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CLL GUY
Hi- 68 yr. old man, had CLL for 6 yrs. now. was put on Imbruvica at first. side effects were very bad. Shingles, ( felt like a truck ran over my leg) had 2 lymph glands removed. etc. after 3 yrs. it just stopped working. got very sick, emergency room twice, then they put
Hi- 68 yr. old man, had CLL for 6 yrs. now. was put on Imbruvica at first. side effects were very bad. Shingles, ( felt like a truck ran over my leg) had 2 lymph glands removed. etc. after 3 yrs. it just stopped working. got very sick, emergency room twice, then they put
bandit44
in
CLL Support
1 month ago
Venatoclax mono therapy
I'm Interested in the Vanatoclac monetherapy which I am getting right now since summer. I cannot get a straight answer from my oncolog/hematologist at St. Joe's in Toronto or a clinical scientist at Sunnybrook about why I'm getting monotherapy and not dual therapy. I have had fewer side effects than
I'm Interested in the Vanatoclac monetherapy which I am getting right now since summer. I cannot get a straight answer from my oncolog/hematologist at St. Joe's in Toronto or a clinical scientist at Sunnybrook about why I'm getting monotherapy and not dual therapy. I have had fewer side effects than
onu1tadi2
in
CLL Support
3 months ago
GAZYVA & VENCLEXTA…I thought it wasn’t working. Apparently it was, extremely well
Had PET scan yesterday, read the report today. I haven’t spoken to my Doc yet. But according to this report there are no signs of enlarged lymph nodes anywhere. Kind of blows my mind, the main reason I started treatment was because of my abdominal pain (which I still have). I am considered high risk
Had PET scan yesterday, read the report today. I haven’t spoken to my Doc yet. But according to this report there are no signs of enlarged lymph nodes anywhere. Kind of blows my mind, the main reason I started treatment was because of my abdominal pain (which I still have). I am considered high risk
Corgidad
in
CLL Support
4 months ago
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Venclexta & Obinutuzumab not working?
I am getting ready for my 6th infusion, all my bloodwork is practically normal. I am Trisomy 12 with notch 1, NRAS, ATM and MITF. Before I started treatment my wbc had dropped on its own from 18,000 to 11,000. And my lymph nodes in my neck and armpits had started to reduce in size. They started me on
I am getting ready for my 6th infusion, all my bloodwork is practically normal. I am Trisomy 12 with notch 1, NRAS, ATM and MITF. Before I started treatment my wbc had dropped on its own from 18,000 to 11,000. And my lymph nodes in my neck and armpits had started to reduce in size. They started me on
Corgidad
in
CLL Support
4 months ago
CLL Patients -- Venclexta
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
AlexCam
in
CLL Support
4 months ago
Heart Issues and Venclexta?
Has anyone had problems with their heart racing on Venclexta? My husband was diagnosed with CLL 17p deletion 53 mutation In 2018. Over the past 5, almost 6 years, he’s been treated with Ibrutinib, Venclexta, and Acalabrutinib. He’s had to discontinue all 3 because he couldn’t tolerate them for long
Has anyone had problems with their heart racing on Venclexta? My husband was diagnosed with CLL 17p deletion 53 mutation In 2018. Over the past 5, almost 6 years, he’s been treated with Ibrutinib, Venclexta, and Acalabrutinib. He’s had to discontinue all 3 because he couldn’t tolerate them for long
KKwtx
in
CLL Support
6 months ago
It Had To Happen!! Covid-19 Strikes!
