The beginning of my treatment is finally upon me after a short 2 year w&w period.
My specialist opted to begin with Venetoclax as this is part of a successful German study (is what I was told).
2 weeks ago I started Venetoclax 20mg with 3 nights in hospital. I had a sudden spike in potassium (5.7) which was swiftly corrected with insulin. My WBC went from 170k to 72k in just 3 days. They feared tumorlysis so they insisted on keeping me in for a third night.
My metabolic panel stabilized, wbc low 70k’s Hgb 11.5 (from 10) platelets 100, they finally released me.
Week 2, dosage 50mg ramp up, hospital 2 nights, but they wanted to keep me a third. My WBC Had increased to 100k within the week of being home, everything else stayed the same (approx)
4 hours After taking the first 50mg dose, my potassium spiked again, and it was quickly corrected. 4 consecutive blood draws showed everything stable, with my wbc now down to 80k. This was the second day. I asked them why they wanted to keep me in for another night and the answer was vague with unsupported reasons why. Mostly pointing to observation. Finally they allowed to me go home the night of the second day, after a 5th blood draw, still showing everything stable.
They re-assured me next week’s ramp-up (100mg) won’t need an overnight as I’m now low risk for tumor lysis.
I received a call today with a new appointment made for next week for admittance again. I asked why the change of plan and I explained I was told I wouldn’t require another admittance. Again, vague unsubstantiated responses.
If you’ve made it this far in my post, thanks for hanging in there!
I guess my question is, has anyone been admitted for the 100mg ramp-up?
I even suggested a compromise and doing a 12hr day in out-patient for monitoring with little success
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Philipoc
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I can’t help you I’m sorry to say, but what a disorganised arrangement! I hope this gets sorted for you very soon. It’s bad enough having this disease which is an uncertainty in itself, without the added worry of a disorganised group that are supposed to be looking after you.
I had 3 overnight stays out of 5 for my Venetoclax ramp up but only for one night. This was due to slightly elevated phosphate levels. However, I had 10/12 hr day unit observations each time too.
They seem to be hyper cautious with you but in the early trials, patients did die of tumour lysis syndrome so it’s important to monitor very carefully.
Thank you Newdawn. If the doctor had explained this when introducing the drug on day one that “potentially” you “may” have to do further observation, be prepared. Knowing what I know now, the explanation was weak and insufficient. Thanks again!
Hi Philpoc,
I’m currently receiving obinutuzumab and about to start venetoclax in a couple of weeks. I was admitted to receive obinutuzumab, and did have a reaction and was just told yesterday I would probably have to be admitted as an inpatient twice when I receive venetoclax (for the first time at 20 and when the dose is ramped up to 50). In my case I know it’s hard for them to give me a firm answer as they need to keep watching my bloods and make the decision closer to the start date. I’m not loving the idea of going back to the hospital but I do trust my doctor and team and know they wouldn’t admit me unless it’s warranted. Hopefully in your case they just aren’t explaining it so well rather than them making bad decisions-you should definitely persist in getting answers to your questions if you feel like you need to. There hasn’t been any discussion of admitting me for the 100 dose up, but I guess it comes down to individual bloods and risk factors. At the end of the day I’ve just decided to go with the flow and trust in my team. It seems to cause me a lot more anxiety when I try to control too much. Having said that, when I asked the nurses and doctors specifics they are able to provide details which is comforting and it must be hard for you if yours aren’t doing the same. Good luck with it, persist in getting answers!
If you use this link: venclextahcp.com/cll/dosing... you will see the risk assessment protocol. And it may be that your doctors are seeing your ALC (WBC) is still well above 25k and that may make you medium or high risk.
SNIP Tumor lysis syndrome risk is a medical determination that must be made by a physician based on multiple factors, which include tumor burden, comorbidities, blood chemistry, renal function, and potential drug interactions.
Many of us have had our Lymph# drop more quickly after the 20 or 50 mg dose, than yours have .
As Newdawn says, if a sudden die off of CLL cells causes your potassium, phosphate, uric acid or calcium to rise quickly, your major organs, especially your heart can begin to fail in a few hours, without any symptoms until it is too late. So having the blood tests run frequently and the results reported quickly is very important. If your medical team cannot get the testing done and reported reliably as an outpatient, they may be admiting you for that coverage.
During my ramp up I spent 3-4 night in the hospital each of the first 4 weeks. (5th week they did the long out-patient day. I had a high tumor load and did have some TLS as we upped the dosage. Potassium was an issue. Quite high numbers and it was something they were treating. Lots of fluids and Lasix. It was always disappointing to have extra days added, but always for a good reason. Best wishes
No overnight admissions during my venetoclax ramp up.
You mentioned "My specialist opted to begin with Venetoclax as this is part of a successful German study" If you find out the name of the study, please cite it.
The trial that I participated in administered obinutuzumab prior to venetoclax. The trial administrator also commented about parallels to a German study, even though our trial included differences. As I recall the study referred to me was the CLL14 study which observed differences between O+V vs O+C. Our study did not include the chlorambucil, however it included an observation of adding bendamustine.
In addition, It is my understanding that the order of administering these drugs was of primary importance to the observation objectives in the trial that I was in.
Thanks for all the replies. I’m by no means resisting their instructions to check-In for a few nights per week, I was let down by the doctors when they told me it would be ONLY be first&second dose ramp up without any indication it could potentially be more. That was my anticipation and I planned accordingly. Since reading the links Newdawn sent me, this could be a much longer process with up to 5-6 weeks due to high risk status.
It could be partially my fault for not doing enough research on the front end of this drug. I was going off gospel conversations from the specialist. Thanks again everyone.
My doctor started me on venetoclax first too and I was hospitalized when I began. On day 4 he added the Obinutuzumab(over a two days) while I was still in. I had severe reactions on both days so they kept me in while they ramped up the venetoclax. Overall I spent the first ten days of treatment in the hospital. After reading many other’s experiences I think I’m the exception not the rule. Every doctor who saw me said that I’m just extra sensitive to the treatment. I’m now doing much better. My doctor kept me on 100mg of venetoclax and I’m doing my first monthly obinutuzumab in two weeks. Good luck to you.
As others I believe have pointed out, it all comes down to a calculation of what your unique risk is for tumor lysis syndrome (TLS). Two factors used in the calculation of that risk is your “tumor burden” reflected by your absolute lymphocyte count (ALC) and the extend and size of your lymph node involvement as measured on CT scans. You can look up parameters for the calculation grading online. I believe the risk for TLS is greatest early in the Venetoclax ramp up. Perhaps someone else can weigh in on this. TLS can be reflected in lab abnormalities alone and in clinical symptoms, and neither is good. The effects of TLS on our kidneys is the most worrisome. So if your provider team is being cautious, there are no doubt good reasons. If you are not satisfied with the answers to your questions, I would ask again for more specific information. I started Obinutuzumab 4 weeks ago and have just begun my Venetoclax ramp up as an outpatient with close lab monitoring. The center at which I am getting my treatment has a lot of accumulated experience with this outpatient approach. They feel that my risk for TLS is low as the Obinutuzumab dropped my ALC like a stone and my lymph nodes are also now very small. I hope things go smoothly for you.
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