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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hope4cure1's picture
Replies 5
Last reply 12/15/2011 - 5:06pm

    Hi everyone.  My husband's PET and CAT were still clear today. Last January he had 4 mets to liver, and 2 lymph nodes in his chest ilit up.  He started on a Carboplatin/Abraxane/Avastin combo.  He tolerated the treatments well and was able to ski most of the season.  In June, he stopped the Carbo due to a reaction and continued with the Abraxane/Avastin.  In July, his scans were clear.  September they were clear.  He stopped the Abraxane in September.  The scans today were the first "flying solo" with Avastin, and again the scans were clear.

     Chemo might not be for everyone, and might not have a high response rate.  However, I wanted to give some hope to anyone whose doctor has suggested chemo as the next step.  It isn't necesarrily the "last step".  This was my husband's first line of treatment, after sugery to remove lung mets in late 2010.   My husband is BRAF negative.  He was just tested for NRAS.  Dr. Boasberg wants that info in case we need to consider an inhibitor in the future if the Avastin is unable to hold the line. 

     All I know for sure is that I am incredibly grateful that we are celebrating another Christmas with our family.  I wish a peaceful holiday season for everyone who has been touched by illness and loss.  Although I haven't met any of you, I feel like I know you through your posts and hold you in my prayers.

Hope

Become what you admire.

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marfda's picture
Replies 9
Last reply 1/17/2012 - 3:28pm
Replies by: ad2424, NYKaren, kylez, marfda, Anonymous, Karin L

I am finishing radiation of my lower back for subq tumors tomorrow! Unfortunately, my PET scan showed tumor activity in my groin and armpit lymph nodes. This is my first non local and non subq activity since my diagnosis in '09. My oncologist is recommending IL-2 beginning right after Christmas. He wants to give it a shot before my cancer is any further advanced. I am happy to take a more agressive approach, although it is going to be tough to schedule all the details with caring for my 5 and 7 year olds. A few questions for you IL-2 veterans.

1. Is this treatment really given in the ICU? I know every hospital is different, but how did this limit visitors for you?

2. How important is it that I have someone with me? Would part time be alright? Will this be traumatic for the people who accompany me?

3. I had a port for interferon and am having it "re installed" (i'm sure that's the wrong term!) :) Will they put it in the same place as before?

4. Any other advice? I'm sure I'll come up with more questions later?

5. Oh! Did anyone else have IL-2 in Tucson? I'd love to ask some UMC specific questions!

THANK YOU ALL for you insight and advice! 

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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deeczar's picture
Replies 1
Last reply 12/12/2011 - 9:58pm
Replies by: Vermont_Donna

Hi..

I'm suppose to have Isolated Limb Infusion at MD Anderson in a few weeks and wondering if anyone on here has had it done..Just looking for info on what I might expect and so on..any info would be appreciated...Thanks Dee

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Jim M.'s picture
Replies 4
Last reply 12/14/2011 - 8:03pm

Hi everyone,

 Interesting events in my health lately. The last 3 months I lost 10 pounds, and I've had abdominal pain. I saw my doctor, Dr. Weber, who sent me to the lab for blood work. Later that day he called and informed me I have hyperthyroidism ( an overactive thyroid). About 6 months ago I had borderline low thyroid function. Dr. Weber believes the overactive thyroid is a late side effect of the Ipi I was on. I've been off it since Oct. 2008 when my pituitary gland was compromised. So this week I get to do a 24 hour iodine uptake to see exactly what I have. I could have thyroiditis, Graves disease or Hashimoto disease (or I don't know what else).

 If it is Ipi/Yervoy I wonder when the side effects stop? I'll let you know what I have. Who out there has overactive thyroid? Any advice? Hopefully I'm looking forward to a little weight gain.

 God Bless,

 Jim M.

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My father is 85, Stage IV and last year was able to do the Yervoy trial on a Compassionate Use grant.  Due to the severe abdominal issues, and his being stuck in a wheelchair due to a spinal surgery, he had drop out after only two tretments.  Luckily, it worked for a while, he was cancer-free for nearly a year.  It came  back and he has been on the BRAF/MEK trial for six weeks or so.  Lately his mental status took a dive, wasn't even able to sleep, very agitated and completely confused/wacked out.  They thought it might be a calcium issue but now they feel it is low phosphorus and he is going to have to stop the BRAF/MEK treatment.  Has anyone heard or had any experience with a dementia from the medication?  I'm hoping the treatments he was able to have may work, as before, for at least a number of months if not longer.  But I am curious to see if anyone else had similar experience or symptoms.  Also interested to hear if anyone stopped treatment early and still had any positive outcome.  Good luck to you all and thanks for any light anyone might be able to shine on this for me.

