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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EricNJill's picture
Replies 13
Last reply 4/7/2011 - 12:48pm

When Eric began the BRAF/MEK combo we knew there was a chance that the Melanoma would find a different pathway and come back, unfortunately that seems to be what is happening. We just didn't expect it to happen so soon... When Eric started the treatment his LDH level was very high and throughout the treatment is was dropping until 2 weeks ago...it's began to climb again and the level in his blood today was as high as it was when he first started the treatment.  Because of this and the changes in his leg, the Oncologist believe that the treatment is no longer working. Eric was pretty upset and asked to be left on for another week to give it a chance and the doctor agreed to do so. He had a clinical trial consultant come in and talk to us about starting another treatment. I will be spending a lot of time this week researching that as well as other options.

The new trial they are offering him is the Eisai E-7080 that I saw someone else post about on the forum. 

JillNEric in OH

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KellieSue's picture
Replies 3
Last reply 4/6/2011 - 9:44pm
Replies by: jag, King, Fen

6 weeks on B-RAF and first scans today!

Slight shrinkage.! Whoop! Of course I would have loved to hear, "We can't find anything on the scans. "  Ha! Since I know that
won't happen I'll take some shrinkage.

My neutrophil count was kind of low at 1100 and it has to be at 1500 per clinical trial rules so I have to stop taking it for a few days. I'll have another blood draw on Friday, not likely that it will go back up there in just 3 days, but here's hoping. (Guess I'll make some liver for dinner. ;)

My dr. tried to convince them to let me keep taking it since I'm asystematic but it was a No-Go. My lymphocytes are still pretty high, likely the IL-2 still floating around in there maybe?
So.. just waiting around now. Dr. wasn't worried about being kicked off the trial, this is just a hiatus.

I feel pretty good. Side effects include some intermittent diarrhea, some acne that just started the last fews days and dry skin.

Kellie(from Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Yesterday my husband had his first two week doctor's appointment after beginning the GSK BRAF/MEK trial at UCSF.  We thought that some of his skin lesions looked smaller, but were afraid it was just wishful thinking.  The doctor confirmed that our observations were not merely wishful thinking. He looked at one lesion and said "You call yourself a tumor?"  Apparently, our doctor believes in trash-talking tumors.  We both left feeling more hopeful than we have in a long time.

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Anonymous's picture
Anonymous
Replies 27
Last reply 4/18/2011 - 12:53pm

On Friday I joined your ranks. Last summer, I noticed a mole that had grown up, like a skin tag. I didn't like it but waited until my annual physical to ask my family doctor who thought it was nothing. I was seeing a dermatologist for other skin issues so I asked my dermatologist. She didn't think it was anything. When I was back for another treatment of the other skin issue I asked to have it removed for cosmetic reasons which happened on March 25th. Mar 31 I get called backed. The pathologist grapped my dermatologist in the hall to say that the benign lesion was melanoma. I met with my dermatologist on Apr 1. She didn't have the pathology report yet but told me that it was 1.45 mm and level iv. She had already requested blood work (for LDH), CT-scan and SNIB. Meeting with surgeon is tomorrow and CT is Thursday evening.

Like many who are newly diagnosed, I'm scared but I'm trying to manage my emotions until the facts are in. Anyone in Ottawa with melanoma treatment experience?

Be Not Afraid-God is with you always Stage IIIa

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Just ran across this and thought it may be of interest.

http://therapy.collabrx.com/

 

From the Cancer.net website:

Targeted Therapies

This section is the result of a collaboration between ASCO and Cancer Commons – Melanoma and is updated dynamically.

As mentioned in the Treatment section, a patient’s treatment plan can be tailored or personalized based upon known subtypes of melanoma. This approach, known as targeted therapy, is designed to target or inhibit specific genes or pathways that contribute to melanoma cell growth. This is a major focus of research for melanoma.

Patients can learn more about these genes and pathways by using the Targeted Therapy Finder, a search tool that provides information on possible therapies and diagnostic tests based upon a patient’s melanoma diagnosis. Patients are encouraged to use this tool and share the results with their doctor when making treatment decisions.

The information provided through this resource is maintained by the Cancer Commons – Melanoma editorial board.

http://www.MelanomaResources.info

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sharmon's picture
Replies 1
Last reply 4/6/2011 - 7:54pm
Replies by: King

Hi everyone,

We just got the news that after 14 months his tumors are growing again,  He is Braf negative,  has tried luekine,  ipi  with chemo, and bio chemo,  the gsk mek trial is opening combo trials using chemo and MEk together and they want to move him into one of those right away at MD anderson. 

