Anyone have Tumor Lysis Syndrome (TLS) after starting on Venetoclax (Venclexta) for CLL? What was your ramp up experience?

[Catonka]

Anyone have Tumor Lysis Syndrome (TLS) after starting on monotherapy Venetoclax (Venclexta) for CLL? What was your ramp up experience?

[Schubert1870]

Hi Catonka,Did you experience TLS? I’m going to be admitted to the hospital per my beseeching today for round one of V, as well as next week. I feel comforted knowing I’ll be monitored, even being medium risk.

Hope you are faring well with V!

[Catonka in reply to Schubert1870]

Hi Schubert1870. Thank you for responding. Fortunately for me my doctor did not feel I needed to be admitted but I show up for bloodwork each Monday in March. I have not experienced TLS to this day.

I took 1st pair of ramp up pills, on March 1st. On March 2nd my wife and I received our 2nd Moderna immunization jab. On March 4th I woke with a fairly large node under left arm injection site which have seemed to have been joined by more nodes under right arm and both sides of neck. We speculate the change in the pitch of my voice to be enlarged nodes in my neck.

I'm about 4 hours away from having an abdominal ultra sound. I truly believe many of us starting Venxlexta along with either of these immunization jabs are in a truly unique position. Realize, there are very few people starting both of these simultaneously.

I wish you the very best in handling this.

[RitaBa]

I will also be admitted (high risk) when I start my Venetoclax in 2 weeks time.

[Ellieoak]

Dear Catonka, I did not have Tumor Lysis Syndrome with the Venteclax that I started 3 yrs. ago. I hope that you will have the same experience that I did. Just remember to drink PLENTY OF FLUIDS. Good Luck, Anna

[thb4747]

I had almost no issues. Just one night when my potassium levels were very high and I had to have a second blood test before being allowed to go home.

[jaypax]

Hi. I started Venetoclax monotherapy last July and as far as I'm aware, it's normal and good practice to be hospitalised when you start treatment with Venetoclax. I had no TLS inspite of a heavy burden of abdominal lymphadenopathy. It can't be emphasised enough that should drink plenty of water to avoid problems. Initially you may feel like you're drowning in so much water!!! But it is really important to follow the guidelines. Ramp up was okish, a few minor side effects with nausea and diarrhoea but with the help of the team I got over these and now feel good and bloods are good.

All the best. Jeff

[tryandtry]

Hi Catonka:

Not sure that you or the others about to start the Venetoclax ramp-up want to hear this, but I did recently go through TLS (late Summer 2020), but take heart - it wasn't as bad as I feared it would be, and I'm still on Ven.

I've had CLL for 18+ years, and have been through (and relapsed on) Rituxan monotherapy, Imbruvica, and Calquence. I'm Q13, and didn't have a high tumor load, but I've always been highly sensitive to drugs, so my doc put me in hospital for the ramp-up. I went through almost 2 weeks (20MG & 5 days of 50MG without problem. Blood numbers showed only slight changes, so they sent me home for a short break while I finished up the last couple days of the 50's. About 36 hours later, I wished I was still in the hospital, although I was really only TIRED, too tired to do much of anything but sleep. I endured another day + of this, realized it was getting worse (still nothing but really tired), and went to my CLL doc.

A thorough body exam found nothing, but my WBC had dropped from 190 the day they released me from the hospital, to 9. We all suspected TLS, but he took several other blood tests, which had to be sent to the hospital for processing.

The next morning, at 6am, I got a call from him to go to the ER ASAP. I did, and spent another 10 days, or so, in the hospital, getting treated for TLS, and re-ramping up through the 50MG stage. TLS is dangerous, but I never felt any symptoms, except the tiredness. Uric acid was the main concern, but I responded quickly to the drugs they gave me for it, and for their other concerns. The 50's re-ramp went fine, and the docs have left me at that dosage for about 6 months, during which I've had no problems.

My main reason for writing you is to re-assure you that TLS is not necessarily terrible, and that it can be treated. Equally important, if/when you do go home, be very aware of feeling extremely tired, and if you do, go see your doctor, and get your blood tested! That's not part of the normal ramp-up.

Gary

[MGirl-Aust in reply to tryandtry]

That’s very helpful, thanks Gary. Always good to hear of someone’s actual experience rather than just reading it on the medication leaflet.

I took my first dose of venetoclax a few hours ago and will be looking out for any TLS symptoms. I’ve already had 3 weeks of obinutuzumab and I’m now considered low risk, so hopefully no TLS. I’m also taking allopurinol and drinking lots of water.

Michelle

[elkk in reply to tryandtry]

Thanks for posting this Gary. We always look out for drastic and obvious signs and could easily overlook tiredness though extreme as part of the process. Take care

elkk- aust

[bayside64]

Sorry to say I experienced tumour lysis syndrome after beginning Venetoclast. Fortunately I was put in the hospital for this treatment. I am having a difficult time and don’t to go into further details now. I am super sensitive to medication. Most people do successfully well on Venetoclast.

[Catonka in reply to bayside64]

Hope that turns around quickly for you Bayside64

[bayside64]

Thank you.