O + V: Update 4!

[DRM18]

Hi everyone,

It’s been a few months since my last update; I’m sure you’ve all been waiting w/ bated breath (lol).

Anyhow I finished my Obinutuzumab infusions in early July. Got to ring a little bell & aww-shucks my way through an embarrassing standing ovation. Kinda cried a little bit too, actually, as I knew I’d really miss the chemo nurses, who were so calmingly attentive.

Those infusions were like little day-cations for me: I’d pack up some music & books & food & thermoses, then relax in a recliner for 6 hours & read & meditate & listen to records & doze. Never had a problem with the meds. I was fortunate.

I’ve been on Venetoclax since late February, & will continue to be on it until February 2021, I guess. Ramp-up went fine, been on the max dose (400mg) since I hit it in March, I think. Haven’t noticed any major side effects, really. Again, fortunate.

Labs have always been on the low side of normal, or the high side of low, but largely stable. Today they improved a bit. (See attached pic.) Don’t know why, but I’m not protesting. I’ll take it.

Feel good enough to run again: I’m up to 4+ miles per day, 5 days a week, pre-sunrise. I also lift some weights & play the drums for about an hour each day. (Groovy.)

Don’t mean to bore anyone here. A year ago, my neutrophils were at .2, & I had swollen glands, a blood clot in my left leg, multiple pulmonary embolisms, & pneumonia. (Read all about it in my earlier posts.) I was terrified, & I found immense reassurance reading posts herein letting me know what I might expect from various treatments.

So, this is my experience, is all, which I hope might help ease someone else who might be apprehensive or hopeless, as I was. But of course everyone’s mileage will vary. But I do hope y’all’s are smooth as can be.

—Dave

[Canuck901]

Wow fantastic , that’s amazing.

Did your hgb and RBC fall when you first starter Venetoclax and then start to recover after a few months ?

[DRM18 in reply to Canuck901]

Hi Canuck,

Yes they did. All the reds fell to just below normal. Stayed there for a long time. The doctor wasn’t worried, though, so neither was I.

[Canuck901 in reply to DRM18]

Yeah same with my dads it’s a concerning I guess but the Doctor said that’s normal but hopefully the bounce up in a few months when his ramp up is complete

[WinJ3]

4 + miles daily ! That is amazing 😉!

[Sushibruno]

That's amazing Dave congratulations🙂👍.

[DRM18 in reply to Sushibruno]

Thanks! I hope you found some solace in my little story ...

[Sushibruno in reply to DRM18]

🙂👍thank you so much!

[Loveroflife]

Happy for you! I’m right behind you in my treatment and doing well. Just finished my infusions this August. But now I feel like I had better get on the exercise circuit cause you are putting us all to shame.!

[DRM18 in reply to Loveroflife]

Ha! If you can swing it, go for it. Nothing better for us than exercise, whatever we can manage.

[AussieNeil Partner Administrator]

Brilliant!

Thanks for sharing your blood test report. It's good to see that lymphocytes and neutrophils are given in absolute counts as well as a percentage of the total WBC. The monocyte and eosinophil reports are unfortunately distorted because they are only reported as a percentage. Monocytes sound worryingly high at 16.5% compared to the percentage range of 3 to 11%, but in absolute terms it's a slightly raised count of 0.92, compared to an absolute reference range of 0.2 to 0.8. Nothing to worry about! Your eosinophils at 3.7% (percentage range 0 to 3%) are actually fine! (The absolute range for eosinophils is 0.02 to 0.5 and yours calculate at 0.2.

This just goes to show how both low and high lymphocyte counts misleadingly distort the percentages of other white blood cell types. See: healthunlocked.com/cllsuppo...

Ignore percentages!!

Neil

[DRM18 in reply to AussieNeil]

Talk about brilliant, Neil—look at you throwing numbers around! ... But honestly, last December-January, I learned so much necessary information from your posts about ANCs, percentages/absolutes, etc. (& I’m still learning—from everything you type up here.) Your expertise is invaluable, sir, & I thank you for it.

[Sushibruno in reply to AussieNeil]

🙀🙂😂

[country76]

Amazing!!!

[LovelyLilyGirl]

Wonderful news. I’m on same meds and a bit behind you in treatment. My labs great too! Amazing combo of V+O.

Keep it going!!!

-Sally

[Palmetto]

I am still so confused. Congratulations on your improvement and course. Husband is set to start Venetoclax on the 31st. His results today after 1 Gazyva round is completely normal except for a bit of anemia still going up after AIHA at hgb 12.6 . I just really wonder why he needs to start anything at all. White count 5.6, ANC 5.4, Absolute lymphocytes 1.03 Platelets 155,000 so my question is, why add the Venetoclax with these values?

[AussieNeil Partner Administrator in reply to Palmetto]

Based on data from clinical trials, your husband isn't likely to get a long remission from just Gazyva. Adding Venetoclax should considerably improve his chances of reaching uMRD and a longer remission.

[Palmetto in reply to AussieNeil]

I know you are right. Just hope all goes as well as DRM

🙏🏻

[Thundercat2]

I had 6 months of Gazyva infusions in March and was on Ibrutinib too(part of a trial). I finished my infusions in March and went off of the Ibrutinib after about 4 months as I couldn't handle the side effects. I am currently in a watch and wait mode. This combo put me in a good place not unlike yours Dave. I did not reach UMRD but I think I was very close. I imagine I will be put on Venetoclax at some point too so it's good to hear your news. Sounds like it was a rough road getting there but the pay off is solid! Long may it continue! Best wishes!

TC

[Hidden]

"Feel good enough to run again: I’m up to 4+ miles per day, 5 days a week, pre-sunrise. I also lift some weights & play the drums for about an hour each day. (Groovy.)"

Envious!

(Envy is a virtue, right?)

Congrats, so glad things are going well!

[Ghounds]

I'm so very pleased for you Dave.

[very]

Great news.

jenny uk

[Fran57]

That’s fantastic news, Dave!

My husband may be starting Venetoclax and Rituximab, some time soon, so it’s always good to hear of such positive outcomes.

Well done you!

Fran 😉

[Flute117]

That’s amazing. Thanks for sharing your journey. I am about to start Obinutuzumab in a few days -adding Venclexta a few weeks later. Was diagnosed with SLL in May 2019 and have been in watch and wait mode until now. Hoping for no (or minimal) reactions.

[Siberunner]

Thank you sharing this it gives me hope. I’ve been a runner for years and due to fatigue I haven’t been able to run for over a month. Running has always been my meditation and my life isn’t quite right without it. I hope your treatment remains on track.

[DRM18 in reply to Siberunner]

Thanks Siberunner, ... Just FYI, I’m now running 5 miles a day, 5-6 mornings a week. About to go for one now, in fact ...