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
Linny's picture
Replies 4
Last reply 3/1/2012 - 8:18pm

Had a great visit at Johns Hopkins this past Tuesday. My scans were clean and I'm still hanging out with NED. Next scan will be some time in August/September.

But I have to admit that I was getting freaked out by some minor lower back pain on my right side. I knew there were other things it could be besides melanoma, but even knowing that didn't do much to alleviate the "scanxiety". When Dr. Scharfmann broke the news about the clean scans I all but started dancing with him in the exam room.

I'm not sure what my official NED date is, though. Melanoma was discovered in a lymph node back in November 2010 (I had an unknown primary). The subsequent scan in December 2010 done at a local hospital was clean. When I had my full lymphadenectomy done at Hopkins in January 2011, no further evidence of disease was found in the lymph nodes. At any rate, I've had no evidence of disease for over a year. Maybe I can just have two celebration days? ;-)

If you're newly diagnosed, freaked out, and lurking right now, please know that things do get better with time.

I had no idea how significant clean scans were until I found this site. The dermatologist who examined me at Hopkins completely downplayed them so when I left his office I was a complete wreck. He may be a good diagnostician and instructor but his bedside manner sucked, plain and simple. Fortunately I don't have to deal with him on a frequent basis. If you're seeing a bunch of doctors, there's always one who falls into the "jerk" category. Don't let them get you down. If I didn't have this site as a resource, my emotional recovery would have taken months instead of weeks.

 

Linda
Stage III, unknown primary

Stage III, Unknown Primary; 1 positive node in left axilla

Login or register to post replies.

Replies by: Gene_S, Anonymous, washoegal, Janner

See:

For much more info, copy and paste the following into your search for details.

" Briana Cox's daughter was diagnosed with the same stage-four melanoma "

A very sad story

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

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 3/1/2012 - 3:08pm
Replies by: vivian, washoegal

For about two months, off and on, I had what seemed to be a hemoroid or small tear that would bleed when I wiped. It seems to have resolved, but my dermo felt I should have a GI consult. I was advised to take any bleeding seriously . I was told melanoma likes to go to the small intestines ( I am stage IV / NED) so, I should have an endoscopy as well as a colonoscopy. I have no other symptoms. Has anyone else gone ahead with these procedures because of a bit of bleeding that comes and goes? I am going to go ahead and have them done on Friday.

NancyGM

Login or register to post replies.

Lisa13's picture
Replies 2
Last reply 3/1/2012 - 5:55am

When I had my 28th week scan from ipi, they noticed I had marginal growth of my lung mets (1-2mm).  When my blood work was done at the end of January, my LDH was down 100 points (around 209) which is considered normal. How is this possible when my cancer has gotten a bit bigger but now my LDH is the lowest it's been since last November??   Half of me hopes that it's really inflammatio and the ipi is still working, but nobody even knows.

I just started ipi again last Friday, so let's hope this continues to work. I think there is a 30-40%,chance,  but I don't think anybody knows how well the reinduction works.  Luckily after a year, I still have lungs mets that are under 1cm and some that are just over 1cm. I also feel good knowing my absolute lymphocytes have been 1900 before I started my reinduction,  so I hope this means good things on my immune system and helps to keep the brain mets from coming back.

Lisa

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

vivian's picture
Replies 3
Last reply 2/29/2012 - 5:33pm
Replies by: lhaley, TSchulz, Erinmay22

After being NED for 16 months, (stage IIIa, nodular, 4.35 mm, mitotic rate 9 on mid back), I found a lump under the skin a little more than an inch below the CLND incision.  The surgeon did an excisional biopsy a week ago.  He called this morning to say that the preliminary report was melanoma.  That's all I know, but of course, my mind is racing.  My last scans were in November and they were clear, so I am hoping (praying) that this is just a single little subcutaneous met.  If so, will they probably just do a wide excision as they did with the primary?  Does this move me to stage IV?  

I know I don't have enough information yet to even guess at what is to come, but my appointment with the oncologist isn't for a week.  Between now and then, I would like to do as much research, planning, etc. as possible so that I can ask informed questions about treatment possibilities.  I do know what to expect if it is stage IV.

Thanks for any information/experiences you can share.  I hope all of you are feeling well this morning!

Lear

Login or register to post replies.

HelperDaughter's picture
Replies 1
Last reply 2/29/2012 - 12:35pm
Replies by: boot2aboot

My mom died on Wednesday, February 22, 2012.  I can't believe it.  I really don't know what else to say.  My mom is gone. 

