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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B-Trent's picture
Replies 4
Last reply 10/18/2012 - 10:51pm
Replies by: Swanee, Linny, michelleg

Has anyone had side effects with the Mag3 vaccine?

Monday was the first time I've taken the Mage3 vaccine without a week of HIL-2.  I developed flu like symptoms with a temperature of up to 101.

What has been your experience with the Mage3 vaccine?

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scrapps's picture
Replies 1
Last reply 10/18/2012 - 8:43pm
Replies by: gabsound

I am currrently Stage 3a and underwent a full Lymph node dissection 19 days ago. I have a follow-up with my surgeion to hopefully remove my drains and my initial consult wwith the medical oncologisst  to  discuss where to  go from here. My dissection went well overall  with another 17 nodes taken and  all negative. So at this time all they found was my primary and micrometastases in a single  axillary node. I wass wwondering if anyone had suggestions of specific questions I should make sure to ask when I meet with the oncologist later today.  I feel like treatment options wwill be discussed but ultimately it  wwill be left up  to  me and I want to make ass educated  a decision as possible.

Wil

35 y/o Stage 3a

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sandywebb's picture
Replies 5
Last reply 10/18/2012 - 2:45pm
Replies by: Roxy1453, kylez, Anonymous

Waiting for next scan in early November for Lung Met, Showed up 2 months ago for my 5 year NED from stage 3b. If it is "real" what are my options? Have been clear for 5 years since being a 3b NED since 2007. Did the Interferon for the Complete Course and am dealing with Lymphedema on the lower right side and am having a very,very hard time coping with the possible realization that "it" is back. What is the typical approach to this?

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sharmon's picture
Replies 4
Last reply 10/18/2012 - 11:37am
Replies by: Anonymous, Amanda, Bubbles

Hi, this is Brents wife Sharon, after 32 months on Gsk Mek and Alimta alone than in combo he has mets to his ribs and vertabra. (He is Braf negative). We thought it was a kidney stone at first.  Test showed different.  He is being treated at MD Anderson with Dr. Falchook but we live in Tampa.  To ease the pain I made an appointment for a consult with Dr. Weber to get a referral for a radiation therapist to ease the pain.  We don't go to MDA until late next week.  While in  Dr. Weber's  office he talked to us about the Merck Anti-pd 1 trial that he has and after some discussion about needing a brain MRI and tissue sample we were put on a waiting list that he says is about 3 weeks out.  We need to meet with Falchook next week to go over the chance of him being removed from the GSK trial because of progression on Thursday. 

2 months ago signed a consent for Foundation Medicine to evaluate his tumor tissue for a know mutation.  He has been negative for all that MDA had tests for.  It may uncover something that there is a targeted  therapy for, and maybe not.  The  Mek targeted theraphy has worked for him in the past as a single agent, maybe with it combined with something else he can get stable again.

I know we need to make this decision on medical information not emotion.  (Quote from Charlie). 

Any thoughts from any of the warriors or experience is needed.  I am not thinking straight at the moment and something someone might add would help me get a bit more centered.

Sincerely,

Sharmon

 

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Souxie_q's picture
Replies 6
Last reply 10/17/2012 - 6:32pm

I just want to thank y'all for posting about your experiences with Zelboraf. My sisters story starts with a melanoma mole removed when she was 18. At age 39 she was diagnosed with metastatic melanoma, stage 3. At the time she lived in Houston and was able to go to MD Anderson for the start of her interferon treatment. But has since moved to PA. She, after complaining of stomach pain, was diagnosed with gastritis in August 2012. She lost 13 pounds in a month and lived with this pain. In mid September she went back to the ER and when they did a CT it showed mets in her liver, pancreas and lungs. She is 45 and has a 13 yr old daughter and is a single mom.
She went home and awaited Yervoy to get approved, in the meantime her cancer grew and she was hospitalized again oct 7th. I flew in to be with her and have slept in the hospital for 5 nights now. It's unbelievable to me how much this has progressed already.
Good news today is that she is BRAF + and instead of Yervoy they will be giving her zelboraf. I'm SO hopeful that she will do well on this treatment. We just lost our mom to a pulmonary embolism in Jan and as a family, have dealt with so much. I just want to wish all of you well, fighters, survivors, family members. And thank you for sharing your stories, it makes the uncertainty a little more bearable.

