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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Replies by: Anonymous

Hi there everyone,

Ive just started taking PLX4032 (4 days ago) as part of the BRIM 3 Trial.  When I first went on this trial back in July, I was randomized to recieve treatment with Dacarbazine (DTIC) , which didnt help me at all. I recieved it for about 5 rounds, when we discovered that my disease was progressing.  Then for a few months I went untreated, while I tried to sign up to other trials (focusing on the V600E BRAF Mutation), only to be knocked back for not meeting criteria by the slimmest of margins.  I then went on to the compassionate use of IPI, with no success either.

So, Im finally getting the treatment that I've so desperately been waiting for, and I am positive that it is going to be the one that is going to work for me.  I just know it, and have faith in its ability to put my disease in the rubbish bin, where it belongs!!  I do know a lot about this pill, its tendency to only work for a certain amount of time, etc, but with this disease, I am living for today. and if I can go through months of 'todays' in remission, without having to worry about this horrible disease then I would be so thankful and happy.  Then when and if a bad 'today' happpens in the future, then I must find and have faith in another treatment......  but for now, I live for TODAY! :-)

So, what I would like to know about is other patients experiences on this pill? 

Did you get any initial side effects when you first started taking it? & did they pass? 

How soon did you see a response?  & what to look for, in regards to it working or not?

How well did it work for you? 

What have been the worst side effects of this drug overall? 

If it worked for you, how long did it keep melanoma at bay?

If it worked for you initially but then stopped, what road did you travel down next?

I'd really appreciate it if some of you wonderfully caring, strong, inspirational people out there would share your experiences and knowledge with me.  Because although Ive read a lot of info on the net, its still 'text book' information as far as I'm concerned.  Its based on statistics and the typical experience.  Im NOT a statistic and neither are any of you!  Im an individual and would like to find out other individuals personal stories and real life experiences.

Thanking you all in advance and sending you all much love and light to guide each of  you out there in MPIP Land on this extremely cruel, lousy and bloody rough journey we're all on.....

love Simmy from Oz   xoxo

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Charlie S's picture
Replies 2
Last reply 1/27/2011 - 2:45pm

Hey there Ellen, I was wondering if you have  full access to this clinical article about Immunizations for Cancer Patients that would be a answer to the post  below about this topic.

If so, would you be able to share?

 

http://www.uptodate.com/patients/content/topic.do?topicKey=~pvpQYfr9CgKK9e

Thanks.

Charlie S

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Thinking about you and praying for peace for you.  I know  how you feel as I am going down the same journey.  It's hard.

Take Care,

Sherron, wife to Jim FOREVER

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Anonymous's picture
Replies 2
Last reply 1/27/2011 - 6:59am

Hi,

 

I am new to the MPIP site & been reading everything. I am stage 3, unrescetable Braf positive. My doctor says I qualify for Braf or Braf/MEK combo trial.

Would like to know for anyone what kind of side effectss and timeframe for a response (tumor shrinkage) have you experienced.

Also, if you get "remission"/no more tumors do you still have to kep taking the drugs forever???

I am scared and hope to learn more from you so that I can go into the trial with realistic expectations.

Any feedback on your experience would be greatly appreciated.

God Bless you all

Lena

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bball's picture
Replies 2
Last reply 1/26/2011 - 11:03pm
Replies by: bball, Janner

I had 3.4mm removed from my cheeck in oct. sentinal node and ct/pet were negative. (no ulceration by mitotic rate was 6). My main onc.has me just doing follow ups but no treatment. second onc basically the same but can get me into 30 day interferon treatment. currently I have been following an immune style diet lots of greens no dairy,wheat and limited sugar. ANY THOUGHTS

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Hi there all,

Ive just started taking PLX4032 (4 days ago) as part of the BRIM 3 Trial.  When I first went on this trial back in July, I was randomized to recieve treatment with Dacarbazine (DTIC) , which didnt help me at all. I recieved it for about 5 rounds, when we discovered that my disease was progressing.  Then for a few months I went untreated, while I tried to sign up to other trials (focusing on the V600E BRAF Mutation), only to be knocked back for not meeting criteria by the slimmest of margins.  I then went on to the compassionate use of IPI, with no success either.

