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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Anonymous's picture
Anonymous
Replies 0

Has anyone heard how Rocco is doing??/ His scans were last week. Hoping for the best for him.

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Kevin from Atlanta's picture
Replies 14
Last reply 9/13/2010 - 10:24am

I got my scans after taking 4 treatments of Ipi. All of my mets grew, lungs, brain, along the spine and esphogus, intestine ect. Two new ones, one at where the brain and spine meet and thyroid. I will wait six weeks, get new scans to see if I am a late responder. I still do not have a plan B, there really isn't anything out there that I am eligable for or perks my interest. I meet with my reg Onc on Monday. The next six weeks I plan on working on my pain. My knees and overall back give me pain 24/7. I have a hard time taken opiates, Ibpruphen just takes a little edge off. I told the onc office to order bloodwork for the thyroid to see if it out of wack. I might ask for a fine needle aspiration of the thyroid just to get a biopsy since the last biopsy didn't get a great sample. I plan to use for mutation testing.

 

I must give kudos to Ft Sanders hospital and Thompson cancer center in Knoxville, TN. I got a bone scan, ct scan and brain MRI within 5 hours and the results the next morning.

 

Professional patient

Stage IV 

 

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KatyWI's picture
Replies 8
Last reply 9/14/2010 - 12:45pm
Replies by: Anonymous, jag, killmel, KatyWI, mimi0201, Rocklove, Sharyn, lhaley

Howdy,

My 3-month post-IL-2 PET wasn't what I hoped for - three new itty baby nodules in my butt.  One option my doctor is suggesting is the OncoVex trial.  It's the new phase III trial.  2/3 get OncoVex; 1/3 get subcutaneous GM-CSF in the control arm.  I thought of two questions that I didn't ask tonight, and am hoping somebody out there can give me some interim answers while I wait0for Monday to roll around.  First, does anybody know if the OncoVex trial has a crossover design?  (If I got GM-CSF and progressed, would I get OncoVex?)  Second, while I'm aware of the phase III trial results for adjuvant GM-CSF, I'm not immediately aware of any efficacy data for its use in active stage IV disease.  I have visited the trial page (http://www.oncovexgmcsf.com/index.html) and the NCI page (http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=617439&version=HealthProfessional&protocolsearchid=8173351) and cannot find the answers.  Anybody out there know more?

Thanks!

KatyWI

Just keep going!

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himynameiskevin's picture
Replies 3
Last reply 9/11/2010 - 9:23pm
Replies by: SuzannefromCA, Fen, KatyWI

Hi everyone. I think I'm fully recovered from round one of IL-2, been home for 6 days and I'm feeling good.  Feeling really good actually, I hope that's not a bad thing. I start my second round on Monday and am wondering, if I am fortunate enough to be one of the positive responders to the treatment, what would I expect to see? I was told that I'd probably be waiting for about 3 weeks to know if it's working.  I can't find much information about IL-2 working on people, at least in detail. Do tumors just shrivel and die? I have a good sized cluster on my back and one on my chest about  the size of a lima bean that I can actually see under my skin. The internal ones, I just have to hope for shrinkage. But would I actually be able to see these things physically get smaller? Also, I've heard from some people that tumors could actually swell or enlarge while being defeated. Has anyone heard or experienced this? I plan on asking my doctor these questions next time I see him, but until then, any information from anyone here would be really appreciated and put my sometimes worried mind at ease. Thankyou.

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LampChop's picture
Replies 6
Last reply 9/16/2010 - 7:36pm

I am newly diagnosed with two excisions and a sentinal lymph node biopsy.  I am Stage III B because of microsatellites.  I have had three opinions on treatments.  One said "vigilant observation" and two others said radiation therapy.  However, one said external beam radiation - 4 weeks / 5 times a week.  And the other said IMRT (aka 3D conformal) radiation which avoids bones and provides less radiation to healthy cells.  It also is a five day treatment.

I'd like to do the IMRT therapy, but have not found any other online resources talking about it with Stage III melanoma to an extremity (mine is on my arm).  I'm just reaching out blindly to anyone on this board to see if anyone has experience with it or if the cancer center I went to is just very proactive in it''s use.

