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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Gene_S's picture
Replies 1
Last reply 5/20/2011 - 8:01pm
Replies by: RMcLegal
mimi0201's picture
Replies 10
Last reply 5/20/2011 - 7:49pm

Does anyone have any idea of what the status has to be in order  to receive Yervoy?  When is it too late?

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Terra's picture
Replies 5
Last reply 5/19/2011 - 10:30pm

Hi, Derek was taken off of his P13K/Mek inhibitor trial in Toronto because the breakdown of a muscle enzyme was too high - we really thought it was doing something, he was on it for a month and was feeling really good. He has been off it for two weeks, we are now waiting for ipi washout period which is 28 days I think this is too long, scans showed lots of melanoma before original trial - 3-4 in bones, inumerable mets in liver, 1 in kideny, and some in muscle, and possibly other places. 

Very afraid of brain mets.  Derek is taking small naps here and there, eating well, doing some light work at home and our rental properties. I guess you can't tell looking at him what is happening, he does seem to be very forgetful which is not like him at all, but I just don't know what to do in the meantime while we are waiting - Should I push for sommething in the next two weeks or I guess the wash out period is for anything any drug (we are in Canada and so yervoy is not registered yet.)

I know there are many people in similar situations - I am thinking of all of you.  

 

TErra

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/19/2011 - 8:59pm

Hi people. My name is Meagan. I've been fighting melanoma since 2004 . I am 24 years old. I'm about to start my 5th different type of chemo treatment next week. Ipilumbab (IPI)
I was wondering is anybody would mind letting know What to expect from this drug. Side effect wise.
I have a tumor in my left groin area.
Will my hips swell?
Does it effect appetite?
Will I lose or gain weight?
Is it flu like symptoms?
Any info would really help me out alot and help me feel alot more confident in starting this treatment.
Thank u for ur time and consideration.
-meagan

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gtown's picture
Replies 8
Last reply 5/19/2011 - 5:50pm

Hey what's up? I just had a sentinel lymph node biopsy today as well as the removal of the nodular melanoma tumor on my shoulder ( surgeon said it was approx 1.9 mm, non ulcerated, with a mitotic rate of 7) My question is; he said he removed 3 or 4 lymph nodes which really concerned me, isn't just one lymph node usually removed during this process? I asked him this after the operation and he stated that they were so close ion proximity he felt better off taking the 3 out, is this something to be concerned about? The melanoma is on my shoulder and he took the three from under the armpit. Any insight would be greatly appreciated.

P.S. He stated he saw nothing out of the ordinary while doing said procedure. No swollen or hard noides etc. 

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I've been thinking of her.

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I've been thinking of her.

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I've been thinking of her.

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Carol Taylor's picture
Replies 1
Last reply 5/19/2011 - 3:59pm
Replies by: TracyLee

Something I've just created. Find the words and phrases listed. "Melanoma" is odd because I couldn't get the letters to line up right, so either play with it and correct it, or, give yourself an extra point for finding it.

       SEEADERBMATOLOGISTRMPALEHIRU
       YU SQMIUBESUNSMARTMLSIWNILIHS
       OUSEASUNBLOCKDONTBESTUPIDEG
       GEDROHGIBANTANNINGBEDSCORUI
       RESFGOWIIANOTOSUNBURNSXMART
       SPPLEASEKNOWTHESKINYOUAREIN
       KNOWYOURMOLESBYHEARTPORWN
       MAPLIKNOWABCDSOFMOLESLKPHW

Melanoma

See a dermatologist

Be sun smart

Use a sun block

Don’t be stupid

Ban tanning beds

No to sunburns

Please know the skin you are in

Know your moles by heart

Know abcds of moles

Pale

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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jag's picture
Replies 5
Last reply 5/19/2011 - 1:47pm

Having been out of the treatment loop, unfortunately, I have lost track of all of the different trials out there, so many letters, so many mutation types, so many histology tests so many drug companies and so on.  I would like to start to organize the different medications (at least get started) so we can see what is working for who.

 GSK 113929

is the number of a trial who "patient" I won't say it yet, is responding very well to.  The drug is made by Glaxo Smith Kline, it is for people with BRAF mutations who also have brain mets.

This is the actual medication name: GSK2118436

The patient has responded amazingly well despite a severe recent relapse.  For now consider this information to be similar to a statistic in a lab report.  

The patient will give the patients own account with much more personality and entertaining details.

Just putting this one out there as it is helpful if you have brain mets, and are not responding.

Here is the link:

 http://www.clinicaltrials.gov/ct2/show/study/NCT01266967?term=GSK+113929&rank=1&show_locs=Y#locn

Information that would be helpful:(just copy and paste this form and fill in your treatments)

Drug name/clinical trial letters/manufacturer

Trial Name

Drug Company

Response duration vs non Response 

Previous Treatments

Mutation status.

