I am scheduled to start on Wednesday this coming week. They are putting a me inpatient on Tuesday until Friday for the start of the ramp up.
This will be weekly for the five week ramp up.
I did not have the O infusion and not certain I will. Did anyone else just start on Venetoclax first? There is a possibility if all goes well with Ramp up, we may add either “o” infusion or rituiximab infusion.
. The doc started me on Allopuriniol on Wednesday morning and I got so lethargic about an hour after taking it. Even on Thursday I had lingering fatigue, but horrible brain fog too. I mean more than my normal fatigue and felt like I couldn’t walk across the room because of it. So the doc said try and taking it at night. I did and woke up on Friday with a couple of good hours and the debilitating lethargy set in again. I felt weak and in brain fog for some time. It was really difficult to do anything. She said you are so sensitive we need to lower dose. So my doc lowered the dosage by 2/3.
My anxiety kicked in last night as I didn’t sleep at all. I kept almost vigilant all night; not meaning to, but worry in the back of my mind. If this happens to allopurinol, a common drug. What happens with V? I’ve experienced sensitivity with nearly all medications. I’ve had to cut things in half and sometimes more. My concerns are rising, and perhaps needlessly, but I have gone through such severe anaphylaxis in the last few years (nearly dying) which is why my CLL expert is concerned too.
Has this happened to anyone else on Allopurinol ( the drug to prevent tumor lysis syndrome) ?
Has anyone started treatment with just V to see how It goes before determining which if any other therapy is next?
We are just going one week at a time.
thank you 🙏
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WittyApricot
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I had Venetoclax monotherapy starting in June 2016, and was hospitalized for 30 hours the first 2 weeks, and then for the next 3 dose increases I spent the day wandering around the hospital so I could get blood tests about every 4 hours. I had no problems. -
Dr. Furman and some published statistics I saw, indicated that since 2014 no fatalities have occurred since they started the 5 level dose ramp ups. A tiny fraction of patients had TLS (Tumor Lysis Syndrome) that was detected by the blood tests long before it became dangerous.
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Whether using Rituxan or Obinutuzumab / Gazyva after Venetoclax is at full dose, should be a decision by your medical team, but I would wonder if your extreme sensitivity to medication would make it risky vs. a small potential clinical benefit.
Please try not to worry. As you might know, I'm on V, just ramped up to the full dose on Wednesday.
Everything your doctors are doing is to make sure they keep you safe. You will be an inpatient, you are already on Allopurinol, you are starting with a very low dose of V and you will be monitored very closely. If anything unusual happens, you will be at the safest place possible - hospital. The staff are very good at preventing and dealing with reactions to the drugs. They have a very good plan in place for you.
I seem to be quite sensitive to the V tablets too but lots of people have no side effects at all. You might as well be one of them. Worrying about it now won't change the outcome. There is no point. Just read my previous paragraph again, keep on saying that to yourself whenever you feel "worry thoughts" creeping in. You will deal with anything when and IF it comes.
Our bodies can react to medication but they can also get used to them, they just need time. That's what you will do, you will rely on your team and you will allow yourself some time to get used to it. It will be all worth it at the end.
Thank you Poodle—-I’ve been trying to follow your journey -it has been so helpful to me. And thank you for that paragraph—-😀 I will re read it when I’m worried. Thank you so much!
My CLL specialist suggested taking Venetoclax without the O. I was mid-risk for TLS, and since I didn’t want to take any chances, asked to be in the hospital for monitoring.
My experience on V since March, 2021 has been very smooth sailing, without any side effects.
For me, it has been even better than when I was on Imbruvica. I hope this helps as you begin your own Venetoclax journey. I wish you well.
Hi,I’ve been on a clinical trial for Venetoclax monotherapy since April 2018. My only issues during the first 6 months were neutropenia and diarrhoea so, in November 2018, my dose was reduced to 200mg daily and I’ve stayed on that dosage since. Now my main issue is constipation — go figure!
I’ve been in remission since November 2018 but the trial is continuing.
