I was diagnosed with CLL the day after Thanksgiving, 2023. WBC was 246,000. I was feeling very poor. My first doctor wanted to use chemo and gave me 50/50 survival odds. Decided to go to Rochester, NY, to see the Dr at Wilmot Cancer Center. I started with a weekly obintuzimab infusion, then added venetoclax. In a couple weeks, I get my last infusion. My WBC is just over 3000. I feel alive again. This has not been an easy journey, but it is getting better. Thank you for this video.
Thanks for this video. Just diagnosed. Lower platelets (90,000) since at least 2012 and (massive) splenomagely per recent CT contrast. All other blood parameters are in the normal range. I had blood and bone marrow flow cytometry. Also, various genetic tests (not detection of deletions or chromosomal aberrations). Appears that I have SLL flavor of CLL. Meeting with doctor (hematologist/oncologist) in 5 days about next steps. I have been watching many videos to educate myself. I believe that the team of doctors in my Colorado health care system are excellent. Thanks for this video. One of the better ones I have watched!
Thank you! This was so helpful! It was also very hopeful! It is very encouraging to see all of the doctors working together while sharing different perspectives!
IMHO, getting educated and self advocating with this disease is so important. My first oncologist at the local hospital recommended a treatment that was 5 years behind the times - I knew that from great TH-cam resources like this). I ditched him and went with a CLL specialist at Fred Hutch. World of difference in treatment. After a year on the Ven/Obin protocol I'm now uMRD after going in with a 254K white count. Thank goodness for the hardworking CLL specialists like the Drs. here.
We would love to hear more about your experience and share it to help others out there. If you're interested, please email us at stephanie@thepatientstory.com and alexis@thepatientstory.com. Thank you!
I was diagnosed 27th oct this year and the stress ive been under has been worse than the CLL im on watch and wait just now.but have aches over body im hoping these are stress pains and im giving it a chance to heel failing that il need to phone hemotoligy before my next appoitment which is 4th Jan next year.
@@jamescrichton4437 don't hang around cll forums don't spend all night googling it. If you had to get this, then you could not have got at a better time. This is no more deadly than uncontrolled diabetes. I am aged 62 now Had 1 treatment when I was diagnosed in 2011. Bad news is you are going to die. Good news is not from cll and not for a long while. Stress not otherwise you will turn into mental jelly.
❤ it sure is difficult! Just diagnosed in January have not started any treatment and do not want to have to put that poison in my body but what choice do we have.
Hi Julie, we are so glad this was helpful. We are trying to do them more regularly. If you sign up for our updates, you will be among the first to know when they're coming - and of course, we'd always love to hear your feedback on what would help most. Please sign up here - thepatientstory.com/join/. If you have any questions, please email CONNECT@THEPATIENTSTORY.COM. Thank you, Stephanie
What do you recommend for the tiredness. My hubby is on watch and wait. He is in year 3. I have him on many vitamins and have his numbers as far as white count down to 10 to 13. But he stays so tired.
What if SSL/CLL found in Prostate biopsy done due to surgery -TUR done by Laser ? Relative went to Hematologist who said to watch -wait , however NP did not know it was in prostate until told by relative. Thank you for all this information-
I am cll patient sice 5 years Bone maroo test has been don in CMH hospital My stage declared biant A My wbc are 40,000 Hemoglobin 14 Platelets are 250k No symptoms of any disease Please suggest me What is best for me
Thanks for this. My brother has just started treatment, venetoclax. He's afraid to go anywhere or do anything for fear of infection. How do you deal with this threat of infection as you're carrying on your life of doing the things you want to do?
I've just come off of a year on the Venetoclax/Obinutuzumab protocol. IMHO, he's picked a great therapy - brought my white counts down from 254K to normal. I'm now in uMRD (undetectable disease). For me, infection was not a big issue - had one nasal staff infection that was cleared up with Mupriocil. But I was very careful and masked up with an N95 religiously around others... and so did my wife as to not bring anything home herself. Cuts and scrapes all got treated immediately with neosporin. Everyone's risk profile is different... but IMHO it's only a year of treatment (a big benefit with Venetoclax) and if "life" has to slow down and be curtailed some to get through it, it is (was) worth it.
