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.

Expand/ Collapse Topic
 
Replies By
View Topic
boot2aboot's picture
Replies 11
Last reply 12/26/2011 - 2:48am

I needed to let everyone know how my second set of scans went while on zelboraf...as some of you know, i have had major side effects while on zelboraf...my dosage was reduced way under what was recommended...i also had to go off the drug 3 x...in the last two months...and while only taking 3 pills total a day i still have shrinkage and no new tumors...not as dramatic as when i was on the full dose, but no new growths and shrinkage...i have to compare numbers to give you percentages and won't get to talk with doc one on one until next week...i am not bragging about this, i just need to let people know how this drug is working...so far- especially for people like myself who have a hard time tolerating the drug and find themselves also on reduced dosages...

i am on low dose steroids to handle the side effects (fever, nodusms, arthralgia, neuropathy, nausia, rashes)...i have to say i have never freaked out so much over scans before...many of you ,  i know are fighting bitter battles...we lost sooo many people...i still cry about Val, but for those of you winning the fight...keep on fighting and winning and those of you who are struggling...i say a prayer and pray we will have effective drugs this coming year...hang in there...

boots

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

--------------------------------------------------------------------------------------------------------------------------------------------

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

I ave posted a new topic andit has come up on a different board I think it was under view all topics? Stats and can people still see it x

Login or register to post replies.

LaneyMcg's picture
Replies 7
Last reply 12/21/2011 - 1:29am

Hi just a little history, I had my 1st primary just over 5years ago . 2.7mm off upper back snb clear. since then I have had 5moles removed 3 ok, 2 mel in situ. I have recently found a lump on the right side of my head just behind my ear it itches and has bled once. I went to my primary doctor who confirmed it was a mole and has referred me back to my cancer hospital. I know I'm probably running ahead with this but I'm scared because it is a New mole that has appeared out of nowhere like my original primary, unlike the others that I have had removed which were existing. I'm waiting to see the specialist at the moment. I am sorry to be so trivial when so many of you are battling so hard, my thoughts and prayers are with you all.
Love across the pond,
Laney x

Login or register to post replies.

KRob's picture
Replies 7
Last reply 12/30/2011 - 5:24pm

Hello-

Been quite a while since I've been on...so nice to see familiar names and so sorry to hear of several fine folks passing from their MM this past year. This rotten disease has claimed too many good lives, but it's heartening to see that so many others are winning the war. 

Since Christmas is the season of hope, I wanted to share my testimony of survivorship of stage IV mm for almost 7 years (2/05-diagnosis). It's a kick-in-the-gut that day of diagnosis (and for many days after that too) but it's vital to retain and maintain the belief that anything is possible and you do not have to be a statistic! As my dear late dr. told me, "We can talk numbers all day, but they are only going to be grim and give you very little hope...remember, that they are just numbers and don't necessarily represent your individual case." That was the first whisper of possibility that I heard during those early, dark days, and I will forever be thankful for them.

So for those of you who have just recently joined our ranks and those who continue the fight, may you be blessed with abundant hope throughout the coming year (and beyond!). May you find the strength and courage in the days moments you need them, and the guidance and wisdom to choose the paths of treatment you decide are best for you.

Merry Christmas! Best wishes and many blessings to all!

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

Login or register to post replies.

mbaelaporte's picture
Replies 4
Last reply 12/30/2011 - 9:36am

Hello All  : I previously reported on my initial splendid results with Zelboraf therapy.  I am now experiencing a recurrence of tumor growth in my seventh month on this drug and hoping to hear about what the next steps in my path might be.  I visit w / my oncologist later this week and am scheduled for neck, chest & abdomen scans.  Was heartened to read a post by PhoenixJ and the positive results she is receiving in her treatment with Ipi - is there a chance Phoenix you might reveal  the calculus as to why you were taking Zelboraf for two months then switched to Ipi?

Also I'm thinking my oncologist spoke before about my not being able to segue right into a Zelboraf / MEK trial because of my usage of Zelboraf?

And remembering that maybe my facility Seattle Cancer Care Alliance does not have a relationship w/ that drug at this time?

and that my wife looked it up & UCLA does??

Anyway I'm trying to amp up for this visit and so appreciate all the information shared on this site.  Please come forward with any thoughts or experiences you have on this subject

Cheers and all the best to you,  john

Login or register to post replies.

MikeWI's picture
Replies 4
Last reply 12/28/2011 - 9:32pm

I have been reading about this Trial and have some question.  It seems this would offer lots of promise to us with melanoma.

My questions are:

1.  what is the delivery method of Anit-pd1?  Is it done IV, or is this a pill, or a cream.

2.  How does it know the difference between Healthly skin and the Tumor?

 

MikeWI

stage 2c

Search and Destroy

Login or register to post replies.

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.  

Login or register to post replies.

TomJ6299's picture
Replies 9
Last reply 12/31/2011 - 3:26pm

I was at work friday and I noticed my vision was very limited in my right eye. I went to an ER and an Optimologist was called in, he did what seemed like an ultra sound on my eye and found a tumor, he then informed me that it was Cancer. Since then it seems like a nightmare. Anyway my name is Tom, Im a 49 year old single widowed father of a great 15 year old boy who needs me. We live in louisiana and love LSU and the Saints. Im also a recovered alcoholic and drug addict , Ive been clean and sober since 2003. Any feedback will be greatly appreciated

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 12/19/2011 - 5:41pm
Replies by: audgator, Anonymous, Angela C

Quick Hx as I can't seem to enter a profile: Found a lump on my neck 6/09; Dx as melanoma 8/09; primary lesion never found; surgical removal of 20+ lymph nodes, 2 of which showed cancer; highly focused radiation 1/10; 1 yr. of interferon; all scans clear until 8/11 which showed spots in lungs & liver; 2 biopsis inconclusive as lesions are too small to get adequate tissue samples.  I started ipi a couple weeks ago & have my 2nd this Thursday. So far I have had no side effects. If  I were in a trial (I'm not) I would suspect I'm on a placebo.  Blood work has been OK except the white count is a little high.  I've always enjoyed wine with dinner but I went without for the year on interferon. My oncologist has not banned wine while on ipi but only made a vague suggestion that a holiday glass would be alright.  I am wondering what others have been told about alcohol & Yervoy?

Login or register to post replies.

Pages