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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Anonymous's picture
Replies 7
Last reply 4/20/2015 - 12:59pm

For those with Brain mets, how do you deal with them?  Are any of the therapies that you are on crossing the blood brain barrier?  Do you get yours radiated as they pop up?  And does it work?

My dad has had 3 brain mets to date, not counting the new one found today.  2 were resected via a craniotomy and then radiated.  The last one was radiated.  All 3 were totally gone for almost the past year.  Then scans today revealed another one popping up (only about 1cm).  They feel that they can radiate it easy enough, but I'm just scared of what is next.  There are clearly cells in his brain with melanoma, so this could happen again at any time.  What is working to rid the brain of melanoma, other than surgery and radiation?

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braunerk's picture
Replies 2
Last reply 4/20/2015 - 11:36am
Replies by: braunerk, Ed Williams

Is there any difference with different therapies with having 
Acral version of Melanoma I have Acral and have not responded to Ippi or it seems Keytruda. Don't know where to go next for treatment. My doc is thinking doing  Ippi again but not sure. Any suggestions would be helpful 

 

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jahendry12's picture
Replies 4
Last reply 4/20/2015 - 11:32am

I wanted to post a question that I have not been able to get answered via internet searches.

My husband is Stage IV and NED for over 2 years now :)  I know that we will be having scans for the rest of his life, but if he remains NED for > 5 years, would he then be considered a lower stage or is it once Stage IV, always stage IV?

Thanks for any input.

 

Julie

 

 

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Janner's picture
Replies 4
Last reply 4/20/2015 - 11:12am
Replies by: Janner, ldub, Bubbles, Aiden

 I was diagnosed stage 1a (translates to stage 1b with today's staging) 23 years ago.  I've had two other primaries but am still stage 1b. I just realized that my adoptive father passed away 1 year ago on my anniversary from melanoma.  The anniversary was forgotten last year but I realized the connection tonight when someone emailed me about my responses here and I put into words my long history.  I miss my Dad but he was 89 and had lived a full long life.  The irony that he would get melanoma and pass away from it after my long history never failed to amaze me.  

Anyway, there are lots of early stagers who go on with life and stay early stage!  Never assume the worst!

http://www.MelanomaResources.info

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JerryfromFauq's picture
Replies 4
Last reply 4/20/2015 - 10:09am
Replies by: mary1233, Anonymous, tschmith

I am looking for info on c-kit mucosal melaonma patients responses to Ipi.  Not much info found.  Here is one article.          The overall response rate by irRC in evaluable patients was 6.7% (2 of 30 patients; . By the mWHO criteria, at the time of the first radiographic assessment (approximately week 12), one CR, one PR, and five SD cases were observed. Twenty-three patients had PD at the time of the first scan. One patient classified as irSD was reclassified as having PD by mWHO given the appearance of new lesions. The overall response rate in evaluable patients by mWHO (6.7%, 2 of 30 patients) was identical to the response rate by the irRC.

   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4063400/

These numbers are scary.

I'm me, not a statistic. Praying to not be one for years yet.

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lesli's picture
Replies 4
Last reply 4/20/2015 - 8:00am
Replies by: _Paul_, arthurjedi007, lesli

Hi All,  my scans at 7.5 weeks on Keytruda are showing universal growth in all lesioins.  In all hope, could it be inflammation?  How long to proceed treatment before considering another option (there is still a question about what that is)?  That is, what is the definition of "failed" on Keytruda?

Thanks in advance. Leslie

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410451's picture
Replies 12
Last reply 4/19/2015 - 11:20pm

My dad was diagnosed with melanoma last summer (originally diagnosed as Stage 2b but Breslow scale 5).  His primary tumor on his trunk was removed in May.  In October it was discovered it had spread to nearby lymph nodes and a baseball sized lymph node full of cancer was removed.  The radiation oncologist strongly encouraged radiation (which I tried to discourage my dad from taking).  In December he started 30 sessions of radiation.  CT scans after radiation showed the cancer had spread to both lungs (at least 10 spots).

Dad is 73 and has less than a healthy heart and lungs before the cancer had metastasized to his lungs and several other issues common with aging.  Because of the side effects of treatment and the low success rate, he has opted not to take treatments.  He could change his mind but  would have to before the cancer burden was too high on his body. 

