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.

Expand/ Collapse Topic
 
Replies By
View Topic
stanscott's picture
Replies 1
Last reply 6/5/2011 - 2:02pm
Replies by: Carol Taylor

I did see the Derm on Thur. Found a Basal cell on shoulder and possible mm on leg will know more in a week or so. Thank you for encouraging me to go. Now seeing the group at Wake Forest Baptist.

Stan

Music is the river that navigates history.

Login or register to post replies.

Vermont_Donna's picture
Replies 20
Last reply 6/16/2011 - 3:52pm

Hello MPIP family,

King posted under a different thread about our friend Sharyn, but I thought I would start a separate thread for Sharyn. With tear streaming down my face, I just read about her passing today. Sharyn and I developed a special friendship, and exchanged many emails. Someday we planned to meet in Montreal with Val, and have some fun times. I HATE this damn disease!!! Sharyn, my friend I will miss you so much, you are in my heart forever. My sympathy to your loving family and friends.

Vermont_Donna

ps I was unable to cut and past the family email and obit because I am an idiot with computers but you will find it under the question about Sharyn and Val, and King kindly posted it

Login or register to post replies.

Hi everyone,

On June 4, 2000, I became officially Stage IV with a lung met.  It was resected, and I was blissfully NED until this February, when I was diagnosed with multiple bone mets, a couple of sub-q's, and  a nodule in the lung.

I won't kid you, the news was a bummer - after all those years I was thinking MM was in the past, and that something else was going to be the end of me.

But I got my act together, and contacted my old guru Dr. O'Day (now at the Angeles Clinic in LA).  After a lot of poking and hoop jumping, I qualified for the BRAF/MEK combo trial.  I'm now starting my 4th week, with very few side effects.  The funny thing is that my bone met symptoms, as well as my sub-q's, have disappeared - even before I started the trial.  I'm taking this as good news - I'll get scans in 4 weeks, hopefully these will confirm the disease is in retreat.

I used to post annually on my anniversary date, not to brag, just to tell people that this is surviveable.  I'm doing the same this year, and hope to keep on doing it year after year!

Best wishes to all,

Harry

Too ugly to die!

Login or register to post replies.

Lisa13's picture
Replies 5
Last reply 6/5/2011 - 8:53pm

Monday is my follow-up scan to see if any of those tiny nodules on my lungs have changed. I'm hoping they havn't since no change can be a good thing, especially when they're too small to tell what they are. That being said, 2 weeks ago I completed my blood work which was normal - my LDH was 181 and on April 28th it was 166.  Is this still normal?  Can having a normal LDH mean that melanoma isn't spreading or present in large amounts?  Obviously I'm thinking a million different things right now due to scanxiety, so any explanation would be helpful.

I really hope like alot of you that these nodules won't be there, won't have grown and if still there, will continue to not change for years.  If the plan changes, then I deal with it.

Lisa

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 6/5/2011 - 6:26pm
Replies by: Vermont_Donna, ValinMtl, King, Terra, Anonymous

Anyone heard how both these 2 wonderful ladies are doing.

Iam a little concerned because they have not posted  for a long time.

Jamie

Login or register to post replies.

Lois54's picture
Replies 1
Last reply 6/4/2011 - 4:04pm
Replies by: NancyGM

Good morning--one of my friends posted this on my facebook. It is produced by DCMF in Canada, titled "Dear Sixteen Year Old Me"----very powerful!!!

http://www.youtube.com/user/DCMFCanada 

Login or register to post replies.

Nebr78's picture
Replies 9
Last reply 6/11/2011 - 10:29am

Well, I opened my big fat mouth when it would have better to keep it shut.  I am the guy that has a friend that knew 2-3 persons that went to Mexico and came back supposedly cured.  (I got some emails that were quite disagreeable with my statement, quite disagreeable.  Thats ok.

My friend has reported to me they found a tumor on the neck of one of them.   They biospied it and he has  Mr. M. on his thyroid.   Friend said the guy spent $30,000 for what.

I apologize for maybe upsetting some people.  Of course it don't hurt to stir the pot once in a while.

The United States is not curing many people either.  I have 8 more radiation shots on the melanoma that has entered my spine.  Don't know how much chemo I have left.  I still can't help think there should have been a cure found by now, or at least  a treatment that will slow any and all Melanoma down promptly.  I  am having a bit of trouble getting a copy of my previous 2 ct-scans, one 6 wks. ago and the other maybe 9 months ago.  I want pictures of them.

I wish I could post the image that was made for me of the last scan.  And the  answer as to why in the h__they didn't start this radiation sooner. (Maybe someone sent them to Mexico????????) It is a darn good picture of the mass, spine, and aorta.    Thankyou

Login or register to post replies.

see:  http://www.oncologystat.com/news/Bristol_Roche_Finally_Start_Combination_Melanoma_Trial.html

Best wishes and prayers to all that this might help to fight the "beast".

