Thank you Todd for making this video....it is greatly appreciated and has provided a wealth of knowledge as I am scheduled to be infused with Gazyva on July 29, 2020 at DUKE...and was scared out my mind...until I watched this video...it has been a GREAT help to me and now my mind has been put to ease, with knowing and seeing what to expect. .#THANK #YOU
Moshi, I was pretty stressed too. My advice is to tell the nurses if you feel ANYTHING at all out of the normal. They know what to do and will get you through it. Of course, you may be one of the lucky ones that doesn't have an infusion reaction. I hope it goes well for you and that you have no side effects. I had nasty hiccups for about 6 hours the night of my first infusion, but that is quite unusual. I think it was a reaction to the steroid they gave me. I had ZERO issues after the first infusion. DO be prepared for a LONG day on day one. I drove myself to and from all my infusions.
We are so very glad your infusion reaction was brought under control quickly and that you were able to continue the rest of the infusion. We hope all successive treatments go well!!
I am glad you found the video informative. I had my treatment almost 6 years ago and the CLL is just starting to come back. Since the median progression free survival (to to recurrence) for this treatment is only about two and a half years I think I am doing fine.
I'm going into the VA Hospital in Iowa City for my first infusion. Thank you for your very thoughtful help and insightfullness. I'll post after its over and I home. Thank you again. :o)
You are very welcome. I hope it goes well for you. Just remember to tell the nurses immediately if you feel out of the ordinary in any way. Infusion reactions happen fast. Good Luck!
@@todddunn945 Yes Todd, it did happen, chest pain; they stopped the procedure and had to keep me over night, at home now, feeling just fine. Again, thank you Todd for your videos - they helped a lot. J
Thank you for this video. Did you have any side effects after the infusions? My husband will start his treatment. Anything we need to prepare for in terms of his care, mobility, etc?
The only issue I had during my full treatment was the infusion reaction during the first infusion. I drove myself home after all of my infusions. After that everything went fine. My biggest issue was boredom during the infusions. I actually fell asleep during the last few infusions.
Hello Todd, thank you very much for your very explanatory video, I hope you are currently well. I wanted to tell you that I am a pharmaceutical chemistry student at a university in Colombia and I would love to ask you a question about your experience with Obinutuzumab. I hope you can read this and that we can communicate. My best wishes for you
I am glad you found the video informative. I posted a video about each of my infusions over a six month period. I would be happy to answer any questions you have. Simply post them here as comments and I will answer, normally within a few hours.
This is great! Thank you so much, Todd! I'm about to be hospitalized for the first infusion. My CLL became very aggressive after a year of watch and wait. Frankly, I'm terrified (I have a medical phobia), and am considering not receiving treatment at all. I don't know if I can tolerate 6 mos of being poked with needles and obinutuzumab, or 6 mos of venetoclax, just to relapse a few years later. My risk factors are fairly high and I'm a Stage II, so my prognosis is poor. I'm sorry to hear your CLL has recurred. Please take care, keep us updated, and know you really helped me today!! (I'm going to watch the rest of your vids now.)
@@prettygirlzful Obinutuzumab is very easy to tolerate. My advice to you is to tell the nurses immediately if you feel out of the ordinary in any way. They know what to do and will get you through it. My only other advice is to take something to listen to with you to the infusion. It gets really boring sitting in that chair for hours and hours. I took a book the first time, but couldn't read easily because of the infusion line in my arm. If you watch my other treatment videos, you will see that I had zero issues with the other infusions. I am now a bit over six years past my treatment and although my CLL is tarting to come back my lymphocyte count is still quite low at only 8.64 back in February and it actually dropped slightly from the test 6 months before. My oncologist was pleased and changed me to seeing him once a year. I hope your treatment goes really well.
Good that you have pretty nurses there lol to be quick lol As an older one might be a bit slow lol And yes lucky you are lying down for your needles lol lol I have have hundreds of them lol At least your smiling that is the most important thing for healing mate Take care all the best get well soon Crouch
I've got a nasty habit of passing out with needles/IV's. At least when you're lying down there isn't to far to fall :) Enjoy the food at the hospital :)
No I had only Gazyva. The Venclexta+Gazyva combination was still in trials when I was treated. I feel fine. All of my blood counts are still in the normal range 4 years and two months after the end of treatment. Thanks for asking.
@@todddunn945 Thanks for your reply! It is reassuring to learn that this therapy with Gazyva is working to kill off CLL cancer cells! Especially after a previous therapy was only very marginally producing promising results! I went for the second dose today and no negative reaction. Congrats on your success.
