Blood testing

[Gradyboy]

I am currently on (O&V) with one more (O) treatment march 20th. Blood counts have all been in normal range since starting treatment. I have blood draws every week is this the normal for this treatment? Will they ever spread out to atleast once every two weeks? It would be so nice to have atleast two weeks in a row not having to do anything except take my pills. What have your experiences been with blood work? My ANC on Thursday was 4.5 and runs between 2.6 to 4.5 consistently.

[AussieNeil Administrator]

Hi Gradyboy,

The frequency of testing should indeed be adjusted based on your risk profile. I've seen mine vary from daily to every 3 months. If all your blood test results are in range or trending as expected, then why not ask your specialist when you can expect testing less often? Your risk of developing neutropenia will be reduced now that you are nearing the end of your infusions.

Neil

[Gradyboy in reply to AussieNeil]

I have a check up Thursday and will ask. It just stresses me out every week. It would be nice to have a little break between teat. Maybe after my last infusion he will stretch them out.🤞

[HopeME in reply to Gradyboy]

I’m starting my fourth cycle in early March. After my third cycle I went to a monthly blood test. I had an accelerated V ramp up over a week during cycle 2 so my scenario is perhaps different to those who ramped up weekly over five weeks. In any event, I will be asking the same question you are: what will be my blood testing/visit frequency be moving forward? I’m hoping to get back to every 3-4 months but the earliest that can happen is after my 6th cycle monthly O infusion which will be finished in early May. I agree having a break is so important from a mental health perspective. The past month has been refreshing.

Best,

Mark

[Gradyboy in reply to HopeME]

Thank you for your reply. I have an 8 week check up Thursday and will be pushing the issue. Hope you are tolerating treatment well. I haven't had any issues to speak of except constant worry. I am working hard to get that under control.

[HopeME in reply to Gradyboy]

All is well with me. No infections and no side effects from the V + O treatment. In fact, my kid had Covid two weeks ago and it bounced off me. I don’t know how that happened but I’m thankful. I feel fantastic physically. My biggest issue is the mental stress around appointments.

At my next appointment I’ll have a blood test, CT scan, BMB, doctors visit and a three hour O infusion. I’m saddled with the CT scan and BMB due to the fact I was on a clinical trial for accelerated V ramp up. I’ll need a stiff drink after that visit! I start at 6:30AM and leave around 5:00 😩😩.

Best,

Mark

[Poodle2]

If your blood counts are all in a normal range over a longer period of time, it seems they could be adjusted. I started off with 3-4x a week, 2x a week, once a week, once a fortnight, once a month. I think that by cycle 4 my bloods were stable enough to be tested once a month only. I am still on a monthly testing even though I know some go to 1x in 3 months once the O is over. I would definitely discuss it with your doctor, 1x a week if everything is going well does seem to many tests indeed.

[stevesmith1964]

Hi

I had O and I back in Nov 2020 when I was diagnosed at stage 4. Weekly bloods during cycles. After 6th cycle I moved to monthly bloods and that will continue for ever, insurance company insist.

[Gradyboy in reply to stevesmith1964]

Are you off treatment now?

[stevesmith1964 in reply to Gradyboy]

No. On twice daily acalabrutinib plus antivirals and antibiotics, will be for ever or until they stop working. Currently getting 6 cycles of ivig and filagastin to help Igs and neuts through the winter.

[Hilo13]

I am in cycle 7 of V&O am now on monthly bloods the week before my next cycle. Speak to your team I hope the visits decrease it is nice to have a week or two without visits . I wish you well

Christine

[Gradyboy in reply to Hilo13]

Are you done getting the infusions?

[Hilo13 in reply to Gradyboy]

Yes two weeks ago . Just the venetoclax now and anti virals . Had a few injections for the low neutrophils and now monthly bloods and monthly consultant visits .

Chris

[Jujy]

My husband is almost exactly where you are - last infusion is March 13th. Since he finished his V ramp-up, the blood draws coincide with his infusions (once a cycle). Last visit, they said they will probably set up a visit for April and then see how often they want him to come in.

[Gradyboy in reply to Jujy]

We are almost exactly on the same schedule. How is he doing with the treatment?

[Jujy in reply to Gradyboy]

His numbers are normal and the treatments have been fine but he feels kinda meh. Possible unrelated complications with gallbladder and GI. Starting to seem like he will never feel “normal.” Hopefully someday the snow will melt and he can ride his motorcycle again. I hope your healing is going better than his.

[Gradyboy in reply to Jujy]

I have been very lucky so far. I don't seem to have any side effects from treatment. I guess some days I feel a little tired after work, but that isn't anything new. I feel like now if I feel anything I instantly think it's CLL related. Could be I'm 61 and just getting old. My husband doesn't have any medical issues but seems to have more aches and pains than I do. My husband is also waiting for motorcycle weather here in Michigan. He is an avid dirt biker. Also, physically I feel good, emotionally has been my hardest obstacle to overcome. The what if's, the cost ect get to me.

[DinosaurDad]

I'm 6 months in on V&O. Very frequent testing (weekly) during O infusion period . I had a couple of Uti infections that required more frequent tests. Since cycle 4, my blood tests have evened out and I'm going once a month. Still getting ivg infusions every other cycle. Few side effects..Venetoclax has worked well for me. I too am in a clinical trial...once I reach umrd, my doc has the option of stopping meds even if it's been less than the one year standard duration of treatment. Makes me a bit nervous but we'll see.

[Gradyboy in reply to DinosaurDad]

I'm kind of wondering if my Dr is thinking about.ensing my treatment early also. I think I personally would opt to continue for the full year. It feels like a safety net to me. I would consider cutting dose in half though. My blood counts have never been that bad. They were in normal range since the first infusion. No infections or illness. My lymph nodes were huge and that was my BIG issue.