Zelboraf, the good and not so good news

This topic has 30 replies, 8 voices, and was last updated 11 years, 6 months ago by Richard_K.

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- October 25, 2012 at 12:28 pm
- Quote
Richard_K
Participant
The good news – Yesterday I got the results from my last scans. Everything is stable, no change, and I’m thrilled to have completed 32 months on Zelboraf.

The not so good news – For the second time in a row, my bilirubin is high and I am on another one week holiday. Assuming the bilirubin returns to normal with a retest next week I will restart Zelboraf but probably at 720mg twice per day.

I’m looking forward to breaking that 3 year mark and I hope bilirubin cooperates.

Dick

The good news – Yesterday I got the results from my last scans. Everything is stable, no change, and I’m thrilled to have completed 32 months on Zelboraf.

The not so good news – For the second time in a row, my bilirubin is high and I am on another one week holiday. Assuming the bilirubin returns to normal with a retest next week I will restart Zelboraf but probably at 720mg twice per day.

I’m looking forward to breaking that 3 year mark and I hope bilirubin cooperates.

Dick

Viewing 26 reply threads

Replies

- - October 25, 2012 at 5:44 pm
  - Quote
  jag
  Participant
  That’s great to hear Dick. I’ll say a prayer for your 36 mos and for your bilirubin to go down.
- - October 25, 2012 at 5:44 pm
  - Quote
  jag
  Participant
  That’s great to hear Dick. I’ll say a prayer for your 36 mos and for your bilirubin to go down.
- - October 25, 2012 at 5:44 pm
  - Quote
  jag
  Participant
  That’s great to hear Dick. I’ll say a prayer for your 36 mos and for your bilirubin to go down.
- - October 25, 2012 at 6:30 pm
  - Quote
  awillett1991
  Participant
  Dick,
  
  I heard again and again from my oncologist that he believes there is no difference between 8 pills/day and 6 pills/day as far as effectiveness. I was having so much trouble with side effects, he also shared he has a patient taking 6 pills one week on/one week off and she’s doing great. He’s been very involved with the trials for years and knows his stuff. This is just a bump in the road. I always appreciate your updates.
  
  Amy
- - October 25, 2012 at 6:30 pm
  - Quote
  awillett1991
  Participant
  Dick,
  
  I heard again and again from my oncologist that he believes there is no difference between 8 pills/day and 6 pills/day as far as effectiveness. I was having so much trouble with side effects, he also shared he has a patient taking 6 pills one week on/one week off and she’s doing great. He’s been very involved with the trials for years and knows his stuff. This is just a bump in the road. I always appreciate your updates.
  
  Amy
- - October 25, 2012 at 6:30 pm
  - Quote
  awillett1991
  Participant
  Dick,
  
  I heard again and again from my oncologist that he believes there is no difference between 8 pills/day and 6 pills/day as far as effectiveness. I was having so much trouble with side effects, he also shared he has a patient taking 6 pills one week on/one week off and she’s doing great. He’s been very involved with the trials for years and knows his stuff. This is just a bump in the road. I always appreciate your updates.
  
  Amy
- - October 25, 2012 at 6:53 pm
  - Quote
  KMT2003
  Participant
  Wow Dick, 32 months on Z is very encouraging for me to hear! I am so glad that it has been working so well for you for a great length of time. I just recently started taking it myself. Today is day 8 for me and so far I haven’t really experienced any side effects yet… When did you first experience any side effects? I am feeling pretty good after a hard few months of testing and set backs but I am hoping to headed in the right direction now. Your story has given me great hope! Thanks for sharing your success,,
  
  Staying positive as we fight the beast…
  Kelly
- - October 25, 2012 at 6:53 pm
  - Quote
  KMT2003
  Participant
  Wow Dick, 32 months on Z is very encouraging for me to hear! I am so glad that it has been working so well for you for a great length of time. I just recently started taking it myself. Today is day 8 for me and so far I haven’t really experienced any side effects yet… When did you first experience any side effects? I am feeling pretty good after a hard few months of testing and set backs but I am hoping to headed in the right direction now. Your story has given me great hope! Thanks for sharing your success,,
  
  Staying positive as we fight the beast…
  Kelly
- - October 25, 2012 at 6:53 pm
  - Quote
  KMT2003
  Participant
  Wow Dick, 32 months on Z is very encouraging for me to hear! I am so glad that it has been working so well for you for a great length of time. I just recently started taking it myself. Today is day 8 for me and so far I haven’t really experienced any side effects yet… When did you first experience any side effects? I am feeling pretty good after a hard few months of testing and set backs but I am hoping to headed in the right direction now. Your story has given me great hope! Thanks for sharing your success,,
  
  Staying positive as we fight the beast…
  Kelly
  - October 26, 2012 at 12:40 pm
    
    Quote
    Richard_K
    Participant
    
    Kelly
    
    Sorry to read of your troubles but I hope you start to get the good Zelboraf benefits quickly and the side effects are minimal. For me, I started with rash and sun sensitivity within two weeks. At about five weeks I had, body hair loss, joint pain (preexisting arthritis?), neuropathy in both feet, and warts on skin. At about five months the feet were very painful and at nine months, one of the warts turned out to be a squamous-cell carcinoma. Overall, with the exception of a two month period where walking was painful and the continued sun sensitivity, the side effects have been very tolerable. Of course the worst side effect for me now is the bilirubin increase that I hope will go away with dosage reduction. Hope this helps and again, good luck.
    
