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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KevinM's picture
Replies 9
Last reply 4/1/2013 - 5:53am

So, I just realized that today is my 7th year anniversary of being NED!! I lurk on this site a bit now....but it was a huge part of helping me through the surgeries and Bio-chemo in the summer of 06. 

I was first diagnosed after finding a lump under my arm. I have an unknown primary. Like most I was pretty scareed when first diagnosed and couldn't think about anything else but melanoma. My youngest son was in high school and oldest a freshman in college. I remember my wife crying one night saying "I only want 5 more years with you". I looked at her and told her to expect to get old with me....she wasn't going to get rid of me that easily!

Since then, I've watched 2 amazing young men grow up, graduate college, get great jobs and find amazing young women. Run 9 marathons, got my motorcycle license and bought the Harley of my dreams. Volunteer with the Melanoma Foundation of New England as often as I can.  Looking forward to celebrating  my 32nd anniversary later this spring! She wanted just 5 more years???? Haha....not gonna get rid of me any time soon!!

To all engaged in the fight right now.......keep fighting and live life to the fullest everyday!!!

Peace and love to you all!!

Kevin

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mbaelaporte's picture
Replies 5
Last reply 3/31/2013 - 11:49pm

I have enjoyed reading of the improvements in health and disease recorded by some of the participants in these trials..Praise be

most recently noticing Melanoma in the City ( I've tried clicking reply to your blog for communicating  but maybe doesn't work ) and the team of Randy & Amanda

Would you please talk to how your participation is being financed - does your insurance company fund trials? Is there a charity or organization that  recognizes  that patients  play a huge part in the development of these medicines that are providing hope & wellness and that we need assistance in the evolution of said medicines.

I touched on this in prior post but some fine print and elaboration has come to pass.  Upon hearing of my rejection from my ins. co. I asked about self pay not wanting to let pass maybe the only thing that will help prolong my life.  There was no real follow up other than yes I could be considered if I chose to go that route.   Without hearing back I had to formally request a study budget from my provider and after a little prodding  I received an email from my provider 15 plus days later called a "breakdown" of my costs:  just south of $ 160,000.00 with an itemization of say ten costs like CTscans  -  $78,932.00 - no designation of how  many or for how long a treatment schedule this deposit was to cover.

I replyed back re: their breakdown;  you call that a breakdown; a breakdown is what I'm having right now contending w / this news.

this email was cc to a number of others & I received  a more compassionate letter the next day from someone directly involved w / the trial and the deposit number had been reduced to a little under one hundred thousand dollars and given a time frame of six months treatment.

I'm looking for a "competitor" trial provider,  organization that supports all the legs of trial costs,  etc...

news on how you are doing it,  your success... all stories most encouraged, thanks,  john 

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meeshka6059's picture
Replies 7
Last reply 3/31/2013 - 3:23pm

It is with great sadness that I tell you that I lost my father to this dreaded disease yesterday morning at 7:30am. He went peacefully and pain free, surrounded by love. Thank you for all your support and kindness, and thank you for being here with me on this journey. With love and light. ~Michelle

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Background: Don was denied coverage for Zelboraf by our BC/BS Federal Employee Insurance Plan on February 11, 2013.

Thrilling news this week is that our appeal to the Office of Personnel Management in Washington DC was APPROVED! This is a little anti-climactic, since Genentech agreed to provide Zelboraf to Don 2 weeks ago. However, it is our sincere hope that this victory will pave the way for other non-V600E BRAF-positive patients.

Don continues to do extremely well at the rehabilitation center. After 3 weeks, his strength and stamina have improved phenomenally. He's been on the Zelboraf for two full weeks. When he started the Z, he was extremely weak and almost completely bedridden, so his oncologist started him on 3 pills every 12 hours. In those two weeks, he has progressed to walking with the assistance of a walker, has been practicing on stairs, and his wit, intelligence, and sense of humor have bounced back 100%.

Looking at these two paragraphs, they seem so "short." But you all know the emotion and stress and huge amount of effort on the part of both patient and caregiver that underlies every single word.

