› Forums › General Melanoma Community › Zel/ Ipi combo anybody?
- This topic has 12 replies, 3 voices, and was last updated 13 years, 2 months ago by
Tina D.
- Post
-
- November 15, 2012 at 5:27 pm
Long story short – 7 weeks went ago off Zelboraf while still responding, and had only tiny tumor in my heart, and brain and rest of body was all clear. Since then diagnosed w 2 brain mets, 4mm new and 6mm that had been supposedly destroyed by Zel, but same tumor regret. Had SRS last week for those.Finished 3rd Round Ipi Monday, then put back on Zel, Wednesday due to regrowth of cardiac met.
Any advice on what to expect side effect wise w these 2 at the same time? Had loads of Zel side effects the first time around incl grade 4 rash.
Thanks.
Long story short – 7 weeks went ago off Zelboraf while still responding, and had only tiny tumor in my heart, and brain and rest of body was all clear. Since then diagnosed w 2 brain mets, 4mm new and 6mm that had been supposedly destroyed by Zel, but same tumor regret. Had SRS last week for those.
Finished 3rd Round Ipi Monday, then put back on Zel, Wednesday due to regrowth of cardiac met.
Any advice on what to expect side effect wise w these 2 at the same time? Had loads of Zel side effects the first time around incl grade 4 rash.
Thanks.
- Replies
-
-
- November 15, 2012 at 9:27 pm
I'm so sorry that you are having to go through all this! It's just not fair that you have such a bad reaction to Zelboraf. Just not fair! I have read here (as you probably have, too) that many people have fewer side effects from Zelboarf after a "vacation". I pray that that will be your experience, too.
As for Zelboraf + Ipi? I think you are one of the trailblazers here. Both drugs are so new that few doctors or patients have any experience with even one of them, much less both together. I will keep you in my prayers. And please do let us know how this combo works out for you. It actually sounds like a clever idea.
-
- November 15, 2012 at 9:27 pm
I'm so sorry that you are having to go through all this! It's just not fair that you have such a bad reaction to Zelboraf. Just not fair! I have read here (as you probably have, too) that many people have fewer side effects from Zelboarf after a "vacation". I pray that that will be your experience, too.
As for Zelboraf + Ipi? I think you are one of the trailblazers here. Both drugs are so new that few doctors or patients have any experience with even one of them, much less both together. I will keep you in my prayers. And please do let us know how this combo works out for you. It actually sounds like a clever idea.
-
- November 15, 2012 at 9:27 pm
I'm so sorry that you are having to go through all this! It's just not fair that you have such a bad reaction to Zelboraf. Just not fair! I have read here (as you probably have, too) that many people have fewer side effects from Zelboarf after a "vacation". I pray that that will be your experience, too.
As for Zelboraf + Ipi? I think you are one of the trailblazers here. Both drugs are so new that few doctors or patients have any experience with even one of them, much less both together. I will keep you in my prayers. And please do let us know how this combo works out for you. It actually sounds like a clever idea.
-
- November 17, 2012 at 12:29 am
Some of the side effects I had before my 3+ weeks off have never come back. The horribly painful feet for one! My feet have not hurt at all. The joint pain and stiffness is less than before… there were just days I could hardly move, but I have not had any that severe this time around. The nausea seems to have been partly so bad because of my gallbladder. So…. I wish you a less-side-effect-ridden return to the Z! You have sure been traveling some veru rough days. Will they start you back on the 720 dosage, or lower it due to the combination of the 2?
And… on a much less important note, my hair has started to grow back a little.
Keeping you in our prayers,
Tina
-
- November 17, 2012 at 2:56 pm
Tina,I went straight back onto 3 pills twice a day, today is day 4. So far no fever or chills, but itchy, and other same old stuff. Actually I continued on/off joint pains in different spots the entire 7 wks so I wonder if that is some kind of arthritis now. Pretty lucky w Ipi so far, just fatigued.
Had a cardiac MRI Weds and knew it was bad as my oncologist emailed by noon to tell me take restart Zel NOW. Met went from 7x11mm to 42x42x24 in 7 weeks. It had been very slow growing before. I don’t know if the Ipi made it explode – dr was certain I was still a Zel responder but it took them 4 weeks to start me on Ipi from my last scans – because of insurance problems, then they want to do the infusions only Mon or Tues. Scary.