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NYKaren's picture
Replies 6
Last reply 12/12/2011 - 10:48pm

Hi everyone,

I finished my second round of IL-2 LAST Sunday and returned to work part-time today.

What a rough treatment.  They were shocked that I finished all 8 bags (Yale-New Haven has a different protocol--it's a different dosage and fewer bags). 

When I went to Dr. Sznol for check-up the Thursday after the Sunday I was released, he says that's always when he sees people at their worst.  I felt like someone had run me over with a truck and hung me on a peg to dry.  

Having said all that, I'm much better today and plan to start working full time on Wednesday.

So before I went in we knew that the nodes that had lit up on prior PET's don't light up anymore.  A lot of the mel is gone from my face, so we know that I'm at least a partial responder.  Unfortunately, I continue to get small spots...going to see Dr. Halpern (derm @ Sloan) hopefully next week and lining up a visit in 1 month for some punch biopsies, then scans.

They wanted me to get into the Gentech anti-PD1 trial, but interestingly, it does not include the "stage III unresectible"...it's strictly for Stage IV.

Dr. Sznol also told me that GSK will be doing a Phase 3 anti PD-1 trial in about 4 months that I should be able to get into.

So now it's wait and see & pray that I stay at IIIC for the next 4 months.

That's it for now...take care my friends.

karen

Don't Stop Believing

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j.m.l.'s picture
Replies 3
Last reply 12/13/2011 - 4:49pm
Replies by: boot2aboot, dearfoam, paul

I have an inoperable tumor lying an artery. Been on IPI for 3 doses. Did not stop this tumor from growing. Cannot operate because of its location. Doctor wants to try Temodar to shrink tumor. HAS ANYONE USED THIS CHEMO DRUG. I NEED FEEDBACK PLEASE.

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deardad's picture
Replies 7
Last reply 12/12/2011 - 4:01pm

Wow, just back from the oncologist and my dad's MRI came back clean. What a small victory for now in this aggressive battle.

6 months post craniotomy his brain is still clean...might be the Vemurafenib or just plain luck that it hasn't gone back there. Dad's oncologist is fresh back from the recent conference held in the States and he said there's a lot in the pipeline in regards to new trials. I know I learn more here than anywhere else and I'm thankful to all for that because he's pretty tight lipped about it.  Australia seems to be a little behind trial wise compared to the States.

Anyway the update is that he wants dad to stay on this drug for as possible then if the brain stays clean add MEK to the BRAF. After that maybe ANTIPD1 will be up and running here in Melbourne and dad may be eligible. 

Anyway just wanted to share some good news with everyone.

Take care

Nahmi from Melbourne

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wgalinat's picture
Replies 9
Last reply 12/13/2011 - 11:43am

It's Warren G. Just an update for those who know me or might want some questions answered about the clinical trial at NIH. Free feel to email directly at wgalinat@aol.com. I'm now ten years out of the melanoma discovery and five years out from stage 4 very tough clinical trial at NIH. In light of our friend Val passing recently I will say that when I went to NIH by comparison my cancer was not as advanced or developed as many others on the 3rd floor.. I was lucky to get through it and recover over time. I now know many that did not however. I've often said on here that NIH is a persons best option. I will say now I still think its a great option, the docs and nurses are great, the building is brand new so you just feel comfortable, will you know what I mean. There are lots of other options, many new drugs that may prove even better for you. Review all your options.
A bit on me. A year ago I moved to Las Vegas to be close to my son and his young family. Fun place, lots to do and I am a bit of a gambler. Following my NIH trial I was one of five of us that was left with kidney damage following the intensive full body radiation. After our study group they stopped zapping people with so much of it. I've been told that recently Dr Rosenberg has reinstated it. You can draw your own conclusion why. Most survivors have their immune systems reduced as well. This can be a dangerous over time, other cancers will have an easier time against you. They did against me. I had a few bumps on the top of my head. Got em tested. I got Merkel Cell carcinoma, a super rare, very aggressive cancer that's got no proven plan of attack study because it's so rare. In three months I've had four surgeries, two sets of radiation treatments. My head, my ear, and down my neck to my throat area. Worst news being the latest removed 17 lymph nodes, 15 were bad. The neck surgery had the cancer wrapped in my muscle which was stripped away from my nerve. Neck drain, etc. if you know me you know I don't quit. I never lose my sense of reality however. I'm in a dangerous zone. I don't get why I did get two killer cancers. I do get a chance again. I'm very grateful for the last ten years. I am hopeful for more.

