February 2, 2021 at 3:02 pm #100812vtkbParticipant
Kathy had her wbc drop during radiation after starting xeloda- enough so that she caught meningitis and her onc never considered xeloda again. During her initial chemo, she only needed neupogen/neulasta once or twice. When the metastasis appeared, she was put on gemox every other week, but after about a 7 months it had to be stretched to every three weeks because of her WBC and she was getting neulasta every time. I wonder if that helped her cancer grow, but it is what it is. Now that she is on FOLFORI every other week her WBC has maintained steady, but she still gets a neupogen shot every time.
Just for those who are curious, when on gem/cis the lowest WBC counts (the nadir) tends to happen around 10 days after chemo.January 29, 2021 at 10:46 am #100802OdieParticipant
Thanks Mary for your quick response to my post and for sharing the SWOG info as well as your own personal experience with the treatment. You have definitely made me feel better and eased my anxiety a bit.
Technically this is my second week of Cycle #3 and because of the low WBC I am not having the infusion OR taking the oral Xeloda.
I will see my doctor again on Thursday of next week to review the plan moving forward. He has already done a dose reduction twice. My drop in WBC consistently happens mid-cycle…at the beginning of Week 2….and therefore prevents me from the possibility of having growth factor injections (Nuprogen) to help boost my WBC. Technically during Week 2 I should still be doing the Xeloda, and from what I understand you can’t have Nuprogen while still currently on chemo… It would only be administered on my “off” week. I believe my Nurse Practitioner once stated the efficacy of Xeloda is best when taken 14 days in a row. So it’s a juggling game at this point.
I have a feeling when I see the doctor next week he may eliminate the Gemzar and just keep me on the Xeloda which is the standard. Adding Gemzar was a more aggressive approach, which I do WISH I could tolerate.
Following the 4 months of chemo, I will also do radiation along with taking the Xeloda. I hope I do not have the same issue with my WBC during radiation. I had DCIS breast cancer in 2015 and handled radiation quite easily without any problems. I don’t remember them doing many blood tests, but I also was not on the oral chemo drug of Tamoxifen until after the radiation was over.
Thanks again for sharing your own experience, especially during your radiation treatment… and the same anxieties you had when they lowered dosages etc. It is both calming and encouraging to me to hear of your positive outcome! Congrats to you Mary!
I will keep you posted once I know my treatment regimen moving forward. I will take this week off to stay positive and eat healthy!
LaurieJanuary 28, 2021 at 9:55 pm #100801bglassModerator
I saw your earlier posts, and want to congratulate you on your successful surgery. Regarding your question about white blood cell levels, I went back and looked at the published study on the SWOG S0809 protocol, and low neutrophil levels was the most common adverse event. 44% of study participants experienced this adverse event at Grade 3 and 4 levels. The report also indicates that 76% of the study participants experienced at least one dose modification or omission. So your experience is not unusual, and your medical team will know how to navigate your situation.
I was treated with this same protocol, although my cancer was intrahepatic which was not included in the S0809 study. I went back and looked at my test results to see how my blood levels reacted. My neutrophils were okay but my lymphocyte levels dropped substantially during the radiation treatment. Toward the end my chemo dose was reduced as a result. I recall being terrified at the time by this, but my lymphocyte levels began recovering once treatment was over. I completed treatment in 2016 and am still in remission.
I hope you are able to continue treatment into the next cycle. Please keep us posted.
Take care, regards, Mary
P.S. Here is the citation for S0809 in case anyone is interested in reading about it: https://ascopubs.org/doi/10.1200/JCO.2014.60.2219January 28, 2021 at 3:41 pm #100799OdieParticipant
Hello… Wondering if anyone else has experienced WBC counts continually dropping during chemo.
I am on a protocol of Gemzar infusion once a week along with taking oral Xeloda everyday, 2x a day. (This is S0809 clinical study regimen)
The regimen cycles are supposed to be 2 weeks on and 1 week off. I am currently on my 3rd cycle, but so far during each cycle I have only been able to complete the Week #1 infusion because in Week #2 my WBC count is always too low. Cycle 2 and Cycle 3 I also had to discontinue the oral Xeloda during Week #2 as well because my counts were exceptionally low. My WBCs do bounce back to normal quite quickly once off the drugs.
I have anxiety over missing the treatments, as well as worry over the lack of consistency with the treatments and the efficacy.
I’ll see the doctor next week to see how he would like to proceed. My doctor is one of the lead experts on this regimen and was one of the clinical trial designers and lead authors of the S0809 regimen… I know he will be able to finesse this to work for me.
But I am more than a bit frustrated and frightened that my WBCs are preventing me from receiving this specific treatment as it was designed.
If anyone has had similar experiences, I’d love to hear your stories.
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