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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kbc123's picture
Replies 6
Last reply 1/14/2011 - 9:34pm
Replies by: kthekhal, kbc123, W., Sherron

Hello ~  This is totally new to me and I am looking for answers, support, sanity, sleep, not all in that order.

I am currently in the very beginning stages of my new life-  with Melanoma.  I had a strange mole on my back that was removed last week, got the "unfortunately its Melanoma"  telephone call on Friday.  By Monday, I was seen by a doctor in our local Cancer Institute (CINJ)  who really gave me a better outlook on things, but nonetheless, I am petrified.  I am going for a lymphoscintigraphy and for more surgery to take off more skin/tumor area and I will have a lovely scar on my back ( who really cares about that anyway).   I will take all the scars they can give me, but I want my life back.

Someone on here, please tell me I am going to get through this, because as of last night, my brain can't deal with this. Sleep is minimal, I can't turn it off. 

I will owe you the world if someone could just give me peace of mild. 

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Shelly in Switzerland's picture
Replies 6
Last reply 1/14/2011 - 5:11pm

I just had my 11th cycle CT scan for the B-raf trial and I am still responding!  The 8th cycle CT scan showed stable disease so I was sure that this time it was going to show progression but instead it showed slight shrinking still!  Yahoo and Amen!   I am so ready to be done thinking about this for awhile.  My side effects have very minimal so I am feeling very healthy.  I DO have curly and thinning  hair now... anyone else have this side effect?  Something I can live with.  FYI I also have iritis almost monthly that I have to use steroid eye drops for but I can deal with that as well as the arthritis flare-ups.  All in all I feel great and ready to march forward.  I am even thinking of joining a gym here in Basel as well as start substitute teaching! 

I thank God for this continued response and continue to pray for everyone on this board.

Peace and joy,

Shelly

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bcl's picture
Replies 5
Last reply 1/14/2011 - 3:00pm

http://www.timescolonist.com/health/votes+teens+under+from+using+tanning+beds/4099594/story.html

 

 

 

A recent University of Minnesota study said people who use any type of tanning bed for any amount of time are 74 per cent more likely to develop melanoma.Photograph by: Glenn Olsen, Postmedia News

People younger than 18 will be prohibited from using indoor tanning beds after Capital Regional District politicians voted 18-1 in favour of a ban Wednesday.

Chief Medical Health Officer Dr. Richard Stanwick recommended the ban, which was debated by more than 40 speakers — almost evenly divided on the issue — during a

4 1⁄2-hour hearing.

Most of the politicians based their support on the testimony of youth in favour of the ban and the preponderance of peer-reviewed scientific evidence linking indoor tanning and skin cancer.

Juan de Fuca electoral area director Mike Hicks said he expects similar laws soon will be common across Canada.

Nova Scotia recently passed legislation that will ban the use of tanning beds for anyone 18 or younger.

It will be a huge pity, Hicks said, if the ban doesn't sweep "like wildfire across Vancouver Island, B.C. and Canada."

The lone dissenter was Metchosin Mayor John Ranns, who said the age limit for the ban should be 16 rather than 18.

The tanning industry mounted a powerful lobby against the proposal — even though it says youth account for just one per cent of its business — and blamed skewed science for the ban's approval.

Under the bylaw, tanning facility operators will be required to ask for ID from anyone who appears to be younger than 25. Contraventions will carry penalties from $250 to $2,000.

Stanwick, who originally recommended the indoor tanning bylaw in 2005, was elated Wednesday. "I'm so impressed," Stanwick said. "I was hoping that what happened in 1996 would happen again today — and it did."

That's the year young speakers persuaded the CRD, which had just voted to impose a sweeping smoking ban in all indoor public places effective Jan. 1, 1999 — then the strictest regulation in the country — to take extraordinary measures to protect youth by enforcing a smoking ban on school property as of September 1996.

Once again, "it wasn't my presentation, it wasn't the duelling scientists. It was that our directors saw the real promise for this region — that is our youth," Stanwick said. "They spoke eloquently, they spoke to a generational change and we were the supporting cast. It was the youth that drove this process."

Oak Bay Secondary School student Martene Hartnell delivered 300 signatures in support of the ban and an accompanying video. Earlier, the tanning bed industry submitted 800 names against the ban.