It has been 18 months since I completed my CLL Obinutuzumab plus Venclexta treatment protocol. I was in remission. I have had four Covid-19 vaccinations and two Evusheld vaccinations over that time. So, last week is the first time I ventured into the public transportation system in 2-1/2 years. I
It has been 18 months since I completed my CLL Obinutuzumab plus Venclexta treatment protocol. I was in remission. I have had four Covid-19 vaccinations and two Evusheld vaccinations over that time. So, last week is the first time I ventured into the public transportation system in 2-1/2 years. I
DanBro1
in
CLL Support
7 months ago
What can happen with V+O in 3 months
I understand we are all different and our our experiences are different. I am writing this to share what has transpired for me as an [u]potential example[/u] for those considering V+O. After only 10 minutes of my first infusion I had a reaction that really scared me but the nurses jumped in and got
I understand we are all different and our our experiences are different. I am writing this to share what has transpired for me as an [u]potential example[/u] for those considering V+O. After only 10 minutes of my first infusion I had a reaction that really scared me but the nurses jumped in and got
Rico49
in
CLL Support
7 months ago
Venclexta dosing schedule question.
I am trying to figure out when I will be done with my Venclexta but I'm kind of confused. I started the ramp up on 11/17/2022. I started the Gazyva infusions on 10/27 & 28. Is there anyone who is knowledgeable at figuring this out?
I am trying to figure out when I will be done with my Venclexta but I'm kind of confused. I started the ramp up on 11/17/2022. I started the Gazyva infusions on 10/27 & 28. Is there anyone who is knowledgeable at figuring this out?
Gradyboy
in
CLL Support
7 months ago
Great Change In Part D in 2024
I saw the message today about the proposed price control for ten drugs, one of which is Imbrutinib (Imbruvica). I agree that whether or not these changes ever take place is a huge question mark, since the Administration can change a lot between now and then. One change from that same 2022 law that
I saw the message today about the proposed price control for ten drugs, one of which is Imbrutinib (Imbruvica). I agree that whether or not these changes ever take place is a huge question mark, since the Administration can change a lot between now and then. One change from that same 2022 law that
wizzard166
in
CLL Support
8 months ago
What’s next?
I was diagnosed, in December of 2018, with CLL and placed on W&W. Less than a year later I started FCR. After completing FCR my blood counts rose steadily until I reached stage 4 which led to two years of Venclexta (400mg daily) treatments. Throughout all treatments I’ve had monthly bloodwork, yearly
I was diagnosed, in December of 2018, with CLL and placed on W&W. Less than a year later I started FCR. After completing FCR my blood counts rose steadily until I reached stage 4 which led to two years of Venclexta (400mg daily) treatments. Throughout all treatments I’ve had monthly bloodwork, yearly
Pokerguy
in
CLL Support
8 months ago
Venclexta mono therapy vs Venclexta plus gazyva
I was treated with Ibrutinib for five years until resistance developed.Following with venclexta mono therapy for about a year, stopped due to pandemic. Remission lasted 2 years and now I am faced with a choice that has me very worried. One doctor at City of Hope wants to do venetoclax monotherapy starting
I was treated with Ibrutinib for five years until resistance developed.Following with venclexta mono therapy for about a year, stopped due to pandemic. Remission lasted 2 years and now I am faced with a choice that has me very worried. One doctor at City of Hope wants to do venetoclax monotherapy starting
ralphfelo
in
CLL Support
8 months ago
Wearing a mask!
My wife has cll diagnosed in June of 2012. She is currently on Venclexta. My question I am sure has been discussed before. She goes in frequently for some infusions but mostly just taking the pill. The question is that none of the medical support staff wear masks. We always do for almost every indoor
My wife has cll diagnosed in June of 2012. She is currently on Venclexta. My question I am sure has been discussed before. She goes in frequently for some infusions but mostly just taking the pill. The question is that none of the medical support staff wear masks. We always do for almost every indoor
Ecalv
in
CLL Support
8 months ago
Vertigo and Venclexta?
