Update on my CLL diagnosis

[tenniselbowz]

Hello,

I was diagnosed with CLL in Oct 2022 and was told I had # CLL/SLL with extensive bone marrow involvement, trisomy 12, p53 wild-type, IgHV-mutated, Rai stage 3. My oncologist at the Cancer Center put me on the O and V treatment which started in Dec 2022.

I finished the O in May 2023 and the V in Dec 2023.

I've had 3 bone marrow biopsies, one at the beginning and one in the middle of treatment and my last one was 2 weeks ago. The final result came back Month 15 BMBx showed MRD-0 CR with no fibrosis or dysplasia. All blood counts were normal except ALC was just below normal at 0.7 but my oncologist said that should start improving over the next couple of months. The Flow Cytometry showed no B cells and no evidence of B cell non-hodgkin lymphoma. They also did clonoseq which is a very sensitive blood test and it showed no residual clonal cells.

From my follow-up visit on 4/3/24, He wants me to continue taking the acyclovir for the rest of the year.

PLAN:

--Lab monitoring every 3 months: CBC w/ diff, CMP, LDH, RTC w/ me in 6 months.

--Annual Clonoseq testing by peripheral blood.

--Kent will pursue Galleri testing, and contact us with results.

There is this comprehensive blood test called Galleri and it checks for any cancer markers in the body. This is not covered by insurance but is well recieved and sanctioned by the Mayo Clinic. It costs around $900 but I think its money well spent.

The only thing I have been experiencing is positional lightheadedness and dysequilibrium when I get up and walk or just stand. I feel like I'm off-balance or dizzy but not spinning. This started in October 2023, about 3/4 of the way through my treatment.

I was Evaluated by Cardiology 1/29/24; Orthostatics negative, ekg normal, echo normal. Seen by Neurology 2/15/24 and 3/15/24, who noted diminished vibratory sensation. Low suspicion for peripheral vertigo. Brain MRI w/ gadolinium 2/8/24 was normal. MRI Cervical Spine 10/30/23 with degenerative changes, narrowing at C4-C7. EMG 3/15/24 without abnormality.

Etiology of orthostatic LH/imbalance issues unclear. I've seen Neurology and Cardiology, with multiple studies including brain/C-spine MRI, TTE, EKG, EMG, all unrevealing. Neurology notes diminished vibratory/positional sensation on exam. The timing of symptom onset is suspicious for chemotherapy-associated neuropathy, although this is not typically associated with Obinituzumab or Venetoclax. Micromedex does report dizziness/vertigo occurring with Venetoclax.

I also saw an ENT and they did several tests to check on my vestibular system and hearing. The audiology tests were normal and they checked my inner ears to make sure they were fine as well. They also did a VNG test to check on any peripheral vestibular dysfunction where they check on eye movements while applying cold and hot air to each ear and you wear these special goggles and follow these dots of light. The results were normal and showed no issues with my vestibular system but they did detect abnormal performance on the Optokinetics test that could suggest Central Nervous System involvement. Not sure what that means or if it is a result of the chemo.

If anybody in this CLL group has experienced anything like this I would really appreciate your experience, thoughts and how you (hopefully) overcame it!

So all in all good news and I am truly thankful & blessed for this group and all my friends and family who prayed for me throughout this past year and a half. Faith is so important and trusting/relying on God to see you through and know you are not alone.

Regards,

Kent

[HelloCLL]

Hello Kent. Thank you for the excellent, detailed reporting of your successful treatment. I hope that your vertigo problems will resolve with time.

I don't have this issue, but my husband occasionally feels this way when he doesn't drink enough water or hasn't eaten in a few hours. He does not have CLL.

It's sounds as though you have investigated every possible cause, and still don't have a definitive answer.

Sending healing thoughts, and my thanks for the hope and detailed testing information.

D.

[tenniselbowz in reply to HelloCLL]

Yes I stay very hydrated. That was the first thing my doctor asked. I wish it would have been that simple!

[LeoPa]

What you are describing sounds like postural hypotension. Are you on any blood pressure medications? The easy fix is to change bodily positions slowly. Do not get up abruptly. Do it slowly. Sit up, wait a few seconds, stand up slowly. Once you stood up, lean against the wall and do a few wall push-ups . This to speed up your heart rate a bit. See if this helps.

[tenniselbowz in reply to LeoPa]

Yes I spoke with my doctor about Orthostatic Hypotension but its not that becuase the feeling is there constantly when I get up and stand/walk. I try doing it slowly but no affect. I still feel the dizziness and it never subsides. If it was Orthostatic Hypotension it would eventually pass. I also saw a cardiologist and had teh 12 lead ekg and echo done and blood pressure and all were normal.

[xv750]

I never went through all that. I was on Brukinsa. They told me it is not a chemo pill, First week was rough, after that felt better all around. This is my third month and blood work has improved in everything, I had to stop last week because of dental surgery. I will not go back on them until I really have to. There are more side effects than they tell you about. I feel better since I have gotten off of them. This is just my experience, I am sure it effects every one differently.

[CoachVera55 in reply to xv750]

I am curious, did you just decide to not resume treatment or your Oncologist said to stop? I was told that its a longterm treatment to stop only if it no longer works or the side effects are intolerable. I had to reduce to 1/2 dosage myself, 80mg twice daily but stopping completely seems risky🤔 My labs are stable now with Hgb 10.8->12.6, WBC 81->9 & Plts76->109 (105 for a decade tho). Did you go through Withdrawal? I experienced Rigors at 4 days off the drug…

[tenniselbowz in reply to CoachVera55]

No my oncologist said that is the protocol for this treatment plan. Now maybe the plan was specific to my particular diagnosis but in general you are on the O for 6 months and the V for a year. At least that's how they do it here in the US. I guess there is no point in continuing to take the V if there are no more monoclonal B cells detected in the bone marrow or blood. That's just my take, your milage may vary!

[Skyshark in reply to xv750]

xv750 Three months is a very short time to be stopping Brukinsa at, it's just about reached a stable condition. Interested in how that goes.

I had V+O and had to get dental work before starting treatment as the treatment might have affected neutrophils and platelets preventing any surgery.

[xv750 in reply to Skyshark]

Had to stop, My face looked like someone from a horror show! 2 black eyes, black and blue everywhere, mouth bleed for 3 days!!! Called the pharmacy that supplies the Brukinsa and told me to stop taking it now, The next day I had already started improving,

[xv750]

I stopped on my own because of upcoming cataract surgery and possible back surgery, I don't know if it dangerous but been off 3 days now and feel good. See my oncologist Thursday and tell him what happened and needs to do more research so this will not happen to someone else

[SofiaDeo in reply to xv750]

I hope you don't get nodes flaring from stopping the BTK. It happens to some, not all.

If your side effects are making you miserable, please speak with your doc about changing meds. You're in the US, so most likely can. I know firsthand how they "push" for you to stay on something that's working, and seemingly ignore or minimize symptoms you report. If you haven't told your onc about all your awful side effects, please do so this week.

I've been on one drug with terrible side effects, several with virtually none. There's probably no reason you *must* stay on this one specifically. Ask! Nowadays I'll give a drug 3 months, if things don't settle down I will ask to switch. I went through most of a year of hell once & won't willingly do it again, only if there is no other option.

[Danie50]

yes good news!