@@mark98070 I was very fortunate to get a very deep remission. It took over three years before my lymphocyte count recovered to the low end of the normal range. Glad to hear it is working for you. If you watch my other videos on my infusions you will see that the treatment was very easy for me after the first infusion.
Are you only getting the Obinutu- zumab? Did you try something prior and relapsed? This is one of my choices with the other 2 being Ibrutinib or BR (Bendamustine with Rituxan). MY markers are Trisomy 12 unmutated and CD 38 + and ZAP -70 + I think the ibrutinib would work but I have palpitations and valve issues
DIanne, this is my first treatment. As of today I have had two full infusions of obinutuzumab. I also took a dose of the oral chemo drug chlorambucil right after my first obinutuzumab infusion. I have not taken any more chlorambucil. Based on clinical trial results the likely hood of getting a good response would be in the order Ibrutinib, BR and then obinutuzumab. Duration of response (progression free survival) would also likely be the same. As far as side effects go, the severity of side effects would likely decrease in the order BR, Ibrutinib obinutuzumab - in other words you would get the least side effects with obinutuzumab. I was very lucky and have had an essentially complete response with the obinutuzumab. However, not everyone get as quick and deep a response as I have had. Personally I would be wary of the Ibrutinib if I had your heart issues.
Peter, the best advice I can give you is to tell the nurses if you feel ANYTHING unusual. They know what to do and will get you through it. Of course, a fair number of people don't have any sort of reaction and the worst part of the first infusion is boredom. If I was going to do it again, I would bring an audio book because holding a book is easy, but turning pages is rough since moving the arm with the IV often sets off an alarm on the infusion system, which is annoying. Be prepared to be there for a while. Although my wife came along to drive if needed, I did drive myself home after all my infusions. I made videos of all of my infusions and only the first one had any "events".
Thank you Todd for making this video....it is greatly appreciated and has provided a wealth of knowledge as I am scheduled to be infused with Gazyva on July 29, 2020 at DUKE...and was scared out my mind...until I watched this video...it has been a GREAT help to me and now my mind has been put to ease, with knowing and seeing what to expect. .#THANK #YOU
Moshi, I was pretty stressed too. My advice is to tell the nurses if you feel ANYTHING at all out of the normal. They know what to do and will get you through it. Of course, you may be one of the lucky ones that doesn't have an infusion reaction. I hope it goes well for you and that you have no side effects. I had nasty hiccups for about 6 hours the night of my first infusion, but that is quite unusual. I think it was a reaction to the steroid they gave me. I had ZERO issues after the first infusion. DO be prepared for a LONG day on day one. I drove myself to and from all my infusions.
We are so very glad your infusion reaction was brought under control quickly and that you were able to continue the rest of the infusion. We hope all successive treatments go well!!
Todd thank you for making this video.I hope your doing good.
I am glad you found the video informative. I had my treatment almost 6 years ago and the CLL is just starting to come back. Since the median progression free survival (to to recurrence) for this treatment is only about two and a half years I think I am doing fine.
sure did give me a idea of what you have to deal with. good luck tomorrow!
I'm going into the VA Hospital in Iowa City for my first infusion. Thank you for your very thoughtful help and insightfullness. I'll post after its over and I home. Thank you again. :o)
You are very welcome. I hope it goes well for you. Just remember to tell the nurses immediately if you feel out of the ordinary in any way. Infusion reactions happen fast. Good Luck!
@@todddunn945 Yes Todd, it did happen, chest pain; they stopped the procedure and had to keep me over night, at home now, feeling just fine. Again, thank you Todd for your videos - they helped a lot. J
@@josephstanski5180 sorry to hear that. Are you getting the second infusion?
thank you so much for your video
I am glad you found it useful.
That was a scary start😳
I think it was more scary for others than for me. I just sort of faded out, ten came back.
Thanks!
My pleasure.
Thank you for this video. Did you have any side effects after the infusions? My husband will start his treatment. Anything we need to prepare for in terms of his care, mobility, etc?
The only issue I had during my full treatment was the infusion reaction during the first infusion. I drove myself home after all of my infusions. After that everything went fine. My biggest issue was boredom during the infusions. I actually fell asleep during the last few infusions.
Hello Todd, thank you very much for your very explanatory video, I hope you are currently well. I wanted to tell you that I am a pharmaceutical chemistry student at a university in Colombia and I would love to ask you a question about your experience with Obinutuzumab. I hope you can read this and that we can communicate. My best wishes for you
I am glad you found the video informative. I posted a video about each of my infusions over a six month period. I would be happy to answer any questions you have. Simply post them here as comments and I will answer, normally within a few hours.
