Should I be concerned?

[JKMS]

Hi all - I have been on Letrozole and palbo for just over three years and remain NEAD (for now). No noticeable side effects until I was diagnosed recently with osteoporosis. My neutrophils have always been OK but last month they were below one. My onc allowed me to continue with the meds but this month they were one and for last few years, they tended to be above two after the week off palbo. In anyone’s experience does lowering neutrophils after a period of stability indicate that something is amiss and that this line of treatment may be coming to an end? I have a meeting with my oncologist in next few days and keen to push him on this as he is often a bit nonchalant to be honest 🤷🏻‍♀️

[Hazelgreen]

It seems to me that you should at least be looking at your cancer markers when doing your next bloodwork. Otherwise, a CT scan may be in order to see why your neutrophils remain so low. Perhaps, there is another source of infection...

[JKMS in reply to Hazelgreen]

Thank you - my new provider forgot (!) to test the cancer markers a few days go so I may ask for a new blood test.

[Beryl71 in reply to JKMS]

In Scotland they don't test for cancer markers, so I don't think about them any more! Just wait for scans. I feel much better with less things to worry about. Half the battle! X

[JKMS in reply to Beryl71]

Ha yes that’s a good point! I’m in London and had to ask for them historically otherwise as you say they don’t check routinely

[Onedayatatime60 in reply to Beryl71]

I have also never been tested for markers in Canada and Onc does not feel they would add anything of value

[Beryl71]

Well mine have never been above 2 , usually just over one. I was stopped once when they went below 1 and I had an infection.

[JKMS in reply to Beryl71]

Thanks. I have had a few colds so maybe that’s it but I tend to ignore them as in greater scheme of what we deal with, a cold is nothing!

[Gingerann1]

Hi JKMS: I have been on Ibrance and Fulvestrant for 3 years next month, also NEAD for now 19 months. My Neutrophils dropped below 1 to .9 for 3 months in a row recently and I thought Onc might make a change in Ibrance dosage as I have always been on 125 mgs. But he wanted to wait a bit longer and sure enough last month they were 2.3. This month (10/11) they were 1.9. It is truly a roller coaster ride with our meds. I don’t expect any changes in meds until there is progression but do talk to your Onc about your concern. Wishing you continued stability and a long run on your current treatment.

[JKMS in reply to Gingerann1]

Thank you - that is very helpful to know. Also after the first time they dropped, the oncologist said my bloods may have been taken too early as neutrophils tend to be lower in the morning. The provider said that was wrong but quick Google would prove he was right of course! As you say it certainly is a roller coaster!

[Vflebla in reply to JKMS]

I read some research somewhere that the low neutrophils have proven not to be as bad in the face of Ibrance intake as in many other conditions and very few serious infections have resulted, I will look for that research and post it, my neutrophil count is all over the place, but stays mostly around 1. My last PET scan showed marked improvement.

[NPmary]

I don't think it matters and I have never read anything in the scientific literature to support your fear (though, I know how real it is). Low neutrophils are a side effect which can be managed. It means you should be a little careful about not catching the flu, that sort of thing. NEAD is fantastic so happy for you. Are you on a med like xgeva - it is known to decrease fractures - especially important if you have MBC and osteoporosis. Wishing you the very best.🌺❤️🌺

[JKMS in reply to NPmary]

I’m just on Letrozole and palbociclib at the minute as not too keen to take more drugs for the osteoporosis (but may review that!). My oncologist did not seem too concerned and he suspects they may be lower because a new clinical home care provider I’m using (who are truly dreadful) are taking my bloods too early in my cycle!

[Kiss_my_grits]

I haven’t read anything that links neutrophils and regression. Though I get that being the first place your mind goes 💔 My onc told me she lowers the dose of Ibrance for a lot of patients at the 2 year mark due to neutrophil counts (I’m considering due to fatigue). Good luck. Hopefully you can get some reassurance soon from tumor markers.

[JKMS in reply to Kiss_my_grits]

Thank you and that’s what my oncologist said too 🙏🏻

[TammyCross]

Agree, low neutrophils are a side effect, not related to effectiveness. Your onc definitely should lower the dose if this persists. I was able to remain on 125 of Ibrance, but had to lower the dose on my 2nd CDK4/6 inhibitor. There is a lowest dose they consider effective. The CDK4/6 inhibitors either work at any accepted dose, or they don't work at all. Ibrance has worked for you and there should be no problem reducing the dose.

