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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AlisonC's picture
Replies 6
Last reply 11/19/2011 - 1:59pm
Replies by: Lisa13, lhaley, fgilbert63

Hi wise MPIP-ers.  Asking again on behalf of a friend who - as you can imagine - has a lot on his plate right now.  He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last.  We are both working in Asia.  His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared.   His U.S doctor (Mayo Clinic) on the other hand,  says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.

If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice.  Do any of you have thoughts or evidence either way for this decision ? 

any and all advice and opinions gratefully received - with much thanks to those people who are still kicking mel in the face every day....

 

AlisonC

Stage IIIB

NED since 2001

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AlisonC's picture
Replies 1
Last reply 11/19/2011 - 10:02am
Replies by: Lisa13

Hi wise MPIP-ers.  Asking again on behalf of a friend who - as you can imagine - has a lot on his plate right now.  He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last.  We are both working in Asia.  His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared.   His U.S doctor (Mayo Clinic) on the other hand,  says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.

If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice.  Do any of you have thoughts or evidence either way for this decision ? 

any and all advice and opinions gratefully received - with much thanks to those people who are still kicking mel in the face every day....

 

AlisonC

Stage IIIB

NED since 2001

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I'm me, not a statistic. Praying to not be one for years yet.

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Nick Maraveyias's picture
Replies 7
Last reply 11/17/2011 - 10:29am

Hello all.

Lost a 50 year old brother (in law) to melanoma a couple of months ago and now my 49 year old brother has been diagnosed 3b.  He lives in Greece. 

Docs in EU seem to not favor interferon treatment.  Recommendations are for "optional" interferon for one month, "stop if you are feeling bad" kind of thing.  My brother in law did interferon for a whole year, 5 years ago, here in the US.  Cancer came back almost one year to the day of completing interferon treatment.

 

Can anyone advise as to any recent data comparing effectiveness of interferon treatments of varied durations?

 

Thank you,

Nick

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Angela C's picture
Replies 7
Last reply 11/16/2011 - 8:33am
Replies by: jag, Laurie from maine, Lisa13, JerryfromFauq, lhaley, Anonymous

Hey everyone.

I had my first brain met, 2 mm, in August and had SRS on 8/24. Today was my first scan since then. Today I got the GREAT news that the spot they zapped is gone and there is nothing new, and no brain swelling. It is such a relief!! I was really worried that there would be new mets since melanoma likes the brain so much.

I just finished my last dose of Yervoy last week and will have CT scans on Nocember 29th. Hopefully those scans show great things as well!!

I know that it is very possible that my next brain MRI may not show such good results, but we have to celebrate the good news when we get it!!

Just wanted to share some good news. :)

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Anonymous's picture
Anonymous
Replies 9
Last reply 11/23/2011 - 4:33pm

Hello!  My father was diagnosed with melanoma (on top of his head) 12yrs ago.  He had surgery to remove and was told if he made it 5yrs without recurrence he should be "in the clear".  Unfortunately, last month he began having abdominal pain and weakness which resulted in him being hospitalized.  While there a CT was performed which revealed recurrence of the melanoma.  He has mets to an area beside of his kidney, a lesion in his omentum and positive lymph nodes in his chest.   He has malignant melanoma (BRAF V600 mutation).  He began the drug Zelboraf today.  I'm very interested in speaking to anyone that may  have information about this medication (side effects, response rate, etc). 

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Karolina's picture
Replies 4
Last reply 11/16/2011 - 4:53am

Hi,

i wonder if you can advise whether loosing weight, ca. 13 pounds a month is something what can be explained by nerves or is this something what should be looked at due to the cancer issue?

k.

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Lisa13's picture
Replies 4
Last reply 11/15/2011 - 11:09pm

I'm sitting here waiting to go in for gamma knife. The dr was here and suggested I not drive and have 10 percent chance of getting a seizure. I literally feel like crap now and hoping both of these things just aren't true. He did say the 2 brain mets I have are in very safe areas.

I know jag used to have seizures and could't drive for a bit, but is anyone else in the same boat? The possibility of not driving is to last 6 months.

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

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DonnaK's picture
Replies 1
Last reply 11/15/2011 - 10:05pm
Replies by: ockelly

I want to start by thanking everyone who has responded to my posts in the past. This community has been a tremendous resource to me and my husband as we've begun to deal with this awful disease.   My husband, John, has now completed his first three weeks of high dose interferon with reasonably few complications. He's been exhausted, particularly at the beginning of the week, but otherwise, he's been okay.  His neutrophil counts were low at the end of the first week and his dose was subsequently lowered by 30%.   Now after three weeks, both his neutrophil and  lymphocyte counts are low.  I know that lymphocyte levels are correlated with success of ipilimumab, and that some tumors spontaneously regress due to tumor infiltrating lymphocytes.  Should we be worried about the low lymphocyte levels? Or, is this a sign that his lymphocytes are infiltrating surrounding tissues to kill off remaining tumor cells?  Or, am I just reading too much into a single number?