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DonnaK's picture
Replies 19
Last reply 10/17/2012 - 5:47pm

Hi. My husband was diagnosed with Melanoma (2.55mm thickness, non-ulcerated) on his chest  in July.  A follow-up WLE and SNB revealed 4 of 6 microscopic tumors in his lymph nodes, tracking to both his left and right armpit. He has since completed two completion node dissections and enrolled in the interferon vs. ipi trial.  We were really hoping he would get chosen for the ipilumimab trial but unfortunately, he lost the lottery and is scheduled to begin Interferon on Monday.  I want to make sure I'm doing to right thing by encouraging him to stay in the trial.  I've looked at all the Interferon data and I'm unimpressed, but I also can't imagine doing nothing.  He is 36 years old, and a father of a 2 year old and one more on the way. 

I've read through past posts which have been incredibly helpful, but I'd love to hear any words of encouragement as to why he should stay in Interferon side of the trial.  Also, his doctors are implanting a port on Monday since he isn't supposed to get blood drawn from either arm.  We're curious how standard this practice is and how difficult it will be to endure. 

Finally, are there any examples out there where people have been prescribed ipilumimab off-label for resectable Stage 3C Melanoma?  We've consulted with five doctors so far and I haven't found one willing to do it, but...

Thanks in advance!

Donna

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Phil S's picture
Replies 16
Last reply 10/17/2012 - 2:51pm

We got good news this week, Phil's scans on Monday showed that his brain MRI is fine, his lung tumors are stable, and his stomach cavity tumors are shrinking slowly. These scans were almost 5 months after Phil received his T cells during the TIL trial in Houston. So we are cautiously pleased with these results and now get another three months with no treatment before his next scans to enjoy our kids and a much anticipated trip to Orlando. Phil's blood counts have rebounded nicely and he will most likely out walk us all at the Disney parks.

Just to encourage any stage 4 people who need a story of hope, Phil needed an emergency craniotomy a year ago, had WBR, six rounds of biochemo, and TIL, so from September 2011 to June 2012 he had non stop treatment! But, the great thing about TIL is once it's done you just hope the immune system takes over! Phil has been feeling well and hasn't had any treatment since the second round of high dose IL2 (part of the TIL trial) the first week of June. So, to us having the whole summer and now the whole Fall without treatment and with stable disease is an answer to our prayers. So to all the warriors in the battle, keep fighting, you just never know with this disease. And, to all the warriors who are looking down on us, your courage has inspired us and we have not forgotten you! God bless, Valerie (Phil's wife)

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It's been a VERY long time since I've been here.  Losing Eric was one of the hardest things I've ever been through in my entire life.  It's only by the grace of God that I made it through the first year, but I'm here.  Today I updated the Cancer Resource List on my blog for patients who are going through treatment.  I hope you find this helpful.

http://melanomasucks.blogspot.com/2012/10/resources-for-cancer-patients.html

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swissfarm7's picture
Replies 21
Last reply 10/17/2012 - 10:43am
Replies by: Anonymous, swissfarm7, Mandi0280, DebbieH, POW, lhaley, jmmm, piii, Cooper

Oh, to have had a crystal ball and changed insurance plans six months ago when the opportunity presented itself!  But, as an ultra-healthy family, we've been comfortable for years with our coverage.  It's a very basic plan and met our needs, but it doesn't include prescription drug coverage.  I've only realized that this means the low-dose interferon won't be picked up by our insurance. 

Yes, in the ongoing ridiculousness that is health insurance, the high-dose (administered daily at the infusion oncology clinic) is covered.  The low-dose (second phase, administered at home) is not.  And I can only imagine the price tag on this stuff. 