Thank you to anyone who responds.

- Kristin

(PS - my screen name is supposed to be LambChop, but I guess I am tired and just not focused these days.)

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makedoandmend's picture
Replies 7
Last reply 9/14/2010 - 10:21pm
Replies by: DonW, caper01, makedoandmend, King, Carver, Anonymous, dian in spokane

Hello all! I've been lurking for the past few days and have been amazed at the strength I have gained from simply reading your stoires, posts, and responses.

I am a 28 y/o M from Long Island, NY that  was just diagnosed this week with ulcerated malignant melanoma originating from a mole on my inner calf.  It got cut off in the ocean about 5 months back and grew back a little strange.  I didn't have it removed until a week and a half ago.  Unfortunately for me the thing was 9 mm...Knowing that the scale stops at 4 I am obviously expecting the worst.  I have a PET scan next week and am definitley feeling that "scanxiety" that others have spoke about.   Just thought I would say hello and see if maybe I could get some insight on what to expect. Am I definitley looking at stage IV or is there any hope of stage III?  Fear and anxiety have been the primary emotions, but some inner strength and willingness to fight has been brought out from some of the stories on this board. 

 

-pat

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Sharon in Reno's picture
Replies 75
Last reply 9/23/2010 - 9:57am

Hi Friends

Any stage 1 and 2's might want to run away right now......this is a bitch and the beast from hell has got a hold of me now and is not letting me go.

I'm checking in . I called Hospice last week, my sister came down, it will be 2 wks ago come this Sunday. Had more surgery to  my left arm, yep it was full of melanoma, had more brain mets, had WBR (3) stopped that after 3 times, burning pain on fire all through the night. CT Scans showing lower lunbar spine is full of melanoma, it spreads out like a horese tail and sends shooting pain down my leg, one tumor is on a eye nerve, I am now completely blind in my right eye  and 'em wearing an eye batch to stopped the double vision so I can see, I can't walk., I'm in a wheel chair &  walker, cant bath myself, blah, blah, blah...this is it. Today is my granddaughter 9th b-day so I wanted to live long enough to be here for that.  Hospice dropped the ball today w/pain meds and are getting their asses jammed....give me drugs NOW. I've asked my sister to posted when I'm your Warrior Angel. Ipi and others are a waste of time for me now cuz the beast is everywhere.

 

So I'm saying goodbye to all now, you have been more loving and a soruce of stregth for me more than you will ever know. For those of you who can...FIGHT ON & NEVER GIVE UP....I LOVE YOU...SEE YOU ON THE FLIP SIDE. LOVE, SHARON IN RENO, STAGE IV.....going down kicking and screaming with love and lots of DRUGS.

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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bill58's picture
Replies 17
Last reply 9/12/2010 - 9:19pm

I just got back from my Pet scan.  Not so good news.  cryingI went from stage IIIC to stage IV.  The scans showed the mel has spread to my spine.  That does not sound like a good thing.  I have previously tested positive for the B-RAF mutation so my Oncologist is signing me up for the BRAF trial.  smileyHopefully that will start in a few weeks and will help shrink this beast.  Gee, I was just starting to feel better after completing my radiation treatment on 8/31.wink

Any thoughts and prayers would be welcome at this time.   Add another stage IV warrior to the list.  Hoped I would not join that list, but oh well, what can you do.  Mel is going to do what it wants, but I am working to kick his butt as best i can.  Time for a little more crying before I get on with my life.

Bill from Illinois Stage IV Spine Mets, brain mets ans subq mets. starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

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cubsgirl21's picture
Replies 15
Last reply 10/7/2010 - 1:26pm

I know this board is more geared toward later staged melanoma patients, but I'm still really scared for my fiancee. He's 35 and had a mole removed and it tested positive for melanoma stage ll. He's scheduled for surgery in a few weeks at U of M in Ann Arbor. I'm just wondering what to expect? He has a consultation at 1 and then surgery at 2. How long does the surgery last? I expected him to have more tests done before they start removing any skin, but i'm not sure what they're going to do at the consultation. If anyone has any advice for us, let me know. I'm really scared because we have a 2 year old daughter and I want my fiancee(her father) to watch her grow up and graduate school, etc. How long is Chris (the fiancee) going to live after he gets the cancer removed?

