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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Vermont_Donna's picture
Replies 3
Last reply 12/10/2010 - 5:27pm
Replies by: Fen, ValinMtl, lhaley

Hi,

Got the wound vac yesterday....need to have the dressings changed M-W-F.My leg already feels better with this "negative suction". I also was seen bythe hyperbaric oxygen chamber treatment doctor...I am a good candidate for this too...can do both. The new chamber has a clear top so you can see out and you can watch a movie. The old one has a solid top and you can only listen to a book on tape...that would be ok with me too, but being able to see out for me would be good. Plus I would need some ativan!

I am going to see another oncology surgeon at DHMC who is from MD Anderson...see what he might think about my course of treatment, what other suggestions since, amputation seems to be so popular among my docs. (Not me).

I have found three new melanoma spots on my leg, so am feeling discouraged. Thank God I am doing Ipi! I am going to see a naturopath for some different ideas and see what I can blend in to what I am doing.

Thanks for listening everyone!

Vermont_Donna

stage 3a

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Lori C's picture
Replies 1
Last reply 12/9/2010 - 9:51pm
Replies by: washoegal

I am continuing to read this board and praying for all of you fighting this disease.  I am having a rough time since losing Will, as I had no idea what it was like to lose someone as a caregiver.

Before Will got so ill last April, we had just begun  working on a film project about his life - we'd hoped melanoma would be a bump in the road.  It turned out to be a wall that we could never quite get past.   Will quickly became too sick to continue with the project.  I had already written a number of articles about him and his remarkable spirit and courage and life, and am trying to continue work, this time on a book. 

I am trying to capture and describe the emotional pain of this illness and finding myself at a loss.  If anyone on this board would be able and willing  to contribute their thoughts on this subject, I am asking you to please email  me at Brennan07 at aol.com 

No one's name or identifying information will be used unless you specifically ask that I do so, in which case I'd be happy to oblige.  This board was my support during Will's fight.  Will, though, was quite isolated except for me, until someone from this board read about him and offered to talk to him.   As I've mentioned, he was a person with a disability (labeled mildly cognitively impaired, a label I thought was very inaccurate - he'd had what was likely a prenatal stroke and suffered a series of misdiagnoses and educational malpractice experiences).  For months, I tried to find him support through various organizations - all the likely suspects, and then some.  I could not.  I could not find support groups or a therapist who would take him on.  The person from this board (and if you are reading this, I can never, ever thank you enough)  was the only other person with melanoma he'd ever met, and was an immense blessing.  But the emotional toll of this disease was devasting on both Will and me.  I want to make sure I write about it with the respect and accuracy it deserves.

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scots's picture
Replies 7
Last reply 12/10/2010 - 11:54pm

I finshed the HD interferon on Monday.   That was a tough 4 weeks.   I still feel almost as bad as I did while takeing the HD.    I'm getting ready to start the 11 month low dose regiment which I'm not looking forward too.  Hopefully the LD will not be as bad as the HD.

 

Scot

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MomwHorses's picture
Replies 30
Last reply 12/17/2010 - 5:17pm

So as luck would have it, yesterday I decided to wear a short sleeved shirt on a 20 degree day for my appointment with my gynecologist because I wanted to minimize my weight.  As I was washing my hands that morning I noticed a purple spot on my arm - I tried to wash it off.  Then I realized it was not going to wash off.  So I immediately think "skin cancer" since the spot doesn't look like anything I've ever seen before.  Later my gynecologist says the spot "gravely" concerns her and to have it biopsied immediately.  Fortunately I was able to do so today.

However, the dermatologist  wasn't very talkative.  He really doesn't want to say much until the results come in.  But I'm thinking he knows whether it's likely to be cancerous.  Thankfully I did think to ask, "Well if it is cancer, what type would it be?"  To which he replied "Melanoma" and quickly started talking about something else.  So, my questions are - If it is melanoma, how fast does it get to stage 2?  I feel fairly certain of these results since the doctor could identify actually what type it would be by it's appearance..  I looked at my pictures from this summer and the spot was there in July - only smaller.  It measures 6 mm by 10 mm. 

