› Forums › General Melanoma Community › Off Zelboraf for a few weeks
- This topic has 21 replies, 5 voices, and was last updated 10 years, 9 months ago by BrianP.
- Post
-
- February 13, 2014 at 3:11 pm
I had a pet scan yesterday and all was ok. After being on Z for 27 months I will be off it for 2 weeks due to that Q-T cardiac wave……getting way to far part. We will evaluate in 2 weeks and see what is next. I am thinking if the Q-T wave gets better …maybe a lower dose of the Zelboraf. If not we will proceed from there I have been very fortunate with the Zelboraf getting rid of the mel in my pancreas and other areas. So we will see what the future brings. Thank goodness I had cardiograms every month.. Best wishes.
- Replies
-
-
- February 13, 2014 at 8:32 pm
Your PET scan was "all OK"? That's wonderful news, Mary! Good for you!
A lot of people go off Zelboraf for a few weeks to allow side effects to calm down. After all this time, it probably makes you nervous to stop, but you will probably be fine. Have you considered switching to Tafinlar + Mekinist? I know that, in general, the combo usually has fewer side effects than does Zelboraf but I don't know about heart-related side effects specifically. This is something that you might want to discuss with your oncologist.
Meanwhile, congratulations on your wonderful success! You go, girl!
-
- February 13, 2014 at 8:32 pm
Your PET scan was "all OK"? That's wonderful news, Mary! Good for you!
A lot of people go off Zelboraf for a few weeks to allow side effects to calm down. After all this time, it probably makes you nervous to stop, but you will probably be fine. Have you considered switching to Tafinlar + Mekinist? I know that, in general, the combo usually has fewer side effects than does Zelboraf but I don't know about heart-related side effects specifically. This is something that you might want to discuss with your oncologist.
Meanwhile, congratulations on your wonderful success! You go, girl!
-
- February 13, 2014 at 8:32 pm
Your PET scan was "all OK"? That's wonderful news, Mary! Good for you!
A lot of people go off Zelboraf for a few weeks to allow side effects to calm down. After all this time, it probably makes you nervous to stop, but you will probably be fine. Have you considered switching to Tafinlar + Mekinist? I know that, in general, the combo usually has fewer side effects than does Zelboraf but I don't know about heart-related side effects specifically. This is something that you might want to discuss with your oncologist.
Meanwhile, congratulations on your wonderful success! You go, girl!
-
- February 13, 2014 at 11:15 pm
Thank you for your encouragement. I will keep the Tafinlar, Mekinist combo in mind when I go back in 2 weeks. The prolongation of the Q-T waves was just short of 500. That means I must get that situation under control or get on RX. to take care of it. I am hoping the 2 week vacation will take care of it. You did hit " the nail on the head." It makes me very nervous to stop the Zelboraf. I am concerned the mel will return to my pancreas with vengeance! It disappeared 27 months ago along with other lesions on my liver and behind the knee. I was first diagnosed with mel in 1988. I spent many years in wonderful ignorance. Then it visited my lung…surg. took care of that and i went on GMCSF. (can't believe I have actually forgotten those initials) on the injections for 2 years…then i got breathing problems from the medication. the increased white cells' played' with my lungs. I have been very fortunate..side effects, side effects……including diarrhea for about 27 months,,better with the help of Lomotil. wow, I really did give you TMI…..thanks for the vent. My best to you and your family.
-
- February 14, 2014 at 4:33 pm
Thank you, Karen…I also send you goodness and strength for what you are going through. The new normal is a very strange thing. We share a few things in common, one of which is the breast cancer. Now, the Yankees are a different story. LOL, A hug to you my sister.
-
- February 14, 2014 at 4:33 pm
Thank you, Karen…I also send you goodness and strength for what you are going through. The new normal is a very strange thing. We share a few things in common, one of which is the breast cancer. Now, the Yankees are a different story. LOL, A hug to you my sister.
-
- February 14, 2014 at 4:33 pm
Thank you, Karen…I also send you goodness and strength for what you are going through. The new normal is a very strange thing. We share a few things in common, one of which is the breast cancer. Now, the Yankees are a different story. LOL, A hug to you my sister.
