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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AnitaLoree's picture
Replies 11
Last reply 9/20/2014 - 5:12am

Would really appreciate hearing your treatment experiences on pembro/Keytruda.  What should we watch out for?  Husband due to start infusions next week with Kaiser general oncology, NOT @ melanoma specialty ctr :-((.  Worried that he will not get: smart care, knowledgeable providers, prompt, appropriate care for side effects. Noted posting for "Askanurse@melanoma.com" and will contact plus thoroughly read complete pharmacological info.

Bcs husband's mel cervical spine (C1-3) location so rare have not posted in long time but have monitored your posts which have been so very informative and helpful refs. 

Hx: Resection surgery, partial, 10/28/13. Husband has unk origin vs primary extra medullary intradural mass anterior to cord @ mid C2 (13x7x4mm) with contiguous mass in the ventral cord @ mid C2, con't unchanged from MRIs post focus beam radiation 02/14. Unk if tumor grew after surgery bcs pre radiation MRI not done.  PETs neg for addt'l tumor sites (he is SO lucky).  Since tumor has been stable, plus they don't know what to do, Kaiser counsels "Wait & See" (!!! like for what?).  Got ref to UCSF mel ctr and could enter ipi/pembro/IL-2 trial.  Worried about ipi as so many have posted that ipi enlarged tumors before shrinking/disappearing.  No room for enlargement here and any more damage would be permanent.  Already permanent tingling numbness hands, feet, no temperature sensitivity left side.

With the early FDA apprv'l Pembro, Kaiser can give & will per our request. It will not be necessary to survive ipi 1st.  Would like to go to UCSF for mel mgt but don't have open period to change plans until end of yr.  Too long a wait.

Have him taking turmeric (curcumin+piperine)/Jarrow formula - @ Whole Foods;  3x/d glass Japanese green tea, Sencha/Macha highest in EGCGs, available Costco; no inflammatory foods, hi glycemic index foods; mostly alkaline foods, kale smoothie every day, Vit D3 1000 IU daily; safe fish (use Monterey Bay Aquarium guide app); organic fresh, raw, veggies, sprouted grains, no processed stuff.  Really not huge difference from previous eating pattern.  Just have dropped the wine, beer, desserts, muffns and some of the grains that are more acidic.  Did this help keep his tumor in check???  Feel good about being able to do something that has quite a bit of good studies and data to support helpfulness of wholistic approach!

 

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Teri in Dayton's picture
Replies 6
Last reply 9/20/2014 - 3:15am
Replies by: MissyT, Squash, Melissag0624, Anonymous, gaby

I was diagnoised  stage IIIa/b in August 2014.  I'm looking for any information or advice from anyone using pegylated interferon, Sylatron. It has been recommended by my Oncologist. Thanks for your time.

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DZnDef's picture
Replies 9
Last reply 9/20/2014 - 12:42am
I had a fresh set of CT scans done yesterday and reviewed them with the oncologist in the afternoon.
 
Dr. O'Day walks in and says "Good news.  You've had barely measurable growth on two nodes no growth on the others and no new metastases".  He then turned to his colleague and said "her immune system is keeping her cancer in check".   He doesn't want to see me for another 4 months.
 
I see my Naturopath next week.  We'll see what tweaks she suggests to my approach.  My next review, I want Dr. O'Day to say none of them grew (dare I hope for shrinkage?)
 
I'm very happy with these results.  As far as I'm concerned, the existing cancer is welcome to stay right where it is and serve as a physical reminder for me to keep my new healthy habits.  As long as it stays put.
 
If it does continue to grow (he said it could easily double in size before it would cause me any problems) I will at that time begin whatever is the best available medical treatment (Ipi, Anti-PD1, Anti-PD1L, BRAF combo, etc).
 
I would like to point out that I discovered my disease accidentally via chest x-ray, not because I was having symptoms.  And although it is Stage IV unknown primary (it is in my lungs) it is an "early" stage IV.  Which begs the question:  Is the slow rate of growth due to the lifestyle changes I have made or is it merely the normal rate of the disease when it is this early?  There is no way to know for certain.  I choose to believe my lifestyle changes are playing an important role but even if I am wrong, it has allowed me to enjoy a quality of life far superior to what I was living before and the drugs will still be there for me should I need them.
 
I am counting my blessings.  I hope this post finds you all feeling well.
Maggie

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BrianP's picture
Replies 6
Last reply 9/19/2014 - 10:01pm

Hey Chris,

Was just wondering how you are doing.  By my calculations you should be coming up on your 3rd Ipi soon.  Hope things are going well.

