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 9
Last reply 6/8/2012 - 7:27pm
Replies by: Cindy33, Janner, jaredmiller16, natasha, Anonymous, EmilyandMike

After my diagnosis, I was at the derm every three months and now I am at the derm every six.  However, while I am pregnant, he wants to see me every three months. I was there right before delivering my son last week.

I noticed while nursing that I have a new mole under my breast. Lets just say this mole is not a result of sun exposure :) Because of the odd place, I do not think the derm checked this mole in my last visit. Its not visitable on our pictures and I do not remember him looking there..

Needless to say, I am not to worried about it. Its a reddish color, perfectly symmetrical, and has the texture of a skin tag. It looks nothing like what my mel did.

But, I read on a website that any new mole should be reported to the derm immediately regardless of what it looks like. Although this is good advice, I am wondering since I am pretty educated on mel if this is necessary since I go to the derm as much as I do. I get new moles all the time and I would be in his office at least once a month if I followed this advice. I will do whatever do save my life, but then again, I do not want to drive my derm crazy in the meantime. What do you all do?

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Replies by: alpineartist, POW

I like that there is another new option for those considering Interferon...

From the press release: http://www.polynoma.com/docs/PolynomaCommencesPhaseIIIMelanomaVaccineCli...

Polynoma’s melanoma vaccine has an extensive clinical history, having been safely administered to over 650 patients. The current Phase III study of POL 103A has been initiated based on the results of two randomized, placebo-controlled Phase II trials that demonstrated strong efficacy in terms of significantly improved Recurrence-free survival (“RFS”) and overall survival (“OS”). Additionally, POL 103A has exhibited an excellent safety profile.
Dr. Chiplin commented, “POL 103A’s strong safety profile and tolerability have a significant advantage over Interferon, which has limited efficacy and poor tolerability despite its being the current standard of care for resected Stage IIb – III melanoma patients, for whom there are currently no other alternatives.”

FROM CLINICALTRIALS.GOV

http://www.clinicaltrials.gov/ct2/show/NCT01546571?term=POL+103&rank=1

Eligibility:

Ages Eligible for Study:      18 Years to 75 Years
Inclusion Criteria:
Histologically confirmed Stage IIb, IIc, III melanoma
Surgical resection within 90 days of first dosing
Persons with positive sentinel nodes must have a complete lymphadenectomy
ECOG performance status 0 or 1

Exclusion Criteria:
Any prior melanoma treatment other than surgery or regional irradiation
Diagnosis of non-cutaneous melanoma or melanoma with unknown primary origin
Use of biologic response modifiers within 60 days of first dosing
Subjects with history of other malignancy within past 5 years (with exceptions)

Our experience with melanoma: http://emandmichael.wordpress.com/

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Jamietk's picture
Replies 3
Last reply 6/7/2012 - 11:35am
Replies by: Jamietk, Janner, DonW

Hello all,

I have not posted in a long long time. I do check in occasionally, but have really tried my best to put mel behind me. I am stage IIA, coming up on my 7 year anniversary in a few months. Today I noticed 2 teeny tiny red dots. One of them is exactly 1/2 inch from my wle on my arm. The other is exactly 1 inch from my wle on my arm. One looks/feels like it is on top of the skin. I can't tell on the other one. I'm a little worried. Obviously I'll get in with the derm as quick as possible. I did injur my arm this weekend. I had my car door open and turned to walk away and had not cleared the door. I jammed my arm right where my wle was and it did swell and is very tendor and sore still. But I don't think that would cause 2 red dots, would it? Maybe brusing, but not dots. Any thoughts on this? Thanks for the input.

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deardad's picture
Replies 4
Last reply 6/7/2012 - 11:39pm

So here we are on the second round of Temador not knowing whether it is working or not. From the visible mets it doesn't look very promising.

He just finished 5 rounds of WBR which really for him he said was the hardest treatment so far. Ended up in the hospital to check for a suspected blood clot on his lung due a pain in that area but fortunately was ruled out. No explanation was given, they just gave him oxycodene for the pain.

He is more tired, but still up and about (I am hoping this is just the treatments and not the disease). Where to next? Who knows. Feeling quite sad for the what the future holds and I only hope that the WBR and temador can stabilise things enough to get him on another trial. We have lost so many lately and the reality is far to hard for me to contemplate at the moment. I am very close to my dad and cannot imagine him not here.