    Dick
  - October 26, 2012 at 12:40 pm
    
    Quote
    Richard_K
    Participant
    
    Kelly
    
    Sorry to read of your troubles but I hope you start to get the good Zelboraf benefits quickly and the side effects are minimal. For me, I started with rash and sun sensitivity within two weeks. At about five weeks I had, body hair loss, joint pain (preexisting arthritis?), neuropathy in both feet, and warts on skin. At about five months the feet were very painful and at nine months, one of the warts turned out to be a squamous-cell carcinoma. Overall, with the exception of a two month period where walking was painful and the continued sun sensitivity, the side effects have been very tolerable. Of course the worst side effect for me now is the bilirubin increase that I hope will go away with dosage reduction. Hope this helps and again, good luck.
    
    Dick
  - October 26, 2012 at 12:40 pm
    
    Quote
    Richard_K
    Participant
    
    Kelly
    
    Sorry to read of your troubles but I hope you start to get the good Zelboraf benefits quickly and the side effects are minimal. For me, I started with rash and sun sensitivity within two weeks. At about five weeks I had, body hair loss, joint pain (preexisting arthritis?), neuropathy in both feet, and warts on skin. At about five months the feet were very painful and at nine months, one of the warts turned out to be a squamous-cell carcinoma. Overall, with the exception of a two month period where walking was painful and the continued sun sensitivity, the side effects have been very tolerable. Of course the worst side effect for me now is the bilirubin increase that I hope will go away with dosage reduction. Hope this helps and again, good luck.
    
    Dick
- - October 25, 2012 at 8:49 pm
  - Quote
  aldakota22
  Participant
  Post is mostly positive.Only a small glitch with the bilirubin issue.Praying that after the week holiday from"Z" that it contiues to kick melanomas butt.You have a lot more awards diinners to go to.We fellow "Z" users are inspired by your success.Beat the Beast.. Al
- - October 25, 2012 at 8:49 pm
  - Quote
  aldakota22
  Participant
  Post is mostly positive.Only a small glitch with the bilirubin issue.Praying that after the week holiday from"Z" that it contiues to kick melanomas butt.You have a lot more awards diinners to go to.We fellow "Z" users are inspired by your success.Beat the Beast.. Al
- - October 25, 2012 at 8:49 pm
  - Quote
  aldakota22
  Participant
  Post is mostly positive.Only a small glitch with the bilirubin issue.Praying that after the week holiday from"Z" that it contiues to kick melanomas butt.You have a lot more awards diinners to go to.We fellow "Z" users are inspired by your success.Beat the Beast.. Al
- - October 25, 2012 at 11:54 pm
  - Quote
  Tina D
  Participant
  So glad to hear your great scan reports once again.
  
  And, I agree that the bili will just be a small bump in the road. I do know that I had to reduce dosage after 1 wk to the 720, but first scans showed 100% response. You are such a great encouragement to all of us here.
  
  Tina
- - October 25, 2012 at 11:54 pm
  - Quote
  Tina D
  Participant
  So glad to hear your great scan reports once again.
  
  And, I agree that the bili will just be a small bump in the road. I do know that I had to reduce dosage after 1 wk to the 720, but first scans showed 100% response. You are such a great encouragement to all of us here.
  
  Tina
- - October 25, 2012 at 11:54 pm
  - Quote
  Tina D
  Participant
  So glad to hear your great scan reports once again.
  
  And, I agree that the bili will just be a small bump in the road. I do know that I had to reduce dosage after 1 wk to the 720, but first scans showed 100% response. You are such a great encouragement to all of us here.
  
