Had my last infusion today and all went well.
All my counts were good as well.
Just have to continue with the Venetoclax for the rest of the year and biweekly blood tests for monitoring and another BMB in the fall.
Its been a long winter of hibernation and I am so looking forward to a nice summer with family and friends!
🎉🎉🎉
Cheers to last infusion.🥂 It's a great feeling and just in time for summer. Enjoy!!!
just finished my entire VnO treatments. What a feeling when it’s all done with and the meds worked perfectly. Good luck to you
That's wonderful! Thanks for sharing your journey 😊
Fantastic! I'll hopefully be in your position in July. Enjoy the summer!
End of august for me, that's the whole summer, what a b.... I finish ramp-up of Venetoclax end of May. It's a 4 day week, Monday blood test, Tuesday consultation, Wednesday blood test pm after first tablet at breakfast for increased dose and wait for OK results before going home, Thursday early morning and wait for phone call to take next tablet (at brunch?).
I'm expecting 3 days a month after ramp-up, blood, consultation, IV and 2 days a month for last 6 cycles blood and consultation. Is that right for NHS? Obviously if any blood test shows a problem they will start to do them more frequently.
I guess it depends whether you live close to the hospital. After ramp up my life became much simpler, just 1 day a month for infusion plus weekly blood tests and appointment over the phone. Once my results settled down I moved to fortnightly bloods and appointments.
🎊Great news for your poor veins 🙂
Congratulations.
Excited for you and hope you have a great outcome.
I'm curious why you get the biweekly labs.
I'm neutropenic then had an infusion of O yesterday, and am concerned about worsening neutropenia but have no lab for a month.
Skipro
I don't think that's wise. Your doc is against MRD testing also, so I am not surprised. She seems to do things differently than others. What grade is your neutropenia?
There's a protocol for Venclexta ramp up that requires bloodwork pre & post dose, and 24 hours after, each increase. After induction, the doc chooses the bloodwork schedule. Mine was monthly, I was stable though. No neutropenia or any other toxicities.
My doc is actually one of the investigators running the Majic trial and offered it to me a year ago. I was the one that pointed out that I was relapsed and could not participate. Thought it odd that I was offered a trial I wasn't eligible for. She is very busy in research, 4 of 5 days per week and most of her patients are managed by a nurse for lab, infusions and other scheduling. I end up seeing a PA or NP for most visits and they aren't always on the same page with the doc.
Not sure how to grade Neutropenia, but my ANC has dropped from 7.5 to 1.2 in the past 7 weeks and I'm sure it's going to continue to below the 1.0 that the doc says can be dangerous. I just ramped up to the full 400 mg V and had an O infusion 2 days ago.
With FCR starting in 2018, I had 1 year of neutropenia in the 100 to 600 range with 1700 being the low end of normal at our lab. I had weekly labs, antimicrobials and restrictions added each week based on the count.
At an ANC of 900 they stopped my treatment and my doc would not allow my dermatologist to biopsy what turned out to be an aggressive cSCC that was less than 0.4 mm from the fascia, so high risk for relapse. My dermatologist doc said tht as a CLL patient, my risk of death from the cSCC was similar to that of CLL so I had it excised by my plastic surgeon friend.
I am confident my current CLL specialist doc is brilliant, just not sure how involved she is in the day to day management of her patients, including myself.
I do plan to find out where to go to get a BMB and measurement of MRD at the one year point of treatment.
Skipro
If your neuts are 1.2 your have a Grade 2 Hematological Toxicity. Grade 3 or 4 is when Venclexta dosage adjustments are routinely recommended.
healthunlocked.com/cllsuppo...
I am sorry to hear there seems to be a disconnect between your doc and what the PA's/NP's are doing. I see the support staff often with my specialist, but he always was present initially when starting treatment, and at least twice a year thereafter. And when I have asked anyone about wanting extra tests or whatnot, they generally say "yes" or I am given an explaination other than "we don't do X".
I am assuming it was a platelet reading that had your doc not wanting a biopsy. A sterile cut/incision from a biopsy is very low risk for infection. If they can safely be done in AML patients undergoing treatment, they likely can be done for us.
nature.com/articles/s41598-...
Low platelets not requiring transfusion don't seem to be a contraindication for a skin biopsy. With our risk if skin cancers, and SCC being potentially aggressive/invasive, I would push back hard against a decision to not do it, if it ever comes up again. Thank goodness your plastic surgeon friend removed it.
"Currently, there is no platelet transfusion threshold for performing a skin biopsy, and we are not aware of previous reports in the literature regarding the safety of this procedure in the setting of intensive chemotherapy for AML."
You could always just go get yourself a CBC w/diff at a local lab. I made sure I had one every 3 months. Whether that was through the CLL Doc, my GP or a trip to a private lab locally. Like lab corp, lab quest etc.
I knew with us CLLrs, its mostly about the bloods in watch and wait. So if I got the cbc every 3 months. I could look at the numbers and then not worry.
That's awesome. I'm so happy for you. I have two Obinutuzumab infusions to go! Enjoy your summer, fall, winter, and spring.
Monoclonal antibody infusion
Good experience with Regeneron infusion
IVIG Infusions Suspended - Covid
3rd Rituxin infusion completed.