This is great! Thank you so much, Todd! I'm about to be hospitalized for the first infusion. My CLL became very aggressive after a year of watch and wait. Frankly, I'm terrified (I have a medical phobia), and am considering not receiving treatment at all. I don't know if I can tolerate 6 mos of being poked with needles and obinutuzumab, or 6 mos of venetoclax, just to relapse a few years later. My risk factors are fairly high and I'm a Stage II, so my prognosis is poor. I'm sorry to hear your CLL has recurred. Please take care, keep us updated, and know you really helped me today!! (I'm going to watch the rest of your vids now.)
@@prettygirlzful Obinutuzumab is very easy to tolerate. My advice to you is to tell the nurses immediately if you feel out of the ordinary in any way. They know what to do and will get you through it. My only other advice is to take something to listen to with you to the infusion. It gets really boring sitting in that chair for hours and hours. I took a book the first time, but couldn't read easily because of the infusion line in my arm. If you watch my other treatment videos, you will see that I had zero issues with the other infusions. I am now a bit over six years past my treatment and although my CLL is tarting to come back my lymphocyte count is still quite low at only 8.64 back in February and it actually dropped slightly from the test 6 months before. My oncologist was pleased and changed me to seeing him once a year. I hope your treatment goes really well.
hope you doing well!
Good that you have pretty nurses there lol to be quick lol
As an older one might be a bit slow lol
And yes lucky you are lying down for your needles lol lol
I have have hundreds of them lol
At least your smiling that is the most important thing for healing mate
Take care all the best get well soon
Crouch
I've got a nasty habit of passing out with needles/IV's. At least when you're lying down there isn't to far to fall :) Enjoy the food at the hospital :)
Actually the food was pretty good. I had a nice bowl of soup and a turkey sandwich.
Did you take Venclexta in combination with the Gazyva? How are you this many
years later? I had the same reaction you did.
No I had only Gazyva. The Venclexta+Gazyva combination was still in trials when I was treated. I feel fine. All of my blood counts are still in the normal range 4 years and two months after the end of treatment. Thanks for asking.
@@todddunn945 Thanks for your reply! It is reassuring to learn that this therapy with Gazyva is working to kill off CLL cancer cells! Especially after a previous therapy was only very marginally producing promising results! I went for the second dose today and no negative reaction. Congrats on your success.
@@mark98070 I was very fortunate to get a very deep remission. It took over three years before my lymphocyte count recovered to the low end of the normal range. Glad to hear it is working for you. If you watch my other videos on my infusions you will see that the treatment was very easy for me after the first infusion.
Are you only getting the Obinutu-
zumab? Did you try something prior and relapsed? This is one of my choices with the other 2 being Ibrutinib or BR (Bendamustine with Rituxan). MY markers are Trisomy 12 unmutated and CD 38 + and ZAP -70 + I think the ibrutinib would work but I have palpitations and valve issues
DIanne, this is my first treatment. As of today I have had two full infusions of obinutuzumab. I also took a dose of the oral chemo drug chlorambucil right after my first obinutuzumab infusion. I have not taken any more chlorambucil. Based on clinical trial results the likely hood of getting a good response would be in the order Ibrutinib, BR and then obinutuzumab. Duration of response (progression free survival) would also likely be the same. As far as side effects go, the severity of side effects would likely decrease in the order BR, Ibrutinib obinutuzumab - in other words you would get the least side effects with obinutuzumab.
I was very lucky and have had an essentially complete response with the obinutuzumab. However, not everyone get as quick and deep a response as I have had. Personally I would be wary of the Ibrutinib if I had your heart issues.
I am due to have this after 4th Jan and am dreading it but I don't have much choice since my spleen is enlarged and figures getting worse.
Peter, the best advice I can give you is to tell the nurses if you feel ANYTHING unusual. They know what to do and will get you through it. Of course, a fair number of people don't have any sort of reaction and the worst part of the first infusion is boredom. If I was going to do it again, I would bring an audio book because holding a book is easy, but turning pages is rough since moving the arm with the IV often sets off an alarm on the infusion system, which is annoying. Be prepared to be there for a while. Although my wife came along to drive if needed, I did drive myself home after all my infusions.
I made videos of all of my infusions and only the first one had any "events".
@@todddunn945 Thanks for replying so quickly.
@@peterclark8248 No problem Peter.