 

-Very Worried

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/10/2010 - 11:52pm
Replies by: KatyWI, Anonymous, Sharyn, jag

Can anyone explain what this means - " There is new focal uptake within each ovary. This is likely physiologic."

and - " There is an ill-defined non hypermatabolic nodule/infiltrate in the right middle lobe. This is an area where previously there was a linear atelectasis." (Follow-up is recommended)

 

 

 

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killmel's picture
Replies 8
Last reply 9/11/2010 - 8:57pm

Hi Everyone

 

I just had my MRI brain scan & PET/CT scans. I consider the results to be very good. No organ involvement, no brain mets.....Just still have 2 node: .4mm &.6mm in my left thigh.

My primary was in my foot 2005, 1st intransit in thigh removed 9/2009, 2nd intransit in thigh removed 5/2010.

I am considering Rouche BRAF. I am  Not happy about Braf because the response might not be long term & might have to continue to take the pill ongoing with no end point. Also, considering IPI.  IPI scares me because of the potential severe long term effect, but at least there is an end point to the treatment.

Last but not least, I can watch & wait, but that will not cure my cancer, Stage 3c

My preferance would be to do IPI but reading all the post regarding the side effects for IPI scare me. I am very active person & I am afraid my tumors might spread or grow before IPI kicks in (I onlyhave a  .4 &.6mm in left thigh, afraid IPI will spread tumors to organs) or that I might get one of severe side effects.

Has anyone done IPI with minimum side effects?????Need some words of encouragement. Anyone having long term response with Braf??

I need to decide to do "systemic treatment or "wait & watch". I would sincerely appreciate any opinions or feedback, recommendations.

Thank you for taking the time to read my post and replying.

 

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Jerry from Cape Cod's picture
Replies 7
Last reply 9/11/2010 - 9:40am

Promising Treatment for Metastatic Melanoma 'Fast Tracked' by FDA

Sep 9, 2010 12:34:00 (ET)

HACKENSACK, N.J., Sept 09, 2010 /PRNewswire via COMTEX/ -- Researchers from the John Theurer Cancer Center at Hackensack University Medical Center played an important role in a study that led to the Food & Drug Administration's (FDA) recent fast tracking of ipilimumab, a promising treatment for metastatic melanoma. The FDA based its decision largely on the results of a pivotal study published in the New England Journal of Medicine on August 19, 2010 - the same day the agency accepted Bristol-Myers Squibb's application for the drug's approval and granted the application priority review status.

Ipilimumab is the first drug shown in randomized, placebo-controlled trials to improve survival in stage IV melanoma.

"This study, and the FDA's decision, provides new hope for people with this devastating cancer," said Andrew L. Pecora, M.D., F.A.C.P., C.P.E., Chairman and Executive Administrative Director, John Theurer Cancer Center, who led the study at the John Theurer Cancer Center. "We are proud to have played a role in helping move another promising cancer treatment closer to market."

The incidence of metastatic melanoma has increased over the last three decades, and the death rate continues to climb faster than that of most other cancers. According to the American Cancer Society, there were approximately 68,000 new cases of melanoma in the United States in 2009, and 8,700 melanoma-related deaths. Melanoma accounts for about three percent of all skin cancers, but 80 percent of skin cancer deaths. Melanoma is difficult to treat once it has spread beyond the skin to other parts of the body (metastasized). Very few treatment options exist for people with metastatic melanoma.

In this phase III study, researchers randomly assigned patients to one of three treatment groups: those receiving ipilimumab plus an inactive (placebo) version of gp 100, a cancer vaccine; those receiving ipilimumab plus gp 100; and those receiving gp 100 plus ipilimumab placebo. The treatments were administered once every three weeks, for a total of four treatments. The study was double blinded: neither the researchers nor the patients knew which medications the patients were being given.

