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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Kaley's picture
Replies 3
Last reply 6/8/2012 - 7:04pm
Replies by: Cindy33, Kaley, Janner

I had a superficial malignant melanoma removed 8 years ago. Stage 1B. Clear  SNB and margins. No lymph nodes involved.  Went on to live my life as told to do.  I was here 8 years ago and remember signing up to Janner's group for Stage 1 mel survivors.

This morning I woke up with a tiny raised mole on my neck.  It is dome shaped, perfect  dark color, shiny.  Unbelieveable how quickly this happened. It was not there last night when I went to bed.  Can this be a Nodular Melanoma? Can I have 2 separate melanomas? Is this possible, and has anyone ever heard of someone having 2 types of melanoma?  I'll take any and all advice. Thank you!!!!!!!!

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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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Kathleen880's picture
Replies 6
Last reply 6/8/2012 - 2:53am
Replies by: tracygonnella, Mishka77, Bosandi, washoegal, Anonymous

Just wondering if anyone is getting treatment with Sylatron injections?  I'm going on my 6th treatment.  I will be doing this for one year. 

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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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CORRECTION:

The Melanoma Support Group in San Francisco is offered every Third TUESDAY from 2 pm - 3:30 pm at 2351 Clay St, Suite 137. Registration is required before attending this group. To register for this group or Melanoma Health Lectures call 415-923-3155 or email cpmcchrc@sutterhealth.org.

More information can be found at www.chrcsf.org.

Healthy Regards,

-Community Health Resource Center

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

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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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Hello everyone,

My name is Youri and I live in the Netherlands.
My father has been sick for a long time and after succesfull radiation therapies, my fathers melanoma's were stable for over a year. In the pas couple of months the melanoma's started growing again. Radiation and chemo didn't work this time. 

We heard about a new treatment, called R05185426, which possibly would lead to stabilisation, or even shrinking of the melanoma's. In the Netherlands this treatment is still in the experimental stage. An entrance requirement is that the melanoma's above the shoulders are stable. Unfortunately my fathers aren't. Yesterday the doctor told us that my father is excluded from the new treatment. 

My question is, whether in other countries than the Netherland, the treatment can be performed or the new chemo can be optained on the free market. 
We are almost out of hope so if you know anything, please reply, and help us.

With kind regards,

Youri Hasper and family

 

Carpe Diem

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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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Good news for anyone lucky enough to have been in Dr. O'Days care.  He is back practicing at Beverly Hills Cancer Center.  8900 Wilshire Blvd., Beverly Hills, CA.  His phone number is 310) 432-8900.  His email address is SODay@BHCancerCenter.com.

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Bob B.'s picture
Replies 5
Last reply 6/6/2012 - 4:20am
Replies by: Bob B., Janner, Anonymous

I hope to learn from the far greater experience of you all.   Just as much, I hope the topic is useful for others.   

Two years ago an oncologist in Brazil offered me a SLNB for a #1, primary (Lentigo Maligna Melanoma/WMM).  Two pathology reports showed a borderline Breslow thickness of .67 and .80.   However, the SLNB offer followed a WLE (without biopsy).  Lymphatic drainage would surely have compromised results of a SLNB, as I've lately learned.  (??)   In any case, other pronostic factors were good.

I declined the SLNB.   No local recurrence for 28 months.   Maybe I was lucky.

Next, I had #2 (Superficially Spreading Melanoma/SSM) excised two months ago- without a biopsy again, despite almost uniform use by dermatologists.   But in view of the excellent pathologist's doubts about "narrow margins", I had another excision/WLE performed.   The pathologist, with whom I had two fascinating conversations, turned out to have been right.  With the second excision, healthy margins had been obtained.  

Two weeks ago #3 primary got the shave biopsy I again wished to avoid.   For two weeks pathology remained in doubt, so the tissue was sent for a second opinion:   Result:   Another, superficially small SSM.   I guess accurate prognosis (Breslow, mitotic rate, Clark, etc) with a shave biopsy is impossible.   But surprisingly, the pathologist's final report failed even to indicate shave depth.  (??)   Orally only, I learned the lesion had been "transected at .94".  

A SLNB was duly suggested as the shave's actual depth below is unknown.   My question is, once again:   Do it or not?

Despite the probability of even greater depth than ".94", I am reluctant.   Reasons:   Doubts about the two weeks of pathology dithering;  shave depth initially went unindicated by the pathologist who, unlike the previous pathologist, seems indisposed to discuss her report;  SLNB positive rate 5-10%;  SLNB non-therapeutic, used strictly for staging;  my uninformed concerns about shave biopsies; survival rates no better with than without;  widespread doubt about overuse.   But perhaps just as important, my usual "less is more.... best surgery is no surgery" prejudice. 

I would really appreciate the kind advice of the experienced members who were so much help with #2.   What do you think?  

Thanks!

 

 

The Only Good Legend is a Dead Legend.

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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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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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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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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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Newmom's picture
Replies 8
Last reply 6/4/2012 - 7:24pm

I have been trying to find out the results of my daughter's biopsy for the past two days and they kept telling me it is not available yet.  I just obtained a copy of the report and it says it was completed and faxed to the drs office yesterday morning.  Why do they do that?  Whenever I called they would tell me they would contact me as soon as it is available but they never did.  This is so frustrating ...

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