Adele Green of the University of Victoria's Youth Against Cancer said the ban decision is "a big weight off our shoulders. I'm very happy today."

Saanich Coun. Judy Brownoff said if the ban prevents even one person from dying of melanoma, it's a success. Studies by a variety of health agencies, including the Canadian Medical Association, have shown a direct link between artificial tanning at an early age and skin cancer.

In September, the New England Journal of Medicine wrote: "We believe that regulation of this industry may offer one of the most profound cancer-prevention opportunities of our time."

 

 

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ed_CT's picture
Replies 16
Last reply 1/14/2011 - 2:15pm

More good news to share with "the community".   Just had my latest CAT scans and I'm still NED now just over 5 years since going Stage IV, 6 years since initial diagnosis at Stage III.    A brief history-  Diagnosed with Melanoma on left ear  Sept 2004.  One sentinal node microscopic involvement.   Went on a Cancer Vax trial in Jan 2005.   Scans 6 months later showed it had spread to liver and neck.  Had tumor removed from Neck - left Mel in liver so I could do a trial.   Started trial of Nexavar and Temodar.   Also went on an almost Vegan diet (ate some fish) and started taking Tumeric supplements.   Within 4 months liver Met had shrunk to "scar tissue".  Stayed on drugs at full strength for 1 year.   After 1 year they reduced the Nexavar dose by 1/2 and kept Temodar the same.  Stayed on this regimen for another year and then dropped the Temodar (this ended my involvement in trial).   Stayed on the Nexavar alone (still 1/2 dose with lots of breaks - more as time wore on) until I finally ended it in Dec 2009.   I still take Tumeric but not as regularly as I probably should and I have started eating some meat, eggs - dairy in the last couple years  although I still eat lots of vegitables and drink soy milk and avoid meat most of the time thanks to a very good wife (I guess she still wants to keep me around).  Unfortunately from what I understand out of 146 people in my trial of Nexavar / Temodar,  I was the only one with a "complete response".  I'm sorry it didn't work out for more people. I'm a little disappointed that my Onc at Yale still thinks I should get scanned in six months but I guess caution is a good thing.   Maybe I can convince the people at U of Penn I see to let me go 9 months.  

Hope this post gives people here some  bit of inspiration.   There a quite a few of us "Stage IV" survivors lurking on this board.  

 

Best wishes

Ed from Connecticut ("Ed_CT" - formerly just "Ed" until they forced me to change it.)

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Debbie Dietz's picture
Replies 15
Last reply 1/14/2011 - 9:02am
Replies by: Debbie Dietz, djpayn, NancyGM, Charlie S, LynnLuc, Kim K, lhaley, Anonymous

I am stage IV and up for review with SSDI. I have been on SSDI since 9/07. After multiple surgeries and 4 clinical trials (GP100 vaccine, IL-2 and gene therapy trial all at NIH and then Ipi, here in Chicago) I am in remission and have been since 8/08. While the Ipi caused life-threatening complications for me I am now left only with Type 1 diabetes and thyroid disease as a result of the drug.. Also, because it is a non-FDA approved drug, no one can tell me how long the remission will last.

Does anyone have any tips on how to present my case to SS? I have used the search engine here and read the posts regarding SSDI. I have called the number provided here (1-866-673-6460) and spoken with a cancer social worker. Her only advice was to contact www.cancerlegalresourcecenter.org, which I have done and am awaiting a response. If anyone here has any suggestions on wording, etc. for the paperwork involved, I would greatly appreciate it.

Thanks

Debbie

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ockelly's picture
Replies 6
Last reply 1/13/2011 - 2:24pm

My husband TJ was dx with Stage 3b MM (amelanotic with unknown primary) in Nov.  We are waiting to hear

if he qualifies for the GSK DERMA clinical trail.  The process is taking much longer than expected.  We plan to 

start Interferon if he does not qualify.  Wondering what the optimal time frame is to start?  I thought I had heard

approx 70 days post dx (or maybe post op??).  He had the node removed on 11/4 and parotidectomy and SLND on 12/2.