Nahmi

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Hello everyone.  I am reading many posts on this forum and wondering if any Stage IV patients/friends are on chemo or are you all just on clinical trials for your treatment.my brother is stage IV.  Thank god his brain and liver are clear but lung and G.I tract are involved.  He is finishing temodor and Abraxane. Had yervoy 12-2011. I don't see many of you on chemo in genral...except IL.  I don't see many on his chemo..temodor, abraxane

Many of you are on trials.  i would like him to consider Anti-PD1 but "time is of the Essence " as they say with melanoma.  time is not what you have when you are stage IV.  One day you have no mets to the brain and then the next few weeks...there it is.   How do you risk participating in a trial when you may have a placebo and not the real deal..and then it is too late...I think that I am missing info or mis-informed.  Appreciate any your advice.

Susan NY

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Hello All -

My Mom's first set of scans since toe amputation, groin lymph node disection (5 positive nodes), consultations with Hodi (Dana Farber) / Chapman (MSK) and radiation treatment are on Sunday the 10th.  This is almost 5 months after her first scanned used for staging (she was stage 3c).

Can you all think positive thoughts for her?  I am confident it will come back NED but I really appreciate all the positive vibes.

Thank you!!

Elizabeth

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noisy77's picture
Replies 4
Last reply 6/8/2012 - 7:32pm
Replies by: Anonymous, susanr, noisy77, aldakota22

Hello All -

My Mom's first set of scans since toe amputation, groin lymph node disection (5 positive nodes), consultations with Hodi (Dana Farber) / Chapman (MSK) and radiation treatment are on Sunday the 10th.  This is almost 5 months after her first scanned used for staging (she was stage 3c).

Can you all think positive thoughts for her?  I am confident it will come back NED but I really appreciate all the positive vibes.

Thank you!!

Elizabeth

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

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yoopergirl's picture
Replies 12
Last reply 6/8/2012 - 3:17pm

I had my cat scan yesterday and found that my lesion's are getting bigger and another one starting on my rib cage. I have been short of breath for over a week and that scan showed I have fluid between my lungs and heart. If it gets worst they will drain the fluid. I am having a couple of biopsies done on June 27th and a week later see the doctor so I can be put in a clinical trial. The trial is called Alpha Gal Trial, did a little searching online but not much info. Since I am Braf negative not much out there for me.

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Tim--MRF's picture
Replies 2
Last reply 6/5/2012 - 10:46pm
Replies by: AllyNTAus, noisy77

Another day of good data for melanoma.  Last year Genentech/Roche had their BRAF inhibitor (Zelboraf, or vemurafenib, or PLX40342 approved, and another company, Glaxo SmithKline (GSK) has been pushing to develop their drug.

In data presented today, the GSK showed similar results to Zelboraf, and possibly had fewer side effects.  They also showed positive results with a different drug, a MEK inhibitor.  And they showed data of the two being used together.  The combination is somewhat more effective than either alone.  Also, the BRAF inhibitors can sometimes cause squamous cell carcinomas.  in combination, that doesn't happen.

I had heard several months ago that GSK had planned to seek approval of the drugs in combination rather that seeking approval of each drug separately.  I learned today that this is not the case, so the combination therapy may be delayed a while.

 

On another front, I met with a company that is developing a new approach to sentinel node biopsy.  We all know the stories of people whose sentinel node was negative for tumor, but who still progressed.  I always thought that his is because the pathologist happened to evaluate the wrong slice of tissue, or possibly just missed the tumor cells.  Turns out that the current system injects a radioactive compound, followed by a blue die.  Those compounds run through the lymph system like a cup of food dye thrown into a stream.  Surgeons have to estimate when to do the surgery, in hopes they will catch both compounds after they have gotten to the sentinel node but before they have flowed out of that node and further downstream.  This works fairly well, but every patient has different flow/clearance rates.

This new company has a compound that binds to cells in the lymph nodes.  It goes into the sentinel node and sticks there for hours.  In Phase II studies, they showed a 99% rate of identifying sentinel nodes, vs about a 90% rate using the current system.  This means that 10% of patients whose melanoma has spread to the lymph system would be staged incorrectly in the current system but may now be staged properly under the new system.

 

Yesterday morning I attended a poster session.  This is where about 50-75 researchers have a large display of the work they are doing tacked onto a corkboard, and everyone walks by to look at the information and ask questions.  A lot of interesting new developments, but I was particularly struck by the fact that at least five researchers were showing data on uveal or ocular melanoma.  Last year's poster session had only one poster for this form of melanoma.

