Issues starting with Zanubrutinib.

[JerrysGirl3]

ok so today is day 3 of starting Zanubrutinib. My BP has been high 170/100 most of the time although it wavers slightly. Doesn't really seem to bother me. Yesterday my heart starting feeling weird. Today the nodes on my left side of my throat seem to be really swelling. I think I've read here that that's common in the beginning of treatment? My right side feels fine. Then My neck nodes spasmed. Then I got a really really bad cramp from the back of my left knee down to my toes. I limped upstairs and took two magnesium pills. Then a muscle relaxer for my neck. Then came down and had Propel sports drink with electrolytes. The cramping is basically gone but my neck swelling is not. I know it's only day 3 but I really hope this is normal. 😵‍💫

[AussieNeil Administrator]

As you note, it's still early days.

With respect to the cramping, I used to take magnesium tablets daily to stop near daily serious calf cramping. Because venetoclax can cause shifts in serum magnesium, I stopped taking them during the trial, but still struggled with painful cramps. The clinical trial nurse suggested a topical magnesium cream, which worked brilliantly, providing relief within a couple of minutes. I tried to find the tube to provide you with more information, but I haven't had to use it in over 2 years! A pharmacist should be able to suggest a suitable cream.

Neil

[JerrysGirl3 in reply to AussieNeil]

Thanks Neil. I'll be going out tomorrow. Will stop at drug store and see if they have any.

[Accordion in reply to JerrysGirl3]

Wish you all luck and comfort.Take it easy!

Christina

[JerrysGirl3 in reply to Accordion]

Thanks Christina !

[JerrysGirl3 in reply to AussieNeil]

Pharmacist was of little help lol. Ordered someOnline- best I could find without doing an oil base. And I do also have trouble with sleeping since I started:

7 minerals w magnesium, cocoa butter etc.(Name)

10% of high-grade magnesium, the highest concentration of this vital mineral on the market, this cream effectively checks magnesium deficiency to help

✓ manage insomnia

✓ soothe leg cramps

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The blend of Organic Cocoa Butter, Organic Sunflower Oil, and Natural Vitamin E will leave your skin nourished, hydrated, and with a softness you’ll absolutely relish.

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[bayside64]

I developed a hematoma on the third dose of Zanubrutinib. Contact your physician for any concern. All of our meds have side effects.

[JerrysGirl3 in reply to bayside64]

Well I just found out that the cll doc i saw on Tuesday came down with Covid by the weekend 😳😳. My swollen nodes might be fighting the infection. I took a Covid test today it was negative. I saw him three days before he was symptomatic. Right in the "zone"....my nodes were perfect for two days. Then suddenly swelled on Sunday and remain swollen. If they are fighting the infection then I am glad my immune system is still working!

[JerrysGirl3 in reply to bayside64]

What were your symptoms ? How did you know you had a hematoma ?

[bayside64]

Oh my gosh! Hope he has someone great to take over.

[JerrysGirl3 in reply to bayside64]

No clue. I don't even think I was supposed to be told. I'm supposed to see him in two weeks for my first Zanubrutinib labs. If he is still out I will go to an oncologist out here and have tests taken here. Or have him call in labs to here so I don't have to travel into the city.