Login or register to post replies.

himynameiskevin's picture
Replies 12
Last reply 2/29/2012 - 12:29pm

Well it turns out because of the recent brain mets and steroids, I don't qualify for any trials I was hoping for right now. The news was a little disappointing, but kind of expected and completely understandable. I know that if Zelboraf does work for me, it's only a temporary solution, which makes me a little nervous, but I remind myself a temporary solution is better than no solution, and if all works out, maybe it'll get me to a point of stability where I could qualify for a trial of some kind down the line. I'll be seeing a doctor on Wednesday and hopefully get started on Zelboraf as soon as possible. I also have another brain MRI Monday morning to assess what might be a possible lesion or two, but might just be blood vessels. I'd be ok with either, just praying that nothing new shows up. I'm a little anxious and a little nervous at the moment, having the weekend of waiting in front of me. But I'm hanging in there and know these feelings will pass, as they have before, just have to stay focused, and remember all the things to be thankful and hopeful for. Thanks for hearing me out.

As always, I'm thinking and hoping for the best, for all of us.
-Kevin

Login or register to post replies.

Hello.

I had a consult at NIH last week. They wanted to put me in the TIL plus TBI trial. I just found out that I don't qualify because of my prior radiation history. So, now I have to decide between doing the TIL + IL-12 trial at NIH or going to Moffitt or MD Anderson and doing their TIL protocol.

NIH wasn't sure if MD Anderson and Moffitt were getting the same results that they have been able to get with TIL. They had heard that they may be having trouble growing the TIL cells. Does anyone know anything about this??

I'm really not sure what to do. It's so hard to make these decisions sometimes.

Thanks!!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

Login or register to post replies.

WalterA's picture
Replies 7
Last reply 2/29/2012 - 5:06am

I had a PET/CT scan yesterday (Thursday), and it showed four lesions in/on my right lung. They are of recent origin, and they are very small. Because they are so small, my doctor believes they can be treated with chemotherapy. (My two previous recurrences -- one lesion in my left lung and one in my liver -- were successfully dealt with by CyberKnife and RFA treatment, but these are two small.) I'm not sure when things will get rolling, but I'm back in the lair of the beast. Next week, I will "celebrate" the 10th anniversary of my initial diagnosis, so this is an interesting time.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

Login or register to post replies.

Carole K's picture
Replies 14
Last reply 2/29/2012 - 4:56am

HI Everyone,

I frequented this board from 1999 until around 2008 and certainly do miss all my old frends from MPIP.  I knew so many people here, we got together in ASheville NC< MIchigan, Florida, Seattle, Vancouver and on and on.  They were good times and sad times . Most importantly the support I got here could never be measured. I will all cherish everyone here  and all the love we gave each other. 

For all of you I just want to say DO NOT GIVE UP.  NEVER GIVE UP HOPE.  I should have been dead 11 years ago and I am still kicking. Doing well, getting a bit old these days and loving life. 

I was dx in 1995 with ulcerated mole on my back as a stage II.  Fast forward to 2001 when dx with lung mets and in Dec. 2001 with a brain met.  It was not an easy journey and yet it could have been far more difficult had it not been for this board.  The support I got here cannot be measured.  There was alwasy HOPE>  We would often spend all night in the chat room and let me assure you , if you were depressed when you went in, you were laughing long before you left. 

The one thing my oncologist told me I have never forgotten..CAROLE, DO NO LOOK AT STATISTICS.. NOONE CAN TELL YOU HOW THEY WERE ARRIVED AT.  FURTHERMORE YOU ARE AN INDICIDUAL AND EVERYONE IS  " DIFFERENT".  I hung on to those words for dear life and here I am 11 years later having the best affair with NED, the only man I have never minded sharing.......even with men. 

To all of you NEVER GIVE UP.. NEVER LOOK BACK JUST KEEP LOOKING AHEAD.  WE CAN DO THIS.

Sending positive thoughts to all of you

LOVE AND LIGHT

CAROLE

 

Login or register to post replies.

hope4cure1's picture
Replies 3
Last reply 2/29/2012 - 12:56am

Hi everyone.  My husband's PET and CAT were still clear today. In January 2011, he had 4 mets to liver and 2 lymph nodes in his chest.  He started on a Carboplatin/Abraxane/Avastin combo.  He tolerated the treatments well.  In June, he stopped the Carbo due to an allergic reaction and continued with the Abraxane/Avastin.  In July and September his scans were clear.  He stopped  Abraxane in September and continued with Avastin as a maintenance drug.  Today's scans mark 7 months NED.     

I realize that chemo doesn't have a stellar response record.  However, I want to give a glimmer of hope to anyone whose doctor has suggested chemo as the next step.  Statistics only apply to where you fall within the numbers.  This was my husband's first line of treatment, after surgery to remove lung mets in late 2010.   He is BRAF negative, NRAS positive.

My hopes and prayers go out to all of you.  Now that melanoma is starting to take its rightful place in the spotlight, hopefully the cure is imminent.

Much love,

Hope

    

Become what you admire.

Login or register to post replies.

Replies by: LynnLuc

http://www.sciencedaily.com/releases/2012/02/120228185828.htm  

ScienceDaily (Feb. 28, 2012) — Researchers at Moffitt Cancer Center in Tampa, Fla., and colleagues in California have found that the XL888 inhibitor can prevent resistance to the chemotherapy drug vemurafenib, commonly used for treating patients with melanoma.

