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Just started PLX4032 (aka RG7204 or RO5185426) & I want to find out as much as I can…..

Forums General Melanoma Community Just started PLX4032 (aka RG7204 or RO5185426) & I want to find out as much as I can…..

  • Post

    Hi there all,

    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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      sukie53
      Participant

      Hi Simmy,

      I started the Brim3 trial in October 2010 and was allocated plx.

      To answer your questions:

      I was fine for 10 days then I got a bad rash. It was like bad sunburn and spread all over my body expect my face. Along with it I got the rash on my throat, dry eyes and cystitis. The tablets were doing me so much good though that I was determined to stick it out. After about 2 weeks it started to pass and soon my skin was back to normal. Since then the side effects have been very managable, sometimes I get tired but not all the time. Sometimes I feel a little sickly but not much. My hair has thinned out loads so I bought a couple of wigs so that I look nice when I go out! I have had 2 small skin lesions removed, both were squamous cell carcinoma – this is a recognised side effect. However, other similar lesions resolved without surgical intervention. None of this bothered me too much. The rash was the worst side effect.

      I saw this drug working within a week. It was like some kind of miracle. I have peritoneal mets (one was huge at 23 cm) – my tummy was very swollen up and I had a 40 inch waist although I am a slim lady. Within a week my tummy had reduced to 31inches and I lost a pound or two every day as the tumours and fluid melted away. I had sub qs under my skin which started to go down in 3 days. My first scan (6 weeks) showed that many of my tumours had reduced by half, some had disappeared, especially the ones in my lungs and the lymph nodes in my neck and around my heart. The large tumour only reduced by a third. The second scan showed some reduction in all tumours except the big one, which stayed the same. I have to say that I was a little disappointed by this, especially after the dramatic first scan. I am due next scans in 4 weeks time. I knew it was working because of the disappearance of the sub qs, and the reduction in my tummy size. I also felt loads better, i was no longer breathless, did not need pain killers and my apetite returned.

      I am still taking the drug after 4 months. Like you say, the effects don't last for ever, but for me it was, I'm sure, a life saver. I was dying in September and I certainly ain't now! I too live for the day, it is great to be alive and feel OK. My  daughter was married recently, we had a great Christmas and are planning a holiday – thank you plx4032!

      Hope this helps Simmy – let me know if you need any more info,

      xSukie (UK)

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      sukie53
      Participant

      Hi Simmy,

      I started the Brim3 trial in October 2010 and was allocated plx.

      To answer your questions:

      I was fine for 10 days then I got a bad rash. It was like bad sunburn and spread all over my body expect my face. Along with it I got the rash on my throat, dry eyes and cystitis. The tablets were doing me so much good though that I was determined to stick it out. After about 2 weeks it started to pass and soon my skin was back to normal. Since then the side effects have been very managable, sometimes I get tired but not all the time. Sometimes I feel a little sickly but not much. My hair has thinned out loads so I bought a couple of wigs so that I look nice when I go out! I have had 2 small skin lesions removed, both were squamous cell carcinoma – this is a recognised side effect. However, other similar lesions resolved without surgical intervention. None of this bothered me too much. The rash was the worst side effect.

      I saw this drug working within a week. It was like some kind of miracle. I have peritoneal mets (one was huge at 23 cm) – my tummy was very swollen up and I had a 40 inch waist although I am a slim lady. Within a week my tummy had reduced to 31inches and I lost a pound or two every day as the tumours and fluid melted away. I had sub qs under my skin which started to go down in 3 days. My first scan (6 weeks) showed that many of my tumours had reduced by half, some had disappeared, especially the ones in my lungs and the lymph nodes in my neck and around my heart. The large tumour only reduced by a third. The second scan showed some reduction in all tumours except the big one, which stayed the same. I have to say that I was a little disappointed by this, especially after the dramatic first scan. I am due next scans in 4 weeks time. I knew it was working because of the disappearance of the sub qs, and the reduction in my tummy size. I also felt loads better, i was no longer breathless, did not need pain killers and my apetite returned.

      I am still taking the drug after 4 months. Like you say, the effects don't last for ever, but for me it was, I'm sure, a life saver. I was dying in September and I certainly ain't now! I too live for the day, it is great to be alive and feel OK. My  daughter was married recently, we had a great Christmas and are planning a holiday – thank you plx4032!

      Hope this helps Simmy – let me know if you need any more info,

      xSukie (UK)

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        glewis923
        Participant

        Dear Sukie-

        I have multiple lung "nodules"- at least 12 or more- bilatteral.  Two of these are on oposite sides of para-cardiac sac (heart enclosure) and measure 11 mm each.  The other largest one is also 11 mm. near diaphram.

        My question is this, if you don't mind me asking:  How many and how big were/are your lung tumors?  Have they completely gone away?  

        I am B-Raf positive and looking into getting the "good Stuff" somehow.  Just looking for encouragement by comparing my case with others.  I hope PLX4032 works on you forever!……and me too….

        Love All, Grady.

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        sukie53
        Participant
        Hello Grady, nice to hear from you. I don’t know the sizes of all my mets – sadly I have too many on the scans to mention them all by name! The scans have just given sizes for the biggest which are in my abdomen. However I do know that they were all under 1 cm and have resolved or are significantly reduced in size. When I go to the hospital I see another lady who has only been on plx for 6 weeks. She had lots of small pelvic nodules and all disappeared on the first scan. My guess is that it works best for small tumours, even if there are a lot of them.
        I have heard that Roche might be planning expanded access for this drug. I hope you manage to get it- there are also mek inhibitors which I believe can work if you are braf+, but I am no expert on this. Good luck and God bless. If I can help any further just let me know. I read here quite a lot but don’t post much,
        sukie.

