I am the CLL Leukemia patient from 2009 who had no treatment until now. I was stable for 10yrs until 2020 when Covid hit the world & then my WBC started climbing from 20’s (2009-2019). 2021 35K, 2022 49K, then after 2 Sinus Infections Oct 2022 80’s where I stayed & then also 2023 my Hgb dropped to 9.8-10.8 & Plts 70-80’s. I noticed more generalized pain, SOB, Night Sweats, Fatigue, Inflammatory Bowel Syndrome, etc. Funny thing is my palpable lymph nodes are smaller but internally from the Cat Scan Sept 2022 showed multiple inflated balloon like structures through out my body. I have gone 100% Plantbased/Alkaline diet & that has reduced much of the symptoms. I listened to all 50 different points of views here & thank you all so much, I watched the experts on Webinars, spoke with friends & family plus prayed on it. I also had a dream with my friend Niecy who just passed away telling me not to wait too long so I decided to take this leap.
I tell my doctor on Monday after 6 months of his bullying & guess what he says ‘well if your numbers are too good the insurance company may make you wait’. I said oh hell to the no, we are gonna do this now. I left there feeling like I got punched out. Well luckily, I guess, my Hgb 10.8, Plts 70’s & WBC 80’s. Samantha the pharmacist called Tuesday to say I was approved & then just now Wednesday to say that I was granted a 25K financial assistance card to cover the copay of $700/month that will be renewed every year. Look at GOD, I was so stressed that I didn’t sleep in 2 days. I have a doctor pushing me & when I finally say yes, he pulls the rug from under me. I know he doesn’t like my trust in Natural Remedies over Big Pharma, hopefully we can resolve it or I can ignore his prejudice but I will be searching for another oncologist. Just wanted to keep everyone updated & please keep me in your prayers as I pray for each & everyone of you🙏🏾
Written by
CoachVera55
To view profiles and participate in discussions please or .
No in Oct 2022 I did not qualify for treatment but he laughed at my natural remedies that kept me good for 13.5yrs. While under his care by Dec my WBC jumped to 80’s (previous high 49), Hgb dropped from 11.9-9.8 & Plts 90-70’s. I was already experiencing inflammatory bowel syndrome & my Sept 2022 showed water balloons throughout my body. He acted like my delaying/refusing treatment was ludicrous. But after listening/research/prayers & losing my friend who demanded that I don’t wait too long. I said ok & he said if my bloodwork is too good that insurance might refuse. I said no, we are doing this. Luckily I met the criteria Hgb >100, Plts>100, WBC doublying, Night Sweats & increased fatigue. He just wants to torture me, I guess my faith in Natural Remedies over Big Pharma is his issue with me🤷🏽♀️
Jacob called from the Specialty Pharmacy & said that it will arrive tomorrow Thursday & can be delivered Friday. My only choice now is to pick it up or wait for the delivery. I am starting Thursday or Friday. I made that the decision before seeing the Oncologist. I was thrown off when he said my bloodwork may be too good for the insurance to approve after 6 months of pushing. I have a 3 month order, its not a good fit with this doctor, but I wasn’t gonna delay my treatment at all. Now its time to look for a doctor that I am more comfortable with. He contradicts himself & I can’t deal with people without integrity & don’t support my health practices. This is a whole new adventure & I need a supportive doctor by my side.
But didn’t your current doctor write the prescription for the drug that you are starting?
Will he continue to prescribe it to you if you are not still his patient or do you plan to stick it out and have the next doc pick up where the last one left off.
My experience so far has been that I am more up to date with CLL drugs and treatments than all the hematologists I have seen except the CLL specialists.
The general oncologists are overworked and are treating so many other cancers that they seem clueless sometimes when I ask questions.
Thankfully they only monitor me and the only doctor that I let treat me is a Cll specialist from MD Anderson.
