I Am Trying To Find Out If Anyone,has Taken Oral Meds For Their Cancer,and Would Like To Know If Oral Chemo Helps? | MyLymphomaTeam

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I Am Trying To Find Out If Anyone,has Taken Oral Meds For Their Cancer,and Would Like To Know If Oral Chemo Helps?
A MyLymphomaTeam Member asked a question 💭
posted November 26, 2022
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A MyLymphomaTeam Member

Bill, I started on Calquence 100mg 2 times /day. It seems to have helped in that no more night sweats and no more low grade fevers. Energy level has improved considerably. Only issue Im having is about a week ago developed a skin rash that is quite itchy at times. Doc has prescribed steroid for the rash.

posted November 26, 2022
A MyLymphomaTeam Member

Hi, Bill
I began Brukinsa about 1 1/2 months ago for SLL. By the end of the 2nd week neck lymph nodes began shrinking. Last week nodes could not be felt on physical exam. Also last week, I had an abdominal MRI, unrelated to the SLL, which showed nodes in abdomen either gone or smaller, spleen is smaller, and, what was thought to be just a cyst on my liver is smaller. Appears that the "cyst" was also the SLL spreading.
Previously, had daily, sweats (not at night - all day), now no sweats.
Have more energy, no more naps and sleeping a normal amount of hours instead of 12-15 hours.
WBC is already decreasing.
Side effects: morning dose gives nausea but not evening dose; potassium became a little elevated (bad for kidneys) but drinking 1 1/2 - 2 liters of water took care of the elevated potassium; dizziness but just have to stay aware so that I don't try to move rapidly and fall. That's it for side effects so far.

As far as I know, at this point in time, the FDA has approved Brukinsa only for the following:

Waldenström’s macroglobulinemia (WM).
Mantle cell lymphoma (MCL) who have received at least one prior therapy.
Relapsed or refractory marginal zone lymphoma (MZL) who have received at least one anti-CD20-based regimen.

My medical team decided to try it for first treatment for my SLL, so they are using it "off-label" which I decided to OK.

Resources: brukinsa.com and drugs.com

Will keep you posted if you would like. The medical team has no idea how long I will have to be taking Brukinsa of even if the SLL will go into remission, although it appears to be responding. Do have to check interactions of any other meds or so-called natural supplements so that they don't interfere with the chemo.

Will be praying for you and wisdom to know which treatment is best for you.

posted December 21, 2022
A MyLymphomaTeam Member

I started taking imbruvica when I started to leave remission about six or so years ago. The only side effect was that I tended to dehydrate, but sports drinks took care of that. Then I guess my body got used to the imbruvica and I stopped dehydrating. I still take it, no more side effects, and I remain in remission. Hope this helps.

posted November 26, 2022
A MyLymphomaTeam Member

Thank u

posted November 26, 2022
A MyLymphomaTeam Member

My husband is on Brukinsa orally for 3 months has shrunk his mass about 3 cm. Only side effect has been a mild rash.

posted November 26, 2022

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