V&O treatment is over

[Dexterdoggg]

So, after 366 days, 1,754 pills, 3 Neuprogen shots, 10 infusions, and one Covid diagnosis, I am done with my treatment. I don't know if there will be any testing done for umrd status but I will discuss that with my doctor in April. I have been below average with my WBC since last March and my ALC since last April (except when I needed the Neoprogen shots). Hoping for some time off of treatment. These are the last of my pills I took tonight.

[Pacificview]

Congratulations! Off treatment is pretty cool. Would you recommend that treatment to others considering it, like me? Thank you for detailing your journey in your BIO so well. It is really valuable info for others.

[Dexterdoggg in reply to Pacificview]

Thank you. I would definitely recommend this treatment to anyone that is ready for treatment or at least to consider it if available. If/when I need treatment, I plan on doing it again if nothing better is available and if it gets approved. My oncologist and I have already discussed doing it again and he is all for it. I have posted my blood test numbers in my profile if you want to take a look. I think they only go through June or July because there really wasn't much difference after that. Please feel free to ask any questions you may have.

[Pacificview in reply to Dexterdoggg]

I am reading through your numbers, very cool. As this is the combo I have focused on.To be finalized at next onco app on 3/29 . Once she has my pretreatment blood results.

I will take you up on questions, may I private message here?

[Dexterdoggg in reply to Pacificview]

Sure, you can private message me on here. Feel free to ask anything.

[Skimom]

Congratulations! I wish you peace and good remission. Diana

[Dexterdoggg in reply to Skimom]

Thank you.

[Dexterdoggg]

Thank you. I am hoping for a deep remission.

[garyherm]

that is good news and I also hope you have many years of remission.

[Livingwith67]

wishing you well on the next part of your journey, I will soon be following in your footsteps and will keep this post of yours in my minds eye.

[Hilo13]

congratulations may it be a long remission. I am seven months into same treatment looking forward to recording my last four tablets of ventoclax too say well

[Pearlpink]

I echo that! Have a long remission!

[Fran57]

Congratulations 🎉🥳🎈

You must feel great!

Take care,

Fran 😉

[carnvellan]

Me too - just two weeks ago!! Those counts are great.

[HaloBears6]

Congratulations! I’m looking at V & O as my next treatment. Wishing you all the best!

[Stamphappy]

Wonderful news!!! So happy for you 😃 Thank you for sharing with detailed information 😊 I hope you enjoy a really long time off meds & worry. May your road ahead be filled with everything you hold precious Dexterdoggg!

[Poodle2]

Fantastic! Hope you have a long remission ahead of you 🙂cycle 9 here.

[meganbo]

I am so excited for you! I am one year in on Acalbrutinib and Venclexta for a 2 year program. This was tested and proven out of MD Anderson. 2 year program since I was already on the medication, if not would have been 1.

I started with the 4 pills and down to 2 pills, but all sighs pointing positive. So happy for you! Congratulations!

[Smakwater]

Congratulations Dexterdoggg!

Definitely press the doctor for a measure of efficacy. That is the purpose of treatment. I would have expected that they were monitoring the effectiveness during treatment as well. If not, it would seem pointless to take the drugs only to see if they could be tolerated.

I presume the efficacy is sufficient, and eagerly await to hear that you have a successful remission!

Nice not to have take drugs every day,

JM

[Ghounds]

Congratulations! Wishing you a long, healthy and happy remission.

[studebaker]

CONGRATULATIONS and looooooong…… remission 🎉

[skipro]

I'm happy for you!!

I am looking at starting the same treatment.

