I hope you are doing well after your treatment end last year! I was diagnosed at age 37, and was in the watch and wait for 32 years, thank the Lord. I am about to start treatment with gazyva and venetoclax starting 2-26-24. Thank you, for giving some idea of what to expect. Currently there is not much in way of actual people who have discussed it out there. It’s much different hearing from someone who has been through it, than hearing it from a doctor. Thanks
@@cland4140 I have definitely had ups and downs with the treatment. Initially my WBC was 410, so when I started the infusions I felt pretty bad after the treatment due to the cancer cells dying off rapidly. After the first two infusions my WBC went to 1.5. After the first 4 infusions, they were not making me as sick. But then Venetoclax was added. I didn’t have too much trouble with it until I got to 100mg, then it started making me nauseous 24/7 and quite ill. We stopped it because my neutrophils were so low. Started up 2 weeks later, only to stop again after about a week due to bad sinus infection. Restarted about 4 weeks later and next day had a serious cough and tight chest. Doctor suspected an allergic reaction and stopped it permanently. But still getting the infusions. So unfortunately the Venetoclax didn’t work for me. But I know many people have had it without any issues. I pray your husband is one of them. Hope all goes well and smoothly for his treatment. God bless!
@@cland4140 Hi, I hope your husband is doing well! My experience was a bit rocky, but was able to reduce my WBC from 405 to 4.1, so that is good. My absolute lymphocyte number is 1.0 now, which is good. I tolerated the infusions fairly well, but only completed 4 cycles. I did not do well with the Venetoclax and was only on it two weeks after the 4 week ramp up. I never got to 400mg, the highest level of the medication was 200mg. The doctor stopped it twice and each time I restarted I got very sick, so after trying to restart a couple of times we stopped it all together. He thinks maybe a milder allergic reaction. I hope your husband does well and encounters no hiccups with his treatment. I will pray that it is effective for him…be well. 😊
Courageous woman. Sending lots of love to you and your family. My dad has recently been diagnosed with CLL and your outlook and energy has really helped, thank you.
Tamsin - you continue to amaze me! You are so beautiful- inside and out. Keep shining brightly - there is so much more of your story to share. There is so much more you still have to share with the world. Thank you for the gift of YOU. 🙏💗💗🙏
Thank you for this video. Did you Tasmin 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?
Great story Tamsin, I hope you are doing well. I did the same treatment last year; since my MRD is positive I am cont. this year on Venetoclax. Are you MRD negative? Wishing you strength and all the best ❤
Your wonderful igot it had for 2 years now but going for blood s Monday as had bladder infections for 4weeks soreheads having sweats and very tired and hope they find out why I feel so I'll take care nanapolly Scotland x 🌺💐🌻🌟🏴☮️💐🌹🙏💕🥰🌟
Saw doctor good blood s the same so going to do a phone call save me traveling to see him no treatment but loss weight but I look lot better got new jeans take care got 1921sons to make dinner for and clean had my two late sons at43 Last45 9 9oz also 3 newknews hip replacement s allowed in 50 now64 no vaccines for me live life xpeace nanapolly x Scotland 👍🌌🌹💐🌞🌻☮️🙏🌺🌌🏴🌞
We’d love to hear from you: What was the treatment-decision making conversation like with you and your doctor? Advice for others?👇
I hope you are doing well after your treatment end last year!
I was diagnosed at age 37, and was in the watch and wait for 32 years, thank the Lord. I am about to start treatment with gazyva and venetoclax starting 2-26-24. Thank you, for giving some idea of what to expect. Currently there is not much in way of actual people who have discussed it out there. It’s much different hearing from someone who has been through it, than hearing it from a doctor. Thanks
How is your treatment going? My husband just started the infusions this week.
@@cland4140 I have definitely had ups and downs with the treatment. Initially my WBC was 410, so when I started the infusions I felt pretty bad after the treatment due to the cancer cells dying off rapidly. After the first two infusions my WBC went to 1.5. After the first 4 infusions, they were not making me as sick. But then Venetoclax was added. I didn’t have too much trouble with it until I got to 100mg, then it started making me nauseous 24/7 and quite ill. We stopped it because my neutrophils were so low. Started up 2 weeks later, only to stop again after about a week due to bad sinus infection. Restarted about 4 weeks later and next day had a serious cough and tight chest. Doctor suspected an allergic reaction and stopped it permanently. But still getting the infusions. So unfortunately the Venetoclax didn’t work for me. But I know many people have had it without any issues. I pray your husband is one of them. Hope all goes well and smoothly for his treatment. God bless!
@@cland4140 Hi, I hope your husband is doing well!
My experience was a bit rocky, but was able to reduce my WBC from 405 to 4.1, so that is good. My absolute lymphocyte number is 1.0 now, which is good. I tolerated the infusions fairly well, but only completed 4 cycles. I did not do well with the Venetoclax and was only on it two weeks after the 4 week ramp up. I never got to 400mg, the highest level of the medication was 200mg. The doctor stopped it twice and each time I restarted I got very sick, so after trying to restart a couple of times we stopped it all together. He thinks maybe a milder allergic reaction.
I hope your husband does well and encounters no hiccups with his treatment. I will pray that it is effective for him…be well. 😊
Courageous woman. Sending lots of love to you and your family. My dad has recently been diagnosed with CLL and your outlook and energy has really helped, thank you.
Thank you Tamsin for telling your story!
Tamsin - you continue to amaze me! You are so beautiful- inside and out. Keep shining brightly - there is so much more of your story to share. There is so much more you still have to share with the world. Thank you for the gift of YOU. 🙏💗💗🙏
Thank you for this video. Did you Tasmin 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?
Great story Tamsin, I hope you are doing well. I did the same treatment last year; since my MRD is positive I am cont. this year on Venetoclax. Are you MRD negative? Wishing you strength and all the best ❤
Your wonderful igot it had for 2 years now but going for blood s Monday as had bladder infections for 4weeks soreheads having sweats and very tired and hope they find out why I feel so I'll take care nanapolly Scotland x 🌺💐🌻🌟🏴☮️💐🌹🙏💕🥰🌟
Saw doctor good blood s the same so going to do a phone call save me traveling to see him no treatment but loss weight but I look lot better got new jeans take care got 1921sons to make dinner for and clean had my two late sons at43 Last45 9 9oz also 3 newknews hip replacement s allowed in 50 now64 no vaccines for me live life xpeace nanapolly x Scotland 👍🌌🌹💐🌞🌻☮️🙏🌺🌌🏴🌞
Je suis meme maladie. J'ai regardé le vidéo. Merci beaucoup pour donner informations et motivation.
I got retuxinab and bendamustine 4.5 yrs ago for 6 months every 3 weeks 2 rounds. I started with stage 1 but got treated at stage 3. For CLL
What do you mean by its started stage 1 but treated stage 3?
I’ve seen these, zero mention of her WBC numbers? What are they, this is the red flag to general medical doctors, then a referral to a hematologist.
Did she have a hyperglycemia?