Hopefully we can organize this information as to which companies are producing a better product.  Back when Yervoy was being investigated, it was originally a biopharmaceutical startup made by a company named Medarex.  Pfizer was making a similar product at the same time.  For some reason, The Medarex one was better and zipped right through the clinical trials, it went from the names MDX 010 to Ipilimumab to finally Yervoy.  Pfizers was simply discontinued.  

Thank you and I hope this is a helpful start by patients for patients.

 

.

 

 

Insert Generic Inspirational Motto Here

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LynnLuc's picture
Replies 5
Last reply 5/18/2011 - 11:38pm
Replies by: FormerCaregiver, nicoli

Posting this because in the beginning I  was on this and I knew it didn't hold mine back for long...the radiation did more then Temodar did...

Temozolomide chemoresistance heterogeneity in melanoma with different treatment regimens: DNA damage accumulation contribution.

The efficacy of temozolomide in melanoma treatment is low (response rate <20%) and may depend on the activity of O-methylguanine DNA methyltransferase (MGMT) and mismatch repair. We identified melanoma cell lines with different sensitivities to single versus prolonged clinical dosing regimens of temozolomide treatment and assessed a variety of potential resistance mechanisms using this model. We measured mRNA expression and promoter methylation of MGMT and essential mismatch repair genes (MLH1, MSH2). Cell cycle distribution, apoptosis/necrosis induction, O-methylguanine-adduct formation, and ABCB1 gene expression were assessed. We found that three cell lines, MelA, MelB, and MelC, were more sensitive to a single dose regimen than to a prolonged regimen, which would be expected to exhibit higher cytotoxicity. KAII and LIBR cell sensitivity was higher with regard to the prolonged treatment regimen, as expected. Only MelC expressed MGMT. Gene expression correlated well with promoter methylation. Temozolomide exposure did not alter mRNA expression. Different sensitivities to temozolomide were caused neither by delayed apoptosis induction due to early cell cycle arrest nor by O-methylguanine-adduct formation or efflux transporter expression. MelC was the most resistant cell line with rapid elimination of O-methylguanine adducts. This was in good agreement with its MGMT expression. The sensitive cell lines KAII and LIBR accumulated O-methylguanine adducts after a second treatment cycle with temozolomide in contrast with the other three cell lines. We conclude that MGMT expression and DNA adduct accumulation are relevant factors in temozolomide chemosensitivity. Considering individualized temozolomide treatment regimens either by quantification of DNA adducts or by chemosensitivity testing seems worthwhile clinically.

http://www.curehunter.com/public/pubmed21460749.do

May 26th will be 14 months NED

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"

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itsmitzi's picture
Replies 9
Last reply 5/18/2011 - 11:07pm

I know oncologits don't like to order pet scans for stage 2 folks like me unless they are symptomatic,but my gp doctor wants to do a 2 year follow up pet scan.  The only symptom I have is a palpable lymph node under the culprit arm.

I sorta figure 'why not?' as it's a chance maybe to see if I'm all okay.

mitzi

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shellebrownies's picture
Replies 13
Last reply 5/18/2011 - 8:33pm

And the hits just keep on comin'....

After letting the doctor know that  Don has started having lower back pain, they did a new MRI of the area. Not only has the cancer spread in the bones of his spine, it has now affected the sheath surrounding the spinal cord in at least one place. This news is added to my getting the copy of Don's CT scan from the 6th that said he has "innumerable" small lesions in his liver. (These results were never told to us, thank you very much, I had to retrieve from the Patient Gateway website...)

Explain to me again why the the heck he hasn't received treatment yet?

Well *now* they want to treat him...with steroids and radiation to shrink growth in this area (which will then make him inelegible for his trials). We have decided to hold off a couple days while we get our second opinion from Dr. Lawrence on Thursday.

Anyway, thanks for letting me vent. I could use some encouraging words tonight...this dang disease is spreading so fast!

 

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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eaca's picture
Replies 11
Last reply 5/18/2011 - 4:36pm

My dermatologist removed a mole from the center of my back last week because it had grown and started to bleed.  She called me two days later with the news that the pathology report has shown melanoma.  She has referred me to the Melanoma Center here in Houston and I have my first consultation scheduled for Friday (5/20/11).  What questions should I be sure to ask the doctor at this appointment?  Thanks for any advice and help from those more experienced!

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Hi All,

 My husband just had his 6 week scan after starting on PLX4032, the Roche Braf inhibitor. He had to be taken off for a 4 days during the last 2 weeks due to side effects, but had been back on the drugs at a reduced dose for the last week before the scans.

Apparently they show a slight progression, the doctor said he's calling it "stable" for now, and wants to check again in 3 weeks.

Jay had been on a MEK inhibitor previously and the docs were worried there might be some drug resistance to the Braf inhibitor becasue of that.

Did anyone else have a similar "stable" scan after taking the drug for 6 weeks and if so, what happened next?

We were so hoping we'd get at least 6 months out of this drug before moving on to the next.

 

thanks,

Emily

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