My husband is starting cycle 12 of Venclexta, reduced to 200mg /day due to 2 bouts of Neutropenia, and has recently experienced Vertigo twice. The first time, I did not associate this with the treatment; however, it seemed peculiar when it happened a second time, only eight weeks later. He was advised
My husband is starting cycle 12 of Venclexta, reduced to 200mg /day due to 2 bouts of Neutropenia, and has recently experienced Vertigo twice. The first time, I did not associate this with the treatment; however, it seemed peculiar when it happened a second time, only eight weeks later. He was advised
lisakc1
in
CLL Support
9 months ago
Venclexta
Has anyone gained weight on Ven? When starting Ven I had diarrhea and lost literally 15 lbs. After a month, I became and remained constipated and have not only regained the 15 lbs. but also an aditional 10 lbs. despite increased exercise and no change in calorie count. Any suggestions or ideas
Has anyone gained weight on Ven? When starting Ven I had diarrhea and lost literally 15 lbs. After a month, I became and remained constipated and have not only regained the 15 lbs. but also an aditional 10 lbs. despite increased exercise and no change in calorie count. Any suggestions or ideas
skipro
in
CLL Support
10 months ago
Water or how much water on Gazyva?
Skyshack and I got into a discussion about how much water are you to drink when on V+O. I decided to send out my general findings and see if anyone has additional info. I was [u]
unable
[/u] to find definitive instructions for water and Gazyva. An AI search on Microsoft first took me to drug
Skyshack and I got into a discussion about how much water are you to drink when on V+O. I decided to send out my general findings and see if anyone has additional info. I was [u]
unable
[/u] to find definitive instructions for water and Gazyva. An AI search on Microsoft first took me to drug
Rico49
in
CLL Support
10 months ago
anybody achieved good blood results with venclexta in 6 months and stopped treatment?
I was on acalabrutinib for 1,5 years, then dr switched me on venclexta. My blood results are completely normal for 3 months and I want to stop treatmentbecause of side effects. My next appointment with dr in august , I hope he will take me off the drug. Any thoughts? Thanks.
I was on acalabrutinib for 1,5 years, then dr switched me on venclexta. My blood results are completely normal for 3 months and I want to stop treatmentbecause of side effects. My next appointment with dr in august , I hope he will take me off the drug. Any thoughts? Thanks.
Belkin123
in
CLL Support
10 months ago
when start venclexta
I just did first Obinutuzumab infusion. First day of 100cc hit me hard but second of 900cc was better count of WBC count went from over 12000 to a little over 5000. I have an infusion each week for two weeks then start the venclexta and continue on with it all thru my Obinutuzumab infusions and beyond
I just did first Obinutuzumab infusion. First day of 100cc hit me hard but second of 900cc was better count of WBC count went from over 12000 to a little over 5000. I have an infusion each week for two weeks then start the venclexta and continue on with it all thru my Obinutuzumab infusions and beyond
sept149
in
CLL Support
11 months ago
Question on venclexta and bruising.
I am in my seventh month of V&O treatment. Last Thursday I started an antibiotic (Bactrim) and a couple days into it I noticed what looks like bruises on my lower cheek on one side. It's not a typical allergic reaction. I feel fine no fever, UTI seems to be cleared up. Has anyone experienced any strange
I am in my seventh month of V&O treatment. Last Thursday I started an antibiotic (Bactrim) and a couple days into it I noticed what looks like bruises on my lower cheek on one side. It's not a typical allergic reaction. I feel fine no fever, UTI seems to be cleared up. Has anyone experienced any strange
Gradyboy
in
CLL Support
11 months ago
Tumor Lysis Syndrome: What ( CLL ) Patients Need to Know (Leukemia and Lymphoma Society podcast)
Many of us are aware of the risk of tumor lysis syndrome (TLS) when we commence treatment, particularly with venetoclax and that the purpose of the venetoclax ramp-up, is to reduce the risk of TLS occurring. TLS can also occur with other CLL treatments, especially when they are fast acting, rapidly killing
Many of us are aware of the risk of tumor lysis syndrome (TLS) when we commence treatment, particularly with venetoclax and that the purpose of the venetoclax ramp-up, is to reduce the risk of TLS occurring. TLS can also occur with other CLL treatments, especially when they are fast acting, rapidly killing
AussieNeil
Administrator
in
CLL Support
1 year ago
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