About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw her. I did. She referred me to UT Health/MD Anderson, which confirmed that I have CLL. I was placed on Obinutuzumab/Venclexta therapy for 12 months. My treatment regimen has now ended!! Blood lab work shows most of my blood components are now at the low end of normal range, although my white cell count is a bit too low. CT scan indicates that my lymph nodes, one near my spleen was the size of an orange at the beginning, have now gone back to normal size. All my other inerds look good with no abnormalities. And best of all (drum roll, please), my Flow Cytometry test came back stating: "There is no evidence of abnormal clonal B-cells. No CD5 positive and no CD20 positive clonal population are identified... no abnormal blast population is identified". My doc said that I have a "striking response" to my treatment. AND because I am in the Leukemia & Lymphoma Society Covid antibody study and after FOUR vaccinations I show no detectable antibodies, I qualify for Evusheld - which is not counteracted by the residual cancer drugs remaining in my bloodstream. I will keep you posted on how that works out. I am hopeful this 75-year-old man still has some mileage left in the odometer....
I Have Just Completed My 12 Month CLL Treatme... - CLL Support
I Have Just Completed My 12 Month CLL Treatment Plan
Brilliant news!!!!!I have been following you as we are on such a similar path. Tomorrow morning I have bloods and pick up my last cycle of venetoclax and in 28 days I will reach my D day as you have. Can't tell you how pleased I am that you have done so well and you can now look forward to a deep deep deep long lasting remission from this little bugger CLL. One question if I may. My haematologist said she will do a PET Scan along with flow cytometary 3 weeks after treatment to see " whats going on under the bonnet " Did you have anything similar?
Anyway I am so happy for you. Thanks to these brilliant drugs you can now take life by the scuff of the neck and enjoy life for years to come. We'll done and I send every good wishes and lots of luck for the future. Patrick
Patrick..... Thanks for the kind words. No further CT evaluations are in the works for me. My doc set my next appointment for around June 1st for follow-up exam and routine lab work. After that, it looks like I will see him every 6 months........
Fantastic news! God bless.
Very nice report Dan, and best wishes for a long and uneventful remission. Also, hope the Evusheld will help you to remain COVID free. If you have not had Shringx, to protect you from shingles, you would do well to ask your Dr. about that possibility for coverage.
That's amazing! What made you/your doctors select V+O rather than something else like Acalabrutinib?
At the time of my diagnosis, my doc asked me, "Do you want to take a pill every day henceforth, or do you want a fixed duration treatment for 12 months?" I said, "Duh, I'll take the 12 month treatment plan, thank you." I also believe that O+V was becoming the frontline treatment of choice.... that may change a year from now. There are some great drugs coming down the pike. CAR-T cell therapy will be the CLL "cure" of the future. Right now, it is exotic and expensive.
Fantastic news, thanks so much for sharing it!
That's wonderful and I wish you a long and healthy remission.
DanBro1, WONDERFUL!!!!! Sandra🙂
Hello Dan - as a 75 year old about to start on V+O, what are your three top pieces of advice for me? Anyone else too who has completed this course. Advice gratefully received.
Hi, you may see from my profile that I am near the end of a year on V&O. Its been a very successful year and although it's not one I want to repeat anytime soon its been pretty straightforward (apart from the very beginning) My top 3 tips would be (1) Get yourself in good shape if you can, eat healthy food plenty fresh veg and fruit, if you are overweight try and loose some. I gave up alcohol and caffeine as I felt they were stimulants which I viewed as not helpful with cancer in my blood. I also went vegetarian to reduce sat fat. Have to say it was easier than I thought. (2) take daily exercise even on days you don't feel like it. I am lucky to have a dog and woodland nearby so aim to do a 4 mile circuit each day. I also get out on my bike when the weather is good. Plenty of evidence that exercise helps and I always feel better for it. (3) drink lots of water. I aimed to drink 2. 5 litres daily on top of tea coffee etc. Start the day with 2 large glasses of water. This will flush the kidneys and kick start your day. This is especially true when you move on to venetoclax. My CNS nurses said a simple rule is to always keep your pee clear. If to looks yellow, even pale yellow you need to drink more to keep flushing the toxic by products of the dying cancer cells out of your system.Hope that helps. I'm sure you will do fine they are great drugs that work unbelievably well. Lots of luck and best wishes. Patrick
Hi Patrick - that is really helpful and also very encouraging. Thanks and I am delighted it went well for you. Colin
Hello Patrick, I start the Venetoclax next week in the hospital. How did you handled the oral pill and any insights on how to deal with nausea or vomiting?
Hi and thanks for the message. So glad you are about to start on V and that obviously things have gone well so far with the Obinutuzumab (sorry I am assuming you were having O&V but you might of course just be having Venetoclax)
Anyway I was fine with V. They did give me some tablets to take if I felt nauseous but I never had to. My routine was to get up and drink 2 glasses of water (about 1 litre) then take the V pills with some food which was usually a bowl of porridge about 08.00. That worked really well for me. I then found that about 2-3 later I would begin to feel very tired. I then forced myself to get out for a walk with the dogs and that helped to get me going again and I was fine for the rest of the day. I have read here that others have felt sick in the morning so moved their pill taking to the evening and that helped them. So try in the morning with food having had a good drink of water before and see how you go. If you feel sick ask the team for anti sickness medication and consider gradually moving your pills to the evening.