Recently he has feeling good and had returned to normal activities. He's still pretty active and enjoys outdoor activities, wood working, etc.  But, most of this week he has felt nauseous and has slept a lot during the day.  This is very unusual for him.  So, at this point, I would like to think it's just some bug he's picked up but can't help but wonder if it's the cancer making him sick.  I will call the nurse on Monday to get her input but I also would appreciate if others would share their knowledge.  I live a few hours away from my dad so I know a time will come when I will have to spend a lot more time taking care of him but with a full time job, my own family, the unknown is tough.  So, if anyone has a family member that has gone through something similar as my dad, I would appreciate the candid feedback.

Thank you.

Melissa

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arthurjedi007's picture
Replies 15
Last reply 4/19/2015 - 10:23pm

I have my next scan Monday and my doc is already thinking I should be on his ERK trial. Zelboraf and the taf/mek combo both failed me wih zelboraf having really poor quality of life side affects while I was on the med. So I'm very Leary of these targeted therapies for me. If they had shrank even one tumor I might be less skeptical but they didn't. Yervoy didn't shrink anything either. Only keytruda has done that. So for me at least I don't see how this ERK will be any different. It just targets a gene further up the same chain. Granted I'm glad they have something.

They did say they have had 2 people have partial remission so it does help some people. So am I being stupid to not do this or is there something better for me?

For about 4 weeks I've been feeling great and my LDH has continued to drop to 301. Way better than 840 in January. I can walk non stop for 30 minutes again. Sure I have issues and pains and tire out fairly quickly but nothing like a few months ago before the ton of radiation which I think I've fully recovered from.

I think TIL is a good option since Im strong enough now but I doubt if the scan will show any non radiated tumor they can harvest but it might. They wouldn't do the harvest and store it for later at Bethesda at least not for me when I asked.

i also think pd1 combined with some other med like maybe antilag3 might be good for me. The plan was after this scan if needed to go to dr Gajewski in Chicago to see what he thinks is best for me since he has that trial.

Otherwise I'm not seeing other options for me. Most I'm excluded because I've done standard treatments. Some like the awesome virus treatment in Utah I'm excluded because I have bone metastasis.

So I'm very frustrated about not seeing good options and very worried especially since the nurse called me about this ERK thing today. Same trial they said at my last scan in november. I'm still hoping though the scan Monday shows no new stuff and everything shrinking or staying the same. That would be a first for me and I would stay on keytruda and thank God for such a miracle.

Sorry to bother everyone. I guess the scanxiety is really getting to me especially after that call from the nurse today about ERK.

Artie

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Ginger8888's picture
Replies 5
Last reply 4/19/2015 - 7:07pm

Went and got my scan results yesterday and i am still NED and have been since Aug 13th, thank you Yervoy!!! One more good 3 month scan and i get moved to 4 months..

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Hstevens0072's picture
Replies 3
Last reply 4/18/2015 - 9:42pm
Replies by: _Paul_, Hstevens0072

I've been on the MK 3475 clinical trial for almost two years.  It's been pretty smooth sailing, joint pain and fatigue were the worst side effects up to now.

All of a sudden my blood sugar has risen, today's fasting was 346 and I've been on Metformin for six weeks and have been watching my diet.

has anyone else experienced this?  I'm very worried they will take me off the study.

thanks,

Holly

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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RoxAnn's picture
Replies 5
Last reply 4/18/2015 - 6:43pm

I was diagnosed in 1997 with Melanoma, had surgery, had a year of Interferon, horrible stuff as some of you may know. It is now 2015, Melanoma is back again, same leg (on back of right calf), just this time on the front. I had SNB, then had 8 more nodes taken out, oh how painful this is. I am a Veteran, being seen at the James A Haley Hospital in Tampa,Fl.  I spoke to an Oncologist there who has "Interests" in Melanoma, who is from  Moffit Cancer.  First of all, she seems to be "not in a hurry" with me. I recently found out my Mitotic Rate was 20 and found out that is NOT GOOD, I am scared to death. I only saw her for about 5 minutes and she said she has 90 days in which to start some type of treatment, WHAT?!?  I had surgery on the 17th of March and went home the 23rd. Sure I am still in pain, and she told me a while ago, that no matter what I am diagnosed, wait, she said I was diagnosed 3 something, and would let me know if it was a, b, or c after my last surgery, but no matter, my only option of treatment was Interferon again, even if it was a, b, or c. I feel I am being slighted somehow. When I had Melanoma in 1997, I was treated right away. First of all, here is a bit of history. I had my first biopsy way back on the 9th of january, yup, I said january. 2 weeks later, I had another wider biopsy. The BIG surgery was March 17th. Seems to be long drawn out. Is it just me thinking this? Help.