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research)

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BrianP's picture
Replies 6
Last reply 1/11/2012 - 10:13am
Replies by: justlittleoleme, Anonymous

Anyone have a good understanding of the computer randomization for this trial?  Supposed to be a 50/50 randomization and looking for 1000 participates.  If every participate really has a 50/50 chance then what are they going to do when they have 500 people in the Ipi arm and only about 100 in the interferon arm due to all the people dropping out?

Brian

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alicia's picture
Replies 3
Last reply 12/10/2011 - 11:21pm
Replies by: deardad, jmmm

Hi friends, My friend i posted about early who is Braf positive just started zelboraf today.  He has a pretty high tumor burden with liver, spleen, lung and bone mets.  Is there anyone out there with similar situation on zelboraf and whats you info or advice you would give someone else on this drug.  what are the most common side affects, how long does it take to work, how often are you scanned to check for response? How long do you take the drug and can they increase the pills from more than 2 pills a day?  I truely appreciate your knowlege, experience, and advice.  Thanks so much!!!!

 

Much love,

Alicia stage 3 with mult primary tumors

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acyr's picture
Replies 17
Last reply 12/14/2011 - 7:11pm

Hello everyone,

I just received a call from Val's husband in Montreal to let us know tha Val passed away yesterday.  I am so very sadened by this news.  I had been in touch with Val for the last 4 years - she was just a wonderful and giving person - so full of life and enjoying her family and grandchild.  She was truly beautiful inside and out.  She never really got a break from this disease, but I never heard her complain or become bitter by her situation.  She kept fighting until the very last.  Most recently she had been on the TIL trial at NCI - she spoke very highly of the doctors and care staff!  She valued so much the support and community that she found here on this website.  I know she will be looking up our friend Sharyn in a better place and they will be able to enjoy each other's company with out pain or worry of disease.

Raise a glass or say a prayer in her honour - it was was truly an privelege to know her.

Annette

Chair, Melanoma Network of Canada

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mommydog's picture
Replies 3
Last reply 12/10/2011 - 7:03pm
Replies by: Richard_K, ipi in DC

My husband has been in the GSK BRAF/MEK randomized trial for 9 months now.  His last PET scan showed no evidence of disease.  I know that BRAF is not a permanent solution, but does anyone yet know about the long term prospects with the BRAF/MEK combo?  According to the oncologist my husband and one other trial participant out of the 14 in this trial had the most dramatic responses to the drugs.

I am thrilled, but keep waiting for the other shoe to drop.

Deborah

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Wetterhorn's picture
Replies 5
Last reply 12/10/2011 - 2:11pm

So, the last several months have been pretty crazy given the number of symptoms I've had post Yervoy treatment. Just a quick update here. For the past 2 months I have had a good amount of nausea and an overall feeling of lethargy. I finished 3 rounds of Yervoy in late August as the first symptoms began manifesting. The docs finally prescribed a brain MRI (2nd in 2 months) due to nausea, but it was clean. In celebration of this, I drank 2 beers the night before thanksgiving and woke in the middle of the night with pretty bad nausea. Thinking my liver met was getting quite a bit worse, my wife and I still decided to go our trip to Costa Rica for 11 days. For the most part, all was well, minus a bit of lethargy and mild nausea. I did avoid alcohol while I was down there. On Wednesday this week, had a CT scan, which was a 2 month follow up from last scan. Results yesterday were great as the lesion could not be found on the Liver. I am not ready to call myself NED, and those words were not used at all in my appt, but i'm pretty happy with the results.

Has anyone else had long lasting nausea after Yervoy? Just curious.

thanks

Wetterhorn

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BarbieGirl's picture
Replies 18
Last reply 12/19/2011 - 11:03pm

I don't come here much anymore, but for about 9 years, I was here every day.   I'm (still) raising 3 grandgirlies, and my mom has been here a while, too!  

My original surgery was in Oct--diagnosed on my 39th birthday.  The surgery I had 11 years ago still showed melanoma, so my NED date is today!  I am so blessed that I found this place, which was then called Melanoma Patients Information Page.   The information and support from here is incredible, and I'm blessed to have been able to meet many people, in real life and online, from this bulletin board!  Sadly, many are now angels.  But many more, from 11 years ago and beyond, to today, are not only still alive, but thriving!!  (Hey old-timers, give a shout-out!!) As NIcky said below (and is also celebrating 11 yrs. NED today), there is ALWAYS HOPE!!

I love you all and wish you and yours the most wonderful Christmas of all!  And Happy New Year!!!!! 

*hugz*

~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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