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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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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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

 

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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

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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

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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!

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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

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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.

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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?

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Tim--MRF's picture
Replies 1
Last reply 6/3/2012 - 11:44am
Replies by: Gene_S

A lot of you have been following the news about the new drugs that block PD1 or PDL1, and you may have seen that new data were reported yesterday at ASCO.  I thought you might like a bit of an update.

For months researchers have been talking about these drugs, with some optimism.  

 

WHAT ARE THESE DRUGS?

I am not a scientist, but here is my understanding.  Our immune system has a lot of different components, including T-cells.  These cells should attack tumor cells and kill them before they are able to grow, divide, and move around the body.  But if T-cells were active all the time they would also attack good cells, resulting in auto-immune disease.  So the body has several mechanisms to stop T-cells from functioning.  One of those mechanisms involves a compound called CTLA4, and Yervoy (ipi) works by blocking the activity of that compound.  In essence, Yervoy takes the brakes off the immune system.

PD-1, which stands for Programmed Death 1, is another compound in the CTLA4 family.  These new drugs block PD1, just as Yervoy blocks CTLA4.  Four companies have anti-PD1 drugs in development, but BMS is further along in the process than the others, with Merck a close second.  

PD-1 has a counterpart on some tumor cells called PDL1, or PD-1 ligand.  When PDL-1 interacts with T-cells it shuts them down, making them ineffective.  So at least two companies, BMS and Genentech, are working on drugs that block PDL-1.  

 

WHAT IS THE DATA SO FAR?

The data yesterday showed that in a relatively small study, anti PD-1 has strong activity in metastatic melanoma.  Response rates in a group of studies ranged from 19% to 40%, with relatively minor side effects.  While these are very exciting numbers, it is still early days.  Several other compounds have shown good results in small studies, only to be less effective in larger groups.

Studies of anti-PDL1 are less mature, but are also showing some good responses.  Part of the problem here is that we know of two different ligands for PD-1, called PDL-1 and PDL-2.  If you block one, the other may still be able to shut down the T-cells.  Also, it may well be that other PD1 ligands exist that have not yet been discovered.

 

WHERE ARE THE STUDIES NOW?

Both BMS and Merck are moving forward with additional studies, including a number of specific trials for people who have been on ipi, people with ocular melanoma, etc.  So we should be see quite a few more slots over the next few months.  

Researchers have been concerned that the companies are moving too slowly in developing these drugs.  The MRF Breakthrough Consortium formally contacted the companies with this concern over a year ago, with the result that more melanoma slots were made available.  In fact out of several different cancers studied with these drugs, melanoma was second in number of patients enrolled.

I have been in contact with the companies and have expressed this concern as well, so they know that patients are paying very close attention to this.  The intention is the keep the pressure on, and at some point I may ask people from this board to contact the companies to help with this pressure.

 

THE BOTTOM LINE

I can tell you that hallway conversations at ASCO are all about these drugs.  Some feel they will become the standard of care over the next few years. Some even think we may see very high response rates, and even cures from these drugs.  One person said, "We may be able to cure 40% of melanomas within a few years."  I think this is too bold, given the early state of the data.  A lot can change between where we are now and where we need to be.  Having said that, it is great to feel the enthusiasm and energy around this.  I remain convinced that we live in a time of real hope for melanoma, and equally convinced that we must keep pushing as hard as possible to move the research forward as quickly as possible.

 

Tim--MRF

 

 

 

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Carla Edge's picture
Replies 3
Last reply 6/11/2012 - 10:12pm
Replies by: kylez, Swanee

I am new to this board.  My husband is stage IV with a met on muscle around his small int.  He was diagnosed in Jan and was randomized into the TIL study at the NIH.  So far, they can't tell if the tumor is growing slowly or just changing shape.  We are deciding this week the next step to take- likely ipi.  Roy was feeling pretty good after release from hospital.  Two months later, he feels lousy.  He went from a rather normal existence with an afternoon doze to flat on his back on the couch most of the day.  Nothing seems to cheer him up.  Docs said to expect him to go backwards, but we didn't expect it to be this terrible.  I've tried to be supportive, but find myself acting impatient and "witch-like" sometimes.  Is this the proper forum to vent about all of this, or is there a similar board for spouses/caregivers?  I love reading posts on this board.  Thank you for sharing all of your stories.  They all give inspiration in one way or another.  Thank you all!

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Carla Edge's picture
Replies 3
Last reply 6/3/2012 - 1:56am

I am new to this board.  My husband is stage IV with a met on muscle around his small int.  He was diagnosed in Jan and was randomized into the TIL study at the NIH.  So far, they can't tell if the tumor is growing slowly or just changing shape.  We are deciding this week the next step to take- likely ipi.  Roy was feeling pretty good after release from hospital.  Two months later, he feels lousy.  He went from a rather normal existence with an afternoon doze to flat on his back on the couch most of the day.  Nothing seems to cheer him up.  Docs said to expect him to go backwards, but we didn't expect it to be this terrible.  I've tried to be supportive, but find myself acting impatient and "witch-like" sometimes.  Is this the proper forum to vent about all of this, or is there a similar board for spouses/caregivers?  I love reading posts on this board.  Thank you for sharing all of your stories.  They all give inspiration in one way or another.  Thank you all!

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