I just realized that I had never updated Don's Treatment profile since I joined this community, so it has now been updated with the events that have happened over the past 2 1/2 months since getting the diagnosis. What a ride it's been...

We return to Dana Farber on Tuesday, April 2. They are not going to believe how well he's doing. I'm wondering if Dr. Ibrahim will increase his Zelboraf dose.

I am hoping to have a conversation with Dr. Ibrahim about Plans B and C... Don did have one infusion of Ipi before all hell broke loose and he became partially paralyzed, had brain sugery, and conquered rehab. Don't know if she will entertain continuing with Ipi while he's on Zelboraf (I believe we might be able to get 3 more doses in within the 16-week window). Is this something we should be asking about?

I have also been in touch with Dr. Keith Flaherty at Mass General who is willing to see Don for another opinion/options. Here's what his nurse conveyed to me just yesterday:

"Dr. Flaherty suggests that your husband can plan to be evaluated here either at the first suggestion of tumor growth on his scans from this point forward or, alternatively, to come to see him while still on therapy and responding.  This allows for a general discussion of options.  The only disadvantage of the earlier visit is that the clinical trials are evolving so rapidly that he theoretically would  go on might be closed when he he would need them but others might be available."

Any reactions to this?

Positive thoughts, enormous thanks, and love to you all.

Janet Lee

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belloui's picture
Replies 19
Last reply 3/31/2013 - 4:07am

Hi all, this is my first time on a forum, here is a little bit about me:

I am a 41 yr wife and mother of 2 – daughter 16 & son 10, I thought I was healthy however it turns out not so much...  I was recently (7 weeks ago) diagnosed with melanoma.  My doctors haven’t actually labeled me with a stage yet, well I’m sure they have but they haven’t told me and I guess on some level perhaps I’ve been afraid to ask even though I’ve been at my plastic surgeons office at least once a week for the past 7 weeks.  

I had a ‘suspicious’ mole on my back/right shoulder and knew I should have it looked at, I spotted it August 2012.  It wasn’t until November that I decided to bite the bullet and make an appointment to have my skin checked, figured I probably should as I had NEVER had it done before, yes I know, 41 years old and clearly v. stupid!  I couldn’t get an appointment until January and if I’m honest felt some relief, on some level I guess I knew there was something not right but never in a million years did I suspect it could be anything more than just having it cut out and that in itself was enough to scare me, how little I knew and still do...  

Jan 15, 2013 I went to my first skin check appointment and the doctor confirmed it would need to be cut out, I had plans for that w/e (at the beach) so she told me to come in when I got back, I had it removed Jan 22.  Received a phone call less than 24 hours later asking me to come back in to see the doctor, I was at the theatre with my son so made an appointment to go down first thing the next morning – still completely clueless...  Thursday 24 Jan 2013 I walked into her office only to be told I had a level 4 melanoma.  I had absolutely no idea what she was telling me, she did show me a diagram which made me realise this was pretty bad news as there were only 5 levels, thank goodness my husband isn’t as clueless as me and had cancelled his breakfast meeting to come along, he asked all the questions and I still have no idea what else was said, other than I needed to make an appointment asap with a plastic surgeon to have a WLE.  Called the plastic surgeon’s office to make appointment and was a little surprised (and scared) at how quickly they could get me in – that afternoon!  

The plasic surgeon explained how melanoma works and that she would need to take a v. large area from the site of the tumor and it would require a skin graft (taken from my leg), because of the position of the tumor she didn’t recommend a SNB, explaining it could go to either my neck or armpit so isn’t v. accurate, sent me for a PET & CT scan, the radiologist decided at the time they would also do a brain scan – can’t even begin to tell you how much that panicked me, I was convinced they had seen something in my brain and that is why they were now also doing this extra test my dr hadn’t ordered.  I had the WLE done the next day and was sent home to wait....  4 long days later (did include a w/e) my doctor called to tell me the pathology & scan results indicated the melanoma hadn’t spread yet but I should also remember the scans are not always accurate and can’t detect a tumor unless it is 5mm in size, so now I sit and wait like a ticking time bomb.  