Does  anyone have any ideas.

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Manubuzzi's picture
Replies 19
Last reply 4/11/2011 - 6:29pm

 

Greetings to all,
 
I wanted to know the general and overall opinion on the steps that my family is taking to fight against my mother's illness.  Her first symptom appeared en January of this year, it was limited mobility and paralysis of her arm and leg.  After some tests, she had an operation (2/24) and a tumor was extracted from her brain. Biopsy Diagnosis: Melanoma.  PET Scan results (3/29):  2 brain tumors, 1 tumor in the liver, and 1 adrenal gland.  Since the operation, my mother has been very weak and unable to walk.  She had lost her ability to speak, but recuperated it quickly.  Now, for the last few days, she is starting to again have difficulties with her speech and it's getting worse.  We aren't sure of the real cause of this new symptom, given that it has been 40 days since the operation and we hadn't seen any type of relapse or problems until recently.  Now, the doctor has tripled the Corticoid dosage to see if it helps improve her speech.  
 
My mother is afraid, and her five children, myself included, are terrified.  Dr. Silva, the best specialist in Argentina, with whom we had a consultation yesterday (4/4) said that our first step is Temodar and radiation.  Then, depending on the results, we could choose between 2 treatments for the immune system (the names of which I do not yet have.)  I am writing today to hear some feedback of personal experiences with Temodar and radiation, the side-effects, the effectiveness, the dosages, etc.  
 
I can't seem to find the words to gove her strength or comfort.  She had been a completely healthy person until 3 months ago.  We were not prepared in the slightest for a situation like this.  We are devastated and desperate.  Any comment, word of wisdom, advice, or help, would be much appreciated.
 
Thank you,
 
Manuel
Son of patient 

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emilypen's picture
Replies 1
Last reply 4/5/2011 - 8:17pm
Replies by: Terra

Hi All,

What a journey the last few months have been. My husband has been Stage IV since June 2010 and after being randomized to chemo on the Roche PLX 4032 trial he started on the MEk & PI3K trial in Sept. 10.

Six months later and 15% reduction of the tumours he had a bad reaction to the drug ( a all over body rash) and was taken off the study for 3 weeks. Unfortunately during that 3 weeks one of the tumours in his back decided to start growing again and this time grew right towards his spinal cord. We found out it had only grown 14% which meant he could have gone back on the study but because it got so close to his spine, he needed emergency surgery. The study does not allow you back on if you have an "event". Talk about frustrating!

Now 3 weeks after surgery he is almost finished with 4 treatments of stereotactic radiation ( to take care of any remaining tumour near his spine) and he has been allowed to crossover to the PLX 4032 side of the study through the expanded access program. Our Oncologist is hoping it will work, there are some concerns because he was on the Mek drug that it might not.

His plan is keep my hubby on PLX until it fails and then start Ipi (Yervoy) if there is not anything else better at that time. In Canada Ipi is still on trials as our FDA has not approved it yet.

Anyone else go from a Mek to a Braf inhibitor?

I'm also wondering how long those of you on PLX have been taking the drug with success? And has anyone gone from Braf inhibitor to Ipi? Outcomes?

Thanks so much,

Emily

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TracyLee's picture
Replies 7
Last reply 4/21/2011 - 3:37am
Replies by: nicoli, Anonymous, Carol Taylor, TracyLee, Carmon in NM, Sharyn, Terra

Hello,

I have a scalp graft that was successful last May. Since then I've had 2 recurrences and 2 pinch graft surgeries. I'm now having a scalp resection to cover the bald spot, as I need radiation. I've also got nodes back in my neck, despite a neck dissection last June.

I'm so discouraged! For whatever reason, this surgery next Monday is bothering me more than any of the others, including the original graft which was no fun whatsoever. I'll have 2 surgeons on Monday: plastic surgeon working on my scalp, and my regular oncologist doing bumps under my scalp and the neck nodes.

Everything has spiraled down so quickly that I can barely breathe. I'm going today for an ultrasound guided fine needle biopsy of my neck (to confirm what they all suspect). I can't find much info about what to expect on the ultrasound, other than it will take 2 hours.

Has anyone done radiation after head grafts? What do I need to do to prepare myself? I work full time, and shudder at the time I'm going to miss from work once I start radiation.

I'm still Stage III, so I guess that is a ray of sunshine in a gloomy outlook.

Thanks,

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Peter L's picture
Replies 8
Last reply 4/5/2011 - 7:05pm

Hey Everyone....

generally speaking, do melanoma primaries have pigment.  We noticed a small pencil-eraser-sized non-pigmented 'lesion' near the temple by the hairline last night and I don't know to be concerned or not.  She sees the derm in a few weeks, but sometimes a few weeks can be a really long time.  Do melanomas tend to be pigmented ?

