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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rjcravens's picture
Replies 0

I am taken back by all the Christmas Blessing we have recieved this year. There are so many angels on earth with such big hearts. My kids had one of the best Christmas's ever thanks to all the support we recieved from family and friends. And even though I catch myself wondering if this is my last Christmas with them, my overwhelming fears are actually getting better. (Plus I am taking the Cymbalta)

  I stopped taking the Ritalin for fatigue last week and have found myself overly tired all over again. However, I keep reminding myself that I am halfway through the year of interferon treatments and that there is a light at the end of the tunnel. My family has been very supportive in putting up with my tired and grouchy butt. The only other issues I seem to be facing is the daily nausea and leg pains on the days after injections. It is such a deep pain, especially in my pelvic area and upper legs. It doesn't help after working twelve hour shifts at the hospital. Any suggestions for this? I have tried creams, heat, Norco....it is so deep that it seems like nothing can get to it. I have my husband use his fist and put pressure on my legs just to get some relief. (not sure why that helps)

  I go back to see oncologist in Jan and the Dermatologist in March. Praying that no other issues arise.

May everyone have a Blessed and Merry Chirstmas and a safe and Happy New Year. (i am so burning the 2011 calendar! What a year....geez)

 

Rachel - Stage IIb  Area popped up on arm in Jan 2011, surgery to remove Feb 2011, malignant melanoma.  Not in lymph nodes. Interferon started in May 2011. First month IV then injections. Scared to death of returning.

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Anonymous's picture
Replies 5
Last reply 12/24/2011 - 1:07pm

Could someone please "improve" the word verifications on this board. This is crazy, I have tried a dozen times-does not work.

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/23/2011 - 6:03pm
Replies by: Julie in SoCal

Hi Julie,

Hope things are going well for you. Are you back in the states?

I have read your posts that Dr. O'day is your doctor. Have you been in contact with him??? I am a former patient and would like to hook up with him now that he left Angeles Clinic.

Please post any information you might have on his new practice.

Thanks,

Wendy

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jmmm's picture
Replies 2
Last reply 12/23/2011 - 9:14am
Replies by: Woodlands, MariaH

Does anyone know about this drug? My husband has been on Zelboraf for 2 months. His scans showed mixed results..2 tumors gone, a few stable, and 2 new ones. His doctor wants to wait and rescan in two months. We'd like to be more proactive. We've talked to Vandrbilt, hoping for a PD-1 trial. They've offered a possibility of an E7080 trial. I've never heard of this drug. I did a little research, but there's not much there. Is anyone on this trial, any ideas on whether or not it works? Thanks for any thoughts or ideas.

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hope4cure1's picture
Replies 4
Last reply 12/23/2011 - 3:19am

In our journey with melanoma, one thing I've come to expect is the unexpected.  Maybe this belongs on the off-topic forum, but I'll take a chance here.

With the news of my husband's clear scans this month, we were ready for a joyous holiday season.  Then came the unexpected.  On Monday, our Golden Retriever was diagnosed with.....yes, melanoma.  This came as a real shock, made more painful with the veterinarian telling us how terrible melanoma is.  I would have given the world to shield my husband from those words. It is inoperable, and the vet gave her 3 months.  She's not currently in pain, and we'll spoil her during the time we have together.

Who knew that dogs could get melanoma?  I look for reasons and lessons in everything.  The only light I can see here is that perhaps, since it is a concern to the veterinary community also,  a brilliant scientist in that field will unlock another clue that will result in the miracle we all hope for.  Could "man's best friend" prove to be just that?  It may sound far-fetched, given our radically different genetic makeup, but stranger things have happened. 

My Christmas wishes are for amazing breakthroughs in the coming year.  The gift this disease has given many of us is a clearer understanding and appreciation of life's true treasures. I would wager that many of you have the same thing on the top of your list too.

