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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arthurjedi007's picture
Replies 7
Last reply 7/27/2014 - 4:51am

Just thought I would share some good news for those who have struggled through failed medicines and have landed in Merck's EAP PD1.

I confirmed with my Mayo doc the visible lump on my head that was bigger than my thumb is almost all gone with only 3 doses of this stuff. He was suprised to see a response so soon. He doesn't expect to see responses until after the 6th dose but everyone is different. The other 2 visible tumors are staying the same size according to his tape measure. Of course we have no idea about the internal ones but I am feeling better. My back spasm twinges are far less frequent. Blood work is ok with the ldh finally starting to go down a little from 423 to 399.

Someone said on here that no matter how many medicines fail you only have to stay strong and find that one that works for you. That has kept me going so much and I finally believe this is the one for me.

Unfortunately Mayo has an institutional policy that I have to have a scan before my 5th dose which is august 13th. My doc does not agree but his hands are tied. I really hope they keep me on this stuff because it works for me. He did say they evaluate immunotherapy results different than other results.

Good luck to everyone. Keep the faith no matter how dark things seem. There is hope.

 

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tcell's picture
Replies 5
Last reply 7/27/2014 - 4:43am

Hi all,

- diagnosed with stage IV in Februrary with lots of tumors in lungs, chest, abdomen, liver, bones

- good initial response to Taf / Mek, last scans in May showed considerable shrinkage everywhere

- bloodwork in June already not 100% ok so put staging one month earlier to July 21

- results show considerable growth in chest, lunhs, one liver met shrinking, one growing....bones stable. I got chest pain and cough and I am scared to death which I guess is kind of normal.

Guess that's it for the combo. Discussed with my specialist. Next step will be Ipi and continuation of Taf with just short breaks before and after the infusions. He said that there are good results from an Australian Phase 1 trial with that Combo. He hopes that Taf will put kind of a brake on tumor growth as my burden is rather high until Ipi kicks in  He says it is important to discontinue Mek as this caused severe troubles in combination with Ipi.

next option if something goes wrong will be Anti-Pd1 EAP. I hope, however, not to fail Ipi.

any comments, suggestions and uplifting words are welcome!

Thanks to all of you who are of such great help in dealing with this illness.

Chris

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ymellin's picture
Replies 2
Last reply 7/26/2014 - 6:10pm
Replies by: ymellin, Janner

Hi, I just had surgery this past week for melanoma in situ. The area was the front of my right shoulder and I have a 3 inch incision. Am waiting for biospy reports to return to make sure that all is clear. Can anyone tell me what happens after this? 

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hchemotti's picture
Replies 8
Last reply 7/25/2014 - 10:35pm
Replies by: hchemotti, ltalley, Anonymous, hbecker, Janner

Hello, I just this week got diagnosed with Melanoma, on my collar bone. Have not gotten the specifics, but have been sceduled for a wide ensicion next week, thier first available appointment. I am very nervous, I am open to any information that would help in this situation.  I am also oddly expeirencing pain in my left underarm, starting around the time of the biopsy.  I am also worried because it is so close to my neck that it may be easier to spread? I wish they would tell me more over the phone. Any help would be great.

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/25/2014 - 5:58pm
Replies by: RJoeyB, OzzieK, Anonymous, Bubbles, Ed Williams, shanemcdonald99

My mom is starting MK-3475 on Tuesday after no success with Yervoy.

Matted nodes removed mid-February 2014. They had to leave a small piece on her vein so as no to compromise the vein/leg.

Lymphodema of her leg and extreme swelling of her abdomen. Fatigue, sleep deprived, can't get comfy, swollen stomach causing loss of appetite and nausea. Scan Last Friday shows cancer moved to nodes in stomach, hence the fluid in her belly. Brain scan negative.

Starting MK-3475 on Tuesday. I'm not sure what to expect.

Doctor stated that if she waited and gave the Yervoy more time to work that she could find herself bed ridden with organ failure in a couple short weeks. This seems to be her only chance.

I can't seem to find anything definitive on what her chances are with this trial drug. It's now an expanded access protocol, so we do know that she won't get the placebo.

Does anyone know where I can find anything that outlines the effectiveness of MK-3475? I know there is no black-and-white here, but I just need something, anything, at this point.

We are all a mess. Worst nightmare. There is no other way to say it. Watching the most important person in your life go through something like this is beyond heartbreaking. Watching my parents cope with it, together, is beautiful and also so incredibly sad. My mom is such an amazingly strong and profound life force to SO many people. I am still in denial and coping - if you can call it that - poorly. I don't even know where to begin.

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/25/2014 - 3:57pm
Replies by: LindaR
After meeting with my dr- this test tested the genetic make-up of my specific melanoma tumor to check the likelihood of reoccurrence. It came back that mine is highly likely. Do any of you know of a test that is valid like this? I posted the link in my last post- it is skinmelanoma. do any of you know of a test like his that is valid? Because now I am scared to death. 
 