Have any of you here been in this situation?  If so, how did you handle it?  Thank you!  Tomorrow's the Big Day, btw, when Hans will begin treatment.  Call me crazy, but I'm on pins and needles.  Just want to get going with it already, kwim?!

Warmly,

Colleen

Keep on keeping on.

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jmmm's picture
Replies 6
Last reply 10/17/2012 - 6:00am

My husband (stage 4 since Jan. 2011) had a grand mal seizure over the weekend. He has been "fine" for about 6 months and even had a NED scan 3 weeks ago, so the seizure came out of nowhere. The CT at the hospital showed nothing new (he has a large cyst from a huge brain tumor from last October...treated with a craniotomy and gamma knife). He'll go in Friday for a MRI to. Rule out new growth, but for now he's on Keppra. Since he started taking it, he's been like a zombie...completely glassy-eyed, wants to sleep all the time and can barely function. I have a call into the doctor, but am wondering if someone has experience with any type of anti-seizure drug. This is not how he wants to live...we're both thinking that the risk of another seizure is better than living like this. Any thoughts? They did not find an immediate cause for the seizure.

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Waiting for next scan in early November for Lung Met, Showed up 2 months ago for my 5 year NED from stage 3b. If it is "real" what are my options? Have been clear for 5 years since being a 3b NED since 2007. Did the Interferon for the Complete Course and am dealing with Lymphedema on the lower right side and am having a very,very hard time coping with the possible realization that "it" is back. What is the typical approach to this?

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Becky's picture
Replies 3
Last reply 10/17/2012 - 12:54am
Replies by: DonW, NYKaren, Phil S

My son Ben was feeling realy sick recently...really swollen lymph nodes on his neck. He was just about to travel to Baltimore to visit friends and then to Finland for 6 weeks (he met a girl...). His doctor did a needle biopsy on his neck becuase he was not sure what was gong on. He ended up in the ER in Baltimore where they did a test for Mono.

Ends up he has Mono...goes to Finland anyway (new love) and is starting to feel better. I was so happy to hear thats what it was, as opposed to the cancer rearing its ugly head. It is weird how our perspective changes.I hate melanoma.

I read the posts daily and keep everyone in my thoughts. I am still heart broken about Kevin. Keep fighting the fight!!

 

Becky

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bikerwife's picture
Replies 2
Last reply 10/16/2012 - 11:40pm

Hi everyone, Lynn is on his sixth month of zelobraf and is doing well. the only problem we are having is joint pain and those nasty skin issues. small price to pay for living. our problem is after brain radiation last Dec he lost from 170 to 128 he has gained back up to 134 but cant seem to gain any or get muscle mass back. has anyone got any suggestions.  we have 2nd set of scans in nov and has done well since his 2nd gamma knife treatment.

What God leads u to he will. Lead you through

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sharmon's picture
Replies 9
Last reply 10/16/2012 - 7:01pm
Replies by: Anonymous, NYKaren, lhaley, sharmon, swissfarm7, King, rosa1

Brent was at Dr. Webers office on Wednesday and was told MERCK Anti pd-1 trial had an opening for him and it was in about 3 weeks.   Got a call today from his nurse after we called to find out about upcoming scans and blood work  and  the trial cordinator  used the word ( accural ) .   The long and short of it is that the trial is full.   The company is not taking anymore people. What can a person do to keep from losing their flippin mind.  There has got to be a better way to manage these  trials from the drug companies.  People are dying and the new drugs are out there!

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EmilyandMike's picture
Replies 5
Last reply 10/15/2012 - 7:21pm
Replies by: EmilyandMike, POW, JerryfromFauq, CarolA, Anonymous

This article is a good read for those undergoing SLNB or if you are stage 3 - especially those with micromets 

http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid%2bTumors&d_id=1...

Our experience with melanoma: http://emandmichael.wordpress.com/

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