To participate in the study, patients must have had stage III or IV (metastatic) melanoma, and must have been previously treated unsuccessfully with another cancer drug. They must also have had a life expectancy of at least four months. 676 patients participated in the study at 125 cancer centers.

Those who received ipilimumab, both by itself and with gp 100, lived a median of about 10 months, while those who received only gp 100 lived about 6.4 months. After two years, approximately 23 percent of those who got ipilimumab were alive, while 14 percent of those who did not receive this drug survived. Ten to 15 percent of those who received ipilimumab suffered attacks on their bodies' immune systems (autoimmune reactions), and seven of the 540 patients who got this drug died from these attacks. Most adverse events suffered by study participants, however, were reversible with treatment.

A monoclonal antibody, ipilimumab activates the body's immune system to fight cancer by blocking a protein called CTLA-4. CTLA-4 is a molecule on T-cells, white blood cells that play a critical role in regulating immune responses. CTLA-4 suppresses the immune system's response to disease, so blocking its activity stimulates the immune system to fight the melanoma.

The FDA grants priority review status to drugs that offer major advances in treatment, or that provide treatment where no adequate therapy exists. The projected FDA action date for the ipilimumab application is December 25, 2010.

 

-end

 

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Shelby - MRF's picture
Replies 2
Last reply 9/12/2010 - 9:27am
Replies by: bri11iance, MaryD

Hello!  I just wanted to let everyone know that we have added some great information to our website today.  It is a summary of the June 2010 ASCO (American Society for Clinical Oncology) meeting.  This is a VERY TECHNICAL summary of the various clinical trials, medications, and information presented at the conference.  It is only meant for you to be informed of the latest and greatest in the melanoma field.  Here is the link, or you can find it under Patient Info and Resources, Clinical Trials.

http://www.melanoma.org/learn-more/melanoma-101/american-society-clinical-oncology-asco-june-2010-update 

We hope you enjoy this new material and most of all, we hope you learn something from it!  Also, keep an eye out on the bulletin board about us updating other areas in our About Melanoma and Patient Info & Resources sections.  We may ask for feedback and ideas from you, our wonderful online community!  Have a great day!

Shelby - MRF

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Sherron's picture
Replies 1
Last reply 9/9/2010 - 4:34pm
Replies by: Linda J

Jim has a lump under the skin in his right breast/chest area.  It is causing him a little discomfort and it is itching?  What does the itching mean?

He has about 5 other places (lumps)...some get big, ache a bit, and then get smaller...What does all this mean?

Thanks for any responses!

Take Care,

Sherron, wife to Jim

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Sharyn's picture
Replies 1
Last reply 9/9/2010 - 6:28am
Replies by: Linda/Kentucky

Hi everyone,

First of all, I've recovered well from the mastectomy. Stitches and staples came out last Thurs, and the drain came out on Sat. I'm still in bandages, but that's no big deal. I'm out and about as usual, going up to the cabin on weekends, and riding the quad. I have to wait a few more weeks for my prosthetic breast, but in the meantime, I have an insert for my bra, compliments of my friend Linda at the Home Health Care store. I asked her if she had anything better than the 4 pairs of socks I had stuffed in my bra, so she fixed me up. LOL!! 

Anyway, all my plans are in place for the Ipilimumab treatment. Jim and I are heading to Montreal on Monday evening (13th). I have bloodwork, EKG, CT scan and appointment with Dr Mihalcioiu on Tues, Orientation for treatment on Wed morning, then we head home that evening. 

Back up again for the actual treatment on the 23rd -- fly up on the 22nd, treatment on the 23rd, then home that evening. The treatment is given via IV for 90 minutes. I have to go back every 3 weeks for 12 weeks, then we stop for scans and see how I'm responding, and go from there -- either another 12 week run, or maintenance of one treatment every 3 months.

No need to respond. Just wanted to update you. BTW, our vacation plans fell by the wayside. Things got too busy at work for Jim, so all he can take off are the few days he's in Montreal with me. Bummer! :>(

Hugs

Sharyn

Stage IV
 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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