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
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

Login or register to post replies.

Hope Returning's picture
Replies 1
Last reply 12/14/2011 - 5:28pm
Replies by: Anonymous

I read a post that someone made contact with Dr. O'day. Is there a way to consult with him on a urgent matter by phone? Where will he be? Anyone knows what happened to him and how come he didn't return to the Angles? Email is not suitable for urgent medical consultation, so is there any way to otherwise contact him?

Login or register to post replies.

Hope Returning's picture
Replies 3
Last reply 12/14/2011 - 2:17pm
Replies by: JerNYC, Anonymous, FormerCaregiver

Anyone has platelets fall as a result of Ipilimumab? If so, what was the treatment and was it long lasting?

Login or register to post replies.

MariaH's picture
Replies 10
Last reply 12/14/2011 - 7:01am

I am wondering if it would make more sense to do a "debulking" of tumors prior to systematic treatment.  It seems to me that the smaller the tumor burden, the better the chance for a durable response.

I realize that by removing tumors via surgery there is always the residual disease, but even if you can't remove all of them, wouldn't it make sense to get the majority out?

Just throwing this out there -

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Anyone has platelets fall as a result of Ipilimumab? If so, what was the treatment and was it long lasting?

Login or register to post replies.

I read a post that someone made contact with Dr. O'day. Is there a way to consult with him on a urgent matter by phone? Where will he be? Anyone knows what happened to him and how come he didn't return to the Angles? Email is not suitable for urgent medical consultation, so is there any way to otherwise contact him?

Login or register to post replies.

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.

Login or register to post replies.

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)

Login or register to post replies.

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

Login or register to post replies.

Lisa13's picture
Replies 5
Last reply 12/12/2011 - 10:36pm

I just had gamma knife for 2 brain mets almost 1 month ago. I've had no symptoms so far, but my eye feels weird which happens to be on the same side as the larger tumour. Maybe this is the effects of radiation or maybe it's part of a sinus infection I'm being treated for (on the same side). My eye started out with slightly swollen eyelid and tearing - that went away, but now the eye feels weird. No double or blurry vision, just weird, like something isn't right - the vision is weird at times. The Dr. said if I get much worse (antibiodics arn't working), then I'll probably have to go on steroids as it may be imflammation from radiation. Has anyone had this??

My Dr. doesn't seem concerned about another tumour in there, but I guess if things got worse, we'd be more inclined to check.  My oncologist was a bit surprised that the radiologist never gave me any steroids after the treatment - especially since it was 2.5cm.  I think because of it's location, he didn't think I'd run into a problem (not near anything).

Also read 2 articles about brain mets and ipi/zelboraf. Apparently when you get brain mets, the brain/blood barrier becomes less intact making it easier for these drugs to go inside.   This actually seems like good news to me.

Lias

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

himynameiskevin's picture
Replies 16
Last reply 12/10/2011 - 7:48pm

Hey everyone.
There's not too much to update on, but it is another milestone in the journey, so I figured I'd let it be known for readers who still follow my posts. I just did my first dose of Ipilimumab/Yervoy. Although it's only been 5 hours, so far so good, hopefully any side effects will be minimal and I'll continue on with my future doses. And if I'm lucky it'll turn out all my cells from the ACT needed was one the last little *oomph* to clear these things out. Gosh that would be nice... We'll see, I'll keep you updated as I'm updated.

Thanks for the continuing concern and support.
I'll talk to you soon.
-Kevin

Login or register to post replies.

Pages