I have nearly recovered from the surgery, skin still hasn’t quit healed over yet but it’s not too far off.  But what do I do now?  I feel like I just don’t know enough about this dreadful disease.  I’ve read all the pamphlets from the doctors and from ‘The Melanoma Patients Australia’.  I’ve trolled the internet reading blogs and personally that is really where I’ve learnt the most - honest, heart breaking stories from real people.  I’d love to hear from anyone that can direct me in the direction for more honest, real information.  

‘Pale girl speaks’ has been recommended to me to read, but I have to order online as I can’t seem to get in here in Australia from a bookstore and it’s not available as an ebook.  Any other recommendations would be greatly appreciated. And what I should do now...  I feel like I need to get a second opinion, my doctors are both going to do skin checks and lymph node physical examinations every 12 weeks but I have no idea what my other options are, they just tell me not to stress...  Really???  I feel like I am on an emotional rollercoaster and a bit of a drama queen when my thoughts turn dark.  Like me so many of my friends and family had/have no idea about this horrible beast, they think you can cut it out and you’ll be ok.  I know I am one of the lucky ones (if you can say that) because It hasn’t shown up in any tests anywhere else in my body but I feel like I need to do something to be more proactive.  I had a clean diet before but I now have become quite extreme – no sugar, processed food or red meat at all!  I’ve been given the all clear to go back to the gym (on restricted program until the skin heals) and both of these things do help but I need more... Any suggestions form others that know what I am going through would be more than welcome. 

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buffcody's picture
Replies 8
Last reply 3/30/2013 - 9:50pm

I was at my oncologist's today, and he feels the course of ipi was probably successful given the fact that the one tumor I have has not grown much if at all and, despite having had two brain tumors, there have been no new tumors anywhere over the last two months.  After one more set of scans two months from now, if all stays more or less the same (I will have the one tumor removed surgically), he would recommend a reinduction of ipi.  He did warn, however, that, as I am on Medicare, that Medicare seems to not pay for a reinduction of ipi.  Have any of you faced a similar situation?  Was that your take also?  Can you think of a path around paying $200,000 or more out of pocket.  The University of Michigan Hospitals, not surprisingly, are not going to pick it up.

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randallgford's picture
Replies 7
Last reply 3/30/2013 - 5:11pm

Randall had a brain mri a week ago, showd 5 small brain mets. Radiation Oncologist recommends

cyberknife. Yesterday had mri/ct for mapping/sequencing for cyberknife and this mri shows

14 mets, and they are now recommending wbr. Randall completed two yervoy treatments and has

two left. each week when we go to onco appt my husband seems to appear well, his blood work

is good and dr is optimistic. When we are home, he looks pale, thin, and his belly is protruding more

and more. Dr. gave us water pills three days ago saying the liver sweats and creates fluid in the abdomen.

So why would I not think he liver mets are multiplying like the brain? Onc said to give the water pills one more

day and he will see him tomorrow . He has alot of tumors lung, abdomen, and started with only 2 on liver

but im scared they've increased. What if he strts wbr and it knocks him out because the rest of his tumors

are growing? I know Im babbling but Im scared. What other questions should I ask the onc tomorrow?

Zbraf is an option because he is braf positive, but doc wanted to wait til yervoy then assess because

he felt Randall wasnt deteriorating. I think he is. BUT I DONT KNOW MAYBE IM PARANOID.

 

Never give up!

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/30/2013 - 12:02pm
Replies by: lou2, SoCalDave

Can melanoma look like a tiny black pinprick on the skin?

I realize this can only be known for sure with a biopsy, but wondering if anyone has ever seen this manifestation in a patient not under any kind of systemic treatment.

