I flew in yesterday for this week’s treatment. As usual, I planned a little adventure and walked back to Grandview Avenue for dinner and then sat in a called Stauf’s. Columbus has a great coffee culture, and I have been to six throughout my various trips.
Today, I had blood work and the 4th of 8 obinutuzumab infusions (in addition to continuing to take ibrutinib and venetoclax). I am pleased to say I have officially made it through my week over week trips to OSU, and my next 10 visits will be every 4 weeks. I don’t have to go back until October 11. Hurray!
My white blood cell count is low, as are my neutrophils, red blood cells and hemoglobin, but not so low that they introduce any sense of worry. My absolute lymphocyte count is in normal range for the first time since I was diagnosed, and my platelets remain normal. My lymph nodes are mostly gone. My heart murmur seems to have disappeared, and my blood pressure is still in normal range. Not all of my counts are perfect, but everything is heading in the right direction. Margaret Price, Dr. Byrd’s “right hand woman,” declared I got an A+, to which I replied that’s good, because that was my goal.
Again, I got to see some new friends who are also participating in the study. Unfortunately, most of them aren’t on my schedule so I don’t know when I’ll see them next, but we will keep in touch electronically.
That’s all for now. Let me know if you have any questions, and thanks as always for your support.
Ellen
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thompsonellen
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Hi Ellen, I got an A+ and Smiley face from Dr Byrd on one or two prognostic blood tests April 2014. Gave the paperwork to my local Oncologist and he chuckled at that. Today I am on my way to NIH. They cancelled my BMB and now only need CT Scan. My first one ever. No flight for me it is 2.5 hour car ride. Best Wishes..... Tom
Glad to hear I wasn't the only one with smiley faces and A+ from Dr. Byrd this year. Wasn't sure if he was appealing to the fact that I am taking college courses. Just his style apparently, lol!
Once I need treatment I can consult with NIH for available trials. But appears I am progressing slowly, and after yesterday's appointment, my next appointment is Sept 14 2017 (one year away). Yesterday was first CT Scan for me. Swollen Lymph nodes in groin are between 2-3 cm both sides and all others are less than 1cm everywhere. No spleen enlargement.
Lymphocytes are now 39 K/ul up from 36 K/ul six months ago. The IGG are 769 mg/dl down from 843 mg/dl six months ago (steady march downward). B2 Microglobulin now 1.9 up from 1.7 six months ago. RBC 4.72 M/ul (always at that level since diagnosis) HGB 15.0 g/dl (always at that level since diagnosis) Platelets 211 (always at that level since diagnosis).
No B symptoms. Diagnosed CLL Nov 2014. Sort of a Newbie! (((Mutated IgVH, No Zap 70, NO CD38, Ki-67 is 0, and Normal Fish......all measured at OSU March 2015.)))
Truthfully I would like to knock my disease down, but docs will not treat low risk CLL patients unless there are symptoms. Not even for the early treatment front line trials.
If you know of one let me know!
I Had a CT Scan yesterday and found small irregularity with heart that I will need to check out. I think my (avg 3 / day) beer drinking has caught up with me! Or could be my father's family genetics are setting in. I exercise a good amount so I was little surprised.
My Dad has a defibrillator installed so when his heart beat gets low, the defib will send out mild stimulus to increase his beats. Dad, unlike me, is not a beer drinker, hardly ever. Instead he reads the Wall Street Journal front to back but no exercise. My mom, and her mom, are the ones with CLL, now me. "Mon Dieu" ..... Mom is cajun french, and she would say that all the time when I was growing up.
So no Sandi .... I am not in Acalabrutinib trial yet. Tried to get Mom to do it, but found out that NIH Acalabrutinib is for front line patients not ibrutinib intolerant like Mom. She will start idealisib (Zydelig). FYI…. my grandmom never needed CLL treatment. She died at 94 with heart ailment.
HOW ARE YOU DOING WITH THE ACALABRUTINIB TRIAL ?
IS THAT YOUR FIRST TREATMENT ? I think that is trial requirement correct?
DO YOU GET HEADACHES WITH ACALABRUTINIB ?
I recall you went with Acalabrutinib over OSU combination trial. Is my recollection correct?
Dr. Furman likes to say "slow and steady wins the race." At least right now it does...I think I paraphrased his sentiment and hope I did it correctly.
Thanks for such a newsy reply. I do know of the natural history study but I was not enrolled as my time to first treatment would have been less than a year. I was diagnosed last July with lots of not so great markers (complex karyotype headed by 11Q, Notch 1, Unmutated, Zap 70, etc.) I probably was at stage 0 for at least 5 years as my annual physicals showed a slight increase consistently for absolute lymphs but nothing else).. glad I didn't know!
I had lots of nodes in and out (not huge), night sweats, fatigue and progressing increase of wbc's and absolute lymphs. Never had an enlarged spleen.
I loved OSU and Dr. Byrd but could not disrupt my whole life for that trial (you are correct... I had to make a choice) and I would like to see how that goes or other combos for when acala doesn't work anymore.
I am doing well on Acalabrutinib. Started the trial mid July and now going once a month. Starting Dec., every 3 months. Lymph nodes way down, numbers down by 30K after initial spike. Had some headaches initially, but they weren't bad and now gone. Still fatigued (slightly anemic) but otherwise no side effects.. yay. Hoping acala puts me into at least partial remission until they get all the combos sorted out.
The acalabrutinib trial is open to r/r or treatment naive but must have 17P, TP53 deletions or Notch 1. I got in because of Notch 1. I feel very, very fortunate to be in this trial as I wouldn't do well on FCR or BR and I was concerned about side effects of Ibrutinib.
I live in Northern VA (near Dulles Airport) so commute is wonderful to NIH. I am so lucky.
My Dad was diagnosed at 85 with CLL (11Q) - he died at 90 last year in his sleep from heart attack.
Good luck with the heart issue and all. Keep me posted please and best to you,
We go off all drugs entirely if we reach MRD- which is one of the good things about this trial, i.e. the hope that you aren't on meds indefinitely. I am feeling like it's MRD- or bust, so I expect to be off drugs. I believe we stay on venetoclax and ibrutinib if we don't.
Thanks, Ellen. Do you have any idea what amount is in the protocol - now and for the hopefully - unlikely possibility a patient will need a maintenance dose?
Right now, it's obinutuzumab 1000 mg (when we get the infusions), venetoclax 400 mg (4 pills), ibrutinub 420 mg (3 pills). I have no idea what a maintenance dose would be. I haven't really discussed that with anyone officially. Other trial patients have shared you would just continue with the meds, and I wouldn't be surprised if it's the whole dose.
So looking forward to my medical costs going down next year. I feel like my out of pocket will approach the GDP of a small nation. Just kidding, but you get my point.
Just heard they (Medicare Medicade) are trying to get our incredible WILLS EYE to stop inpatient services. I'm waiting for the hatchet to fall on my ibrutinib coverage. COPAY help just dried up from an important grant source. I am double insured yet it is never enough with the Brand drugs and don't get me started on the donut hole.
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Update- My Imbruvica plus Venetoclax Captivate trial. 
FCR Treatment, 4 cycles or 6, follow up
Update #4 “ Treatment Begins. “
Update: I/V CAPTIVATE Fixed Cohort Trial - 4 years later