Happy Hanukkah to those celebrating your third special night.   Merry Christmas to everyone who is still trying to get cookies baked and stockings hung.  I hope that if the holiday's have you feeling down, that an unexpected sparkle will lift your spirits.

Hope

 

Become what you admire.

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NYKaren's picture
Replies 4
Last reply 12/23/2011 - 2:38am

Dear MRF Friends,

Today is the first day of Chanukah.  Last night we lit the first candle on the menorah; tonight we'll light the second, and so on, until we reach eight.

Chanukah celebrates a miracle; as does Christmas.  I'm sure there are other faiths I've neglected to mention.

May we all be blessed with miracles in our often difficult quest for sustained NED, and may the medical community come up with a miracle that will cure us all!

love,

karen

Don't Stop Believing

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Jydnew's picture
Replies 2
Last reply 12/23/2011 - 1:26am

I thought this was interesting for stage ii (and perhaps iii) people who are kind of left in the "wait and see" group, even with, what I would consider, dangerously high recurrance rates.

An exerpt from the article:

BRANFORD, Conn., Dec. 21, 2011 /PRNewswire via COMTEX/ -- HistoRx recently licensed from Yale University a new clinical diagnostic assay based on AQUA® technology. This assay enables doctors treating patients with melanoma to identify a subset of those patients who, despite having no detectable cancer in their lymph nodes, have a 40% risk of recurrence of their disease. AQUA technology is an automated, quantitative IHC testing method that enables measurement of protein biomarkers in tissue as an aid to a pathologist's diagnosis. Such precise determination of first, the location within the tumor cell and second, the amount in each location is not possible with conventional testing methods, such as standard immunohistochemistry (IHC).

The prognostic assay was developed in the laboratory of David Rimm, MD, PhD, inventor of AQUA technology and Professor of Pathology, Director of Pathology Tissue Services at the Yale School of Medicine, and may be useful in guiding treatment decisions for Stage II, node-negative melanoma patients. "After surgical resection of the tumor, if the nodes are negative, we don't have much more to offer," said Dr. Rimm. "This assay allows us to measure the risk of recurrence which can be helpful to ease patient anxiety or to prompt patients to be aggressive in follow up or even consider adjuvant chemotherapy."

 

http://www.marketwatch.com/story/historx-licenses-melanoma-assay-from-yale-university-2011-12-21

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ezygoin686's picture
Replies 5
Last reply 12/23/2011 - 12:28am
Replies by: ezygoin686, erb, MichaelFL, eaca

I am a 65 year old male, married and I am on Peginterferon a/k/a Sylatron and have been since July 2011.  I am looking for someone that is going through this same treatment to talk to.  Hopefully, I can find a support group.  If not, I am willing to start one. 

Thanks,

Jim

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scots's picture
Replies 4
Last reply 12/22/2011 - 2:22pm

1 year scans all clear. NED    All of you will be in my prayers.

Merry Christmas

scot

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JoshF's picture
Replies 2
Last reply 12/22/2011 - 1:29pm
Replies by: washoegal, akls

Happy Holidays All-

Just wondering if anyone out there has ever experienced having a CT Scan come back and show a "spot" on the liver that ended up being nothing. I had Chest/Neck CT Scan in Nov which was clear. MRI of brain...clear. CT Scan of abdomen came back with this "spot" which was 1.5cm. My oncologist felt confident it is nothing (hemangatoma or some type of blood build up) but given the evasiveness of melanoma he wants to be sure. I had MRI yesterday as he felt this was least invasive test to determine. I'm nervous as hell....I was diagnosed in April and it has been a roller coaster to say the least.I make my side hurt just thinking about it!!!  Many of you have been a wealth of information and support.

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

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Charlie S's picture
Replies 6
Last reply 12/22/2011 - 12:47am

As his Thanksgiving present Jerry was moved from the hospital to physical rehab but he crashed and burned last week and was sent back to the hospital to stabalize once again. 

Now for his Christmas present, he has been cleared to go back to rehab after working out some insurance glitches.