Thanks to all

 

peter

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Hey Everyone....

generally speaking, do melanoma primaries have pigment.  We noticed a small pencil-eraser-sized non-pigmented 'lesion' near the temple by the hairline last night and I don't know to be concerned or not.  She sees the derm in a few weeks, but sometimes a few weeks can be a really long time.  Do melanomas tend to be pigmented ?

Thanks to all

 

peter

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archer's picture
Replies 17
Last reply 4/5/2011 - 10:34am

I admit my human frailties are in this area.  I have never been comfortable doing this but I will learn if it will help my wife.

Only been married less than a year, her age 55.  She is the bubbliest, strongest female I have ever met.  We exercise daily and eat 90%  healthy.

The diagnosis this past Thursday has turned our world upside down, (more so it seems for me than her)  She has the best attitude and there isn't any

pity party going on.

 

I can't understand how she got to this place.  On Jan. 15, 2011, she felt a lump in her armpit.  Went to family doc, he felt it said it didn't feel like cancer

and thought is was an infection in the lymph.  Medicine for 10 days. Nothing changed.  Then on to a surgeon who immediately ordered an ultrsound

and then they did a biopsy the same day.  This biopsy was taken to the local lab and then transferred to Mayo Clinic.  After waiting for 3 weeks, Mayo

told us they couldn't find anything and asked for more tissue.  The surgeon suggested trying to remove the lump which she did.  She said it was the size

of a golf ball.  She also said it was watery with some solids and no tentacles growing out of it.  That lump was again sent to Mayo Clinic and then we 

found out it was sent from Mayo to the Massachusetts General Hospital.  So, again after 3 weeks, they tell us that it is a spindle cell that they feel is

caused by a metastasized melanoma.  She never goes in the sun and there aren't any detected on her skin.  We are really confused and scared.

 

We are to meet with an oncologist this week and see from there.  I am sure they want to make sure she does not have anymore cancer present in

her body.  That is what we are hoping for.

So, I hate that I have to be writing this story but for me, it seems to help to do this... Sort of a therapy.

One question, I am wondering why it took 3 labs, different pathologists and 6 weeks to come up with this diagnosis.  Does that make sense to anyone?

Is it a good idea at this stage to ask for a second opinion?

Thanks for listening.  We are not sure what to do....

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Terra's picture
Replies 2
Last reply 4/4/2011 - 10:55pm
Replies by: Sharyn, washoegal

Hi - Derek's brain MRI done last week - before he started the P13 K and MEK combo trial - results were:

- a tiny dot (2 - 3 mm in diameter) of enhancement is noted centrally in the pons as well as on the coronal and sagittal reconstructions

- there is no clear evidence of edems but a small region of blooming noted in this are on the gradient echo sequence - could represent a small capillary telangiectasia but a metastic deposit cannot be ruled out - follow up is needed

They wetnt ahead and started his treatment.  My question is I have another MRI of the head done in Aug 2010 at another cancer centre should I ask them to compare the two to see if these were there or just wait for follow up - I am a little afraid to wait and afraid to know if these are mets to the brain

I woulod have thought they would have thought to compare them already - need help

 

Terra

 

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Terra's picture
Replies 2
Last reply 9/30/2011 - 2:41am
Replies by: Anonymous, MichaelFL

Hi,

Derek's scans show extensive spreading to the lung, muscle, bone, kidney, and innumerable mets in the liver.  This has really scared us.  He started this trial last Thursday at PMH.  

Is there anyone enrolled or previously enrolled in this phase 1b trial?  If so, could you please share your experiences and hopefully success?

Terra

 

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Replies by: EricNJill, Anonymous, premedy

This weekend Eric had a new tumor pop up in his groin.  The other tumors that were in/on his leg are nearly gone so I am very confused by this.  He also had increased tumors in and around the heart in his scan on 03/18/11.  We weren't worrying too much about them because of the progress in his leg but now with this new tumor that is almost the size of a lemon I am shocked.  Has anyone hear of this on BRAF/MEK?

[URL=http://www.mediafire.com/imageview.php?quickkey=r1f2584j0td1d0b&thumb=5][IMG]http://www.mediafire.com/imgbnc.php/b6d73b5f3bf97007c89ad36df88bee797c5715aaede9a84a6866f02e2b7076592g.jpg[/IMG][/URL]

Picture of the new growth.

JillNEric in OH

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