@@rhymereason3449 Thanks for this very positive story. It sounds like you're doing really well. I think my brother needs some support like this (as do I). He's only a few months in, his numbers are now normal. He has infusions once a month as well, not sure what with. You mention your risks in the past tense, does this mean that when your treatment is over, then your risk of infection goes down somewhat? Or does it generally stay the same? As you say, I think he has to settle in and learn how to live his life hand-in-hand with the changes this brings. And hopefully he'll become less scared with time. I hope so. All the best.
I had no trouble with infection. I had an upper respiratory infection ,right before I started treatment. After that ,I wore a mask and we t about my normal life. I was on antibiotics the whole time. And never had a problem. Wasn't sick one time. And this was at the height of COVID. Tell him to live his life,fear is his enemy.
We are working on a CML story now. If you subscribe, you will get the alert. We also have info on upcoming programs, just join our community → thepatientstory.com/join/
Hi. I am a cll patient. I am battling with this deadly disease since one year. As per suggestion and advice of my attending physician, I am consuming two capsule of ibrutinib and I am feeling well but my bodyweight is losing gradually. Would you be kind enough to come forward to share your views and experiences about how to live longer and also about diet list that should I take to remain fit and well.
Your story is interesting because I've never heard of 2 pills, which I will assume is 280mg, being the prescribed dose. Usually 3. I'm not Suggesting it should be otherwise but am intestate in results in lower doses. I'm only a patient not a dr so don't read into my comments like advice.
I was on Obinatuzomab and Venetoclax. My oncologist told me to eat whatever I wanted in moderation. She was very big on trying to get all my vitamins and nutrition from food,not taking any extra pills. Even when my phosphorus was low,she wanted me to eat proper foods,rather than taking phos pills. I always respected her for that. Eat a healthy diet,and get used to operating with low energy. I'm doing it for 4 years now.
No doctor should be telling their patients they're gonna die from the disease no matter how dire it is. Patients come to see doctors for treatment & possible cure & the doctor's job is to treat the disease & give words of hope & encouragement to it's patients.
My wife could not understand why the first doctor was being fired? That is exactly the problem of USA medical health system she found. Everybody loves rosy color sweet words but ignore the truth and canons.
Bad advice from the Doctor. I was never told such a thing. As your Doctor got fired it could be why my doctors says nothing at all. I cannot get anything from him except I have CLL.
I already have cardiac arrhythmia so I can't take BTK inhibitors. Also, these drugs have a co-pay of $3500 a MONTH, as I dont have Medicare D. So I'm stuck with high-cost infusion therapy. I'm stunned by the arrogance and lack of compassion I see in *every* doctor, much less "brilliant" practitioners at huge facilities like Stanford and UCSF. If you have aggressive CLL, you know what my only option is. Vids like this, with idiots who think they're here to convince everyone how well they can style their hair and apply makeup while undergoing expensive infusion therapy, DISGUST me.
I was diagnosed with CLL the day after Thanksgiving, 2023. WBC was 246,000. I was feeling very poor. My first doctor wanted to use chemo and gave me 50/50 survival odds. Decided to go to Rochester, NY, to see the Dr at Wilmot Cancer Center. I started with a weekly obintuzimab infusion, then added venetoclax. In a couple weeks, I get my last infusion. My WBC is just over 3000. I feel alive again. This has not been an easy journey, but it is getting better. Thank you for this video.
congrats! enjoy & many thx 4 sharing!
14 years. That is comforting to know.
Thanks for this video. Just diagnosed. Lower platelets (90,000) since at least 2012 and (massive) splenomagely per recent CT contrast. All other blood parameters are in the normal range. I had blood and bone marrow flow cytometry. Also, various genetic tests (not detection of deletions or chromosomal aberrations). Appears that I have SLL flavor of CLL. Meeting with doctor (hematologist/oncologist) in 5 days about next steps. I have been watching many videos to educate myself. I believe that the team of doctors in my Colorado health care system are excellent. Thanks for this video. One of the better ones I have watched!
