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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carol b's picture
Replies 7
Last reply 1/8/2011 - 2:30am

I start Interluekin-2 next tuesday at the Baptist Memorial Hosp in Memhpis Tn..I dont qualify for surgery because the tumor and lymphodes are matted and to close to the nerves and blood vessels under my arm and in my neck.. Can anyone tell me about what my first day will be like with the interluekin-2? thanks in advancesad

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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ockelly's picture
Replies 23
Last reply 8/22/2011 - 6:04pm

Is anyone out there, besides Michelle in VA, in this clinical trial?  Wondering if you are having side effects after injections?  

Any indication if you are receiving the drug vs the placebo?  We should hear this week if my husband, TJ (stage 3b), qualifies.

Kelly

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ktorrey14's picture
Replies 9
Last reply 1/6/2011 - 6:52pm

HI,

My younger brother recently moved to the Portland, Maine area & we are looking to find him a new doctor skilled in following up with his melanoma care.

He was diagnosed 3 1/2 years ago with Stage 2A NMM and moved from Minnesota to Maine a couple months ago.  We had a fantastic doctor here in the Minneapolis area who worked exclusively with melanoma patients so are now looking for someone in Maine to continue being vigilant with his care.

If need be, he COULD travel the two hours to BOSTON area where we know they would have many skilled physicians.  He just thought if there were a skilled Melanoma Specialist closer to him, it would work-out better for all these follow-up visits.

Thanks in advance for your help!!! :)

Big Sis KT

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Seems to have a lot of good stuff in it.

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Not all SPF 50 sunscreens are equal.

Do the best you can.

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Lori C's picture
Replies 9
Last reply 1/3/2011 - 8:01pm

I am sorry to pass along the news that Bill58 (stage IV recently found to have brain mets) died today.  Bill was very supportive of me during my caregiving experience - he is from my hometown (we went to high school together, as it turned out) and came to Will's memorial service.  He shared a doctor with Will and recently switched from Dr. Jon Richards/Sigrun Hallmeyer (will's initial docs) to Dr. Howard Kaufman in Chicago.  I was very happy he had chosen Dr. Kaufman and was so hopeful for him.  Bill often posted on here but I was not sure if his family would have access to notify the board....

He leaves a wife and three children. 

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lovingwifedeb's picture
Replies 15
Last reply 1/3/2011 - 10:06pm

I was really hoping I wouldn't have to come back here writing, exposing my feelings for all to see. But if not here then where? It's not the same in the other places I've been, the support is big here, so I'm back asking for your generous feedback for the one person in my life who is changing before my very eyes.

It has been only 6 months since melanoma has taken over our lives, to some that is a drop in the bucket. To some of you, your experience is vast, the years long and painful. I will not be able to compare my story to yours and I will not try. I write from the heart only, I am the caregiver, the wife who watches her husband slowly change from the person she married.

Father's Day - Stage 3B

July 22nd - Surgery

Choice - No treatment/Nutrition Based

5 Months - Happy New Years - New Tests - Stage 4 - Brain Cancer

No other "hot spots" in body found

 

My husband's melanoma has crossed the lymph system into the blood system into his brain, 6 short months from diagnosis... now what?

Appointment with the neurologist on Monday.

Absolutely Terrified.

 

Deb

lovingwife to Bob, stage 4

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mike_nj's picture
Replies 10
Last reply 1/4/2011 - 10:41am

Hello all

I have been checking the board frequently but rarely see anyone around to chat with lately.

Anyway, I hope that this year is the year that the researchers connect all the dots and we can start talking about either curing melanoma or downgrading it to a chronic disease, but no longer life threatening for most people.

I still work and I am involved in building a cat litter plant so my 3 cats should be happy.  My family, threw me a surprise 60 b-day party back in November.

I am due for another checkup in May as I am now 6 plus years out from my stage 3B diagnosis.  Still have Lymphedema in my right arm and some external radiation scars but in pretty good shape, other than my knees (arthritis).  I still take an assortment of supplements as well

If I had to get this cancer, I am honored to among all of you, those we lost and mourn , those fighting with active disease, those like me in a holding state, the newly daignosed, and all the caregivers and doctors and nurses that are on our side.

Happy New Year

 

Mike from NJ

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nicoli's picture
Replies 2
Last reply 1/2/2011 - 10:01am
Replies by: Rocklove, JuleFL

Dear Melanoma (NOT!),

Well, 2010 has come and gone and only partially because of you, mel, it was without a doubt the worst year of my life. We had quite a fight. You did your best, even returning after I thought I had kicked your a**.  

But.....I'M STILL HERE!  And I expect to be here this same time next year, thanks to my God, my good doctors, and my treatment plan.