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tony9511's picture
Replies 10
Last reply 3/30/2013 - 10:10am

My Onc just called me in this morning.  I was wondering about the results of the node pathologies from last weeks wide excision.  Was concerned the first time I dxed with mel the tracer showed it only draining to my neck.  When the mel recurrence came back and I had my surgery last Tuesday, the pet scan was neg but the tracer showed it draining to both my neck node and armpit node.  Well the neck was pos for cancer so I have the surgery set for neck disection April 12, than I will be on interferon (sp) for a year.  Thanks to all who viewed my ramblings and replied.  I am positive I can beat this crap and live a good life.  Being 39 my goal is to make it as long as possible.  To all the brave souls affected by this terrible disease and their loved ones god bless and I pray for you all.  I am still learning so much about it.

Tony

tonysaratoga@hotmail.com

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Gene_S's picture
Replies 2
Last reply 3/29/2013 - 8:17pm
Replies by: hbecker, Colleen66

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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kateboston's picture
Replies 25
Last reply 3/29/2013 - 9:41am

I am 30 years old and was diagnosed with melanoma in June 2010. Over the summer, I had a WLE and SNB. One of the lymph nodes had microscopic melanoma in it. I then had a lymph node dissection of my left groin in August. Luckily, those lymph nodes were clean. I am stage 3a. In September and October, I went through the induction phase of Interferon and now am in the maintainence phase. I am lucky to not have many side effects and am working full time.

This forum is great for all us melanoma survivors to connect but lately I feel I'm seeing a lot of people who have succombed to this awful disease. Right now I'm at the point where I could use a little inspiration - I want to hear stories of people who are kicking this disease's ass! I know that there is a chance this could come back but I need to hear from those of you who's has not come back . I need to know that that is a possibility for me....for us.

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PaulB's picture
Replies 9
Last reply 3/29/2013 - 9:29am

Hi Everyone!

I'm not sure if anybody remember me......

Its been long time that I haven't visit this site........Since I was Diagnosed on October 2002 Stage 3b Level 3 .

I have been doing very well for close to 9 yrs now and still cancer free!

I can't beleive that I have survived for almost 9 yrs and looking forward to 10 years anniversary next year as melanoma survivor.

Now, Everybody ...keep your faith in positive way, and not looking back in the past.

My family kept me going forward in positive life, that how I survived all those years!

GOD bless you all!

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G-Samsa's picture
Replies 6
Last reply 3/29/2013 - 12:38am
Replies by: jeffjohn78, jim Breitfeller, Anonymous, G-Samsa

I noticed that in an earlier post a member (is that what we are?) indicated that he was having a very positive response in a trial that paired Ipi with a new compound (INCB 024360). How much promise does this approach offer-- anyone know? It seems to be different than anti-PD-1 and Ipi in it's attack objective..... I noticed that restrictions in the current trial require that you've had no prior treatments with immunotherapy compounds. Just wondering if there is a belief that this may eventually open up another avenue for us to follow. I myself am in an anti- PD-1 trial --but it would be nice to know that the arsenal I may eventually need to rely on is growing.

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Wolverine's picture
Replies 4
Last reply 3/28/2013 - 11:06pm

I am stage IIIC melanoma with unknown primary.  I have been taken Interferon since November 2012.  Overall I have done fine with the exception of being wiped out (tired) and a little weight loss.  I haven't had the energy to exercise.  I am seriously considering taking off for the spring/summer.  As I understand, Interferon has not been proven to extend overall survival rates.  I have come to the opinion that I have a better chance of survival if I am not worn down and unable to stay active.

Wishing everyone well.

Everyday is a Gift so Fight Strong, Live Long

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sgrain's picture
Replies 4
Last reply 3/28/2013 - 10:25pm

Hi all. It's been years since I've posted as I've been stage 3 since 1998. Now stage 4, lung nodule removed in right lung last year, now new tumors in right and left lungs. Did 3 months of yervoy and tumors spread in both lungs. Started zelboraf and after 8 days stopped due to severe rash. A week of steroids then half dose of zelboraf for a week. AST (liver functions) test went from 25 to 382 so now half of that dose (1 pill twice a day) and still have the rash. I have a pet scan next week and my question is, if liver function test still high and not much improvement, what is next? Anyone know of good trials going on when both yervoy and zelboraf fail? Getting really scared now.

Much luck to all in beating this thing?

Sandy

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