-
- February 13, 2014 at 11:15 pm
Thank you for your encouragement. I will keep the Tafinlar, Mekinist combo in mind when I go back in 2 weeks. The prolongation of the Q-T waves was just short of 500. That means I must get that situation under control or get on RX. to take care of it. I am hoping the 2 week vacation will take care of it. You did hit " the nail on the head." It makes me very nervous to stop the Zelboraf. I am concerned the mel will return to my pancreas with vengeance! It disappeared 27 months ago along with other lesions on my liver and behind the knee. I was first diagnosed with mel in 1988. I spent many years in wonderful ignorance. Then it visited my lung…surg. took care of that and i went on GMCSF. (can't believe I have actually forgotten those initials) on the injections for 2 years…then i got breathing problems from the medication. the increased white cells' played' with my lungs. I have been very fortunate..side effects, side effects……including diarrhea for about 27 months,,better with the help of Lomotil. wow, I really did give you TMI…..thanks for the vent. My best to you and your family.
-
- February 13, 2014 at 11:15 pm
Thank you for your encouragement. I will keep the Tafinlar, Mekinist combo in mind when I go back in 2 weeks. The prolongation of the Q-T waves was just short of 500. That means I must get that situation under control or get on RX. to take care of it. I am hoping the 2 week vacation will take care of it. You did hit " the nail on the head." It makes me very nervous to stop the Zelboraf. I am concerned the mel will return to my pancreas with vengeance! It disappeared 27 months ago along with other lesions on my liver and behind the knee. I was first diagnosed with mel in 1988. I spent many years in wonderful ignorance. Then it visited my lung…surg. took care of that and i went on GMCSF. (can't believe I have actually forgotten those initials) on the injections for 2 years…then i got breathing problems from the medication. the increased white cells' played' with my lungs. I have been very fortunate..side effects, side effects……including diarrhea for about 27 months,,better with the help of Lomotil. wow, I really did give you TMI…..thanks for the vent. My best to you and your family.
-
- February 16, 2014 at 1:10 am
Mary, I read a while back about a trial where they were pausing the BRAF inhibitor on a regular bails to see if the stop-wait-start cycling would actually increase the length of time that the inhibators would continue be be effective on the average. This was one to two years ago. My impression is that it was working, but I have not seen any final report.The thought was that by pausing the administration the disease would stop on developing a work around and then when it relaxed, get hit again.
-
- February 16, 2014 at 1:10 am
Mary, I read a while back about a trial where they were pausing the BRAF inhibitor on a regular bails to see if the stop-wait-start cycling would actually increase the length of time that the inhibators would continue be be effective on the average. This was one to two years ago. My impression is that it was working, but I have not seen any final report.The thought was that by pausing the administration the disease would stop on developing a work around and then when it relaxed, get hit again.
-
- February 16, 2014 at 7:06 pm
Hi Jerry, I seem to remember that also. Something for me to recall when I get those "ebee gebees" about recurrence while I am off the Z. I will also mention it to the Dr. when I return for the follow up. thank you for reminding me.
-
- February 16, 2014 at 7:06 pm
Hi Jerry, I seem to remember that also. Something for me to recall when I get those "ebee gebees" about recurrence while I am off the Z. I will also mention it to the Dr. when I return for the follow up. thank you for reminding me.
-
- February 16, 2014 at 7:06 pm
Hi Jerry, I seem to remember that also. Something for me to recall when I get those "ebee gebees" about recurrence while I am off the Z. I will also mention it to the Dr. when I return for the follow up. thank you for reminding me.
-
- February 16, 2014 at 1:10 am
Mary, I read a while back about a trial where they were pausing the BRAF inhibitor on a regular bails to see if the stop-wait-start cycling would actually increase the length of time that the inhibators would continue be be effective on the average. This was one to two years ago. My impression is that it was working, but I have not seen any final report.The thought was that by pausing the administration the disease would stop on developing a work around and then when it relaxed, get hit again.
-
- You must be logged in to reply to this topic.