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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Rebecky's picture
Replies 11
Last reply 5/20/2014 - 8:39pm
Replies by: Anonymous, Rebecky, Janner, Teochasse

On Melanoma Monday I wanted to check back in here to let you all know what a tremendous gift this community was to me a decade ago when I was diagnosed, particularly between the intial results and receiving the results of my WLE/SNB. Ten years and two beautiful children later, I am forever grateful for the gifts I have received and continue to keep everyone in this community in my thoughts and prayers. Thank you.

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Nadia's picture
Replies 9
Last reply 5/20/2014 - 11:31pm
My husband was enrolled in the BMS ipi/nivo three arm trial, he showed both progression and new growth and was kicked out. When he was unblinded we found out he was on the ipi only arm. He is not eligible for the EAP Mercks trials since he is Braf positive and he never took any Braf drugs yet. He started two days ago to take Dabrafenib.
 
The plan right now is to let Dabrafenib to do it's magic, for as long as it works, 8 months average, and then go for the antiPD1, hopefully available either as EAP or as standard care for people that failed ipi and Braf meds.
 
But I do have this thing in mind that really stresses me out. As almost all the stats I read are saying that antiPD1, which as of today is everybody's dream treatment, is only working on 38% of the patients! what if Dave is one of the unlucky ones? Is there a test out there that tells if his melanoma cells are expressing PDL-1 and antiPD1 will work? I'd rather know this sooner rather than after months of unsuccessful treatment, and try to find another line of treatment, like TILs. 
 
I would only hope that my answer lies on one of the tests that BMS performed on his blood and melanoma tissue they biopsied. I understand why BMS would not make this public information, they obviously don't want people leaving the trials when they find out antiPD1 doesn't work on them. I am not going to bring up any ethical issues I may have. I just want an answer: is there anywhere in US or Canada, heck, even in Europe a lab that would analyze Dave's blood or melanoma tissue and tell us if his melanoma would respond to antiPD1 or not?
MariaS
 
Posts: 7
Joined: 24 Jan 2014 23:28
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Aloha all!

I will be at Plum Island for 2 weeks next month if anyone wanted to get together - nope not on the island itself cheeky.  If I remember right I will be in the Orient Point area at the Silver Sands motel.  LMK if anyone is interested.  I will be free in the evenings and weekend in between.  I am going for some training on the island.  Apologies for not posting on the OTBB but no one goes there any more.

I hope to see Carole K there and anyone else.

I get in at 7 AM at JFK and will have to wait until 1PM or so to get a shuttle to Orient Point.  How feasable is it to make a run out to the Sept. 11 memorial museum during that window of time?  I will be arriving on a Sun.

Aloha,

Kim

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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beatricefromPARIS's picture
Replies 1
Last reply 5/21/2014 - 9:08am
Replies by: Tina D

Hello Tina,

A quote from one of your 2012 messages when you had to stop Zel because of uveitis

"My pupil is actually shaped like a sideways heart at the moment... looks rather unusual, haha!"

Did that pupil problem solve in the end and how?

I also had to stop Zel because of uveitis early January. 2 months after stopping, I developped on one side a drooping eyelid and enlarged pupil (reactive but larger than in the other eye). Exams have ruled out serious causes such as problems in the brain which could damage eye nerves.

My ophtalmologists here seem puzzled by this rare occurrence.

Just curious to know what your experience is...

Thanks in advance

 

Beatrice

 

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starletwoman2007's picture
Replies 3
Last reply 5/21/2014 - 9:09am
Replies by: ecc26, starletwoman2007

Just been told that my brain mets have got worse and that need wrbt. I am currently on vem only. Just wondered who had had it and been any effects. Also how successful has it been for people?I

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Momrn5's picture
Replies 6
Last reply 5/21/2014 - 9:20am
Replies by: Momrn5, Thandster, G-Samsa, tcell, JerryfromFauq, Anonymous

I am Stage 3a with micromets to the Sentinel node only.  Had scans 5 months ago showed a couple abnormalities.  I had a follow up brain/head MRI and Chest CT yesterday.  The 2 mm and 3 mm nodules in right lung did not grow  and Onc. Told me he feels that they are granulomas and nothing to worry about.  That being said, he wants a follow up CT in 6 months.  The uptake is still " different" on the top of my head, but he said that they feel it's nothing. Possibly an abnormality that resulted from a head injury when I was a kid.  He won't order another MRI for a year.  All blood work including LDH normal.  Now the question....I am thinking of getting my next CT scan locally because of the distance I have to travel. I live in a smallish town in the U. P.   Would people in this group feel OK doing that? Or should I stick with the scans at U of M?   Opinions requested.  Thanks! 

