› Forums › General Melanoma Community › 2nd set of scans with zelboraf
- This topic has 33 replies, 11 voices, and was last updated 13 years, 11 months ago by
FormerCaregiver.
- Post
-
- December 22, 2011 at 5:52 am
I needed to let everyone know how my second set of scans went while on zelboraf…as some of you know, i have had major side effects while on zelboraf…my dosage was reduced way under what was recommended…i also had to go off the drug 3 x…in the last two months…and while only taking 3 pills total a day i still have shrinkage and no new tumors…not as dramatic as when i was on the full dose, but no new growths and shrinkage…i have to compare numbers to give you percentages and won't get to talk with doc one on one until next week…i am not bragging about this, i just need to l
I needed to let everyone know how my second set of scans went while on zelboraf…as some of you know, i have had major side effects while on zelboraf…my dosage was reduced way under what was recommended…i also had to go off the drug 3 x…in the last two months…and while only taking 3 pills total a day i still have shrinkage and no new tumors…not as dramatic as when i was on the full dose, but no new growths and shrinkage…i have to compare numbers to give you percentages and won't get to talk with doc one on one until next week…i am not bragging about this, i just need to let people know how this drug is working…so far- especially for people like myself who have a hard time tolerating the drug and find themselves also on reduced dosages…
i am on low dose steroids to handle the side effects (fever, nodusms, arthralgia, neuropathy, nausia, rashes)…i have to say i have never freaked out so much over scans before…many of you , i know are fighting bitter battles…we lost sooo many people…i still cry about Val, but for those of you winning the fight…keep on fighting and winning and those of you who are struggling…i say a prayer and pray we will have effective drugs this coming year…hang in there…
boots
- Replies
-
-
- December 22, 2011 at 6:01 am
Sorry this has been such a rough treatment for you. And it's really too bad you have to be on steriods, hate those things. But at least you have good news. Hopefully you can keep up the progress on the low dose and the docs will come up with a better treatment for you. Is BRAF/MEK an option that has been kicked around yet?
Keep up the fight, you're making progres!
Mary
Stage 3
-
- December 22, 2011 at 6:01 am
Sorry this has been such a rough treatment for you. And it's really too bad you have to be on steriods, hate those things. But at least you have good news. Hopefully you can keep up the progress on the low dose and the docs will come up with a better treatment for you. Is BRAF/MEK an option that has been kicked around yet?
Keep up the fight, you're making progres!
Mary
Stage 3
-
- December 22, 2011 at 6:33 am
That is great news, so good to hear, the lower dose did keep working on you. My husband Mike, he is also on a reduced dose, he has been doing WBR, in his second week, finishing on Friday. He was told to keep taking the Zelboraf while doing the WBR. He has had some very red looking skin, on occasion and he feels hot and cold at different times. But nothing to sever has come so far. I did try to call the Patient Partners but we have been playing phone tag. We are so hoping that his scan show improvement he's hasn't had scans yet. Since he started Zelboraf. Praying for good news in the New Year. He has large mass in liver, lots of spots in lung, limp nodes in chest, and brain mets. The brain CyberKnife was in early August before he started the Zelboraf. The Temodar did nothing for him in August and September. So hoping the Zelboraf is doing some great work on his body even at a reduced dose!
-
- December 22, 2011 at 6:33 am
That is great news, so good to hear, the lower dose did keep working on you. My husband Mike, he is also on a reduced dose, he has been doing WBR, in his second week, finishing on Friday. He was told to keep taking the Zelboraf while doing the WBR. He has had some very red looking skin, on occasion and he feels hot and cold at different times. But nothing to sever has come so far. I did try to call the Patient Partners but we have been playing phone tag. We are so hoping that his scan show improvement he's hasn't had scans yet. Since he started Zelboraf. Praying for good news in the New Year. He has large mass in liver, lots of spots in lung, limp nodes in chest, and brain mets. The brain CyberKnife was in early August before he started the Zelboraf. The Temodar did nothing for him in August and September. So hoping the Zelboraf is doing some great work on his body even at a reduced dose!
