› Forums › General Melanoma Community › 4 month on Zel and almost Ned !!
- This topic has 12 replies, 4 voices, and was last updated 12 years, 9 months ago by
DeniseK.
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- May 8, 2013 at 8:09 am
Last week I had the results of the CT scan I had few days before, just after four month on Zelboraf. My oncologist said that 2 lungs nodules have disappeared and one has no significant size. In my groin, where I have been 4 times on surgery, I still have "something" that is 19mm. This "thing" has not changed on my last 3 scan and he said it's probably something that has nothing to do with, otherwise it would have reacted as the other nodules. He didn't even mentioned a biopsy.
Last week I had the results of the CT scan I had few days before, just after four month on Zelboraf. My oncologist said that 2 lungs nodules have disappeared and one has no significant size. In my groin, where I have been 4 times on surgery, I still have "something" that is 19mm. This "thing" has not changed on my last 3 scan and he said it's probably something that has nothing to do with, otherwise it would have reacted as the other nodules. He didn't even mentioned a biopsy. On the other hand I suggested him to stop the treatment and start a period of on and off to avoid resistance, as I could read on few posts but he said this is not yet clinically proved. I had a seboreica in my left arm for years that has disappeared as well, I find this amazing, because I could really watch shrinking day after day. Next scan is programmed for June last week and I hope been Ned for this day. Thank God and praying every day this drug keep on working on me and to all the people who are in the same situation.
François
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- May 8, 2013 at 2:03 pm
Great news! I would say stick with whatever is working. I have been on Zel twice, the second time was on 2 weeks/ off 1 week and it failed anyway. Just enjoy your life and your friends and family. They are learning more about this drug all the time, maybe some good recommendations for changing the dosing schedule will come out of the upcoming ASCO meeting.Amy
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- May 8, 2013 at 2:03 pm
Great news! I would say stick with whatever is working. I have been on Zel twice, the second time was on 2 weeks/ off 1 week and it failed anyway. Just enjoy your life and your friends and family. They are learning more about this drug all the time, maybe some good recommendations for changing the dosing schedule will come out of the upcoming ASCO meeting.Amy
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- May 8, 2013 at 2:03 pm
Great news! I would say stick with whatever is working. I have been on Zel twice, the second time was on 2 weeks/ off 1 week and it failed anyway. Just enjoy your life and your friends and family. They are learning more about this drug all the time, maybe some good recommendations for changing the dosing schedule will come out of the upcoming ASCO meeting.Amy
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- May 8, 2013 at 9:49 pm
Great news.I myself am comming up to 20 months on "Z" May 10th.Still thanking God everyday as I am still going strong.Like you I am striving to be NED.Almost there.Will find out with next scans in late June..All the best on your next update.Beat the Beast. Al
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- May 8, 2013 at 9:49 pm
Great news.I myself am comming up to 20 months on "Z" May 10th.Still thanking God everyday as I am still going strong.Like you I am striving to be NED.Almost there.Will find out with next scans in late June..All the best on your next update.Beat the Beast. Al
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- May 8, 2013 at 9:49 pm
Great news.I myself am comming up to 20 months on "Z" May 10th.Still thanking God everyday as I am still going strong.Like you I am striving to be NED.Almost there.Will find out with next scans in late June..All the best on your next update.Beat the Beast. Al
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- May 9, 2013 at 4:46 am
Hi Francois,
I'm almost exactly in the same boat as you. I too have been on Z for about 5 months, have left arm nodule I feel all the time to check growth. In the first few weeks it was amazing to watch it shrink, my lung nodules have significantly shrunk or disappeared, total of 9, the one in my leg and chest is gone! I take 2 pills twice daily but since I reduced to that dosage I haven't noticed any difference in the arm nodule, it's still there but it could be scar tissue since a biopsy was done months ago on it. My specialist wants me to do the 4 rounds of ipi while my tumor burden is low but to still stay on Z at a lower dosage. I go in about a month to finalize that decision because now my brain tumor will be zapped SRS after the WBR I am stable for 12 weeks now which makes me eligible for clinical trials so ipi is a choice but I could get into Anti PD 1, I'm not sure what's the best route. Anyway I reduce my own dosage of Z, against my doctors wishes, but it's still working and I know my body best. I am not recommending that you reduce your own dosage! I'm a rebel of sorts, if someone says try it I usually do! LOL!! I heard that it lasts longer at a reduced dosage so I'm doing it! My doctor also said it's not approved and I'm not a mouse but if theres a chance it will last longer I'm willing to take that risk. Again I'm not saying for you to do it!! Z could work for you for years like others on here. Do you have a back up plan just in case? I'm not looking to be on meds for years I"m looking to be cured forever!! Although the Z is working I know in the back of my mind it could stop at any time. My goal all along has been to get my brain stable and I'm there!! Congrats on the shrinkage and hoping your NED next month!! All my best to you Francois!
