my healthcare team at Beth Israel...but please know I always run with those of you engaged in the battle with melanoma in my heart.

My best to you all!!

Kevin

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archer's picture
Replies 17
Last reply 4/5/2011 - 10:34am

I admit my human frailties are in this area.  I have never been comfortable doing this but I will learn if it will help my wife.

Only been married less than a year, her age 55.  She is the bubbliest, strongest female I have ever met.  We exercise daily and eat 90%  healthy.

The diagnosis this past Thursday has turned our world upside down, (more so it seems for me than her)  She has the best attitude and there isn't any

pity party going on.

 

I can't understand how she got to this place.  On Jan. 15, 2011, she felt a lump in her armpit.  Went to family doc, he felt it said it didn't feel like cancer

and thought is was an infection in the lymph.  Medicine for 10 days. Nothing changed.  Then on to a surgeon who immediately ordered an ultrsound

and then they did a biopsy the same day.  This biopsy was taken to the local lab and then transferred to Mayo Clinic.  After waiting for 3 weeks, Mayo

told us they couldn't find anything and asked for more tissue.  The surgeon suggested trying to remove the lump which she did.  She said it was the size

of a golf ball.  She also said it was watery with some solids and no tentacles growing out of it.  That lump was again sent to Mayo Clinic and then we 

found out it was sent from Mayo to the Massachusetts General Hospital.  So, again after 3 weeks, they tell us that it is a spindle cell that they feel is

caused by a metastasized melanoma.  She never goes in the sun and there aren't any detected on her skin.  We are really confused and scared.

 

We are to meet with an oncologist this week and see from there.  I am sure they want to make sure she does not have anymore cancer present in

her body.  That is what we are hoping for.

So, I hate that I have to be writing this story but for me, it seems to help to do this... Sort of a therapy.

One question, I am wondering why it took 3 labs, different pathologists and 6 weeks to come up with this diagnosis.  Does that make sense to anyone?

Is it a good idea at this stage to ask for a second opinion?

Thanks for listening.  We are not sure what to do....

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