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        sukie53
        Participant
        Hello Grady, nice to hear from you. I don’t know the sizes of all my mets – sadly I have too many on the scans to mention them all by name! The scans have just given sizes for the biggest which are in my abdomen. However I do know that they were all under 1 cm and have resolved or are significantly reduced in size. When I go to the hospital I see another lady who has only been on plx for 6 weeks. She had lots of small pelvic nodules and all disappeared on the first scan. My guess is that it works best for small tumours, even if there are a lot of them.
        I have heard that Roche might be planning expanded access for this drug. I hope you manage to get it- there are also mek inhibitors which I believe can work if you are braf+, but I am no expert on this. Good luck and God bless. If I can help any further just let me know. I read here quite a lot but don’t post much,
        sukie.

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        glewis923
        Participant

        Dear Sukie-

        I have multiple lung "nodules"- at least 12 or more- bilatteral.  Two of these are on oposite sides of para-cardiac sac (heart enclosure) and measure 11 mm each.  The other largest one is also 11 mm. near diaphram.

        My question is this, if you don't mind me asking:  How many and how big were/are your lung tumors?  Have they completely gone away?  

        I am B-Raf positive and looking into getting the "good Stuff" somehow.  Just looking for encouragement by comparing my case with others.  I hope PLX4032 works on you forever!……and me too….

        Love All, Grady.

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      Hi Simmy,

      I have been on the PLX 4032 for 7.5 months now in Switzerland.  My side effects were the worst in the beginning with very swollen feet, a visible rash all over my body, fever, extreme skin sensitivity to the sun, uveitis and arthritis at various parts of my body. 

      I am not sure if what I call arthritis is really arthritis but my muscles, ligaments and or joints become painful.  I felt like an 85 year old with bruises all over my body who couldn't dress herself.  However that lasted for just the first month.  (My first week I thought it was a walk in the park with no effects.)   8 weeks into the trial I developed severe eye sensitivity to light, it was diagnosed as uveitis and iritis which steroidal eye drops took care of. 

      Now i deal with all of the same side effects but on a very mild level.  Even in the beginning I traveled to the US for family vacation, back to Switzerland for scans and back to the US to continue holidays.  I have been  able to enjoy everything that life has offered me since being on this drug.  My tumors are in the lungs and the pleura.  I did not feel them when they were first discovered and therefore I was not able to physically know if the drug was working or not.  I had 30% reduction in the first scan at 6 weeks, then slightly more reduction at 12 weeks, stable at 21 weeks and more reduction at 30 weeks!  I am still responding, AMEN.  I get scans every 9 weeks now so there is glee and joy at after each scan and then eventually the fear creeps back in knowing that this drug has limited time for response.  BUT my doctor has told me that there will be another trial hopefully ready by this summer that will test the B-RAF AND MEK.  He believes that those of us who respond to the b-raf will be good candidates for the combo.  Buying time while science does it's wonders!

      Good luck and email me if you have any other questions. 

      (Oh yeah, my Swiss doctors would not allow me to take ibuprofen for the arthritis.  They prescribed Novelgin.  When I saw my US Dr. she didn't understand why…   The Dr. here said that it interferes with the b-raf.  I have not followed up with this point since the Novelgin works for me.)

      With peace and love,

      Shelly in Switzerland, stage IV, lung mets

       

       

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      Hi Simmy,

      I have been on the PLX 4032 for 7.5 months now in Switzerland.  My side effects were the worst in the beginning with very swollen feet, a visible rash all over my body, fever, extreme skin sensitivity to the sun, uveitis and arthritis at various parts of my body. 

      I am not sure if what I call arthritis is really arthritis but my muscles, ligaments and or joints become painful.  I felt like an 85 year old with bruises all over my body who couldn't dress herself.  However that lasted for just the first month.  (My first week I thought it was a walk in the park with no effects.)   8 weeks into the trial I developed severe eye sensitivity to light, it was diagnosed as uveitis and iritis which steroidal eye drops took care of. 

      Now i deal with all of the same side effects but on a very mild level.  Even in the beginning I traveled to the US for family vacation, back to Switzerland for scans and back to the US to continue holidays.  I have been  able to enjoy everything that life has offered me since being on this drug.  My tumors are in the lungs and the pleura.  I did not feel them when they were first discovered and therefore I was not able to physically know if the drug was working or not.  I had 30% reduction in the first scan at 6 weeks, then slightly more reduction at 12 weeks, stable at 21 weeks and more reduction at 30 weeks!  I am still responding, AMEN.  I get scans every 9 weeks now so there is glee and joy at after each scan and then eventually the fear creeps back in knowing that this drug has limited time for response.  BUT my doctor has told me that there will be another trial hopefully ready by this summer that will test the B-RAF AND MEK.  He believes that those of us who respond to the b-raf will be good candidates for the combo.  Buying time while science does it's wonders!

      Good luck and email me if you have any other questions. 

      (Oh yeah, my Swiss doctors would not allow me to take ibuprofen for the arthritis.  They prescribed Novelgin.  When I saw my US Dr. she didn't understand why…   The Dr. here said that it interferes with the b-raf.  I have not followed up with this point since the Novelgin works for me.)

      With peace and love,

      Shelly in Switzerland, stage IV, lung mets

       

       

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