-
- December 22, 2011 at 8:13 am
Sorry Boots that you have been so sick on this drug, but I'm really happy to hear that it's still working. My dad had his 3rd month scan on Zelboraf and liver, lung, spleen and sub tumors have all shrunk. He is on the full dose. So if the lesser dose is working on you….fantastic. Stay positive and all the best.
Nahmi from Melbourne
-
- December 22, 2011 at 8:13 am
Sorry Boots that you have been so sick on this drug, but I'm really happy to hear that it's still working. My dad had his 3rd month scan on Zelboraf and liver, lung, spleen and sub tumors have all shrunk. He is on the full dose. So if the lesser dose is working on you….fantastic. Stay positive and all the best.
Nahmi from Melbourne
-
- December 22, 2011 at 8:13 am
Sorry Boots that you have been so sick on this drug, but I'm really happy to hear that it's still working. My dad had his 3rd month scan on Zelboraf and liver, lung, spleen and sub tumors have all shrunk. He is on the full dose. So if the lesser dose is working on you….fantastic. Stay positive and all the best.
Nahmi from Melbourne
-
- December 22, 2011 at 6:33 am
That is great news, so good to hear, the lower dose did keep working on you. My husband Mike, he is also on a reduced dose, he has been doing WBR, in his second week, finishing on Friday. He was told to keep taking the Zelboraf while doing the WBR. He has had some very red looking skin, on occasion and he feels hot and cold at different times. But nothing to sever has come so far. I did try to call the Patient Partners but we have been playing phone tag. We are so hoping that his scan show improvement he's hasn't had scans yet. Since he started Zelboraf. Praying for good news in the New Year. He has large mass in liver, lots of spots in lung, limp nodes in chest, and brain mets. The brain CyberKnife was in early August before he started the Zelboraf. The Temodar did nothing for him in August and September. So hoping the Zelboraf is doing some great work on his body even at a reduced dose!
-
- December 22, 2011 at 6:01 am
Sorry this has been such a rough treatment for you. And it's really too bad you have to be on steriods, hate those things. But at least you have good news. Hopefully you can keep up the progress on the low dose and the docs will come up with a better treatment for you. Is BRAF/MEK an option that has been kicked around yet?
Keep up the fight, you're making progres!
Mary
Stage 3
-
- December 22, 2011 at 3:34 pm
Good for you boots, glad the zelboraf is working. Go ahead and brag, you deserve it!
Hope you have a Merry Christmas and Happy New Year too!
Michael
-
- December 22, 2011 at 4:40 pm
Dear Boots,
What counts is that is it still working! I am so happy for you! Now enjoy the Holidays!!!!
Vermont_Donna, stage 3a, NED
-
- December 22, 2011 at 4:40 pm
Dear Boots,
What counts is that is it still working! I am so happy for you! Now enjoy the Holidays!!!!
Vermont_Donna, stage 3a, NED
-
- December 22, 2011 at 9:20 pm
i am so grateful for steroids actually…i feel much better on them…as far as braf/mek trials…i tried to get into one, but at the time, they were not up and running in any area i could get to and i could not afford to wait due to the aggressive MM…now that i am on zelboraf, it has booted me out of the braf/mek trial…i would have to find a physician and trial and get special consent (LET ME KNOW IF I AM WRONG!)…the next promising treatment looks like anti-PD1…happy holidays…here's to all the red faced and hot flashing zelboraf users!
-
- December 22, 2011 at 9:20 pm
i am so grateful for steroids actually…i feel much better on them…as far as braf/mek trials…i tried to get into one, but at the time, they were not up and running in any area i could get to and i could not afford to wait due to the aggressive MM…now that i am on zelboraf, it has booted me out of the braf/mek trial…i would have to find a physician and trial and get special consent (LET ME KNOW IF I AM WRONG!)…the next promising treatment looks like anti-PD1…happy holidays…here's to all the red faced and hot flashing zelboraf users!