Thank you! This was so helpful! It was also very hopeful! It is very encouraging to see all of the doctors working together while sharing different perspectives!
Omg you started with 6 years life expectancy and Im nearing 6 yrs remission. Diagnosed in 2016. Glad new drugs out
heyy, is everything going well now?
thank you Mrs. baker for this pod cast. hope the best for you .
IMHO, getting educated and self advocating with this disease is so important. My first oncologist at the local hospital recommended a treatment that was 5 years behind the times - I knew that from great TH-cam resources like this). I ditched him and went with a CLL specialist at Fred Hutch. World of difference in treatment. After a year on the Ven/Obin protocol I'm now uMRD after going in with a 254K white count. Thank goodness for the hardworking CLL specialists like the Drs. here.
We would love to hear more about your experience and share it to help others out there. If you're interested, please email us at stephanie@thepatientstory.com and alexis@thepatientstory.com. Thank you!
Thankyou for this comforting and reassuring video .
Just diagnosed 1Nov23. Emotionally numb. Listening to this I am less confused and more hopeful ! Thank you for the info.
I was diagnosed 27th oct this year and the stress ive been under has been worse than the CLL im on watch and wait just now.but have aches over body im hoping these are stress pains and im giving it a chance to heel failing that il need to phone hemotoligy before my next appoitment which is 4th Jan next year.
@@jamescrichton4437 don't hang around cll forums don't spend all night googling it. If you had to get this, then you could not have got at a better time. This is no more deadly than uncontrolled diabetes. I am aged 62 now Had 1 treatment when I was diagnosed in 2011. Bad news is you are going to die. Good news is not from cll and not for a long while. Stress not otherwise you will turn into mental jelly.
❤ it sure is difficult! Just diagnosed in January have not started any treatment and do not want to have to put that poison in my body but what choice do we have.
So glad this was helpful. If you want first updates on our CLL content and program, please join our community here: thepatientstory.com/join/
@@jamescrichton4437what’s the latest? How are you?❤️❤️
Thank you for giving me hope today. Your webinar was extremely informative. Thank you. How often do you have webinars.
Hi Julie, we are so glad this was helpful. We are trying to do them more regularly. If you sign up for our updates, you will be among the first to know when they're coming - and of course, we'd always love to hear your feedback on what would help most. Please sign up here - thepatientstory.com/join/. If you have any questions, please email CONNECT@THEPATIENTSTORY.COM. Thank you, Stephanie
nice job! such great up to date perspectives and info. Thanks to all.
What do you recommend for the tiredness. My hubby is on watch and wait. He is in year 3. I have him on many vitamins and have his numbers as far as white count down to 10 to 13. But he stays so tired.
Thank you all.
What if SSL/CLL found in Prostate biopsy done due to surgery -TUR done by Laser ? Relative went to Hematologist who said to watch -wait , however NP did not know it was in prostate until told by relative. Thank you for all this information-
How long does it take the medications to work?
I am a CLL patient who watched and waited for 2 years but now it requires treatment and more thorough blood analysis
I am cll patient sice 5 years
Bone maroo test has been don in CMH hospital
My stage declared biant A
My wbc are 40,000
Hemoglobin 14
Platelets are 250k
No symptoms of any disease
Please suggest me
What is best for me
I wish all of you lotsa luck and have faith in whom your higher is.
Thanks for this. My brother has just started treatment, venetoclax. He's afraid to go anywhere or do anything for fear of infection. How do you deal with this threat of infection as you're carrying on your life of doing the things you want to do?
I've just come off of a year on the Venetoclax/Obinutuzumab protocol. IMHO, he's picked a great therapy - brought my white counts down from 254K to normal. I'm now in uMRD (undetectable disease). For me, infection was not a big issue - had one nasal staff infection that was cleared up with Mupriocil. But I was very careful and masked up with an N95 religiously around others... and so did my wife as to not bring anything home herself. Cuts and scrapes all got treated immediately with neosporin. Everyone's risk profile is different... but IMHO it's only a year of treatment (a big benefit with Venetoclax) and if "life" has to slow down and be curtailed some to get through it, it is (was) worth it.