 

RoxAnn

Metastatic Melanoma, Stage IIIa, never giving up Hope!

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chowmene's picture
Replies 1
Last reply 4/18/2015 - 2:21pm
Replies by: Janner

can or is pain associated with mole growth?

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dentholla's picture
Replies 1
Last reply 4/18/2015 - 12:29am
Replies by: Janner

***Once again - this forum is a life saver***  For each of you reading my posts and responding I THANK YOU!!!  This is a team effort and we are all our own advocates in winning this race!

The results from my husband's WLE and SNB (node positive) show that there is no residual melanoma in-situ but does say residual malignant melanoma, 8mm?????

History is 1st path (shave biopsy) estimated >.8mm with no clear margins

WLE path shows the above mentioned residual comments and confirmed depth at 1.5mm.  All margins are negative for melanoma (closest margin 1MM (MEDIAL).  With lymphoascular invasion present I am wondering if we do a 2nd WLE because of the closest margin or are we okay?

We are scheduling a PET for next week and God willing moving forward with a modified neck dissection.  What do the residual malignant melanoma comments mean?  I can't find much information about it.

Would appreciate any insite on this if you have the time.

 

Not anonymous - sorry for the multiple posts :-)

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Debideb's picture
Replies 3
Last reply 4/17/2015 - 8:45pm

I am a 5 year survivor of melanoma.  When I was first diagnosed I was on this site almost 24/7, and I can't tell you how much it helped me and gave me courage and knowledge.  

I just watched the latest episode of Undercover Boss about a gym chain called Retro Fitness.

I the opening couple of minutes, the CEO, Eric Casaburi, brags that his gyms offer tanning beds...of course I cringed, and thought to myself that here was another person obviously oblivious to melanoma.  

However, In the very next minute or so, Eric reveals that his mother died when he was only 16 of MELANOMA!  Needless to say, I was horrified and outraged at the same time. I wrote an email to the company expressing my horror that they promote tanning beds and that tanning beds greatly increase the risk of melanoma,  and the CEO himself sent me this reply from his email address, ECasaburi@retrofitness.net:

 

Do your homework it's safer than tanning in the sun and in a controlled environment. 

 

Go to the facebook page for this company https://www.facebook.com/retrofitnessgym?fref=ts  and express your concerns.  One way to help save people from this deadly disease is to educate them about the dangers.  Knowledge is power.

 

God bless all of you and thank you for reading this.

 

Debideb

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Joe.Pro's picture
Replies 15
Last reply 4/16/2015 - 9:48pm

Diagnosed last week with Melanoma on the bottom of my foot after my podiatrist did a punch biopsy on a lesion I've had for approx 18 months.  It was pretty nodular and had started to grow in the last couple of months especially.  

Brain MRI was clear

PET scan showed a lymph node in my groin (which I can feel) as suspicious of cancer.  

Surgery next week to remove the lesion on my foot (along with several toes) and all of the lymph nodes in my groin/pelvis on the affected side of my body.

Here is my question...

i am being treated at Dana Farber in Boston and my onc asked me if I'd like to be in a trial for a specialized vaccine that is made from my specific tumor.  Apparently they take the tissue from the tumor and create this vaccine with the hopes of preventing recurrence. Sounds interesting but since this is a new trial (only 5 or so people so far) the data is very limited (however she did say that mel hasn't returned in any of the enrollee' so far although I didn't ask about time frame) or....

Interferon

Seems like a tough decision, was hoping maybe you guys could help me make it easier?

Thanks so much for your feedback and God Bless each and everyone of you!

Joe

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