I'm so frustrated. I'm Stage 2bT4aN0MO - my treatment is Leucovorin and 5-FU. The first 5 rounds were okay. HFS started at round 4 and was worse at round 5 especially my hands - its grade 2. They opted to hold chemo a week and test for DPD enzyme mutation. My counts were good - ANC was 1600 and for the first time my hemoglobin was in double digits 10. I was fine holding chemo for a week - it happened a week where I had plans so the week off was a gift.
On a side note I did the 23andme test and DPD variant was not detected. I know that's not definitive but it is interesting.
I went back today and my ANC was 600 - how can that be? Makes no sense to me. It was 1600 a week ago and I didn't have chemo. They couldn't figure out if the DPD test was in process or not. The person who ordered it was on vacation and they knew it was ordered and insurance was contacted but that's all they could tell me. I said I wanted to wait and find out what was happening so if they needed more blood they could do that while I was there. Nope, didn't happen. They said they would let me know the status of test once they figured it out. Regardless of the results they are planning a 20% dose reduction going forward. I wish I had asked if that cuts down on the hours on the pump or if the hours are the same and it runs longer - does anyone know? What are your thoughts or experience with a dose reduction.
I asked about the need for 12 treatments, especially with the newer research suggesting 6 FOLFOX treatments may be enough. They said they didn't know if there were studies that correlated to 5-FU. They said it was up to me if I wanted to stop early. They gave me the line about not having regrets, etc and said I was the patient and ultimately it was my choice. I hate those lines. I find them more frustrating and condescending. I'm feeling very over all of it.
If I make it through 12 treatments, now with a dose reduction, that's it for me. If it ever returns I'm done. I left today feeling very defeated and frustrated - Logically I don't understand the drop in my ANC. I really hate all of this. In my experience no one really has answers or logic and it drives me crazy. So I go back in a week and try again