Brian

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Hstevens0072's picture
Replies 1
Last reply 9/19/2014 - 7:59pm
Replies by: SteveH230

I remember reading a blog of a young mother that had melanoma.  She lived down South and I think went to Vanderbilt for most of her treatment, although is think she also went to MDAnderson.  

Can anyone tell me the name of her blog?  I found it so inspiring and would like to read it again.

Holly

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

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/19/2014 - 7:20pm
Replies by: biancopus, tschmith, Anonymous, arthurjedi007

Hi

I am a stage 4 patient and have failed two treatments.I wonder whether others have been in the same position and what they did bout it

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Melissag0624's picture
Replies 6
Last reply 9/19/2014 - 9:01am

For those people who have brain mets, what was your first symptom? I am stage 3b and have extreme dizziness and I am worried. I have called my doctor, waiting for a call back......just wondering if anyone's first symptom was dizziness.

P.s. sorry for overreacting, it's hard to not go straight to the cancer when new things happen.

<3 Melissa

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scragfinch's picture
Replies 15
Last reply 9/19/2014 - 5:24am
Replies by: Squash, Melissag0624, scragfinch, Janner, Anonymous, Ed Williams

Hello everyone. I'm new and would like some advice. I live in the uk. I was diagnosed with melanoma on my knee at the beginning of September. When I received the diagnosis from my dermatologist I was in shock. He said he would do a wle. I didn't know what to ask and just wanted to get out of there. The dermatologist said it was thin and that 95 percent of people he sees are ok. I went home and did some research.

When I went back for the wle I found out breslow depth was 1.38 with mitotic rate 1. I asked about sentinel node biopsy and he said it would give no advantage and he felt nothing in my lymph nodes. I get the results of the wle in 3 weeks. Both my parents had cancer. My dad died of lung cancer which spread to his brain in 2012 so I have seen what a terrible disease it is. Back then I had to fight for his diagnosis (they wouldn't do a scan) and aggressive treatment. Do you think I should get a second opinion now and push for scans and blood tests? I want to do everything I can. I'm 34.

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Ying's picture
Replies 6
Last reply 9/18/2014 - 10:56pm
Replies by: Ying, Anonymous, Linny

Hi everyone! My mom was diagnosed as having melanoma in 2011, recently developed to Stage 4 with metastasis to lung. She has NRAS mutation which is very very rare here in China, and when we went to the best melanoma treating hospital, we learnt that currently there's no specific drug for this mutation type. We are very disappointed. 

 
I did quite a lot research on website and seeking any possibility to get medical treatment aboard. I've been to this forum for several months already but never posted anything. This is my first post. Could anyone suggest some good melanoma treating centres in any countries especially in U.S. and Australia? We desperately need this information.
 
Thank you!
 
Ying

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RJoeyB's picture
Replies 2
Last reply 9/18/2014 - 10:02pm
Replies by: cavsnut, Squash

Good discussion over on OncLive about a common topic here on MPIP:

http://www.onclive.com/publications/Oncology-live/2014/September-2014/Fr...

Joe

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BrianP's picture
Replies 7
Last reply 9/18/2014 - 7:14pm

Not sure if the experimental drug in this video could have applications to melanoma or not.  The response this patient got was absolutely amazing.  Would be awesome to see more research done in this field in regards to melanoma.  I've heard of this more overseas but not much here in the states.

http://news.yahoo.com/video/round-2-measles-vs-cancer-132032273.html#/bionic-pancreas-father-mission-105013322.html

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/18/2014 - 6:06pm
Replies by: Anonymous, Linny

Does anyone else have trouble copy/pasting  web  links on  this site?I have tried couple of times to copy/paste usefull links  yet the copy/ paste function seem to be useless.I wonder if this is a some sort of software problem / function  not  operational on the new version of this site.

Teodora Chasse

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/18/2014 - 5:34pm

I'm very confused as I've been diagnosed stage 4 with lung metastasis. I have low tumor burden and my oncologist feels that if ipi or if needed PD1 works, that can be "cured". I thought it was incurable. I know these are new treatments but what is reality?

Let's work for better treatments....for a cure!!!!

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Ginger8888's picture
Replies 10
Last reply 9/17/2014 - 7:45pm

Was up half the night thinking about today and it's outcome...I have my scans today to see if my treatment is working or not...I've been told that most of the time the first scan after this treatment could look worse than it did before treatment, that's how this treatment usually works, so i will try not get too discouraged if things don't turn out the way i have been praying for..Wish me luck and can always use some positive thoughts and prayers..I don't get result until the 23rd...If this doesn't work or is working to slow then onto the next one and i'll kick it's ass too. Treatments -0 Ginger -2...(as far as side effects)Have a wonderful day..

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