Dr Rhodes is the CLL specialist but she is too far from me & my present Onc refers to her. I hear that she is leaving Northwell & going to Robert Wood Johnson where I first started. Also in ASH my previous MSK Onc Raajit Rampal was videotaped & I would feel sick just driving so far to see him. Nah I pick Dr Qun Dai & she is in the same office with my present Onc. It might be just a case of immaturity for me. We are talking & if I don’t agree he stumps out the room, I can’t deal with that. I am the patient & I need to be heard, respected & given the best care. This doctor lied to me 4X on our first visit. I have seen him 5 times & he talks out of both sides of his face. I can see that he is lazy & will fudge things as needed. This new doctor is in the exact same office that I love, free parking, big exam room (last Onc caught Covid in her small home office) & they have a patient portal. Those are mine non negotiables. My meds are ordered for 3mos, the grant covers my meds for 1yr & I should not have any issues switching. But I am a born Patient Advocate, if anyone objects. I have rights & will exercise those rights. I’ve had 3 male doctors but was with my previous female Onc for 10yrs & I honestly prefer a woman. Plus she has 30+ yrs experience over his 15yrs. He acts so frustrated with me & I am not there to babysit so I got what I needed & I am out✌🏾
Vera, since you are a nurse, you may have already read the studies on zanubrutinib that led to the approved dosing schedules, and may have already decided between the 160 mg BID, or 320 mg QD dosing schedules. But, in case you haven't had a chance to research this you might want to take a look at the two references below.
The ALPINE Clinical Trial (NCT03734016) which compared zanubrutinib to ibrutinib, reported that, progression-free survival was significantly longer among CLL/SLL patients who received zanubrutinib than those who received ibrutinib.
“Enrolled patients were randomly assigned in a 1:1 ratio to receive zanubrutinib at a dose of 160 mg twice daily or ibrutinib at a dose of 420 mg once daily until the occurrence of disease progression or unacceptable toxic effects.”
“Zanubrutinib has been shown to have high (>90%) steady-state BTK inhibitor occupancy in peripheral-blood mononuclear cells and lymph nodes. These occupancies are higher and more consistent than those indicated by the limited reported data on ibrutinib and probably contributed to the observed superior efficacy in our trial. In addition, in contrast to ibrutinib, zanubrutinib maintains adequate drug levels throughout the treatment interval to inhibit any newly synthesized BTK.”
Zanubrutinib has a “Higher steady-state BTK occupancy and more uniform plasma levels over a 24 hour period.”… At the twice daily dose. See the results below from a comparison of once vs twice daily dosing.
Zanubrutinib or Ibrutinib in Relapsed or Refractory Chronic Lymphocytic Leukemia
Earlier work on dosing of zanubrutinib compared a 160 mg twice daily dose with a once daily 320 mg dose, reported the following:
“Nodal BTK occupancy was >95% in 50% of patients receiving 320 mg once daily and in 89% of patients receiving 160 mg twice daily (Figure 2B). Based on the higher proportion of patients who achieved >95% sustained BTK occupancy in lymph nodes at trough concentrations of zanubrutinib, the 160-mg twice-daily regimen was determined to be the recommended phase 2 dose (RP2D).”
Phase 1 study of the selective BTK inhibitor zanubrutinib in B-cell malignancies and safety and efficacy evaluation in CLL.
So, it is possible that the result of the Alpine trial that showed a superior progression-free survival of zanubrutinib is because the BID dosing led to greater lymph node BTK occupancy than the QD dosing of ibrutinib. Something to think about.
Yes I am a Critical Care Nurse 2000-2021 but never did Oncology. I will take it every 12hrs & Oncology said that there were no drug interactions with my prescription meds/vitamin/supplements. This is scary 🙏🏾
I would recommend you check out the US based CLL Society website (cllsociety.org/) and join the closest chapter. It doesn't cost anything. There likely are Zoom as well as in -person meetings. The people who live near you will have opinions as to who is a good doc, what their practice style is, who takes various insurances, etc. If you are anywhere near, or willing to travel to, a major medical/research center, consider seeing a nationally known CLL Specialist yearly or so, with a local hem-onc to do routine monitoring/prescribing. The good local hem-oncs are happy to have input from them. IMO this is the best of both worlds if you aren't close to a major center.
I'll toss in, consider waiting until Mon or Tues to start unless you are confident you can reach someone after hours/over the weekend if necessary. It's not likely, but it's possible, you may have a side effect or question the first 48-72 hours as your body is adjusting to the drug. It's nice to have someone available to call, instead of worrying through the weekend.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
My doctor says I have CLL
TO TREAT OR NOT TO TREAT??
Imbruvica
New DX with CLL
CLL and US VA
