13q deleted. What are first treatment options.

[elm1]

what are best first treatment options. I’m really scared of tumor lysis.

[lankisterguy Volunteer]

Hi elm1,The treatment options can be generalized as slow and steady or fast and furious.

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Slow & steady is one of the BTKi types: Calquence/acalabrutinib or Brukinsa/zanubrutinib see: drugs.com/medical-answers/t...

They are pills taken once or twice per day and require few trips to a hospital, often 3 month testing for several years, often 5-7 years with good control of your CLL.

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Many patients with 13q, mutated will opt for the fast & furious using venetoclax/Venclexta and another drug like obinutuzumab/Gazyva or a BTKi. This requires lots of testing and hospital trips in the first 2 months, but after 1 year of treatment the CLL is undetectable for several years and no further treatments are needed for 3-5 years. If the testing protocols are followed the risk of TLS is extremely low.

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Len

[TD1234]

not necessarily bad and dependent upon a couple other important gene related things… You'll definitely want to check with your oncologist. I wouldn't stress out just yet… especially if there is no symptoms in your blood test aren't setting off any alarm bells. They have some amazing frontline medication's nowadays, and I'm living proof that they work (thank you calquence!) Keep the faith trust the science.

[elm1 in reply to TD1234]

Thanks. The only red flag so far is the markedly increasing wbc. They’re testing for possible mutations. The doctor said it appears I’m heading for treatment. I like to prepare myself and appreciate everyone’s advise

[SofiaDeo in reply to elm1]

Please don't worry about tumor lysis syndrome. It's a concern mainly if one is *not* being monitored, *not* following the protocols, like drinking the amount stated (not more or less, just, what they say) and getting the lab tests at the timing stated on a drug package insert.

If you do the protocols, *if* any of the organs are stressed, then before any thing irreversible/bad occurs, prevention and mitigation steps can be taken. Here's my example: I chose Venclexta. I barely met the "high risk" category, I had a single internal lymph node larger than what the protocol said made me "high risk". However, I also had a massive spleen.

The literature did not mention any adjustments for enlarged spleen. But my specialist said he preferred to hospitalize ALL patients with an enlarged spleen. So in I went.

It was a wise choice. I started killing CLL rapidly, and my spleen emptied out within mmmm 48 hours. My serum phosphorus started to rise. I decided to choose an extremely low phosphorus diet when this started. It rose almost to the point of needing medication to bind the phosphorus, but not quite. But there was medication available & they were ready to use it if my phosphorus levels didn't drop. So other than a transient kidney stress, everything went back to normal.

If you follow whatever recommendations for your medications chosen, you should be fine.

[elm1 in reply to SofiaDeo]

Thanks! And how are you doing

[Tangolover]

I am also 13q deleted and have stopped treatment for at least until June. I started with Rituxin infusions for 6 months and then Venetoclax for a year and a half. Doctor is giving my body a break and then we will see if I need to continue with any other treatment. They can give you a pill (used for gout) to help with TLS. I feel very lucky to have such good meds for our treatments now. I was very scared at first, but overall it's not bad at all.

[elm1 in reply to Tangolover]

Thanks soo much.

[Tangolover]

Keep us posted!

[elm1 in reply to Tangolover]

oh I will. You all have been the best support.