Denise
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- May 9, 2013 at 4:46 am
Hi Francois,
I'm almost exactly in the same boat as you. I too have been on Z for about 5 months, have left arm nodule I feel all the time to check growth. In the first few weeks it was amazing to watch it shrink, my lung nodules have significantly shrunk or disappeared, total of 9, the one in my leg and chest is gone! I take 2 pills twice daily but since I reduced to that dosage I haven't noticed any difference in the arm nodule, it's still there but it could be scar tissue since a biopsy was done months ago on it. My specialist wants me to do the 4 rounds of ipi while my tumor burden is low but to still stay on Z at a lower dosage. I go in about a month to finalize that decision because now my brain tumor will be zapped SRS after the WBR I am stable for 12 weeks now which makes me eligible for clinical trials so ipi is a choice but I could get into Anti PD 1, I'm not sure what's the best route. Anyway I reduce my own dosage of Z, against my doctors wishes, but it's still working and I know my body best. I am not recommending that you reduce your own dosage! I'm a rebel of sorts, if someone says try it I usually do! LOL!! I heard that it lasts longer at a reduced dosage so I'm doing it! My doctor also said it's not approved and I'm not a mouse but if theres a chance it will last longer I'm willing to take that risk. Again I'm not saying for you to do it!! Z could work for you for years like others on here. Do you have a back up plan just in case? I'm not looking to be on meds for years I"m looking to be cured forever!! Although the Z is working I know in the back of my mind it could stop at any time. My goal all along has been to get my brain stable and I'm there!! Congrats on the shrinkage and hoping your NED next month!! All my best to you Francois!
Denise
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- May 9, 2013 at 4:46 am
Hi Francois,
I'm almost exactly in the same boat as you. I too have been on Z for about 5 months, have left arm nodule I feel all the time to check growth. In the first few weeks it was amazing to watch it shrink, my lung nodules have significantly shrunk or disappeared, total of 9, the one in my leg and chest is gone! I take 2 pills twice daily but since I reduced to that dosage I haven't noticed any difference in the arm nodule, it's still there but it could be scar tissue since a biopsy was done months ago on it. My specialist wants me to do the 4 rounds of ipi while my tumor burden is low but to still stay on Z at a lower dosage. I go in about a month to finalize that decision because now my brain tumor will be zapped SRS after the WBR I am stable for 12 weeks now which makes me eligible for clinical trials so ipi is a choice but I could get into Anti PD 1, I'm not sure what's the best route. Anyway I reduce my own dosage of Z, against my doctors wishes, but it's still working and I know my body best. I am not recommending that you reduce your own dosage! I'm a rebel of sorts, if someone says try it I usually do! LOL!! I heard that it lasts longer at a reduced dosage so I'm doing it! My doctor also said it's not approved and I'm not a mouse but if theres a chance it will last longer I'm willing to take that risk. Again I'm not saying for you to do it!! Z could work for you for years like others on here. Do you have a back up plan just in case? I'm not looking to be on meds for years I"m looking to be cured forever!! Although the Z is working I know in the back of my mind it could stop at any time. My goal all along has been to get my brain stable and I'm there!! Congrats on the shrinkage and hoping your NED next month!! All my best to you Francois!
Denise
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