Potential Solution to Melanoma's Resistance to Vemurafenib

Vemurafenib resistance is characterized by a diminished apoptosis (programmed cancer cell death) response. According to the researchers, the balance between apoptosis and cell survival is regulated by a family of proteins. The survival of melanoma cells is controlled, in part, by an anti-apoptotic protein (Mcl-1) that is regulated by a particular kind of inhibitor.

Their current findings, tested in six different models of vemurafenib resistance and in both test tube studies and in melanoma patients, demonstrated an induced apoptosis response and tumor regression when the XL888 inhibitor restored the effectiveness of vemurafenib.

The study appeared in a recent issue of Clinical Cancer Research, a publication of the American Association for Cancer Research.

"The impressive clinical response of melanoma patients to vemurafenib has been limited by drug resistance, a considerable challenge for which no management strategies previously existed," said study co-author Keiran S. M. Smalley, Ph.D., of Moffitt's departments of Molecular Oncology and Cutaneous Oncology. "However, we have demonstrated for the first time that the heat shock protein-90 (HSP90) inhibitor XL888 overcomes resistance through a number of mechanisms."

The diversity of resistance mechanism has been expected to complicate the design of future clinical trials to prevent or treat resistance to inhibitors such as vemurafenib.

"That expectation led us to hypothesize that inhibitor resistance might best be managed through broadly targeted strategies that inhibit multiple pathways simultaneously," explained Smalley.

The HSP90 family was known to maintain cancer cells by regulating cancer cells, making it a good target for treatment. According to the authors, the combination of vemurafenib and XL888 overcame vemurafenib resistance by targeting HSP90 through multiple signaling pathways.

There was already evidence that HSP90 inhibitors could overcome multiple drug chemotherapy resistance mechanisms in a number of cancers, including non-small lung cancer and breast cancer. Because XL888 is a novel, orally available inhibitor of HSP90, the researchers hoped that it would arrest the cancer cell cycle in melanoma cell lines.

In their study, the inhibition of HSP90 led to the degradation of the anti-apoptopiuc Mcl-1 protein. The responses to XL888 were characterized as "highly durable with no resistant colonies emerging following four weeks of continuous drug treatment." In other studies not using XL888, resistant colonies "emerged in every case," they reported.

"We have shown for the first time that all of the signaling proteins implicated in vemurafenib resistance are 'clients' of HSP90 and that inhibition of HSP90 can restore sensitivity to vemurafenib," concluded Smalley and his colleagues. "Our study provides the rationale for the dual targeting of HSP90 with XL888 and vemurafenib in treating melanoma patients in order to limit or prevent chemotherapy resistance."

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

Leigh's picture
Replies 4
Last reply 2/28/2012 - 5:43pm

Hi all,

I am following your journey's and thinking of you all, praying for a cure for this disease. 

I wonder if I could canvas opinions and experiences with attempting to lose weight for health reasons when you have a hx of melanoma (Stage 1a).  The "Curves" weight management programme (along with others) advises 6 meals involving protein per day, including quite a lot of eggs, cottage cheese and protein shakes to try to manage doing this. 

 

I have read afew nutrition books related to cancer, and have switched to organic.  I haven't added any vitamins as I am pretty confused by it all to be honest (some say you shouldn't have multivitamins because they are linked to cancer...I have no idea what to believe and dont have time to research it all with two wee children).  In any case, I know too much red meat and ???maybe protein????is a bad thing. 

 

Would love to hear those in the knows opinion of this.  Thank you for your time if you have got this far!

Login or register to post replies.

Kimberly Duncan Watts's picture
Replies 5
Last reply 2/28/2012 - 1:27pm

Another question already! I was told I do not qualify for zelboraf because my BRAF gene is "abnormal". Again, that happen to anybody else?

I can do all things through Christ who strengthens me.

Login or register to post replies.

Kimberly Duncan Watts's picture
Replies 8
Last reply 2/28/2012 - 1:18pm

I completed my 4th dose January 8. At my 2 wk follow up appt I was so anemic it required a double transfusion and I now am on an iron supplement. This happen to anyone else? Also, as I am the only IPI patient in my area (upstate NY) and only the 5th melanoma patient ever, my onc. Is flying blind, although he is meant to be in contact w the specialist at Roswell in Buffalo (who we spoke to this morning and for the second time, can't find that they have rec'd scans...) My first scans showed no disease in any organs, but he couldn't tell me if the lesions in my abdomen were even lesions anymore, maybe cysts, and they couldn't really read the bowel. I am rapidly losing confidence as I was diagnosed in 08 and have been thru Interferon as well as IL2 this past summer. Any advice will be greatly appreciated. I was originally told IPI was a "one-shot" deal and now I read of those of you that are rein ducted. HELP!!! I am beginning to feel these people are just not on top of my case. 53years old with 5children , 2 grandchildren and a new granddaughter literally any second now! I'm a fighter and NOT ready to pack it in!!!!

I can do all things through Christ who strengthens me.

Login or register to post replies.

Pages