Hate to start taking it, I just a week ago started going out without a wig or scarf and my eyebrows are really filling in. That stuff IS important.
Nice to hear from you – will pray for you as well. I can’t complain, I feel pretty good.
Amy
-
- November 18, 2012 at 12:20 am
Amy,
That is indeed frightening news to receive … The good thing is that Zelboraf tends to work so quickly, we will pray it shrinks that thing right back down … and quickly! When will they plan to scan again, or have they discussed that yet?
I am not sure if you take vit D or not, but have heard some say that it seems to help w/ the joint pain/stiffness. I find that the worse I feel, the fewer of the things I do that may help, cause I just dont have the energy for it. I took vit D faithfully while I was on the Z break, but that fell off after a week or 2 back on it, ha.
I also JUST started going w/out the wig or other coverings, and my hair is still so very very fine and pitifully thin. The young girl ( 20 y/o) that works at the salon I went to yesterday was just SO sweet! I wanted to have the whispy pieces that fly around as they please kinda trimmed so my hair looks a little intentional and not just like something that "happened", haha! She smiled and brought out the hairstyle book, pointed out a couple of styles she thought would work and with my somewhat humored approval she confidently began to go about the"transformation". The lady in the magazine, of course, had about 90 times more hair than I do, and what I do have is incredibly short ( not to mention that the little bit of hair I had left from before is a little curly and the hair that is growing in seems to be completely straight). When she got all done, she so sweetly said " well, your hair is so fine and thin…but as it grows back…." Needless to say, it looked much as it had when I walked in, but a little neater. She was so incredibly heartwarmingly sweet, though 🙂 . My eyebrows… they are also pretty interesting, about half of them half grown in,LOL!
As for you complaining, I am sure you could, and be justified in the process. My fatigue has been making me just feel like crying rather often here lately, but on occasion I have thought of all that your past few weeks have involved and I chide myself for my self-sorrow. Your attitude is inspiring.
Thank you for the prayers : )
Tina
-
- November 18, 2012 at 12:20 am
Amy,
That is indeed frightening news to receive … The good thing is that Zelboraf tends to work so quickly, we will pray it shrinks that thing right back down … and quickly! When will they plan to scan again, or have they discussed that yet?
I am not sure if you take vit D or not, but have heard some say that it seems to help w/ the joint pain/stiffness. I find that the worse I feel, the fewer of the things I do that may help, cause I just dont have the energy for it. I took vit D faithfully while I was on the Z break, but that fell off after a week or 2 back on it, ha.
I also JUST started going w/out the wig or other coverings, and my hair is still so very very fine and pitifully thin. The young girl ( 20 y/o) that works at the salon I went to yesterday was just SO sweet! I wanted to have the whispy pieces that fly around as they please kinda trimmed so my hair looks a little intentional and not just like something that "happened", haha! She smiled and brought out the hairstyle book, pointed out a couple of styles she thought would work and with my somewhat humored approval she confidently began to go about the"transformation". The lady in the magazine, of course, had about 90 times more hair than I do, and what I do have is incredibly short ( not to mention that the little bit of hair I had left from before is a little curly and the hair that is growing in seems to be completely straight). When she got all done, she so sweetly said " well, your hair is so fine and thin…but as it grows back…." Needless to say, it looked much as it had when I walked in, but a little neater. She was so incredibly heartwarmingly sweet, though 🙂 . My eyebrows… they are also pretty interesting, about half of them half grown in,LOL!
As for you complaining, I am sure you could, and be justified in the process. My fatigue has been making me just feel like crying rather often here lately, but on occasion I have thought of all that your past few weeks have involved and I chide myself for my self-sorrow. Your attitude is inspiring.
Thank you for the prayers : )
Tina
-
- November 18, 2012 at 12:20 am
Amy,
That is indeed frightening news to receive … The good thing is that Zelboraf tends to work so quickly, we will pray it shrinks that thing right back down … and quickly! When will they plan to scan again, or have they discussed that yet?
I am not sure if you take vit D or not, but have heard some say that it seems to help w/ the joint pain/stiffness. I find that the worse I feel, the fewer of the things I do that may help, cause I just dont have the energy for it. I took vit D faithfully while I was on the Z break, but that fell off after a week or 2 back on it, ha.