-
- December 23, 2011 at 3:57 am
I am so glad you got some good news. That is so encouraging. I am sorry you have to deal with the horrible side effects. Happy Holidays to you and may the New Year bring good things.
-
- December 23, 2011 at 3:57 am
I am so glad you got some good news. That is so encouraging. I am sorry you have to deal with the horrible side effects. Happy Holidays to you and may the New Year bring good things.
-
- December 23, 2011 at 3:57 am
I am so glad you got some good news. That is so encouraging. I am sorry you have to deal with the horrible side effects. Happy Holidays to you and may the New Year bring good things.
-
- December 22, 2011 at 9:20 pm
i am so grateful for steroids actually…i feel much better on them…as far as braf/mek trials…i tried to get into one, but at the time, they were not up and running in any area i could get to and i could not afford to wait due to the aggressive MM…now that i am on zelboraf, it has booted me out of the braf/mek trial…i would have to find a physician and trial and get special consent (LET ME KNOW IF I AM WRONG!)…the next promising treatment looks like anti-PD1…happy holidays…here's to all the red faced and hot flashing zelboraf users!
-
- December 22, 2011 at 4:40 pm
Dear Boots,
What counts is that is it still working! I am so happy for you! Now enjoy the Holidays!!!!
Vermont_Donna, stage 3a, NED
-
- December 23, 2011 at 6:06 am
Hate the bad side effects, love the good ones! Amazing differences in our bodies. Keep going in the diretion You are going in Gal. Praying for you.
-
- December 23, 2011 at 6:06 am
Hate the bad side effects, love the good ones! Amazing differences in our bodies. Keep going in the diretion You are going in Gal. Praying for you.
-
- December 23, 2011 at 6:06 am
Hate the bad side effects, love the good ones! Amazing differences in our bodies. Keep going in the diretion You are going in Gal. Praying for you.
-
- December 23, 2011 at 2:49 pm
Boots
Sorry to read about your side effects but happy to read about the results. When I calculate percentaqe change I do it on both change from the base set of scans as well as the change from last set. The more sucessful scans you have the smaller change from base will be calculated, but comparing to the last set, the numbers will be much higher. (Law of diminishing returns.)
Good Luck and wishing for continued good results.
Dick
-
- December 23, 2011 at 2:49 pm
Boots
Sorry to read about your side effects but happy to read about the results. When I calculate percentaqe change I do it on both change from the base set of scans as well as the change from last set. The more sucessful scans you have the smaller change from base will be calculated, but comparing to the last set, the numbers will be much higher. (Law of diminishing returns.)
Good Luck and wishing for continued good results.
Dick
-
- December 23, 2011 at 2:49 pm
Boots
Sorry to read about your side effects but happy to read about the results. When I calculate percentaqe change I do it on both change from the base set of scans as well as the change from last set. The more sucessful scans you have the smaller change from base will be calculated, but comparing to the last set, the numbers will be much higher. (Law of diminishing returns.)
Good Luck and wishing for continued good results.
Dick
-
- December 26, 2011 at 7:48 am
Boots, the fact that you have no new growths and some shrinkage of mets is encouraging news. I feel that this translates to a partial response and stable disease, and is a very good result considering that you are on a reduced dose of Zelboraf.
You are in my thoughts and prayers.
Take care
Frank from Australia
-
- December 26, 2011 at 7:48 am
Boots, the fact that you have no new growths and some shrinkage of mets is encouraging news. I feel that this translates to a partial response and stable disease, and is a very good result considering that you are on a reduced dose of Zelboraf.
You are in my thoughts and prayers.
Take care
Frank from Australia
-
- December 26, 2011 at 7:48 am
Boots, the fact that you have no new growths and some shrinkage of mets is encouraging news. I feel that this translates to a partial response and stable disease, and is a very good result considering that you are on a reduced dose of Zelboraf.
You are in my thoughts and prayers.
Take care
Frank from Australia
-
- You must be logged in to reply to this topic.