In speaking with him today, he was quite lucid and very Jerry and not operating under the fog of better living through chemistry.  What a time he has had but he continues to slug away.

Once his move is complete, I'll get an physical address for you that would be so inclined to send him best wishes.  He's not able to respond right now to e-mails; but heck, load up his in-box anyway........................it will give him something to do !

Please keep Jerry in your good thoughts.

Cheers,

Charlie S

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Gene_S's picture
Replies 6
Last reply 12/21/2011 - 11:13pm
Replies by: Charlie S, Anonymous, Gene_S

OUTRAGEOUS FDA DELAY ENDANGERS MELANOMA VICTIMS
Melanoma is almost completely curable if caught in time, yet 30% of malignant lesions go undetected due to human error. With a 98% accuracy rate, you would think a breakthrough, non-invasive diagnostic device called MelaFind® would gain swift FDA approval. In this exposé, we reveal why this technology languished in limbo for years–and how stifling agency bias and negligence are sending similar innovations overseas.
 

Click Here
Read the full story

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I found that downloading pages 84 to 91 using the .PDF icon in the lower right part of the page made it a lot easier to read this article!

Best Wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Neeq79's picture
Replies 4
Last reply 12/21/2011 - 9:47pm
Replies by: CLPrice31, Camp Host, Neeq79

Hello Everyone,

I hope you don't mind me posting here.  I have not been diagnosed with Melanoma, instead I am waiting to receive initial results. 

I have dark blond hair, blue eyes, and many freckles.  I was unfortunately one of those teens and early 20 somethings who thought looking better meant having a tan.  I never went to a tanning bed but spent many days out in the sun with little to no sunscreen.  I am now 32 and definitely have put those days behind me, what was I thinking?  I knew you could get skin cancer from sun exposure so I have always been good at checking my face, arms, and torso.  I knew I had freckles and moles on my back, but, my back was rarely sunburned (I always hated a burnt back so it was not often exposed). 

I had a physical last month and asked about my back, my doctor sent me to a dermatologist.  I went  and unfortunately, I had three irregular moles that were removed by punch biopsy last Thursday.  I asked her if they came back positive what it would be, and she stated Melanoma.  As I sit her with stitches and waiting for results, I wanted to do research on what exactly Melanoma is.

I am so glad I found this website and I have thoroughly enjoyed reading your stories. Thank you so much for posting something so personal.  I feel like my eyes have finally been opened to what I took, in a sense, casually.  I am praying nothing comes back positive for Melanoma, however, I know I will need yearly checkups which I will always be on top of. I also want to get the word out to everyone that Melanoma is something you may not realize you have until it is too late.  It goes way beyond sun exposure, as I'm an example, the parts with very little sun exposure are the places with the irregular moles I need to monitor.  I wish our culture was one of health, true health, not the thinking that a tan appearance equals health.  I wish Melanoma awareness and education was as easy to find as a tanning salon is. 

I am very nervous about my results, but no matter what they are, my attitude and outlook have definitely changed.  We're blessed with one body and one life, it's up to us to take care of it the best we can and to not take it for granted.  

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Low CoQ10 levels and Melanoma Metastasis.

See:
 
Best Wishes,
Gene
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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j.m.l.'s picture
Replies 5
Last reply 12/21/2011 - 10:12am

I had 4 mel tumors removed. That was the easy part. Latest is tumor laying on arm artery. Dr. says inoperable. no wide margin, etc.

Tried IPI-side effects but no shrinkage, just growth. On Decarbazine but I know this drug is a very low responder. Will try other chemos but this takes months of try and error.DOES  ANYONE KNOW FROM A LAYMAN'S TERMS WHAT THE DANGER ARE INVOLVED WITH SURGERY TO REMOVE THIS TUMOR LAYING ON AN ARTERY. OF COURSE I WILL CONFIRM W. DRS. BUT I WOULD LIKE TO KNOW FROM ANY IDEAS OUR THERE.

NEED ADVICE, jml

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