 

One final comment.  I am hearing a lot of talk about treatments for people who do not have the BRAF mutation.  Of course the immunotherapy drugs (Yervoy, anti-PD1, etc.) are available for these patients.  Still, more options are needed for what is about 60% of the population.  Most of the work is still early stage, but some things are looking interesting.

Tim--MRF

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Eileen L's picture
Replies 3
Last reply 6/5/2012 - 10:57pm
Replies by: kylez, Eileen L

Some of you may recall that I posted a number of weeks ago about my fight to get Kaiser to approve my participation in the Roche Braf/MEK trial.starts successful and started the trial almost three weeks ago. I Developed a rash last week, seen by the trial ONC who thought it was a MEK rash. Over the weekend rash got much worse, extending over most of my body. My legs now have big blotches on them where the rash has consolidated into patches and the rash is now on the mucous tissue of my mouth which is very painful. Of course my doctor is at the ASCO meetings, the on call oncologist prescribed some lidocaine mouthwash. I am pretty freaked out that I will be kicked off the trial, I see my regular ONC on Thursday.

Anyone else in a MEK trial that has had such an extensive rash? If so, what was done about it? I get a week off MEK starting on Thursday. Hoping the drug holiday will give my body time to adjust.

The good news is that earlier in the week I had a PET scan and the SUV of my tumor on my right adrenal went from 8.4 to 3.2! Also was having joint pain and fever/chills that have stopped!

Eileen L

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Greetings everyone,

In San Francisco every Third Thursday the Community Health Resource Center (CHRC) offers a Melanoma support group where participants join together for discussion, and to give and receive support from others sharing similar experiences. This ongoing group is facilitated by Kristy Buck, MSW, who also offers individual emotional support counseling at CHRC. Support group attendance is FREE, and refreshments are provided.

The Community Health Resource Center (CHRC) is a non-profit organization that offers nutrition and emotional support counseling, health education lectures, health resources, and health screenings to prevent disease and maintain wellness. Our services are offered based on donation or sliding scale fee.Registration is required before attending a support group. For more information or to register for a group, call 415-923-3155 or email cpmcchrc@sutterhealth.org.

Healthy Regards,

-Melissa

Melissa Brown, Program Coordinator, Community Health Resource Center

2100 Webster Street, Suite 100, San Francisco, Ca

Community Health Resource Center... the next step to better health

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Greetings community members,

The Community Health Resource Center (CHRC) is a non-profit organization that offers nutrition and emotional support counseling, health resources, and health screenings to prevent disease and maintain wellness. Our services are offered based on donation or sliding scale fee.

We currently are offering a lecture series on Melanoma:

The second lecture in the series will be presented by melanoma survivors, and facilitated by social worker Kristy Buck, MSW. July 26th, 4-5:30, 2333 Buchanan Street, Enright Room.

The third lecture covers Stages III and IV, and is presented by Dr. David Minor, renowned medical oncologist with California Pacific Medical Center. September 26th, 2333 Buchanan Street, Level A Conference Room, 5-6:30 pm.

The first lecture was presented on May 25th by Dr. Stanley Leong, renowned melanoma surgeon with California Pacific Medical Center.

CHRC lectures are presented by healthcare professionals, and are open to the community to attend. Any contribution to attend health lectures is welcome, $10 is suggested. Registration required. For more information or to register for classes, call 415-923-3155 or email cpmcchrc@sutterhealth.org.

Healthy Regards,

-Melissa

Melissa Brown, Program Coordinator, Community Health Resource Center

2100 Webster Street, Suite 100, San Francisco, Ca

Community Health Resource Center... the next step to better health

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teri0915's picture
Replies 2
Last reply 6/5/2012 - 9:55pm

Does anyone know much about melanoma in the spine? I see my nero on the 6th but im curious if anyone has any advice to offer. Is it possible to tell if the mass is scar tissue and not living but not growing mel? I had 10 radiation sessions to my spine plus ive had 8 or 9 temodar clycles. I was only supposed to have 12 temodar cycles but im worried about whats going to happen after i finish.
thanks
Teri

Live for today because tomorrow isn't guaranteed. Think positive, it could be worse!

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Hopefully you won't need this info :-)    Gene

http://shine.yahoo.com/beauty/8-household-finds-fight-sunburn-145300241.html

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

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