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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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.

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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

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FormerCaregiver's picture
Replies 9
Last reply 6/5/2011 - 12:47am

Here is my updated list of some of the most promising treatment options (depending on
eligibility criteria). Although I have tried to list them in order of efficacy, I am
really just making some educated guesses here.

1. Adoptive cell therapy (also called TIL treatment). It looks like this offers the
greatest chance of achieving durable remission in some cases.

2. GM-CSF (Leukine) together surgery when needed. Some long-term melanoma warriors are
using this approach.

3. Yervoy (ipilimumab)
4. BRAF and MEK inhibitors
5. IL-2
6. Other treatments such as chemo and biochemo.

The biggest problem that we face in trying to decide on treatments is a lack of reliable,
unbiased, and up to date information.

The other main thing to keep in mind is the medical term "overall survival". As far as I
know, only adoptive cell therapy and Yervoy have been shown to improve this in a
statistically significant amount of patients.

I look forward to your comment on the above.

Best wishes

Frank from Australia

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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.

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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"

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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 

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Carol Taylor's picture
Replies 16
Last reply 6/4/2011 - 3:41pm

Carolb's sister-in-law posted this on Melanoma Prayer Center's wall less than 25 minutes ago:

brother just posted this...AT 10:35 her BP was79/65, at 10:45 it dropped to 61/22, at 10:55 it dropped to 48/30, they put her oxygen back on her and now at 11:00 its 51/27

Please lift her up.

Lord, in Your mercy, we lift CarolB to You. See her thru this and hold her family. Amen.

Grace and peace and sorry for how small that copied/pasted,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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boot2aboot's picture
Replies 8
Last reply 6/4/2011 - 3:15pm

More mel was found under my armpit...seems to remain local...found out this new info while in hospital for port placement ...new consences urges more surgry with radiation and biochemo after....or something stronger if it has spread....won,t rescan until surgery and rad is done....last pet was may 17...
Boots

don't back up, don't back down

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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

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Geez................  trying to research and be proactive is important but time consuming.  :-)    Since I'm less than 2 months in on this MM journey, I can only imagine how much time and how many questions have already been spent in the proactive research phase by other patients/participants on MPIP.  

I spoke with a clinical trial specialist today and the only clinical trial in my area is one with high dose Interferon, so I will speak to my oncologist about it.  I know there are both pros and cons regarding Interferon, and I am in daily prayer asking for guidance about making the right decision.

Molecular profiling (utilizing the Target Now program) was also mentioned.  Has anyone participated in this?  If so, was the information gained beneficial to your treatment?

Sharon in GA, stage III

~ Life may not be the party we hoped for, but while we're here we should dance. ~ (Unknown)

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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.

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I start my first ever treatment for my stage IV melanoma on Monday, June 6th at California Pacific Medical Center with Dr. Wang and Dr. Minor.  The regimen is IL-2 + interferon + 3 chemo drugs.  Here's a link to a whitepaper that helped to convince me to go this route.  http://theoncologist.alphamedpress.org/content/14/10/995.full  That, and the fact that my mutation is wild type NRAS Q61 so the new BRAF stuff isn't available to me. Although I like the approach of TIL therapy at NIH, I do not have a big enough tumor for them to work with, just many in the lungs, one lymph node and a bone met on my rib. 

Choel, username boot2boot on this board, started her biochemo today at a hospital in Ohio.  I spoke with her Tuesday and she seemed to be doing pretty well, but about as fearful as I am of the treatment.  Are there any veterans out there of biochemo or even IL-2 who can chime in and help me get my head into a better place?  I will be sure and post my experience as soon as I am able.

Thank you in advance for your comments.  This board has been invaluable to me.

God Bless.

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Charlie S's picture
Replies 21
Last reply 6/3/2011 - 11:03pm

Over the past few months, several marketing companies have recruited people via the bulletin board to participate in paid marketing research.

Three questions.

Did you respond to the post, did you participate and did you get paid?

I am somewhat concerned about patient exploitation occuring here that benefits commercial enterprise.

No, I do not work for the MRF, but I do suspect pharma creeping in here and I do not like it, and it needs to be rooted out on any  patient forum before it takes seed.

Charlie S

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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).

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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

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