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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walesgirl's picture
Replies 4
Last reply 2/14/2012 - 8:41pm
Replies by: scots, Sherron, SoCalDave

Greetings comrades and Happy Valentine's Day!

I will be meeting with a radiologist on Friday to discuss local treatment to an area on my scalp where 'my' primary and local recurrence were located...

anyone have any experience with scalp (as opposed to brain) radiation treatments? Could I lose ALL of my hair, or only that in the general area...I'm just not sure if what I read is applicable to radiiation to the skin, as opposed to deeper tissue...of course, I'll learn much from the physician, but just curious...thanks so much and enjoy this day!!! 

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Roxy1453's picture
Replies 3
Last reply 2/14/2012 - 6:18pm
Replies by: Roxy1453, kylez, Linny

I haven't posted for awhile so I thought I would fill you in. I had a pet scan 2 weeks ago. It did not show any new spots but the one I have showed brighter. It also showed that my colitis was not gone. So I didn't have my third IPI treatment and I'm staying on the steroids. I went in again this past Fri. And will be staying on the steroids for 3 more weeks.

He told me that the IPI has ramped up my immune system with just the 2 treatments and that if I got more it would just creat more problems. He stopped short of saying it was kicking the cancer. It's too soon to know. It's just good to know it has been ramped up.

I pray for healing for all of us, stay strong!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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tonyrussell's picture
Replies 33
Last reply 2/13/2012 - 10:04pm

Hi,

My wife just got diagnosed with Melanoma today.  Although the doc said he got it all out...i'm terrified.  We do have to go to a specialist to make sure it isn't in the lymph nodes but the prognosis is good.  However, I could use some positive input and stories.

Tony

tonyrussell2@gmail.com

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Replies by: Lisa13, Alicia15

For those who've had brain mets (more than 2) and are still living live 1,2, 3 + years later, I'd really love to know what the reasoning of this could be and the treatment that may have helped.  One woman had 3 and that was 5 years ago and another amazing woman had 15 and that's been 2.5 years! !   I know some tumours keep coming and then stop, or others just keep coming and don't stop.  I know there is hope though, but I supposed I need to understand it a bit.

I had 2 brain mets and then got followed up after 8 weeks and found 2 more - very small and nothing more found in my brain (less than 0.5mm) from the brain mri.   I'll be going every 8 weeks to keep tabs on them which I believe is the best thing possible as well as gamma knife.

Lisa

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

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Maxximom's picture
Replies 11
Last reply 2/13/2012 - 4:25pm
Replies by: Anonymous, Maxximom, yoopergirl, justlittleoleme, Gene_S, jmmm

Hello to all of you. I am a new member here and posted about 10 days ago for the first time. I am newly diagnosed with Melanoma in my left lung. I have never had any skin lesions of any kind. I had a CT scan for a totally different reasson and a mass was discovered in my lung by chance. At first it was thought to possibly be lung cancer and I had a core biopsy done and the pathology report came back as Melanoma. Since the lung is almost never the primary source..and all skin checks are clear.. they have no idea where the primary may have come from. I am seeing a Melanoma specialist at the James Cancer Center in Columbus OH. I have been told surgery is not a option. I am still waiting for my B-Raf test to come back..but Dr Kendra feels stronly that the Ippi is my best option. What can I expect at this first treatment? When do side effects usually kick in at the first infusion.?.or will the side effect get  greater with each treatment...or is it a really an individual thing? I am sure that some of my questions will be answered on Thursday..but I would like to hear from you..; who have been there..done that..Friday is my 81st Birthday.. I never expected to have to face this at my age..but I have always been a fighter and I want to kick A$$ and be around for a while and see my Grandkids grow up.Thanks for any help. Keep Fighting!

Joan

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deardad's picture
Replies 4
Last reply 2/13/2012 - 3:56pm

Hi just wondering for those on Zelboraf....once you have reached your 5th cycle do you then have a scan in 3 months? I find that weird considering the median response is 7months? My dad in Melbourne will now be scanned at the 8th month unless they feel something by physical exam.

Hate Melanoma.....

Keep fighting.

Nahmi from Melbourne

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Karin L's picture
Replies 5
Last reply 2/12/2012 - 8:38pm

Posting this for responses from other IL 2 warriors  as well as putting this post out there for any future searches someone might need. 

I am now 8mos. out from HD IL-2 treatment (4 hosp. stays, 2 courses) and as of last CT scan (12-9) , still responding.  Most disease has either disappeared or shrunk 80% or so.    So not really a complete responder as of yet, but hopeful I can get there!  Not complaining either.  Next scan in early April.

In the meantime, I developed neuropathy in both hands and feet.  In Nov. I also developed tinnitus (ear ringing constant).  Dr. tells me these are side affects from the systemic treatment and it means my immune system is still reved up.  Anyone else experience the same types of things? ( It's always comforting to know you are not the only one, ya know?)  Dr. also says it could be life long issues  (not complaining again), just wondering if others were told the same? 