So, can the size determine how likely it is to have progressed?  Can having had the spot for over 5 months mean it's most likely to have advanced if it is melanoma?  Or is more than 5 monhts not so long, and 6 x 10 not so big?

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Anonymous's picture
Replies 1
Last reply 12/12/2010 - 11:34am

http://www.clinicaltrials.gov/ct2/show/NCT01248936?term=ml25597&rank=1

 

Patients must have the BRAF V600E mutation, failed prior systemic treatment and no symptomatic brain mets.

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Everymoment's picture
Replies 9
Last reply 12/9/2010 - 10:35pm

Hi guys,
So I have had four primaries and I feel like I am just waiting for something to go wrong. One cell had to have gone through. Why is it that a 9 year old has to have melanoma in her brain and I am still here? I wait each and every day to feel a swollen lymph node......it should be happening to me...I had vulvar melanoma .... I just don't get this disease.....will it wait until I'm happy and I have my first kid to strike !!!!! When!!!! I'm ANGRY that this has taken over my life....I actually think about whether I will make it through a Phd program if I start...Errrr.
Everymoment

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BarbieGirl's picture
Replies 29
Last reply 5/17/2014 - 11:38pm

Diagnosed on my 39th birthday (in October), and had the wide-excision on Dec. 8, 2000.  There was melanoma in-situ found, but the doc got the margins.  (I would have preferred NOT to have had any mel show up in the WLE, but that's the purpose of it!) 

Never, ever, ever did I believe I'd still be alive and kicking today.  I didn't change a thing, other than appreciating life better and not taking things for granted.  I eat what I want, I like a little coffee with my sugar and cream, I'm a coke-a-holic (the kind you drink, not snort!),  I smoke, take lots of meds, get very little exercise----you know, all the BAD things.  Figured if I was gonna die, I was at least gonna enjoy my time left.

The only thing I asked God for.... was to let me live long enough that my grandkids would remember me.  They're now 4-3/4, 5-1/2, 9-1/2 and 11-1/2. (You know how important those halves and quarters are with kids ages!! haha!)  Thank you, God, for allowing me to still be around!

Guess I'll be around to annoy ya'll a bit longer!! =)

*hugz* and love to all who have followed my decade-long journey!!

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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My oncologist is sending me to  Lee Moffitt Cancer Center in Tampa FL, was wondering if anyone has been a patient there, any good Dr. referrals?

Thanks for any info :)

Pennie Mills

embrace the positive

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Rocco's picture
Replies 10
Last reply 12/9/2010 - 2:19pm

Time again for my 3 month CT and MRI this Saturday. I have more than the usual amount of anxiety this go round given the stories in the news and a close friend of ours loosing her battle.   We were blessed last month that my husband's scans (kidney cancer) came back clean.  We're hoping to make it 2 for 2 with mine.  That would be the best Christmas gift of all.   Any of your good vibes or prayers would be welcomed at this time.

-Rocco, Stage IV since Aug 2005

Luke 1:37

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lhaley's picture
Replies 15
Last reply 12/10/2010 - 10:35pm

2 months ago I had surgery for 2 different sites.  Today I had PET/CT scan.  This time they found a tumor in the right lung, actually 2 tumors. One was stable from previous scans (didn't know I had any before!!) . The other doubled in size but is still small. .6 x .7 cm.   Too small to biopsy, too small for trials. In 3 months they will rescan and make decisions. 

We looked back at previous scans and in retrospect it could be seen as a spec in Sept. of 09. I guess the good news is that it's slow growing.  Meanwhile I got back the testing on the tumor that was removed and I am B-raf positive.