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MixtaJones's picture
Replies 8
Last reply 5/21/2014 - 9:41am
Replies by: MixtaJones, JerryfromFauq, hbecker, Anonymous, Teochasse

I am trying to find some information in regards to how fast melanoma spreads in the body. I cannot find much online so figured I would turn to people with experience.

I first had a mole removed in July or 2013 that was a superficial spreading melanoma .97mm deep. My general practitioner removed it a biopsied and found it was melignet but since the margins were clear he said I was fine. No more tests. 8 month later I found a lump under my arm and was diagnosed with early stage 4 shorty after. My big question is what stage I was at when the mole was removed? I know it had already started to spread I have no clue how to figure out how much worse my situation has become becasue the doctor didn't do any further testing. Does any have any input they can give me?

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

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braunerk's picture
Replies 3
Last reply 5/21/2014 - 10:39am

Well a little history April 2007 stage 2a with me on left foot on arch/bottom of foot April 2014 small subq met on left leg stage 3b May 2014 I ended up in hospital with septic shock and was able to get them to image my abdomen and they found a mass 7.5 cm by 6.6 cm and involvement with lymph nodes so now stage 4. Also got them to scan the brain and no involvement at this time. They have sent tissue samples out for gene testing and them will decide on treatment. Any suggestions on which treatment would be best. Still can't believe what has happened. I am seeing a mel specialist in Tucson AZ so got that covered. But any other suggestions would be helpful

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Shelby - MRF's picture
Replies 4
Last reply 5/21/2014 - 12:06pm
Replies by: Anonymous, IntegratedResearch, Tina D

Dear MPIP Community,

We were recently contacted by Integrated Research and Data, a research company based out of Ft. Lauderdale, FL. They are currently searching for melanoma patients, diagnosed at different stages, to participate in an online survey. The goal of their research is to understand different aspects of patient needs and treatment plans. 

The first step would be a screening done by phone. Follow-ups would then be done to get the right amount of different types of patients. If you are selected to participate in the study, you will be given a $150 Visa prepaid debit card. The survey, if you are selected, is expected to take approximately 40 minutes of your time. The survey is encrypted to meet HIPAA compliance and particpants will not be contacted afterwards unless it is to confirm your mailing address to send your payment. 

If you are interested, please email MelanomaStudy@IntegratedResearchandData.com and you will be contacted to pick a time that is convenient for you to go through the 5 pre-screen questions. 

I hope everyone has a nice weekend!

Sincerely,

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/21/2014 - 12:15pm
Replies by: Mat, ecc26, starletwoman2007

Can someone tell me whether they have had wbr and if was successful. Did there hair grow back?

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/21/2014 - 2:09pm
Replies by: NYKaren

Can you tell me ate there any people out there who have had long term brain mets. I have just been diagnosed with them and just wondered if I stood a chance x

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SamC 23's picture
Replies 4
Last reply 5/21/2014 - 3:27pm

I met with my Thoracic surgeon today and feel relieved yet still nervous for what lies ahead. Next Tuesday he will perform an EBUS, I didn't know but lymph nodes in my lung are enlarged. He will biopsy the nodes and hand them over to a pathologist in the OR and determine if it is MET or not. If it is MET they will leave the node in my lung as a marker for treatment. If the lymph nodes are negative a wedge resection will be done. 

in essence more surgery is better then a little. I'm staying positive for the best outcome. Definitely sucks having to wait yet another week to determine what is going on.

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GrammyM's picture
Replies 8
Last reply 5/21/2014 - 3:30pm

My husband was diagnosed with stage 4 melanoma 2/27/2014 when his horrible back pain proved to be a tumor on his spine, with active cells in brain and lungs.  At 6 ft and 160 lbs, he has always been a health nut, eating right and daily trips to the gym.  After two separate week long hospital stays for pain management with concurrent radiation treatments he has dropped to 122 lbs.  With so little fat, the loss is muscle and he can walk only short distances with his walker.  Has anyone out there come back from a weight loss like his?  If so, please tell us how.

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rgrand's picture
Replies 3
Last reply 5/21/2014 - 3:38pm

Got hone from surgery about an hour ago. Medical nuclear imaging took longer than my surgeries did! I was in the operating room for 1:50.

No nausea from anesthesia. Now I have to keep my foot elevated for a week.

Awaiting WLE biopsy and SLN biopsy now.

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