So, Im finally getting the treatment that I've so desperately been waiting for, and I am positive that it is going to be the one that is going to work for me.  I just know it, and have faith in its ability to put my disease in the rubbish bin, where it belongs!!  I do know a lot about this pill, its tendency to only work for a certain amount of time, etc, but with this disease, I am living for today. and if I can go through months of 'todays' in remission, without having to worry about this horrible disease then I would be so thankful and happy.  Then when and if a bad 'today' happpens in the future, then I must find and have faith in another treatment......  but for now, I live for TODAY! :-)

So, what I would like to know about is other patients experiences on this pill? 

Did you get any initial side effects when you first started taking it? & did they pass? 

How soon did you see a response?  & what to look for, in regards to it working or not?

How well did it work for you? 

What have been the worst side effects of this drug overall? 

If it worked for you, how long did it keep melanoma at bay?

If it worked for you initially but then stopped, what road did you travel down next?

I'd really appreciate it if some of you wonderfully caring, strong, inspirational people out there would share your experiences and knowledge with me.  Because although Ive read a lot of info on the net, its still 'text book' information as far as I'm concerned.  Its based on statistics and the typical experience.  Im NOT a statistic and neither are any of you!  Im an individual and would like to find out other individuals personal stories and real life experiences.

Thanking you all in advance and sending you all much love and light to guide each of  you out there in MPIP Land on this extremely cruel, lousy and bloody rough journey we're all on.....

love Simmy from Oz   xoxo

 

 

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carol b's picture
Replies 5
Last reply 1/25/2011 - 10:36pm
Replies by: carol b, Lori C, nicoli

ok. i have a question. my melanoma tumor under my arm is about 4 inches wide. well yesterday i felt terrible and ran a small fever. the tumor under my arm was just throbbing. i was laying on couch and went to roll over and i herad and felt a "pop". and then it fetl like something inside me was running down into my rib section. today my arm feels so much better. My tumor doesnt hurt near as bad and im able to put my arm down beside my side. my question can a tumor burst? and if it can burst will it cause the cancer to spread even more? i need anserws fast please. im extramly worried. do i need to call vandy and as them? thanks in advance for your answers

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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kbc123's picture
Replies 29
Last reply 1/25/2011 - 9:14pm

Hello ~  This is totally new to me and I am looking for answers, support, sanity, sleep, not all in that order.

I am currently in the very beginning stages of my new life-  with Melanoma.  I had a strange mole on my back that was removed last week, got the "unfortunately its Melanoma"  telephone call on Friday.  By Monday, I was seen by a doctor in our local Cancer Institute (CINJ)  who really gave me a better outlook on things, but nonetheless, I am petrified.  I am going for a lymphoscintigraphy and for more surgery to take off more skin/tumor area and I will have a lovely scar on my back ( who really cares about that anyway).   I will take all the scars they can give me, but I want my life back.

Someone on here, please tell me I am going to get through this, because as of last night, my brain can't deal with this. Sleep is minimal, I can't turn it off. 

I will owe you the world if someone could just give me peace of mild. 

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How soon after starting PLX4032, did you know that it was working?  & how did you know?

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LynnLuc's picture
Replies 9
Last reply 1/25/2011 - 5:05pm
Replies by: LynnLuc, filbert, MARTERWAG, Rocklove, Tracy Chicago, Anonymous

I am wanting to go back to work...dx with stage 4 melanoma-I have been NED for nearly 9 months . I am still in the trial here at Moffitt.  I will need 2 more days off for treatment for the trial...Am I crazy for wanting to go back to work? I know if I do go back I will lose my state disability ( from state job in North Dakota) as well as my SSDI. If I get reoccurrence I will never get my North Dakota disability back as I am in Florida now...I wonder how hard it will be and how long it would take to get the SSDI started again...anyone know if it would be easier the second time around?

I feel like I can't sit around and do nothing like I am waiting to die. Yes I know I felt that way in the beginning, but now I really want to move forward and hope and pray for the best.

