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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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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Rick from NC's picture
Replies 14
Last reply 11/17/2011 - 7:56am

I have just reached the 20th anniversary of my diagnosis of melanona, which was Stage IV at diagnosis, with metastases to both lungs and various subcutaneous sites.  I was very fortunate to be referred to NIH where I had a complete response to IL-2 in 1992.  After several years of worrying about a recurrence, I now don't really think about recurrence.  It was a great pleasure to meet some of you at a melanoma conference in Chapel Hill, NC a couple of years ago.

I continue to read the posts on this site with great sympathy, and occasionally contribute.  I just wanted to offer myself as an example that people can have positive outcomes from even what appears to be a dire consequence.  I don't know why I did well when others don't, but I am very grateful.  My wish for my fellow warriors is for healing, in whatever way that comes, whether physical, emotional, or spritual.

 

Rick

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Charlie S's picture
Replies 2
Last reply 11/17/2011 - 7:41am
Replies by: Jackie W, Charlie S

We talked briefly  today. Brief is how to best describe his conditon right now.  But don't count him out.

Please keep him in your thoughts.

Charlie S

 

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HelperDaughter's picture
Replies 7
Last reply 11/16/2011 - 10:15pm

Hi,

We got some not so good news today.  My mom finished her IPI treatments.  December 1 is "week 20" when they supposedly do the scans that show if it's working or not.  Today, she had a brain scan that showed a new tumor in the back of her brain.  it grew in 3 months.  She had had a previous met to the brain that was zapped by SRS and is now totally gone (per same brain scan).  This second tumor is bleeding.  they don't know how big the actual tumor is because of the blood, but with blood included it is 1.5 cm in maximal dimension.  My mom had some swelling following the first SRS treatment (both tumors have been asymptomatic - she has no neurological deficits whatsoever - not even a headache).  due to the location of this new tumor (back of the brain), SRS therapy is undesirable because swelling from it could potentially affect her eyesight.  the plan is to remove the tumor and the hemorrhage surgically, then zap it with the SRS.  once the mass is removed, swelling from SRS is apparently less of an issue.   her surgeon literally told her that since it's on the surface, it'll be "a piece of cake."  But, i can't help but feeling like it's eating a piece of cake while you're going down on the Titanic, you know?

I just feel like my mom is getting the sh--ttiest bum rap around - pardon my friench.  She's braf negative, she's got brain mets (disqualifies you for trials), she has psoriasis (autoimmune disorder that can disqualify you for trials), she has visceral mets (that are actively bleeding and causing her to become anemic and require bi-weekly transfusions).  Literally in July of this year we went shopping together and she was fine - absolutely fine.  it was July, just four months ago.  now she's too tired to grocery shop.  is it the IPI or is she dying?  i know brain mets and visceral mets have like the worst prognosis around.  i just feel like we can't get a break.

I'm scared i'm never going to get to go shopping with my mom again. do you think it's OK to cry in front of her?   sorry if this is a stupid post.  i'm just so scared. 

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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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crazymom99's picture
Replies 1
Last reply 11/16/2011 - 5:52pm
Replies by: Janner

Because I rely so much on myself, rather than my derms to find a suspicious mole, I am scared that I might miss something because my first melanoma was 1X2 in diameter AND it was a mole that had not changed (I have pictures). I just had a "feeling".

I am a person with 100 + funny looking moles. Several are greater than 6mm, but most are smaller. Derms seem to look at the bigger ones, but now, I worried I need to take off all my moles. I know, its unrealistic, but I do not know what else to do?

Has anyone had a melanoma that small before?

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crazymom99's picture
Replies 12
Last reply 11/16/2011 - 4:56pm

You can read my profile for more info, but I have a weird case of Stage 3. At least that is what my oncologist says. 

Needless to say, I want to be aggressive because I have two kiddo's under the age of 3.

My oncologist suggests a year of Interferon, but as all of you know, Interferon is not the best treatment for stage 3. At least that has been the case in my family where Melanoma is a household name.

I want to go strait to BioChemo or Ipilimumab, but he says that is not standard treatment. Am I crazy for wanting to do that? And is it even possiple? Has anyone ever done that? I know its no picnic, but I don't feel like there is a choice.

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

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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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lhaley's picture
Replies 12
Last reply 11/15/2011 - 8:04pm

There have always been a few new at a time that have developed brain mets.  These last few weeks there seems to be many that have posted lately.  Unfortunately even during these short weeks Don has not only developed mets but also has passed. 

Some of you are already doing great! Some have had brain mets in the past and doing well.  Some are struggling.

Post and give a little info so that we can gain infor from you.

Linda

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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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