Do auto immune responses normally show up so long after treatment?   Anyone know how long your immune system keeps fighting without a little extra help (other treatment)?  I still don't quite understand how this cancer responds or quits responding, etc....maybe none of us do (except maybe JimmyB, *smile*).  Dr. is SO confident yet I sitll walk on shards of glass. 

I read and pray and support silently each and every one of you here, everyday.  I am just not a poster : (.  Drives me nuts. 

Karin 

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Bubbles's picture
Replies 6
Last reply 2/12/2012 - 8:28pm
Replies by: Anonymous, Bubbles, boot2aboot, Cooper, momof2kids

FYI - from my blog.....

This month marks a full year of my being under anti-PD1 treatment (MDX-1106 by Bristol Meyers Squibb) combined with vaccines at Moffitt in Tampa. However, anti-PD1 is now in development by 5 companies (BMS - MDX-1106, CureTech - CT-011, Merck/Scherring Plough - MK-3475/SCH 900475, Amplimmune/Glaxo Smith Kline - AMP-224, Genentec - no drug name yet).  However, the Genentec drug is technically an anti-PD1 ligand.  Trials for all of these include my BMS combo with vaccines at Moffitt as well as a new CureTech trial opening at Moffitt.  CureTech is also opening trials at Yale, Dartmouth, and locations in New York, Boston, Europe, and Israel. Merck/Sherring Plough is opening sites in San Antonio, Houston, Los Angeles, San Francisco, and Toronto.  Amplimmune will have sites in Detroit, North Carolina, and Nashville. BMS also has trials in New York and at Yale. 

 

So far, BMS has been in the lead with trials already in process, but it looks like game on for the rest of them.  Hope, they know what they are doing and there is real promise here.  Usually pharma knows where to place it's bets....so we will see....as data remains hard to come by....more on that next..... 

Best wishes to all......Celeste

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Lauri England's picture
Replies 4
Last reply 2/12/2012 - 7:55pm
Replies by: NYKaren, scots, DonW, akls

I had my first appointment with Spectrum Melanoma Clinic in Grand Rapids, Michigan.  They were awsome to say the least.  The did get all of my original medical records since the beginning of my melanoma.  I met Sergical Onc, Dermatoligist, and medical onc, and a genetics doctor.  It was very thorough.  I was very pleased with the whole experience.  I did get the results of the altrasound that I had which came back non maliginant non cancerous mass and the 2 moles I had removed were benign.  I was finally told for the first time that I am officially NED.  It was explained to me that the PET scan that I had done would not have picked up the nodual on my lung that they were watching because of the size of it and in there opinion I should have had another CT scan with contrast instead of PET scan which will only pick things up that are a certain size or bigger.  They do want another CT scan done in April to re check the lung nodual for change but other then that NED.  They said the nodual on my lung is so small that they are not concerned about it at all at this time but they do want to watch it, if it is still there even. Great new to me!!! On with life again with a lot less worry.

Don't sweat the small stuff. There are bigger fish to fry!

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himynameiskevin's picture
Replies 9
Last reply 2/12/2012 - 5:26pm
Replies by: benp, himynameiskevin, Lisa13, Fen, jag, Anonymous, Karin L, scots, aldakota22

Three days ago, on the 8th, I completed my planned stereotactic radiation on the bigger 2 of 5 tumors in my brain, which luckily were still pretty small (largest one at about 9mm). And yesterday, the remaining treatable 3 were targeted. The doctors said all went well, everything matched up perfectly, and they feel really good about the whole thing. I was supposed to have the remaining 3 taken care of Thursday, but an hour or so before my appointment I had another seizure. It came on slowly this time, slow enough for me find Brenda, let her know, prepare, lie down, and brace my self. In a way, the knowledgeable anticipation was pretty stressful though. Luckily it only lasted about 30 seconds this time, but I was in a slight lethargic state for a little bit after that. I woke in the ambulance and spent a couple hours at the ER to be safe. They checked my vitals/blood/electrolytes. Everything looked fine, no scans were needed because they knew what caused it and I was home in a few hours. Besides a little fatigue from the whole experience and a bit of stress from paranoia that this could happen again at anytime, I’ve been doing ok. My oncologists did up the dose of the anti-seizure medication and explained that should do the trick, some people just need a little more and reminded me that when they have confirmation that this radiation is successful as they think it will be, they’d like to have me taper off any/all medication as soon as possible. I'll be getting a follow up MRI in 2-4 weeks. And go from there.

Lastly, I have a chest/abdomen CTscan this Wednesday, to check and see if this Yervoy that I finished on Dec 20th is kicking in and making any progress on my lungs. That sure would be nice. But I've also heard that even this early, may be too early to tell. But we'll see. Other than that I'm doing ok. I have noticed what seems to be one swollen lymph node by my groin. I have been through the ringer lately and I had a pretty decent cough/cold for a few days but I feel I'm on the mend. I know on one hand a swollen node could be a bad sign of something, but then again, on the other hand, when I did IL-2, and also the adoptive cell therapy at the NIH, during the times that both those treatments were "sort-of" working, I had a few lymph nodes swell up for a little bit.. so maybe it's something trying to work? I don't know, but that's what I'm hoping for.