Perhaps I was lucky but I tolerated the V tablets really well and have never been sick so here's hoping its the same for you. I have just had my 9 month review having finished the year of V in March last year and I remain in full remission so they are remarkable drugs and we are lucky to have them. Don't forget to drink lots of water when taking V especially when you ramp up and do try and get out for a good walk if (like me) you feel fatigue coming on a couple of hours after taking them - it really helps.
Lots and lots of luck with it. I'm sure you will be fine and cope with the V as easily as I did. Take care and stay well. Patrick
Thanks Patrick great advice! And yes you are correct im on the O and V regiment and so far have handled the O pretty good. I try to stay active everyday with weights, xctry skiing, tyreadmill and tennis so hopefully that wont be a problem.
Great stuff. Blimey sounds like you are preparing for the Olympics. Super impressed!! P
The first 6 months are the most important. You will be receiving monthly infusions of Obinutuzumab while also taking 400MG of Venclexta. Cancer cells will be dying rapidly, so drink LOTS of water to help your kidneys flush the dead cells out of your body. AbbieVie sent me a nice water bottle to carry around. Also, try to get plenty of rest and sleep. Your blood is going to be a battle zone and you WILL have fatigue and lethargy. Finally, practice safe pandemic habits: Avoid crowds. Wear a mask. Wash hands frequently and use sanitizer (carry a small container on your person). Be happy. Keep a good attitude. Remember, we are fortunate to have new and very effective drugs to manage our disease - giving us years of life that those before us with CLL did not have.
Thank you Dan - that is very very helpful with some great pieces of advice and really positive. Inspirational. Many thanks and all the best to you.
I've been wondering what happens if you don't drink enough water? Will it cause permanent kidney damage? Thanks
It is possible, I think. It may not mainifest immediately. Our kidneys get stressed when dead cell products get eliminated. The more stress/less hydration, the greater the chance one's kidneys may not recover successfully. I am unaware of any absolute numbers, it's pretty patient-specific. Plus other things like "amount of baseline inflammation" and "nutritional status" and "level of oxygenation" and lots of other parameters can affect the outcome.
My FIL has a genetic disposition to kidney problems (his dad had problems). He spent literal decades living at high altitide, drinking only alcohol, sugared coffee, soft drinks, and chocolate milk. I am serious, he would not drink water, ever, it was always sugared or something like Scotch. He now has kidney problems, which he blames on taking COX-2 inhibitors for a few years about a decade ago. IMO it is overall the lack of hydration, you could tell by looking at him even back then his skin was dry, his veins stood out. He doesn't drink alcohol much anymore, and has given up coffee, but still chugs soda and now drinks sweet juices and sugared tea 🙄.
You give me hope!!! Beginning month 8 of the same treatment - O & V. So happy for your progress and your upbeat tone!
Hello Abby-pup, I start the Venetoclax next week in the hospital. How did you handled the oral pill and any insights on how to deal with nausea or vomiting?
Once you start the pill, work with your doctor to time taking your pill in the evening, that worked best for me. There are many here on HU that suggest taking the pill with certain type foods. Best of luck.
Amazing! Keep fingers crossed for 10 years of remission now at least 😀
DanBro1 Congrats. Happy for you. Are you in Austin Tx?
No.... 75 miles down the road in San Antonio!
Wonderful news!!!
Wow great news. I am so happy for you. May you continue to be in remission. 👍
I am also on VnO. End of month starts cycle 4 and so far it’s working great!! Dr very happy with results. All nodes that were swollen back to normal and all my blood is in normal range. I wish u a long lasting remission as I also am hoping for.
Hello BigHT, I start the Venetoclax next week in the hospital. How did you handled the oral pill and any insights on how to deal with nausea or vomiting?
I never have been nauseous or vomiting issues. I got some serious Diarrhea and getting colonoscopy again because my GG dr thinks it might be colitis from the meds. I will fight this no matter what I gear yourself up for the same. The meds work great and all my blood work is normal I feel great other than my bathroom issues. I’m done in 4 more cycles. Meet u at the finish line and GL
Thank you for the great advice and best of luck to you!
Hi DanBro1 I was recently diagnosed with CLL a few months ago and started infusions with Obinituzamab in December and have had several infusions now and handling that well, I start the Venetoclax next week in the hospital. How did you handled the oral pill and any insights on how to deal with nausea or vomiting?
I experienced mild chills and fatigue after my first few Obinutuzumab infusions. I had no reaction to my 4 daily Venclexta pills. Just drink plenty of water.......
Thanks for the great advice and best of luck to you!
Thank you for posting this I was just told I will be starting venetoclax and obinutuzumab. You have given many good tips. Continues good health for you!
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