But will you still be here next year, mel?  Maybe not, maybe they will find a cure in 2011. Maybe 2011 is your final year, mel. Maybe. You BETTER be scared, mel, cuz nobody likes you mel, nobody is praying for you, nobody is working and fighting to find a way to keep YOU alive.

Maybe you better run home crying to your mama, mel, maybe you better go home and get your affairs in order, mel !

So here we go again, just you and me, mel. Ready?  CUZ I AM. Round One of 2011: Biochemo starts next Thursday. Let's see how you like it, mel.  I know I'm gonna LOVE it. Can't wait! Let's go.

Most sincerely,

Nicki, stage 3b

 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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JewelryCrafterGirl's picture
Replies 31
Last reply 8/9/2014 - 12:47pm

Was wondering what your recovery times were like for the wide local excision and sentinel lymph node biopsy.  Am having mine done at Lee Moffitt (Dr. Zager) in Tampa, Florida on January 13 or 14.  WLE is mid back, SNB is either under arm or neck area.  They say six weeks for total recovery, but that some people are ready to go back to work in just a couple of days.

Thanks, Happy New Year!

Pennie

embrace the positive

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KellieSue's picture
Replies 4
Last reply 1/1/2011 - 7:48am

Brain Mri: Clear, thank goodness.

Ct Scan: definite shrinkage in neck and also stable disease. Lungs: about 4 nodules in each lung after 8 weeks of ALT. Darn!!!!!

So ALT worked on the neck and theres nothing else in the body or brain, just the lungs now. So 8 more weeks of ALT at a higher dose, Dr. Mo believes the trial people will okay it. I was the 1st person to do a 2nd 8 week treatment and I have shown progress in the past. I know this treatment and think I can handle it again.

Or high dose IL-2. He said we try it for a week, if I don't want to die then we do one more week. If I can't  handle it or it doesn't do any good it won't exclude me from doing ALT. Or we look at B-raf? Trial should be opening up in the next few weeks here he said.

 Really wasn't expecting these pesky lung nodules to be there. I was just hoping for stable disease. darn, darn, darn!!!!!!

Kellie, Stage IV since June 2008.

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Noramott's picture
Replies 7
Last reply 1/20/2011 - 4:35pm

I was just on here a couple of weeks ago asking for help for a friend that was diagnosed.  My husband passed away with melanoma 7 1/2 years ago, my mother passed away with it 37 years ago, my sister had one removed 17 years ago and thankfully is still with me.  Soooo, I go to the dermatologist every 3-4 months as a precaution because of the history and I have two kids, ages 15 and 12 ( the 15 year old already has had one removed between his butt cheeks...not a good experience for us or him).  Anyway, I went today and he removed a basal cell one, he thinks, but then said he has been wrong before and if it is a melanoma, it was caught early.  I wasn't worried.  I know that catching it early is the key, but all of the sudden it has hit me.  OH MY.  So pray.  You all don't know me, but just pray...for my kids....I am not scared, but then again, kind of.....................

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Anonymous's picture
Replies 28
Last reply 1/3/2011 - 8:33pm

How many people here with melanoma also  have red hair, blue eyes and have fair complexion? Just curious about how many actually fit the stereotype for high risk of melanoma. I have read it has something to do the with melatonin. Thank you

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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I have a friend who is stage 4....been complaining about pain in her gut since spring and her onc and pcp always caulked it up to something else other than melanoma...well now her scans are in and finally they have decided its a 5 inch spot of melanoma....they are talking surgery...wondering about something...can they radiate the intestines? She is weak and no longer in the chemotherapy trial ( heavy duty stuff)...just wondering...

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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KellieSue's picture
Replies 3
Last reply 12/30/2010 - 7:30pm

After finishing my second clinical trial(ALT-801) on Dec. 17 I had my CT scan on the 28th.

My neck nodules all look stable(thyroid involvement) but there seems to be some new lung nodules in both sides. We're not sure if they were there before, we never saw them but they could have been small I guess?

My oncologist seemed pretty bummed considering after my 1st trial I had immediate response, everything was either gone or very much shrunken.

He's not completely convinced the lung nodules couldn't be acting up in response to the treatment and with my next set of scans in 4 weeks could be completely gone. I'm really really really hoping that is the case as my neck has gotten swollen on the outside qutie a bit since finishing treatment and that doesn't seem to be bigger at all on the scans.

It's just a little hard to take to hear there are some new things on the scans when I just finished treatement. I have my Brain Mri today just to rule that out. Of course I've been convinced as of late that I have something in the brain. Some little headaches that come and go, forgetfullness, writing the wrong check to the wrong person with the wrong date. I know all of these things are normal everyday occurances, it just makes my mind go to bad places when I'm dealing with this crap. I know you all understand where I'm coming from.

Anyway, headed to brain mri now, hoping that this is all a product of swelling and the treatment still working. Thanks for reading my novel.

 

Kellie, Stage IV hoping to be NED?

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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