I tend to be on the side of comstipation myself for the last several years. I do all the things they’ve suggested but the docs think it may have to do with my enlarged lymph nodes in the abdomen and pelvis area. I wonder how this will play out starting the med. thank you for your feedback—I appreciate it.
I am on my last week of the Venetoclax ramp up. Also doing Allopurinol. The first couple of days on V, I was a little light headed but it went away after the fourth day. No problems since!!
I haven’t started treatment yet but do have reactions to medications and foods which seem to be getting worse. I will be very interested in what others on this site who are more knowledgeable post.
Please keep us posted as you start and continue your treatment journey.
I finished 2 years of Venteclax in December. I too had a problem with the Allopurinol. It mad me itch like 🔥!! I informed my oncologist and she checked my blood thinking TLS but blood was good. Starting taking Benadryl to help with itch. Drugs affect me differently than they affect other's as well. Benadryl ramps me up doesn't put me to sleep at all. Made it to the finish line with Allopurinol. Whoop! Whoop!!I started Venteclax and it was amazing for me. Absolutely no side effects other than my hair getting really curly!! I might have been a little more tired in the beginning but it was totally worth it. I'm in a "partial remission" now and feeling better than I have in years. Best of luck to you. Keep us posted
Hi, I started on Venetoclax 10 days ago. I was in hospital for 2 nights to have a 6hrs blood test followed by another after 24 hrs. Results were okay and I was discharged. The plan for the following week was for me to attend A&E or MAU and get admission to any ward bed available!!!! I advised the consultant this was not going to happen. Given that the blood cancer ward is all separate rooms with there own bathrooms that are deep cleaned his plan was in my view putting me at risk.The following week I was treated via out patient facility, returning for 6hrs bloods and the next day for 24 hrs test. All results okay and WBC is reduced.
I've not had many problems with the Venetoclax apart from some pounding noise in my ears when I lie down.
The plan after 5 weeks is for me to be started on Rituximab provided my WBC is below 35.
I am also taking allopurinol, acyclovir and co trimoxazole and have not noticed and side effects.
i too am on venetoclax monotherapy. started ramp up last september. my oncologist did not want to start with obin due to covid.
the ramp up was fairly easy for me and i am very sensitive to just about every med out there.
had been on ibrutinib in 2020 for 4 months but developed cardiac side effects so was extremely hesitant to be treated at all. the enlarged lymph nodes did me in.
i attended the hospital 3 consecutive days for bloodwork and consult, was on allopurinal for a month and all went well. we stopped at 300 mg as i was doing ok and my doc didn't want to chance anything.
it has been about 10 months at that dose and no problems. experienced some nausea for the first few months but was used to that from the lymph nodes. now only occasionally.
not in remission yet but hopeful.
best of luck. you will be well monitored and your blood results will in all likelihood show anything adverse long before you even feel it.
Greetings. I went through the ramp up in late 2019. Not the most fun filled 5 weeks of my life. High potassium and TLS ( I had significant lymph node issues in my abdomen, common for 11q deletions) they added a few days to my stay, but my care team was really great and kept on top of it all. They added the Rituxan in week six with no problems (I’ve had quite a bit of it previously so no reaction) and on week 7 we went to the injection of Rituxan instead of the infusion. My care team really made the process go well. I wish you the best. Let us know how it goes.
I have 11q deletion as well and I have enlarged lymph nodes all over my body so I think hat combined with my allergies and sensitivities has been cause for me to be inpatient and has been the underlying nervousnesss I have been feeling.
I had seen that on your profile and why I mentioned it. I had the same anxieties going into the ramp up. But I would think you will have a very good care team looking after you. Take plenty of diversions, it can be a little boring and drink a lot of water. I think they had me drinking about 96 oz. Every day.
Wow ! I have a couple books, magazines and drawing pad to go with me. I am more hopeful after everyone’s message. And I am really looking forward to feeling like me again—-it has been so long since I felt well.
Hello I'm supposed to start treatment end of October also they want to do V and O too. after studying on it I am only going to do the V as I don't think the O adds that much to it and I don't want the decline of immune function that O causes, or the extra toxicity.
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Have begun Gazyva and soon to begin venetoclax
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