I was on Ibrance 125mg - I take Letrozole 2.5mg and Denusomab every 6 months. My neutrophils below 1 every month and having an extra week off every month now for the past 6 months. I reached remission after 6 months of treatment.
My oncologist lowered dose to 100mg last month, I was hoping g it wii oh old work, blood results came back yesterday and low again at 0.6.
My questions:
Has anyone experienced the above?
Have you had to lower to 75?
What if 75 still lowers neutrophils, does this mean stopping treatment even if it keeps me in remission ?
Thanks. I am quite concerned.
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Gramat
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I was the same started on 125 in august 2018 and was constantly having to extend a week due to low neuts. Now I am on 75mg and 3 weeks on and 2 weeks off. Last scan 2 weeks ago and stable still.
I was lowered to 100 from 125 for the same reason. I’m now on three weeks on and two weeks off. So far so good. My onc doesn’t want to put me on 75. She also said a bit of active movement just before the blood test can sometimes raise the number of neutrophils by a little bit. So, I go into the waiting room and flail about while waiting for my test. I will do whatever it takes. I hope your numbers come up!
Hi NocilloMay I ask why your onc doesn’t want to put you on 75? I’ve been informed all doses work. I was on 125 for 1 month - didn’t cope and was reduced to 100 for a year, following a few blips with low neutrophils lowered to 75 at the start of this year and it has been the best thing for me physically- I rarely think about me having “C”!!! However I do get scared it’s not working because I feel so good on it (weird!!), but my last scan was stable. I’m going to have a face to face consultation in 2 weeks and will double check my scan results with onc… just incase 😊!
Results were not good, I’m now on Faslodex only. Devastated to say the least, as I found it difficult to accept that I wasn’t a fortunate long timer on this drug.
Once my BC nurse assured me it was a good treatment, I accepted - it is what it is! I’m getting on with things pretty much the same (palpitations kick in only whilst waiting for the butt jabs).
I’m grateful to be given something else a chance before oral chemo.
Good luck on your treatment - as well as all the other good advice on this forum…. I would say look after your hair, mouth, gut, drink lots of water and moisturise!
Glad you posted this as was about to ask a similar question. Have been on 125 mg for 28 months and now the last two bloods have been 0.9. I will try 100mg and see how it goes. It’s worrying when it’s been working so well.
Hi, I started on 125mg in Dec 2020 & dropped to 100mg after bloods below 1.0. I had to drop again to 75mg & bloods have been OK & was told lower dose just as effective. Im 3 wks on & 1 wk off. It is normal & nothing to worry about. I've had a reduction & lesion starting to scar over, so all good as far as I'm concerned.If bloods were still too low on 75mg then I was told that I would just have 2wk break in between instead of 1wk as its working.
I have been on 75mg for over 3 years now ot is still keeping cancer progression away. My neutrophils are still often below 1 - no big deal. I don't get Neutrogena fevers, l have hadonly 2 very mild infections in all that time. I did switch oncologists which was good for me she has a much more relaxed attitude about the neutrophils, l don't worry about it, sometimes l take an extra week off sometimes l don't. You absolutely don't have to worry about the lower dose working. When drugs are tested they usually have a higher than needed dose because the company is motivated to get the drug approved. I haven't heard of anyone having a problem with the lower dose not working. Doesn't mean it won't stop working one day, but lm sure it won't be because of the dose. It will be because resistance of the drug has occurred and metastasis has advanced more.
Best wishes for a good, long outcome for you. I know it's hard to not worry and we are all on this dangroller coaster together.
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