You should be on something for the osteoporosis. There are several alternatives. For me, Xgeva was like a miracle drug -- but I stayed on it too long and got osteonecrosis of the jaw, a terrible side effect. These bone meds stay in the body for a long time, so it isn't necessary to stay on them for years.

[JKMS in reply to TammyCross]

Thanks and I will really think very hard about your views re the osteoporosis. I registered with the osteoporosis section and posed a few questions and I was concerned about all the comments about side effects so I then decided to avoid meds. I’m pretty active and do yoga most days which isn’t the best for osteoporosis🤷🏻‍♀️ A bit like with cancer, I’m in no pain from it but of course the reality is that it’s there! And my diet and weight probably don’t help (I’m veggie, hardly any dairy and keto-ish!) so what I thought may be better for cancer isn’t good for my bones!

[TammyCross in reply to JKMS]

Sorry the clinical home care is awful! Not surprised, but it is really too bad.

When I had osteopenia (not osteoporosis) with my initial breast cancer, I was able to get rid of it with exercise. I did not take calcium supplements, as they advised. They said only weight-bearing exercise worked and swimming did not, but I was swimming laps for up to an hour a day and it seems like it worked. I don't see why yoga wouldn't. Probably the combination of the aromatase inhibitor, lack of calcium from dairy, and low weight is overriding the exercise. Maybe more strength training and doing vegetarian instead of vegan? Where is the osteoporosis? Which bones?

[Lilywallytootsie]

I have been on Ibrance/Letrozole for six and a half years and my neutrophils are frequently low. They keep me on the drugs because I didn't get sick. So it's doubtful that it is a sign of progression. My neutrophils do better when I take a vitamin pill everyday. Wishing you best wishes. Hannah

[Chef50 in reply to Lilywallytootsie]

My neutrophils are also frequently liw and I iften have to take an extra week off from iBrance. I am always looking for something to keep their levels up.What vitamin pill do you take?

[JKMS in reply to Chef50]

I would be super interested to hear about this as well. I take about 20 vitamins a day so will happily add another one if I thought that would help!

[Lilywallytootsie in reply to JKMS]

You probably don't need anymore. Does your oncologist approve of all of those vitamins. You don't want them to interfere with your treatments.

[Lilywallytootsie in reply to Chef50]

I take one multi vitamin a day. It is usually. Don't think the brand matters. Just a good multi vitamin.

[Trissh]

I just had a discussion with my doc about dosage of Ibrance yesterday. I took an article to her published in NPJ about the 5/2 schedule after finishing the 4 year trial. States efficacy is not diminished and neutrophils are less affected. She has finally agreed that the data is there to support the alternative schedule. nature.com/articles/s41523-...

[JKMS in reply to Trissh]

Thanks that’s very helpful

[Dragonfly2]

hello JKMS! I share your concerns about neutropenia…it has a significant effect on your health such as fatigue, immunity, mental strength…yes, I was on that roller coaster ride fighting the fatigue and depression caused by the extremes of the Pablo treatment. Yup, first the dosage was reduced to 100 mg and still I had to take two weeks off after being reduced physically and mentally …I started to hate IBrance.

Then I discovered the 5/2 day schedule and it had made an enormous difference. My neutrophils are still around .9 to 1.2 but the roller coaster is gone. I accept that one day Pablo will stop working but I’m still hanging on to it until the scans show otherwise. Here is an excerpt from the conclusion on that study of the 5/2 schedule.

“In conclusion, this single-arm phase II trial of palbociclib administered at an alternative 5-days-on/2-days-off weekly schedule, in combination with either letrozole or fulvestrant, met the predefined primary endpoint in reducing the incidence of high-grade neutropenia, without compromising efficacy. While randomized trials are needed to confirm this finding, this alternative schedule provides an option for patients having difficulty tolerating the standard 3-weeks-on/1-week-off schedule and to potentially avoid drug discontinuation due to neutropenia. Our data demonstrate sTK1 activity a promising biomarker of prognosis and disease monitoring in patients receiving CDK4/6 inhibitors.”.

Every day is precious, and if you can improve the quality of each day, it is a win-win. Progression is an eventual reality, but not today, not today.

[JKMS in reply to Dragonfly2]

My oncologist is now saying that the healthcare provider is taking the bloods too early in my cycle so I may go back to being treated in hospital and get the bloods taken at a different day to see if that makes any difference. You are so right about every day being precious and your thought about progression not being today I will keep close to my heart when I get my three month scan next month.