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Here is an interesting abstract about GM-CSF:
http://abstract.asco.org/AbstView_102_84329.html

For more info on this drug that seems to have many names, including Leukine see:
http://www.chemocare.com/bio/sargramostim.asp

Best wishes

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

Login or register to post replies.

Replies by: nicoli, gabsound

OMG! I LOVE IT!

I'm sitting here reading a book, with a sappy movie on in the background, and I hear this commercial come on TV about "so why are you dying for a suntan?".  So I immediately hit rewind so I can watch the whole commercial (thank God for DVRs). 

The commercial is pulls NO punches, and the visual is simply awesome.  While the voice over talks about all the things the viewer is doing to stay healthy, it pans over what looks like a closed coffin.  The coffin then opens to reveal a woman in a bikini lying in a tanning bed!  The commercial then very clearly states SKIN CANCER KILLS!!!  The commercial also refers people to a link on the Style Network's website for more information on skin cancer.

While melanoma isn't specifically mentioned, I absolutely LOVE that the commercial is so "in your face" with the tanning bed and that skin cancer kills.  And I got an even bigger "giggle", if you will, that the commercial is on the Sty!le Network - and in prime time no less!  How perfect is that?

BIG WIN!

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

Login or register to post replies.

Becky's picture
Replies 8
Last reply 6/5/2011 - 8:42am

Ben had a Pet scan yesterday and my mom scanxiety was in full force. He got the news today, all clear :)

Kepp fighting, everybody

 

Becky

Mom to Ben, age 22. Oral melanoma (tongue) stage 3, one year of interferon. 23 months NED

Login or register to post replies.

FertilityDoc's picture
Replies 4
Last reply 6/4/2011 - 9:15pm
Replies by: King, Carol Taylor, lhaley, awg

I just had my now biannual CT scan. Nothing of note to be found. The conditional survival curves tell me the numbers are looking a little better even though I know there is guarantee. I was diagnosed with Stage IIIB Melanoma in 04/2009. Had 2 positive nodes with microscopic disease but an ulcerated lesion. Had 2 weeks of the pity party but then moved on. I cursed the Meyer-Kaplan curves did. I know my tumor biology would determine the future and I have no control over that. It is the luck of the draw. I did the full year of interferon. Now 2 years later I sleep peacefully. I read the posts here at least once a week. I have to stay vigilant and read on the subject. None of know what the future holds. Sometimes I get teary eyed late at night when I read the heart wrenching stories here. My heart goes out to all desperately fighting for more time with their loved ones. One of reasons some of us come here is to read about the success stories. Hope is our most powerful ally. I post here today to remind everyone there is hope. Don't give up. Hug those close to you. None of us know what tomorrow will bring but treasure the day.

Login or register to post replies.

LynnLuc's picture
Replies 8
Last reply 6/4/2011 - 5:29pm

I had my appointment with the ophthalmologist today...Dr Weber wanted me to go to one because I was having vision issues...now I know I am just getting old...and the fact my allergies will not ho away way down in sunny, humid and moldy Florida.  The anti PD 1 drug can cause blindness on rare occasions so we wanted to be sure my eyes were ok.. The eye guy says I have very healthy eyes,lens are clear and good, the nerves are great, the pressure is good and all the other stuff inside my baby blues are handing life very well. I have 20/20 for far away and I need plain old readers  to read close up...

Driving home was a challenge though..eyes dilated and numbing drops still in full effect  in them...sun so bright  it was like standing with a search light in my eyes...put on amber sun shades and drove slow all the way home. Went off the road a few times and had a laugh at my self because if the cops would have pulled me over...here is a social worker who had the biggest pupils ever...I bet they would have had me do a pee test right on the side of the road! 5 hours later and they are still wacked out!

Aw... the windows to my soul show nothing going on...tis good news! On the 8th ( Wednesday) I get the scans, blood work and visit Dr Weber and if I am NED still I go on to  take my first booster IV of anti PD 1 since the trial 3 months ago.

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"

Login or register to post replies.

sheri47's picture
Replies 1
Last reply 6/3/2011 - 8:03pm
Replies by: LynnLuc

 i know with breast cancer once you have radiation you cannot have it again in the same spot, with my mom the offered radiation for pain and to shrink the 3 masses  my question is if the masses grow bigger after rads can she have it again for pain control

Login or register to post replies.

chenrydh's picture
Replies 6
Last reply 6/5/2011 - 9:56am
Replies by: chenrydh, Gene_S, Vermont_Donna, nickmac56, Anonymous

HI there - I will be finishing up my 4th infusion of IPI on the 8th of June, then will be following up with the scans over the next several weeks.  If the IPI has worked does anyone have any idea how long it would be inbetween time in order for me to do it again?  I've been told my other patients, as well as my drs. that the IPI has shown to have worked far after the last infusion so wasn't sure if it would be given again or I'd go into a wait and see pattern.  With melanoma and how fast it spreads I just am concerned about the length of time especially since I have mets in my brain and lung.  Thanks and to all who are dealing with this terrible disease stay strong and know that so many people are praying for you.  <3  

With God all things are possible. Never, never, never give up.

Login or register to post replies.

Pages