Thank you all for reading and being there with for support during these crazy times.
Talk to you soon.

-Kevin

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Anonymous's picture
Replies 16
Last reply 2/12/2012 - 3:18pm

Hi ! Thank you all for being here and sharing information .I am glad I found this forum.

I was diagnosed with melanoma Breslow 2 mm and Clark's II , margins clear on my right breast last month. I am worried my doctor said  My wide excision and SNB will take plase in march only ( will be 3 months since mole removed!!!!!!) Is it normal or it will spread all around my body during this long time???

And another question - I know Clark is ot so popular ow ,but ayway it does mean something and how is it possible to have such a thick ( 2 mm) melanoma and only Clark's level II ?????

Do I have any chances to survive that??

I am only 31 ,newly married and wanted to have children .

Thank you for all your support and I wish you all the best

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natasha's picture
Replies 9
Last reply 2/12/2012 - 10:18am
Replies by: Lauri England, SteveBMe, natasha, Minnesota, Anonymous

I am so glad I found this website. I was diagnosed with melanoma last month .I am 31 ,I still don't have children and I wanted a child. No looks like everything is ruined.. Please , answer if you know - do I have chanse to survive with 2 mm thick melanoma and Clark II , margins clear on my breast? I cannot sleep and I lost my hope..  I am in UK and doctor said I will have my Wide Excision and SNB only next month (they are busy0,so it will take 3 months since mole removed !!!!!!!

I do know Clark's not so popular now ,but anyyway it does mean something and I cannot understand how is it possible to have such thick tumor (2 mm) and only  Clark level II?

Please ,colud you reply on my post with some information ,.

Thank you for beeing here and sharing your stories.

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Hello all!

My Mom ( age 71) is undergoing ipi treatment.

Her tumors are in her lungs and liver.  The liver is very enlarged and causing her pain and discomfort.

She was in a clinical trial for the next generation of ipi but had to stop due to severe rashes/itching. 

Just had her 3rd of 4 ipi treatments but is having severe fatigue and nausea issues.

She has lost a lot of weight.

After experiencing low blood pressure and a high heart rate along with "floaters" she had another MRI last Friday.

Now has brain mets - was clear on her scans in December so these are new.

Just had a consult and she will be having gamma knife radiation to treat the spots on her brain which are small.

My main concerns are her major fatigue and nausea.  She has had to have IV fluids for the past 2 weeks or I think we would have lost her.

She is fighting hard to survive to help with my Dad who is suffering with dementia.

Two parents with major health issues....I feel like I am drowning. 

She is having a high resolution MRI and CT Scan on Monday to prepare for the gamma knife radiation.  She mentioned that the nurses said the 4th ipi treatment might not happen on Tuesday due to the tests on Monday.

I am concerned that she needs all of the ipi possible to try to get the melanoma in her liver to respond.

????

Also, not really clear how much time we are looking at for survival.

Liver, lungs and now brain.

Very scared.

I can do all things through Christ who strenthens me.

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j.m.l.'s picture
Replies 2
Last reply 2/11/2012 - 9:48pm
Replies by: LynnLuc, Gsnowindlon

Just had several radical resecctions under my arm. Tumors had grown (1 fairly large) and were taken out.

Surgery was done on 1/30. How long does it take until I feel like me. Very tired and not up to par.

Also, RADIATION needed. What is that like. Any help on the side effects?? Any advice??

thank you JML

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annem's picture
Replies 5
Last reply 2/11/2012 - 8:14pm

My husband was first dx in 1998 with brain tumor treated with 15 rounds of WBR.  After a second brain tumor, stomach tumor, lung tumors, 4 rounds of biochemo and gamma knife, he has been cancer free since 2003.  He was diagnosed with radiation induced dementia in 2005 and had a stroke in 2009 which left him unable to walk without a walker and unable to talk.  He is only 58 years old.  About two weeks ago he began holding his head as though he was in pain and he has lost about 25 pounds since mid-December.  An MRI yesterday revealed no new tumor activity but an abnormal thickening of the brain at the back of his head.  The neuro is sending the MRI to the onc but tells me right now he is calling it an abnormal thickening of the dura - he says it may or may not be new disease.  He asked me if I had thought about hospice.  This has thrown me for a loop.  Although my husband has been unable to talk and had obvious comprehension issues, he knows me, he knows the kids, watches his beloved Okla State cowboys ... I told the doctor my main concern is that he not be in pain.  I'm not sure what this means but didn't know where else to turn.  I haven't posted here in a number of years but I always got great comfort in the discussions and suggestions.  Hopefully, someone will have dealt with this issue and can offer some advice.  Thanks.  AnneM, caregiver to husband, stage iv

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