Hi everybody. 1st post here. Was diagnosed in August, 2018, W&W.
Last summer (May), things changed: bit by a brown-recluse spider, staph infections, blood infections; DVT, multiple pulmonary embolisms, Eliquis (for life!); pneumonia (beat it in a week). Good times!
Visited MD Anderson in November: bloodwork good, but neutrophils at .2; many palpable, visible nodes; CT scan revealed abdominal nodes. Time to treat!
Started O + V on January 23, neutrophils at .4: Gazyva infusion, 100mg. No adverse reaction.
January 24, neutrophils at 1.4, another 900mg of Gazyva. No adverse reaction.
Was IV hydrated for 7 straight days to avoid Tumor Lysis Syndrome, as I was artificially bulky.
Side effects were a nearly constant, weak, watery headache; a lightly webby brain fog; and insomnia, which lessened each day.
3rd infusion yesterday (January 31): 1000mg Gazyva. No fog, no headache, but hello insomnia.
Don't start Venetoclax until the 22nd day of treatment. (Today is day 9.)
Miraculous already: all of my visible nodes are now nearly if not totally invisible. In only a week! Welcome back, pencil neck!
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And thank you for the report on your lead up to needing treatment as well as the information re: the Obinutuzmab infusion and its working as it should to get the CLL on the run so Venetoclax can then zap it.
Best wishes with a continued regimen of getting that job done.
"watery" headache--a new description for me. But there are some things that defy description beyond "ache" or "feels weird", yet need more precision to answer the Drs. questions.
Thanks, Cllady01! … Yeah, "watery": kind of a thin, diluted, washy headache. Not thick, not sharp, not heavy, not full. I wondered for a bit if it's cuz I was overhydrated: IV fluids plus the insane amount of water I was drinking each day!
A headache can happen from over hydration--I think it has to do with an imbalance because of sodium levels being lowered, so you may be right. The IV fluids should remedy that, I'd think. But, I am not medically trained.
What I have read, is a sharper pained headache in that regard, though. It may be that you were on the verge of over hydration? We do have to keep hydrated to keep the medications from adversely effecting kidneys and liver. But, everything is an individual situation as to what happens. As long as the team who administer your infusion is kept apprised of anything (and I mean anything) that feels not right, you should be able to not have that reaction again--here's hoping that is so.
They are also what causes the insomnia. 20 hrs of "Wow, Im awake and no joint Pain".
I had the Super Hiccups! for two days straight after every Obinutuzumab infusion. It was a gas flying home from the treatment center and walking around the airports screaming Heuawk!
Hi, may04cll! ... Dunno if it’s standard for everybody, but MDA recommended O+V for me because the disease is more in my nodes & marrow than in my blood; hence, I was at a higher risk for TLS, so they decided to use Gazyva as a debulker before initiating the Venetoclax. Or so I was told.
& debulked I am: lost around 5 pounds in a week, seemingly all swollen-node weight. Good riddance!
So pleased for you as things appear to be going in the right direction. I haven’t had a need for treatment yet but it gives me some hope if I do. Love your sense of humour Good luck.
Thanks, keeptalking! I’ll keep posting updates. I was so terrified leading up to treatment, as I’m the kind of fool that obsesses over all the warnings listed on medicine inserts, but now I feel so much better, so relieved that I’m being treated. My hope is to be able to continue to offer a little beacon of hope to people who are in the same lonesomely adrift boat I was/am in.
Amazing account! My oncologist stopped Ibrutinib due to afib. He has recommended either V or O but not both together. He is doing a flow cytometry every other month to monitor me on no treatment.
Hello, so happy for you and thank you for posting this is very informative as I am about to start my V + O in hopefully less than a month pending test results. I’m especially excited about your visibly nodes going away as that is the main reason they are starting my treatment as it feels like they are strangling me sometimes and of course they look alarming. Strangers have actually stopped me to ask what happened to my neck and I must say that sends me into a tail spin of depression for a day or so.
Pleas continue to post your progress. I’ll be following you. Praying for your continued success!!!
Hi Loveroflife! Yeah, I can totally relate to the nodes anxiety. I teach college classes & was paranoid students were staring at my neck. I’m a wiry guy who had this linebacker neck—ridiculous! Also, I started to notice that foods of a certain texture, such as overcooked salmon, were getting stuck in my throat. Likewise, I dreaded putting on deodorant (still did it though, lol) because I disliked the feeling of the stick bumping over the swollen nodes. All of this stopped happening 3 days after my first 100mg infusion.
I was put on Eliquis when I was diagnosed with afib after 3 years on ibrutinib. 5 mg. twice a day. There was some increase in light bleeding after tooth brushing and some increase in hemorrhoid bleeding but nothing serious. I finally decided to try a cryoablation because the afib was interfering with my life. The procedure itself caused a bleed and they stopped the Eliquis. When they started it up again, my GP suggested a dose reduction to 2.5 twice a day. I am 79 and my creatinine is 1.7, and this combination means the lower dose is preferred.
At the moment I am off it. This is because I have just had a binding on the largest hemorrhoid which started to bleed a lot.
May I suggest that you need to balance the risk of stroke from afib against the risk of bleeding. Eliquis is certainly the best of the anti-coagulants for afib. But your doctor will doubtless agree that you should go off it if there is bleeding that you think is unusual. When this stops you go back on. There is no precise protocoll in this.
Also check with your doctor about what your real risk of stroke is. There is a scale called CHADS. At 79 with controlled high blood pressure (another side effect of IB) mine is 3. My risk of stroke with afib and without Eliquis is therefore 3.2% a year. So I am not panicked. It's a balance.
I don't have experience with that, but I would think there is still the need for balancing one risk against the other. Your doctors will help with this. So often modern "Western" medicine comes with tradeoffs. Sometimes specialists treat only the symptom or their own area of specialization and forget the whole person.
How are you doing, I hope you are doing well. It has been 10 months since you posted this Post. At the time you posted that one of the side effects you had was feeling weak. Are you still feeling weak or fatigued. Were you feeling weak before you started treatment? I am inquiring because I am fatigued all the time and I am curious as to which treatment alleviates fatigue better. Acalabrutinib or (O+V).
The fatigue lifted rather quickly, in my case. I mean, I’m fatigued quite a bit these days, but maybe it’s because I get up at 5:30am to run a 10K five days a week & then play the drums at least an hour a day, lol. Keep in touch,
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