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.

Expand/ Collapse Topic
 
Replies By
View Topic

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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!

Login or register to post replies.

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.

Login or register to post replies.

Wetterhorn's picture
Replies 5
Last reply 6/4/2012 - 6:20pm

Been a while since I have posted, lots going on the news these days so I thought I would come and check out the board. The PD-1 therapy and MEK look quite promising, which is always great to see. Nothing like some uplifting clinical news to give new hope. I'm going to pepper Dr Carvajal about the new drugs when I see him this week up at MSKCC. Going in for liver MRI and full body CT today. I have been stable for just over a year now with a sub 1 cm met in the liver (at least that is what they say it is, no biopsy has been performed though). Did yervoy last July/Aug and got 3 infusions before severe side effects derailed my last treatment and subsequently destroyed my adrenal and thyroid glands. But, the liver met has not grown, so I suppose "net net", its a win for now.

And the intestines are doing well after the 2 surgeries I had last spring. No real problems there. Obviously have a little scanxiety today and will be hoping for the best on Thursday when I get the results.

Wetterhorn

 

Login or register to post replies.

cltml's picture
Replies 3
Last reply 6/4/2012 - 11:29am
Replies by: Erinmay22, Richard_K, cltml

Can anybody recommend a hotel with reasonable rates near MSK in New York.  The Marriott that has hospital rates seems to be out of rooms and we are getting quoted rates of $500.  Good grief!  Any recommendations anybody has would be welcome.  Thanks.

cltml

Login or register to post replies.

natasha's picture
Replies 3
Last reply 6/4/2012 - 8:36am
Replies by: Anonymous, natasha, Janner

Hello !

      I decided to post my question here ,because cannot find information somewhere else.

I had WLE 3 months ago and since that I had 3 spots on this scar. Scar healed very well without any infections or so.

But yesterday I descovered 2 small spots on the scar ,and I had one a month ago as well.

When I pressed on this spots it was white liqued ,like any usual spot.

I am very sorry about all this details ,but I am worring about this can be sing of local reaccurance of melanoma.

Did someone had the same?  Is it sign of reaccurance ?

My next follow up is on the end of July only and I worrying.

Thank you for understanding and support

Natasha

Login or register to post replies.

Doe anyone know of any success with Zelboraf and.the v600D mutation outside of a petri dish. I have a cardiac met and could not get into several trials because of it, or the D mutation. I'm on a reduced 720 mg dose because of the side effects, including grade 4 allergic reaction (rash) on the full dose and just getting discouraged waiting to find out if it's even effective. Fortunately my doc is involved with the trials and knows the drug well, just not sure Vandy has any another v600D mutations. Of course I'm grateful that I'm allowed to try it when so many aren't. What about Zelboraf and heart tumors??

Thanks!

Login or register to post replies.

Tim--MRF's picture
Replies 7
Last reply 6/4/2012 - 6:09pm

I have had some great hallway and off-line conversations during ASCO so far, and hopefully more to come.

I had heard in the past that some patients are not being offered Yervoy because their doctors see few melanoma patients and didn't feel comfortable prescribing it.  This is, I think, a major issue.  Is it unethical for a physician to prescribe a course of treatment that has little likelihood of offering benefit simply because they are more familiar with that treatment approach?  If a doctor doesn't feel they can manage the side effects of a drug should they refer the patient to another treatment center or simply not mention that drug to the patient?

I have heard now from several sources that this is exactly the behavior that is happening, and that it is happening far too often.  I also have heard that a similar challenge is happening with Zelboraf.  Many patients with advanced melanoma are not being tested for BRAF mutation, even though an approved drug on the market has shown very strong responses for patients.

We are considering creating an educational program for doctors to provide updates on treating melanoma, but I wonder if a better approach is to do more education for patients so they demand the testing they deserve.  I know that people on this board are very active in pursuing good treatment options, but I worry about the patient who does not access the internet and is being treated by a doctor who sees maybe one or two melanomas a year. How do we reach those people?

Tim--MRF

Login or register to post replies.

bwalchli's picture
Replies 1
Last reply 6/3/2012 - 6:17pm
Replies by: awillett1991

To get side effects under control low dosage seems to help. Why is there a recommendation not to go below half the recommended dosage.

Are there other side effects that could show up or is it just because it would be not so effective anymore?

Beni

There is real hope in this world through Jesus Christ. That's what my wife Gisela and I strongly believe.

Login or register to post replies.

OB Mike's picture
Replies 2
Last reply 6/8/2012 - 11:29pm
Replies by: emichaelward, Tim--MRF

After 2 stomach resections I developed a new tumor in my abdomen. It is now quite large! I finished four doses of ippi in mid-April without any noticeable side effects... But now I seem to be having "minor" delayed effects?! Fatigue, lethargy, dehydration, low blood pressure, blood clotting DVT, mild diarrea and eye pain! I have had two blood transfusions and a hydration IV. I am on blood thinner shots, blood pressure meds and started narcotics for pain. So I guess my question is... Can just the cancer cause all these effects and/ or is it the battle with the ippi, a sign that it may be working?

Login or register to post replies.

Pages