My history is a bit unique. For those of you who don't know I was originally diagonsed in 79' with my first recurrance in 06. Since then I've had 1 recurrance in breast, 2 in bladder, 1 in lymph node under clavicle, 1 in lymph node in arm and now this. Because my immune system has slowed everything down, my mel specialist is leaning towards immunitherapy at this point to give my system a boost.  I guess dicisions are being made in 3 months.

Sure wish I could have been happy dancing tonight.

Linda

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/12/2011 - 12:54am

Hi All

I am interested in any feedback regarding the GSK BRAF/MEK combo trial. Anyone in this trial??? What are the side effects & how are you managing them?? Thanks so much for your feedback.

http://clinicaltrials.gov/ct2/show/NCT01072175

 

Wishing everyone a lifetime of NED

Jan

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Replies by: Anonymous, molly

I had the CLND from under my left armpit and am recovering well. I HATE the drain tube but getting used to it I guess.  I go back on Dec 13 to get stiches out of WLE and tube out.  The Dr. called yesterday and said no Mel showing up on PET scans and blood work good. One thing he said that there was some scarring on my lungs that could be from pneumonia or other infection. I have never had pneumonia that I know of so that was curious. I have a call to talk with them again to see what could be causing the scarring.  We meet with oncologist next Monday as well to discuss further treatment.

Live life to the fullest and enjoy each day!

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Simmy from Oz -Melbourne's picture
Replies 5
Last reply 12/8/2010 - 4:26am

What side effects have patients been suffering while on Ipi?  I am getting severe stomach (lower stomach) cramps and pains and bloating.  I look like Im pregnant, and can barely stand up straight from the pain.  I was constipated, but have taken plenty of meds for this and am going to the toilet now, but the cramps and bloating isnt easing..  it is sooo painful, dont think ive ever experienced such agony :-(   Has anyone else had this problem?  Thanks guys x

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jolainajo's picture
Replies 2
Last reply 12/6/2010 - 9:32pm
Replies by: glewis923, MaryMary73

Hi Everyone,,,, I need some posativitiy in my life... Well, to tell you a little about myself, I am Stage IV diagnosed 1 yr ago. I have been through IL-2, didnt work, went to Maryland at NIH in June, went through everything that Kevin has described, and it spread to my brain. In Sept I had stereotactic done and now I see things, and I feel when its coming,, When I say see things, I see this round circle that beats with my heartbeat and is a rainbow. I have talked to my oncologist and they say its from the radiation I had gotten so I try to let it go. Now Im on Ipi and I go for my third infusion on Friday. I just found out on last Thursday that My Medicaid is now being closed and I will have no health insurance, well... they gave me a 500 a month spend down which means that I have to pay for the first 500 and then medicaid will pay, but this is all because I got disablility, at 1000 a month. Im frustrated. I was a Dental Hygenist making good money 2 yrs ago, now Im not working, and have all this stuff going on, and now... Christmas is here. Dont get me wrong... Im glad just to be here, but, Im depressed, Im sad, and I have these stupid tumors that are a constant realization that I have melanoma. Its getting hard to even sit because I have this one tumor on my leg that is HUGE>>>>  it hurts and I have to pretty much live on ibuprofin. I guess I come on this website to see that Im not alone, even though I feel like it, I know that you all are living with this monster too, and Im not going to give up so easily, I guess I need some support,  Im scared, and I think about how I dont want to go, and I think about my kids who are 15 and 11, and my husband, and it all makes me cry, and somedays I do cry, alot. But, I try to not think. I guess this is what it is... right.... well, if you have any words of encouragement I need it, or ways to help that you have done to get through this whole financial crap with insurance, or just to let me know you know. how it is... Please... well.. thank you.. Jolaina

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I have been in touch with a reporter who has written extensively about the Plexxikon/Roche BRAF inhibitor.  The next and final article will focus on people who have taken this drug and had an initial response, but now have developed resistance.

If you fit this criteria and are interested in speaking with a reporter please drop me a note and I will pass your contact information along.

Thanks

 

Tim--MRF

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