Thanks 

Kelly

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himynameiskevin's picture
Replies 8
Last reply 1/12/2011 - 9:51pm

The snowstorms actually have my flights canceled and I'm stuck in the Dallas Airport overnight. It's cold, uncomfortable, a little lonely... but a perfect time to check up and say hello to all of you.

It's been a couple weeks, did my best to enjoy the holidays, focus on the positive and live a life not revolving around this situation. And I've been doing well. I think I recovered great from the "ACT". The papers they gave me said I might be pretty fatigued for a month or so, but after three days home, and finally keeping food down and eating a lot of it... I've felt pretty good. Actually the best I've felt since August probably.  I'm back at work and am doing all the normal things I did before all of this. My weight is back to normal and now if my hair would just grow back, I'd be golden. :)

Anyway, they've got me coming back to the NIH once a month for six months for scans to see what's going on inside of me. Hopefully I can get a couple hours of sleep here on the floor before my plane leaves tomorrow at 7am, and if that flight's not canceled I should make it to DC just in time to catch the shuttle which will get me the the NIH just in time to check in and make my way over to the MRI and CTscan area just in time to fill up on the fruity contrast drinks. mmmmm. It's going to be close. Then Thursday morning I have to do aphresis before the doctors meet with me. Then we talk, and that will be the first of hopefully a few big positive definitive moments. I'm not necessarily overly worried or exited about with they will say, but I am concerned and interested if that makes sense. I know I'm in good hands there and know they're doing what they can to help. Which does a lot to ease the mind. So we'll see how this goes. I'll let you all know. 

Here's to a cold night in a strange airport. Where's the light switch?

Goodnight all. :)

-Kevin
 

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JenM's picture
Replies 4
Last reply 1/12/2011 - 9:39pm
Replies by: BethA in VA, King, Fen, lhaley

Hi all,
Happy New Year to all! Have not been on in a long time...just wanted to give an update. Back in June 2010 found out melanoma spread to my left breast. Shopped around for a treatment either standard or clinical trial. Had decided on clinical trial and as I was getting worked up for that found out that I had 3 lesions in my brain (4mm, 4mm, & 8mm). Pretty devastated to say the least. Had Gamma Knife surgery and started chemo-Cisplatnium, Vinblastine & Temodar. Added on Nexavar several weeks later. Completed 4 cycles of the chemo and could not tolerate anymore-extreme nausea & vomiting. Lost at least 20 pounds...a lot for me..I only started @ about 120. Kept vomiting for weeks and weeks after completing chemo and Nexavar. Had a partial response to the treatment but that lasted for about 2 months Scan in October 2010 showed disease increased again in left breast and right axillary nodes. MRI of brain showed stable lesions. In a lot of pain....3 pain meds-morphine, lyrica and fentanyl patch.

Started to shop around for a clinical trial and settled on GSK BRAF inhibitor at NYU in New York City w/ Dr. Anna Pavlick (love her!) definitely could not do anything too intense like IL2.....was too weak. Began trial drug on Nov.16. PET/CT prior to study showed spread of melanoma to many areas of skeletal system, innumerable pulmonary nodules, left pleural effusion, portoacaval lymph node, metastatic ascites and lesion in spleen. Within 2 weeks was off the morphine and lyrica. Generally just felt better by the end of Nov. In Dec, about 3 weeks into study started to be nauseous and vomit again. Doc got scared and ordered PET/CT from head to toe. My LDH was 1010. She did not like the number and had never seen anyone throw up on the drug ( although had to be reported by other sites b/c vomiting listed in the consent form).

Surprise, surprise....scan result showed interval decrease of disease in left breast and right axillary nodes. Some pulmonary nodules decreased, some stable. Resolution of left pleural effusion. Complete resolution of metastatic ascites. Portoacaval lymph node not seen on this exam. Lesion in spleen was less seen. Some bony lesions did get larger, but some decreased and some remain the same. Overall....a good scan result just 3 weeks in. Also, I have many black cutaneous lesions covering the entire left breast. Majority of lesions are significantly either smaller or the black color of the lesions is less black. Still a lot to get through but looks much better. Nausea & vomiting resolved by adding on Reglan (anti-nausea drug)

So, looks like I'm a responder....but for how long? That's the billion dollar question! Stay tuned....