  Tina
- - October 26, 2012 at 1:12 am
  - Quote
  H555
  Participant
  Congratulations Dick. Your success on Z is a source of hope for me. My oncologist has said there’s no real difference between 6 or 8 pills a day. I’ve been on 6 a day since month 2 and am down to one nodule smaller than 10mm in my left lung. My presenting situation was much like your when I was diagnosed as hitting stage 4.
- - October 26, 2012 at 1:12 am
  - Quote
  H555
  Participant
  Congratulations Dick. Your success on Z is a source of hope for me. My oncologist has said there’s no real difference between 6 or 8 pills a day. I’ve been on 6 a day since month 2 and am down to one nodule smaller than 10mm in my left lung. My presenting situation was much like your when I was diagnosed as hitting stage 4.
- - October 26, 2012 at 1:12 am
  - Quote
  H555
  Participant
  Congratulations Dick. Your success on Z is a source of hope for me. My oncologist has said there’s no real difference between 6 or 8 pills a day. I’ve been on 6 a day since month 2 and am down to one nodule smaller than 10mm in my left lung. My presenting situation was much like your when I was diagnosed as hitting stage 4.
- - October 26, 2012 at 12:41 pm
  - Quote
  Richard_K
  Participant
  Amy, Tina, Ron
  
  Thanks for the first hand information about being on 720mg dosage. While I have believed that to be true, it is always so nice to hear firsthand experience.
  
  Dick
- - October 26, 2012 at 12:41 pm
  - Quote
  Richard_K
  Participant
  Amy, Tina, Ron
  
  Thanks for the first hand information about being on 720mg dosage. While I have believed that to be true, it is always so nice to hear firsthand experience.
  
  Dick
- - October 26, 2012 at 12:41 pm
  - Quote
  Richard_K
  Participant
  Amy, Tina, Ron
  
  Thanks for the first hand information about being on 720mg dosage. While I have believed that to be true, it is always so nice to hear firsthand experience.
  
  Dick
- - October 29, 2012 at 11:42 pm
  - Quote
  kellygrl
  Participant
  My husband has also been on 720mg since his bilirubin went threw the roof!! I think he was almost 2 mos on full dose, then had to come off almost 2 wks and still had an MRI that showed reduction of tumors. Not as drastic as the first MRI, but still reduction in all tumors. He wants to go back on max dose to get rid of the tumors asap!! I told him slow & steady wins the race! 🙂 He is feeling good, let's just go with it. Next scan in a few mos.
  
  You are such an inspiration Dick! Think about you often. Best of luck with your bilirubin. 🙂
  
  Kelly
- - October 29, 2012 at 11:42 pm
  - Quote
  kellygrl
  Participant
  My husband has also been on 720mg since his bilirubin went threw the roof!! I think he was almost 2 mos on full dose, then had to come off almost 2 wks and still had an MRI that showed reduction of tumors. Not as drastic as the first MRI, but still reduction in all tumors. He wants to go back on max dose to get rid of the tumors asap!! I told him slow & steady wins the race! 🙂 He is feeling good, let's just go with it. Next scan in a few mos.
  
  You are such an inspiration Dick! Think about you often. Best of luck with your bilirubin. 🙂
  
  Kelly
- - October 29, 2012 at 11:42 pm
  - Quote
  kellygrl
  Participant
  My husband has also been on 720mg since his bilirubin went threw the roof!! I think he was almost 2 mos on full dose, then had to come off almost 2 wks and still had an MRI that showed reduction of tumors. Not as drastic as the first MRI, but still reduction in all tumors. He wants to go back on max dose to get rid of the tumors asap!! I told him slow & steady wins the race! 🙂 He is feeling good, let's just go with it. Next scan in a few mos.
  
  You are such an inspiration Dick! Think about you often. Best of luck with your bilirubin. 🙂
  
  Kelly
- - November 6, 2012 at 7:22 pm
  - Quote
  Richard_K
  Participant
  My regularly scheduled appointment last week was cancelled because of the difficulties so much of New York was experiencing as a result of hurricane Sandy. I was able to schedule my blood work in Connecticut yesterday and today I found out the results were good and I will be able to restart Zelboraf, but at the lowered dosage of 720mg 2x per day.
  
  Sadly, all the investigational drugs were lost in the flooding at NYU and they have had to order new supplies. I’m hoping they get delivery by Thursday.
  
  Dick
- - November 6, 2012 at 7:22 pm
  - Quote
  Richard_K
  Participant
  My regularly scheduled appointment last week was cancelled because of the difficulties so much of New York was experiencing as a result of hurricane Sandy. I was able to schedule my blood work in Connecticut yesterday and today I found out the results were good and I will be able to restart Zelboraf, but at the lowered dosage of 720mg 2x per day.
  
  Sadly, all the investigational drugs were lost in the flooding at NYU and they have had to order new supplies. I’m hoping they get delivery by Thursday.
  
  Dick
- - November 6, 2012 at 7:22 pm
  - Quote
  Richard_K
  Participant
  My regularly scheduled appointment last week was cancelled because of the difficulties so much of New York was experiencing as a result of hurricane Sandy. I was able to schedule my blood work in Connecticut yesterday and today I found out the results were good and I will be able to restart Zelboraf, but at the lowered dosage of 720mg 2x per day.
  
  Sadly, all the investigational drugs were lost in the flooding at NYU and they have had to order new supplies. I’m hoping they get delivery by Thursday.
  
  Dick