We meet again with the doctor on Friday, but I want to make sure we're prepared with the right questions to ask.  Thanks to all in advance!

Donna

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NYKaren's picture
Replies 6
Last reply 11/16/2011 - 9:24pm

So, I'm all hooked up, waiting for my dose of il-2.  I showed Dr. Sznol the little buggers that seem to keep popping up, his response is that I'm having a plus/minus response.  My lymph nodes no longer show up on PET, (As of 2 weeks ago, none of the intransients did either.  He did say it's not a fluke thAT i have these now "things" on my face, they're definatly part of the Melanoma. 

After I get home, he wants me to go to Dr. Wolchuk and sign the consents for their Anti-Pd1 trial with the new drug from Israel.  This way, they'll scan me and if necessary get me into that trial.  I find to be very good news and quite reassuring. 

Here they come with my dose...

talk  to you tommor.

Don't Stop Believing

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bradcope1's picture
Replies 10
Last reply 11/21/2011 - 8:33pm

My daughter is entering the Stage 3 Interferon/Ipi trial soon and I am confused by the choices. Why pit these two drugs against each other when there is 20 years of data on interferon already. It should be too hard to compare the data. And since patients can get interferon without a trial, one would assume that most, if not all of the participants enter for the chance to get the ipi arm. With the cost of the interferon in this trial placed on the patient (or their insurance company), there is even less incentive to get this arm. I'm all for gathering important research that might some day beat this horrible disease, but it seems like comparing another new drug or even a placebo would be more informative. Any thoughts on the thinking behind this?

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Lisa13's picture
Replies 3
Last reply 11/15/2011 - 2:42am
Replies by: JerryfromFauq, Blueyes, Fen

I met with my radiologist today to discuss the procedure of gamma knife tomorrow. He said my tumour (2cms) is showing no signs of edema which is unusual for most brain tumours.  That being said, he was going to give me or perscribe me the steriod in case there is an inflammation/edema after gamma knife treatment.  For those of you who have done gamma knife, did you take this steriod?  I'm not a big fan of taking things like that, but do understand that they're needed at times.  Maybe this is standard for larger tumours than small ones. 

I also met with my clinical nurse today who told me to continue to be optimistic - especially in terms of keeping the immune system strong. Although ipi doesn't travel into the brain from your blood, lymphocytes can go in there and work some magic. She has seen some people who have developed brain tumours after ipi, but ipi has helped these tumours from growing. 

Lisa

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

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emilypen's picture
Replies 8
Last reply 11/19/2011 - 1:37am

Hi All,

So after fighting this beast for 4 years it seems we're at the end of the line.

My husband has been through; Interferon, Dacarbazine, P13k/Mek, Surgery with Radiation, Roche Braf, more radiation + WBR,  IPI and now Carbo/Taxol.

After the first treatment of Carbo/Taxol his sub q's cleared really quickly leading us to wonder if it was a combined response to IPI and chemo, but a 5 week wait for the 2nd chemo infusion led to increased pain and some sub q's popping back up. Finally his bloodwork was satisfactory and he got the 2nd chemo last week. It's doesn't seem to be working as fast this time around.

Meanwhile he's a little confused at times, nodding off throughout the day, really weak and not retaining much in his memory.

Based on his last MRI's to check his spine and brain ( last week) his brain mets are skrinking and no new ones have popped up, but the mel is pushing on his spine in places and is directly in his spinal canal as well.

So he starts more pallative radiation this week. 

He doesn't seem to have registered that the doctor told him he has maybe months to live, ( that was 5 weeks ago) which I am fine with! And I am hoping he makes it to the birth of our first child in late Feb.

We're lucky in many ways, i don't have to work right now so I can take care of him, his work has a 2 year full salary disability plan and covers all medical costs that our Canadian system may not ( like prescriptions) we have a great family support system. Home care when needed, and the morphine takes care of most of his pain.

 

I really hope that the carbo/taxol works and helps get the tumour burden under control so that he can get strong enough for another clinical trial in the new year, right now his doctors say he won't qualify for anything based on his health.

What I'd like input on is how does this end? I'm not trying to be negative just want to know what to look out for.

Sometimes i think we'll go to bed one night and when i wake up, he won't. 

I've looked on the web and can't really find anything about end of life signs other that the couple of hours right before if any one has info to share that would be much appreciated.

 

thanks,

Emily

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