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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bluevit's picture
Replies 7
Last reply 9/21/2014 - 7:32pm
Replies by: bluevit, Pamelarun, Janner, Anonymous

Hello,

I have a biopsy scheduled in 2 days of my thumb nail.

Is there anyone that has experience with subungual melanoma, or Acral Lentiginous Melanoma?

Please see this picture of my thumb.

http://nz.skyflux.com/IMG_2416.JPG

This is after watching it grow out from the cuticle for 2 weeks.

What kind if biopsy will I get? (punch biopsy?) and where exactly is the best place for them to take it? What kind of accuracy should I expect from the biopsy?

I am scared and trying to get a diagnosis asap because I have had other rare health problems over the past year that a heap of blood tests was unable to figure out other than probable psoriasis and food allergies. I was 99% back to normal curing myself through a healthy diet, but now this!!! As you can see my thumb nails used to grow out split back when my skin was leaking lymphocytes and falling off all over my body. All my other finger and toe nails are growing out perfect now except this one.

Thank You

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BrianP's picture
Replies 3
Last reply 9/21/2014 - 7:05pm
Replies by: RJoeyB, BrianP, Brent Morris

I saw this trial mentioned on another forum.  Don't have any details other than the clinical trials website.  Phase I is for many different types of cancer including melanoma.  Phase II is only going to be for NSCLC.  I think it sounds like a very interesting concept.

Here's the clinical trials website link:

http://clinicaltrials.gov/show/NCT02178722

Here's a little information on what IDO is all about:

https://www.sitcancer.org/meetings/am09/presentations/fri/Munn.pdf

 

 

 

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FlakitoAJZ's picture
Replies 5
Last reply 9/21/2014 - 2:20pm
Replies by: Anonymous, Tim--MRF, FlakitoAJZ, malika

Hello everyone.

 

I have a 3 year old girl and last year (2013) around October this weird pimple appeared on her chest. It looked nothing serious, we assumed it would dissapear eventually. Except it didn't, it began to grow , particularly upward, against the skin surface in a pointy sort of way.

We made an appointment with our local Cancer league to have it removed and have a biopsy test made on it.

The thing is the biopsy results don't come until two weeks and the doctor that removed the tumor said that upon looking at it he thinks it's melanoma.

But really? Melanoma on a 3 year old? Do you know if a case like this has indeed happened somewhere? I thought that melanomas appeared at 13 years old or more, not as early as 3 years old. Actually 2 years old since it appeared last year.

Please share any info you can, my wife and me are extremely worried and need to know more about this. Thanks in advance for any info you can provide.

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kim007's picture
Replies 2
Last reply 9/21/2014 - 12:35am
Replies by: pipes, Brendan

My husband was diagnosed with Stage 3 melanoma 2 years ago.  He has tried several treatments such as IL-2, Anti-PD1, and Zelboraf. Now he has been on Yervoy for 6 months and is responding positively. We are so relieved to have had this positive break through.  We are considering expanding our family (we already have one daughter so we know it will be a lot of work) . The doctors indicated that because Yerovy is an immunotherapy, and the Zelboraf should be out of his system, his sperm and fertility should be okay to move forward. Of course, we are still nervous since these are new drugs and there hasn't been long-term research done on the side effects. Does anyone have any experience with this? What were your results?

I appreciate your feedback on your personal experiences.

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Kerrid74's picture
Replies 4
Last reply 9/20/2014 - 3:57pm

Good morning everyone.  I am 40 years old and mommy to 2 beautiful babies. Ages 3 and 5.  Last week I was diagnosed with invasive melanoma.  I have been researching non stop and to be honest I am overwhelmed, anxious and confused.  I have a wonderful support system around me, who are also doing plenty to research with me.  Yesterday I had my first appointment at Dana Farber melanoma center with the surgeon.  I was just diagnosed this past Wednesday with a deep biopsy.  So when I saw the surgeon yesterday, she explained my melanoma was .8mm, appeared thin with a mitotic rate of 0. No ulceration. Superficial spreading.  The surgeon said the next step will be next week to have general anesthesia with a wide excision and snb.  My question- is why not a pet scan or ct scan?  I am gung go for the surgery and I did ask her why not a pet scan or ct scan but she said the snb should be next and if that's positive,   Additional testing is next.  Does this sound like normal procedure? I was thinking of a 2nd opinion.  Though I did love the doc I met yesterday.  Thank you, and thought this is not where expected to meet new friends, I'm looking forward to it. 

Kerri

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This morning I  Repeatedly recxeived::

Not Found

The requested URL /melanomachat/htmlchat/123flashchat.html was not found on this server.

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

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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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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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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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