Hello
I am on ribociclib, letrozole, denosumab and prostap.
My neutrophils were fine on the first round but low on the next two rounds so my treatment was delayed by a week each time. This time my dose was lowered so I took 2 ribociclib tablets a day rather than 3. Just been for my bloods today and my neutrophils are as low as they were last time when I was on a higher dose. They have delayed my treatment by a week again but said they need to speak to the consultant about what he wants to do. I am really worried now and not sure what he might say. I am due to have my first scan since diagnosis next week too.
Has anyone else been a similar position? I really thought when they lowered the dose that I would be ok to carry on as normal.
x
Hi Kat
im on ribociclib letrozole and zoladex.
i normally get my blood done on the Friday then pick my tablets up on the monday, my neutrophils can sometimes be under one, but then when I get them repeated they tend to go to anywhere between 1 and 1.4 so I have never had mine delayed. How low have yous been ? My onc allways say 1 or above is fine.
I know they say there is nothing can eat but the last time I ate raw spinach in salads lots of brocolli & Kale and had lots of berries and they were the highest they have been.
i wish you well with your scan also xx
Hi I am on palbociclib which can have the same effect on neutrophils been on this for 3 + years and scans 3 to 4 monthly show things stable. Initial dose was 125 mgs then lowered to 100mgs as coubts were low now on lowest dose 75mgs for past few months . Neutrophils been OK on the 75mg dose. I have had treatment delays for a week on a few occasions. Your neutrophils can change on a daily basis I usually sit just above 1 but have been 0.8 or 0.9 when treatment was delayed . I try to eat healthy fruit veg esp greens plus take vit d and b12 supplements to try to help. Sometimes it seems like a hit or a miss with bloods. Others on here have said their dose is adjusted or days off treatment made longer and still work . Palbociclib is daily and 3 weeks on and a week off but some do 2 weeks on 2 off I think. Sending love hugs and positive vibes xoxo . Liz
Hi Kat, i suspect Palbo is the culprit, it was with me. It took a year to get my dosage and rest period correct and then I motored on happily for three years. Unfortunately , like yourself, my neuts began to drop monthly until my Onco decided it was no longer safe for me to continue. Palbociclib is a bit of a belts ‘n’ braces med and works with Letrozole, which is your real performance hormone blocker. I know it is quite worrying, but your MDT will keep you safe, and there are plenty of other meds available for you if needed. The neutrophil question is asked frequently of our senior Onco at our support group meeting and he always says that there is little he knows that encourages or improves them, which is a bummer! Just one of those things, but eating healthily can only be a good thing. Best wishes. Ann x