Thanks for all your insight.

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Polymath's picture
Replies 5
Last reply 7/25/2014 - 3:23pm

After going Stage 4, I went on Zel (Dabrafenib) being BRAF positive.  Horrendedous side effects, but very effective in dissolving tumors.  But after only 3 months I progressed.  I took a 2-week break off all meds and immediaily began to recover from the Zel side-effects.  Then started the TAF/MEK combo, which has had virtually no side-effects but has been much less effective.  Stable for a couple of months, but by 3rd month progressing again.  So I am again going to do a washout, this time for 3-weeks or more before beginning Yervoy.  My question is have others had what they feel as better experirinces and results with the cleansing period between drug therapies, or do I run a serious a serious risk of rapid tumor grouth with no inhibitors at work?

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Dear MPIP Community,

We are looking for volunteers in the Chicago and Dallas areas. Our partners at the American Academy of Dermatology (AAD) need volunteers to help with skin screenings at a few NFL games in those cities. Volunteers are needed for the Chicago Bears Family Fest on Saturday, August 2nd, the Dallas Cowboys home opener on Sunday, September 7th and the Dallas Cowboys Rally Day on Monday, September 8th. If you’re interested in volunteering, please email AAD’s Tina Shepherd at tshepherd@aad.org

Have a great weekend,

Shelby - MRF

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Just wondering if anyone heard from melfighter? I know her husband is going through a lot and was supposed to see his UCLA doc last Monday. Am hoping everything turns out good.

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Gene_S's picture
Replies 1
Last reply 7/25/2014 - 12:58pm
Replies by: Gene_S
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 1
Last reply 7/25/2014 - 11:46am
Replies by: ltalley

http://www.wggb.com/2014/07/20/mass-boy-diagnosed-with-cancer-wants-cards-for-his-birthday/

 

If you would like to send a card to Danny, you can mail it to:

Daniel Nickerson
P.O. Box 212
Foxboro, MA 02035

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Drew.E's picture
Replies 23
Last reply 7/25/2014 - 9:59am
Replies by: Anonymous, Drew.E, Jewels07, 5dives, brittanyx, JerryfromFauq, Fen, Jme

I went to see a dermatologist about an odd spot that I had for years that recently had a raised bump, punch biopsy and 2 weeks later I was informed it was Melanoma and the I needed to see a Surgical Oncologist, as well as notify my family. So I left and made an appointment with the specialist at the state cancer center and then followed up to get my report

1.8MM Breslow, Clarks Level IV, Mitosis rate 4mm/2, No ulceration, Margins invloved by tumor and moderate lymphoid infiltrate at the base.

My appointment is still a few days away and not sure what to expect other than review the results and schedule surgery and additional tests.

Any feedback reccomendations?

 

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MattF's picture
Replies 8
Last reply 7/25/2014 - 8:52am

Hello All

Just a quick update.... newest PET /CT showed increased activity in my bones, lungs and liver

 

Plan now is to stop the Tafinlar and Mekinist as of today and make the switch to ;Yervoy (Ipi) within a week or so once insurance is done.

 

it seems like the right course of action. 

 

Any thoughts?

 

Thanks 

Matt

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Replies by: miu2, NYKaren, boot2aboot, nicoli

Hi guys,

i will target my posting for those of you with hair loss and trying to figure out options...as i looked for something to slap on my head that was'nt

A ugly

B hot as heck

C affordable

i came across stuff that looked like i belonged in Iran...or looking like i was 80 years old...or looking like a bad biker chick...BUT

i found this really cool site (of course not in U.S.) that answers all of my problems with chemo cap...

it is made from a company called Buff

and they make a product called Buff UV visor evo2 which is way hip and cool...they make this visor in all kinds of combos, totally reversable, totally adjustable and wearing it doesn't make me feel like 'ugly victim'...it's great for UV protection and you can wear it when your hair grows back and still look hipcat...

http://www.buffwear.com/catalog/index.php/cPath/53_90

even though it's a UK company, you can still order from the states...i thought the melanoma website should maybe sell these here...

 

stay away from the pink ones...i opted for the black one...i thought that was 'appropriate'...

boots

don't back up, don't back down

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ncdaniel's picture
Replies 8
Last reply 7/25/2014 - 12:50am

Velma Krumm my wife of 44 years died of melanoma. I want to thank all the people from MRF who post and read this site. I received advice several times on this site that was vital to my wife,s care ( thanks nykaren) . All who post and answer perform a vital service to all.  My wife and I were very fortunate to have a doctor in Boone, No who after removing her tumor and telling us she had stage four cancer to go to a melanoma specialist for treatment. We did that and in am sure because of her care at the university of Michigan she live a lot longer than initially thought.  So for all who read this please make sure you are seeing a melanoma specialist it could extend your life or pro idea cure. I know without a doubt Velma is in heaven and now NED.  All who post , read and answer keep up the good work.

    Daniel

 

 

Trust in God - Live one day at a time

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