I also JUST started going w/out the wig or other coverings, and my hair is still so very very fine and pitifully thin. The young girl ( 20 y/o) that works at the salon I went to yesterday was just SO sweet! I wanted to have the whispy pieces that fly around as they please kinda trimmed so my hair looks a little intentional and not just like something that "happened", haha! She smiled and brought out the hairstyle book, pointed out a couple of styles she thought would work and with my somewhat humored approval she confidently began to go about the"transformation". The lady in the magazine, of course, had about 90 times more hair than I do, and what I do have is incredibly short ( not to mention that the little bit of hair I had left from before is a little curly and the hair that is growing in seems to be completely straight). When she got all done, she so sweetly said " well, your hair is so fine and thin…but as it grows back…." Needless to say, it looked much as it had when I walked in, but a little neater. She was so incredibly heartwarmingly sweet, though 🙂 . My eyebrows… they are also pretty interesting, about half of them half grown in,LOL!
As for you complaining, I am sure you could, and be justified in the process. My fatigue has been making me just feel like crying rather often here lately, but on occasion I have thought of all that your past few weeks have involved and I chide myself for my self-sorrow. Your attitude is inspiring.
Thank you for the prayers : )
Tina
-
- November 17, 2012 at 2:56 pm
Tina,I went straight back onto 3 pills twice a day, today is day 4. So far no fever or chills, but itchy, and other same old stuff. Actually I continued on/off joint pains in different spots the entire 7 wks so I wonder if that is some kind of arthritis now. Pretty lucky w Ipi so far, just fatigued.
Had a cardiac MRI Weds and knew it was bad as my oncologist emailed by noon to tell me take restart Zel NOW. Met went from 7x11mm to 42x42x24 in 7 weeks. It had been very slow growing before. I don’t know if the Ipi made it explode – dr was certain I was still a Zel responder but it took them 4 weeks to start me on Ipi from my last scans – because of insurance problems, then they want to do the infusions only Mon or Tues. Scary.
Hate to start taking it, I just a week ago started going out without a wig or scarf and my eyebrows are really filling in. That stuff IS important.
Nice to hear from you – will pray for you as well. I can’t complain, I feel pretty good.
Amy
-
- November 17, 2012 at 2:56 pm
Tina,I went straight back onto 3 pills twice a day, today is day 4. So far no fever or chills, but itchy, and other same old stuff. Actually I continued on/off joint pains in different spots the entire 7 wks so I wonder if that is some kind of arthritis now. Pretty lucky w Ipi so far, just fatigued.
Had a cardiac MRI Weds and knew it was bad as my oncologist emailed by noon to tell me take restart Zel NOW. Met went from 7x11mm to 42x42x24 in 7 weeks. It had been very slow growing before. I don’t know if the Ipi made it explode – dr was certain I was still a Zel responder but it took them 4 weeks to start me on Ipi from my last scans – because of insurance problems, then they want to do the infusions only Mon or Tues. Scary.
Hate to start taking it, I just a week ago started going out without a wig or scarf and my eyebrows are really filling in. That stuff IS important.
Nice to hear from you – will pray for you as well. I can’t complain, I feel pretty good.
Amy
-
- November 17, 2012 at 12:29 am
Some of the side effects I had before my 3+ weeks off have never come back. The horribly painful feet for one! My feet have not hurt at all. The joint pain and stiffness is less than before… there were just days I could hardly move, but I have not had any that severe this time around. The nausea seems to have been partly so bad because of my gallbladder. So…. I wish you a less-side-effect-ridden return to the Z! You have sure been traveling some veru rough days. Will they start you back on the 720 dosage, or lower it due to the combination of the 2?
And… on a much less important note, my hair has started to grow back a little.
Keeping you in our prayers,
Tina
-
- November 17, 2012 at 12:29 am
Some of the side effects I had before my 3+ weeks off have never come back. The horribly painful feet for one! My feet have not hurt at all. The joint pain and stiffness is less than before… there were just days I could hardly move, but I have not had any that severe this time around. The nausea seems to have been partly so bad because of my gallbladder. So…. I wish you a less-side-effect-ridden return to the Z! You have sure been traveling some veru rough days. Will they start you back on the 720 dosage, or lower it due to the combination of the 2?
And… on a much less important note, my hair has started to grow back a little.
Keeping you in our prayers,
Tina
-
- You must be logged in to reply to this topic.