Another question...should I tell them at my interview about my diagnosis? Or wait and tell my direct manager/supervisor. I know the law says they can't discriminate...but in this  area unemployment is 15% and afraid they can pick and choose and trump up a reason not to hire me if they don't like my dx...I do not want to claim disabled ...I want  to be hired because of my skills and experience...not because of my dx...

anybody want to throw some thoughts out there?? Thanks, Lynn ( have interview next Wednesday...)

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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Rocklove's picture
Replies 16
Last reply 1/24/2011 - 10:29pm

Hi All,

I have been struggling with some pain.. not severe but have been taking 600 mg of Ibuprofen 3 times per day  for the last few months and it has kept the pain at bay. I have refused to take anything from the opium family so far as I am still working a full time job and drive. The Nurse had warned me not to drive if I took stronger prescription drugs.

Is there any medication that is milder on the bodies organs that are effective?

I am also struggling with a high creatinine level that started in Sept @ 3.3 after 6 rounds of bio-chemo but has trended down to 1.7 last week.

I am know in my 2nd dose of ipi.

Any suggestions would be appreciated.

Rocky (Stage IV Liver Mets)

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Amy Busby's picture
Replies 6
Last reply 1/24/2011 - 10:20pm

I have no idea what I should go after for my next line of treatment.  I don't seem to be having a response to the ipi.  I am still on the trial for the 10 weeks off period, but my onc and I agreed that I should be looking at alternatives since I'll probably be booted at that time for greater then 25% progression.  I am in alot of pain from my leg mets.  Going up and up on the meds.  Dennis thinks I really need to address that first since I am in so much pain.  But if I do radiation then it pushes me at least 4 weeks out to do any trials.  The one I'm looking at most strongly is the E7080 drug with temador, but there's only one or two spots left.  I have an appt lined up for next week to start all the papers / tests / etc.

Or I could start radiation on the left leg and possibly have hope of walking again like a normal person (wheelchair and walker bound now).

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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Tim--MRF's picture
Replies 12
Last reply 1/24/2011 - 4:16pm

Roche/Genentech/Plexxikon just announced that their BRAF inhibitor that has been so much in the news hit it's primary endpoints in a Phase III study.  They have gathered enough data to show that the drug provides both Progression-Free Survival (PFS) and Overall Survival (OS). 

The best I can tell, here is what we know about this drug:

--it is applicable only to patients who have BRAF V600 mutation, which is about half of all melanoma patients;

--of the patients who have the mutation, about 60% will respond to the drug (vs. 14% who respond to IL-2, for example); and,

--the average duration of response is about 7 months.

This is a major win for patients, but also demonstrates how much more has to be done in this field.  We need to find ways to extend the duration of response (probably through combining this drug with another drug) and also to find more options for patients who do not have the BRAF mutation.  Several early-stage trials are ongoing that address these two needs.

Here is the press release:  http://www.roche.com/media/media_releases/med-cor-2011-01-19.htm

 

Tim--MRF

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chet's picture
Replies 11
Last reply 1/24/2011 - 3:55pm

So I just got done with my first week of high dose IL-2. It was pretty rough but I managed to pull through. I did 9 bags total and wanted to get to 14 but my doctor said it was getting too toxic. She said it was not so much about the quantity but more so about my immune response. The worst part of the whole week were the rigors. The nurses would give me a shot of demerol right when I was starting to feel it coming on but it made me super nauseous to where I vomited a few times but they gave me a shot of phenergan right after to combat that. The third night was the worst for me. My allergies made it difficult for me to breathe that night so they had to give me oxygen. I don't really remember much from that night but the nurse told me I had a heart rate of 190 that night which was like me running a marathon. I'm at home recouping and I go back in on Feb. 7 for my next cycle. I'm not experiencing rashes like a lot of others but I'm peeling a lot along my ears and on my neck. My lips are super cracked and feel gross. I didn't sleep a wink last night. I heard that the IL-2 causes insomnia. Any truth to that? Anyway, how long until my skin goes back to normal? I don't like feeling crusty lol.

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

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Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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