@@rhymereason3449 Thanks for this very positive story. It sounds like you're doing really well. I think my brother needs some support like this (as do I). He's only a few months in, his numbers are now normal. He has infusions once a month as well, not sure what with. You mention your risks in the past tense, does this mean that when your treatment is over, then your risk of infection goes down somewhat? Or does it generally stay the same? As you say, I think he has to settle in and learn how to live his life hand-in-hand with the changes this brings. And hopefully he'll become less scared with time. I hope so. All the best.
I had no trouble with infection. I had an upper respiratory infection ,right before I started treatment. After that ,I wore a mask and we t about my normal life. I was on antibiotics the whole time. And never had a problem. Wasn't sick one time. And this was at the height of COVID. Tell him to live his life,fear is his enemy.
I've had CLL for 5yrs watch and wait ..in Nov 2022 I was diagnosed with Lung cancer stage 4 I'm on immunotherapy for 1 year....
I love her! Dr. Coombs?
We love working with her as well :) -Stephanie
My cancer marker total is 18. I can’t find anything on the internet on the total. Does anyone know
My oncologist consulted with 3 other oncologists from john hopkins , a different group for my last chemo in 2018.
Do any of you have deletion 17p and did it make a difference in treatment?
I had deletion 13,with unmutated cells. I was told deletion 17 is harder to treat. I have been in remission for over 3 years now. I wish you luck 🤞
Infusions of Obinatuzomab and oral Venetoclax for a year worked well for me.
Please tell me about cml my father is suffering from cml
We are working on a CML story now. If you subscribe, you will get the alert. We also have info on upcoming programs, just join our community → thepatientstory.com/join/
Fenbendazole - Joe Tippens Protocol. Yeast fungus parasites mold and micotoxins.
Hi. I am a cll patient. I am battling with this deadly disease since one year. As per suggestion and advice of my attending physician, I am consuming two capsule of ibrutinib and I am feeling well but my bodyweight is losing gradually. Would you be kind enough to come forward to share your views and experiences about how to live longer and also about diet list that should I take to remain fit and well.
Your story is interesting because I've never heard of 2 pills, which I will assume is 280mg, being the prescribed dose. Usually 3. I'm not Suggesting it should be otherwise but am intestate in results in lower doses. I'm only a patient not a dr so don't read into my comments like advice.
I was on Obinatuzomab and Venetoclax. My oncologist told me to eat whatever I wanted in moderation. She was very big on trying to get all my vitamins and nutrition from food,not taking any extra pills. Even when my phosphorus was low,she wanted me to eat proper foods,rather than taking phos pills. I always respected her for that. Eat a healthy diet,and get used to operating with low energy. I'm doing it for 4 years now.
Hi can you share your contact details
No doctor should be telling their patients they're gonna die from the disease no matter how dire it is. Patients come to see doctors for treatment & possible cure & the doctor's job is to treat the disease & give words of hope & encouragement to it's patients.
Id rather be told the truth! Giving someone false hope I guess would not matter if the patient has faith.
Still I'd rather truth and stay faithful ..
My wife could not understand why the first doctor was being fired? That is exactly the problem of USA medical health system she found. Everybody loves rosy color sweet words but ignore the truth and canons.
❤🙏👏🏻
Bad advice from the Doctor. I was never told such a thing. As your Doctor got fired it could be why my doctors says nothing at all. I cannot get anything from him except I have CLL.
I already have cardiac arrhythmia so I can't take BTK inhibitors. Also, these drugs have a co-pay of $3500 a MONTH, as I dont have Medicare D. So I'm stuck with high-cost infusion therapy. I'm stunned by the arrogance and lack of compassion I see in *every* doctor, much less "brilliant" practitioners at huge facilities like Stanford and UCSF. If you have aggressive CLL, you know what my only option is. Vids like this, with idiots who think they're here to convince everyone how well they can style their hair and apply makeup while undergoing expensive infusion therapy, DISGUST me.