How many side-effects and what sort of side-effects did you have?

did you have any infections like Covid or other.

thx

ski pro

[Dexterdoggg in reply to skipro]

Hello skipro,

The side effects that I had were minor, at least to me. My first infusion I had a reaction to the Obinituzamab after about 20 minutes. My ears started getting warm and it traveled to the top of my head. I was also a little nauseated. They stopped the infusion, gave me some pepcid and a hydration IV and started the Obinituzamab about 30 minutes later. I didn't have any other reactions to the infusions after that. As for the Venetoclax, I really didn't have any side effects other than Neutropenia from the combination of the drugs. They paused the infusions twice for a week and I required 3 Neuprogen shots once because of low numbers. I did contract Covid 5 days before the end of my last cycle of Venetoclax. I was given Paxlovid and I was fine about a day after starting it. Feel free to ask any other questions you may have.

[skipro in reply to Dexterdoggg]

wow. All good news on all accounts

[MickUK]

Great news - congratulations!

[Heeler0507]

Fantastic! Congratulations on getting through, I hope you enjoy a long remission. I am currently also on V&O regime, only at Week 3 of the Venetoclax ramp up, but so far all good. My numbers are already very pleasing, I just hope I tolerate the higher dose of V ok for the remainder of the 12 month treatment plan. At this point, I definately feel better than I did pre-treatment.

[Gradyboy in reply to Heeler0507]

I was worried about the full dose when I started. Two and a half months in on full dose and still no side effects except occasional constipation. That may not be a side effect pretty normal for me. I take them with dinner and can't even tell I've taken anything. Best of luck to you. Feel free to ask me any questions.

[Heeler0507 in reply to Gradyboy]

Thanks Gradyboy, that's great news, I hope I get through unscathed as well

[Gradyboy in reply to Heeler0507]

Did you have large lymph nodes before starting treatment?

[Heeler0507 in reply to Gradyboy]

Yes, quite large ones in the neck as well as under my arms and also in the abdomen the neck and underarm ones subsided very quickly I guess I won't know as much about the abdominal ones until they next do a scan. I had a bad reaction to the obinutuzimab first up, but all good for subsequent infusions so far.

[Gradyboy in reply to Heeler0507]

I also had large nodes basically everywhere. The Venclexta took them away fast. What I was wondering is do you have strange feelings in your nodes since starting Venclexta? Mine had a weird feeling that is hard to describe. I asked others and some did and some did not. Just curious if this is common. It is almost like you feel them shrinking.

[Heeler0507 in reply to Gradyboy]

No, can't say I've felt anything like that, just know they have shrunk because can't physically feel the lumps any more, but no feeling anything on the inside. Was that during the infusions that you felt that?

[Gradyboy in reply to Heeler0507]

No it started with the Venclexta. It was a kind of prickly feeling. They shrank some with the O infusions to start but when I started the ramp up they went away fast. By the end of ramp up they were pretty well gone. Mine were very large on my neck and underarms. And they went down fast. I hope you do great. This treatment has been a breeze for me so far. I just turned 61 no other health issues.

[DinosaurDad]

Congratulations! Wishing you a great long remission!

I'm on V&O also, 6 months in. Has been fairly smooth sailing, few side effects, have needed Neulasta shots and Ivig every other month lately...but things are trending in the right direction. I'm in a clinical trial at Sloan Kettering, they will be testing for "undetecable minimal residual disease" and thus I may be able to stop treatment before the standard 1 year time frame.

It's very encouraging that (a) this seems to be a good protocol, and (b) there's a good possibility that it can be repeated. I guess we'll just have to watch as all of the trial work continues to progress.

[Gradyboy]

Congratulations!!! Hopefully this treatment will last for many, many years, if not forever. I just had my fifth cycle of Gazyva on Monday, one more to go. Then about a thousand more pills and I hope I will be joining the off treatment group.

[FiiaMaalla]

Congratulations Dexterdoggs! Thank's for sharing your experience! It's good to hear it as I started O&V treatment in half January and ramping up with Venclyxto at the moment.Feeling fine, except foggy brain in the mornings and dizziness due to low blood pressure. Blood marks are looking great at the moment.

[chif888]

Congratulations. Thanks for the great news that would cheer up all of us in the battle. Hope you will enjoy life more, free from the CLL harassment.