Hi lovely ladies I'm into my third month of Trodelvy infusions. All seems to be going well except for my low white blood cell count which a couple of times has been too low to admit the treatment. Just wondered if anyone else had this problem and what remedies have you found - nutrition or suplements?
Thanks again and a big hug from Spain
Hello Tanyateresa. I had problems with my white blood cell counts when I was on Ribociclib. My neutrophils dropped dramatically the first cycle from 5.0 to 1.2. I investigated and found a clinical essay on RE+ bc chemotherapy and Uncaria tomentosa, Cat’s claw, with positive results on neutrophils. I used Ut 3gr three times a day with boiling water and after 2 weeks they rose to 2.8 and another 2 weeks later they were at 3.6. Commented it with my onco and she confirmed there's no interference with ribociclib. Unfortunately I had to stop treatment with ribociclib because of bad liver values. I don’t know if it is safe to use in combination con Trodelvy, you should ask your onc.
All my best wishes to you and a hug from … (northern) Spain!
Hi there, thanksvery much for that. My oncologist is not that keen on supplements precisely because of the effect on liver. I am on one capsule of Reishi 6500 mg but it hasn't made much difference to my white blood cell count. So I will look into the cats claw. Thanks!! Good to hear from another Spanish resident!! All the best!!
I think maybe I wasn't clear, but my liver issue is because if Kisqali/ribociclib. My onc confirmed that.
how high is liver? Are you still on
By now my liver values are normal again. I'm not on ribociclib anymore and had to leave the clinical tryal because of the problems with my liver.
My start with Trodelvy was tough. Low white blood cell counts, gastrointestinal issues etc., however once the dosage was lowered the white blood cell counts came back. Occasionally I have low red blood cell counts. My oncologist wants to keep the load off my liver and protect it. Unless it is medically necessary I do not take any supplements, over the counter drugs or prescription drugs. I want my liver to last a long time.
Hi good to hear from another Trodelvy gal. Well yes my oncologist is also not keen on supplements because of the liver issue. Maybe they will have to lower the dosage a bit....
How long have too been on Trodelvy?
I think maybe I wasn't clear, but my liver issue is because if Kisqali/ribociclib, not because of cat's claw. My onc confirmed that.
Unfortunately the supplement industry in the USA is unregulated which results in safety problems. 20% of liver failure in the USA is due to natural herbal and vitamin supplements. Claims cat’s claw works for cancer are unfounded. There is currently not enough research to support many of its supposed benefits, including for cancer. Patients with certain conditions should absolutely not take cat’s claw. See easy to read and understand article at Healthline. More robust scientific articles are found online. There is no need to place an undue processing burden on the liver, kidneys or body for supplements whose effectiveness have not been proven and may interfere with medications or worse. My oncologist has not prescribed cat’s claw. Why add to the toxicity and processing overload from effective cancer treatments? Our bodies are stressed enough.
I start trodelvy this Tuesday. A little nervous about the side effects. Do they subside on lower dose?
Yes the side effects subsided at the lower dose. There were three dosing options with Trodelvy. Ultimately I landed in the middle dose. I did lose my hair, experienced fatigue, low WBC & RBC from time to time, as well as diarrhea. All were manageable. The pre-drugs( Steroids, Zyrtec, Prilosec, Zofran, Aprepitant, etc.) they gave at infusion were very good at mitigating the side effects. Once on the middle dose, I never experienced nausea or loss of appetite again and changing from Benadryl to Zyrtec helped with fatigue following infusion. I am no longer on Trodelvy and was disappointed to have to change treatments. I had hoped to jump to another Anti Body Drug Conjugate. I am on Xeloda now and hoping for a good run. The tips and tricks left behind by others who were on Xeloda have been very helpful. Best wishes for a successful run with this wonderful drug. It is definitely less toxic than the traditional chemo drugs.
I have been on Trodelvy for 1 year. The scans show my tumors shrank 25%. My tumor markers continue to drop a bit each cycle . The infusion nurse told me she has a patient who has been on Trodelvy for 2 years. I am grateful to be able to have this life extending treatment and fingers crossed it keeps working.
Thanks for your comments. It's positive to hear from someone who has been on Trodelvy so long. Hope it continues to give you lots of good health as well as me
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