Oh yeah for those on fentanyl patches or other type of narcotics, please never stop them all at once like I did ( in my defense, my pain doc did not tell me this and should have!). I have been going thru withdrawal symptoms which in a word are AWFUL. Back on the patch just to begin the weaning process. Praying for all of you out there fighting.....keep fighting.

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Gracie's picture
Replies 5
Last reply 1/12/2011 - 4:08pm

 On Dec. 15th, I received my 5th dose, 1st of maintenance, of Ipi or placibo with minimal if any side effects up to this point. On Dec. 23 I woke up with a rash behind my ears.  I stopped using any lotion or perfume and within three days, had a raised, welt- like rash around my neck and shoulders. I use hydrocortizone cream with little relief.  It has not changed in 10 days.  It itches if I touch it.  I can't think of anything that could have caused the rash.  I have appt. with Oncologist on Wed the 5th. Has anyone experienced small welts in the form of a rash due to Ipi treatment?  Is it unusual to have rash around neck and shoulders? 

Gracie, 3b

cancer is in my life, but is NOT my life

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Sherron's picture
Replies 4
Last reply 1/12/2011 - 11:48am
Replies by: Lori C, Sherron, Linda J, JenC

Haven't heard from you in a while...How are things going?

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Anonymous's picture
Replies 3
Last reply 1/11/2011 - 11:15pm
Replies by: JakeinNY, Fen, Janner

Hi,

I'm looking for some reassurance. I am stage 3a, NED 3 years (almost)...I've been experiencing horrible bouts of dizziness lately, so bad that I can't drive at times. My family doc thinks its an inner ear infection (no symptoms of this present) and that I'm experiencing vertigo. I want to trust that is all that it is, but...you know how it is....is this something I should see my oncologist about?

 

Thanks for your responses.

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Becky's picture
Replies 2
Last reply 1/11/2011 - 10:48pm
Replies by: Becky, Janner

Ok so even though its been 18 months, I still pour over my sons pathology report like I may find out something new...probaby the same reason I over-google and read the same articles over and over and over (neurotic mom?).

My question is, what is the difference between surgical pathology and immunohistochemistry ? One looks at the actual tumor and one the slides? Which would be more accurate?

Sons case was so unusual that it was send to 3 pathologists so I am just wondering...

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Kmazz99's picture
Replies 12
Last reply 1/11/2011 - 7:13pm
Replies by: Kmazz99, dian in spokane, lhaley, Anonymous

Hi everyone. Im new here. In Nov of 2008 I was diagnosed with Melanoma (on my abdomen). I'll make the long story short. Had the wide excision and dissection of the inguinal node. Pathology on that was fine. recently had some pains in left breast so I had a diagnostic mammogram. They found no mass etc in the breasts but did find Bilateral Axillary Adenopathy. They requested ultrasounds of those areas. They said the nodes are palpable and large but as of now not certain whats infecting them. Do you think its possible that after these two years of being "ok"...this is back or there is a possibility? I am scared. I am not set for u/s until late next week and with results after that, feels like forever to wait. Just curious if anyone can tell me if theyve had experience with this. That would be quite a spread to both armpits. But I have had issues in my left armpit since about 2 months after surgery in Jan 2009. From a rash that they couldnt diagnose or fix with topicals etc. to now being a non itching patch of discolored skin about 3" by 1" in size. Please help. Karen

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emilypen's picture
Replies 3
Last reply 1/11/2011 - 7:07pm
Replies by: EricNJill, emilypen, Anonymous

Hi All,

My husband is on a trial of GSK MEk and P13k inhibitors and after 4 months he's developed a full body rash ( dermatitus) that is incredibly itchy.

They tried cortisone cream - didn't do much.

Now they have him on oral antibiotics and an antibiotic cream. Wondering if anyone else out has developed the rash and exactly what they're using to deal with it.

Wouldn't be so bad if it wasn't itchy! :-)

thanks in advance.

 

Emily

 

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Here is a link to the Immunotherapy and Vaccines webinar with Dr Jedd W at Sloan Kettering from has last night

http://www.melanomaintl.org/news/Webinarx_Vaccines.html   if anyone wants to watch it

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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