neutrophil count

[susiemarmite]

Hi - I'm at the end of the first cycle of ribociclib and letrozole and my neutrophil count is very low ... as are all my bloods. I'm on the week gap (letrozole only) - how quickly do these markers bounce back? the oncologist didn't seem concerned.

[Discocat]

Hi, yup that is pretty normal. That’s also why there is a gap week….to allow them, and us, to recover. I get my bloods done at the end of week three and at the begining of the next course, normally one day before starting the new pack. By this time things are back to a decent enough level. It’s early days yet, my oncologist told me to expect it to take 6 months to a year to get the meds, dosage and gap periods sorted. There is a lot of space for adjustments as many here have experienced.I’ve found there’s less of a drop now for me, but I changed to Ibrance only 4 months ago. At the moment my wbc drop to about 2500 and rise to just around 4000 at the top end. Previously, at the start of my treatment with Kisqali I would drop to 1800 and rise to about 3500… my liver enzymes were also constantly rising on the first meds but now they are at normal level.

If your oncologist is not concerned that’s a good indication. Best wishes for your on going treatments.

Take care,

Zoe x

[Discocat in reply to Discocat]

Oh, also just to remember there are different normal levels for MBC patients and non cancer patients…although on test results in my experience they still show the normal margins being for regular non cancer patients…meaning you can have a highlighted result that appears low but is still very much within the expected margins for people on your treatment plan.

[susiemarmite in reply to Discocat]

Thanks Zoe - my levels have tanked from 5 down to 0.6 ... so I'm currently neutropenic but again, the onc. wasn't worried. I'm back in on Friday for more bloods so let's see - but thanks, fingers crossed.

[Hazelgreen in reply to susiemarmite]

Hi Susie,

My understanding is that levels below 1.0 for neutrophils are concerning, especially if the level does not improve much during the week off.

Research presented at the San Antonio Breast Cancer Symposium, December 4-8, 2018 indicated that lower dosages (400 mg or 200 mg) of ribiciclib are equally effective for those whose neutrophils require lower doses.

“The results from across the MONALEESA program suggest that the efficacy of ribociclib was maintained regardless of dose intensity,” and that patients’ Overall Response Rates and Clinical Benefit Rates were superior on the reduced dosages."

If your oncologist isn't familiar with this research, you might mention that this was one of the reasons that the FDA in the USA announced last year that drug companies must now include optimum dosing considerations rather than merely MTDs (Maximum Tolerated Doses) in their drug trials.

Since you have socialized medicine in the U.K., as we do in Canada, you could also point out that lower doses of targeted drugs save the government considerable money.

Best of luck with this,

Cindy

[susiemarmite in reply to Hazelgreen]

Cindy - thank you - this is really helpful too. I have received a letter from my oncologist and she is indeed reducing the dose for my next cycle and she is going to review me 2 weeks into it .... so I think she's on the case. I will report in as to what my new dose is - I will get this information tomorrow when I am back for my zometa infusion - thanks again

[Hazelgreen in reply to susiemarmite]

Aww, that's lovely to read! I had to educate my oncologist myself when he was keen to put me on ribociclib so I started at the lowest dose, and went up from there. Ironically, it turned out that I needed the highest dose! When I wasn't getting much by way of results with the lower doses, I suggested to my patient oncologist that perhaps that was due to my weight (180 lbs).

Hugs,

Cindy

[Mumberly in reply to Hazelgreen]

Thanks for this information. ♥️ My dose was recently lowered from 600mg to 400mg because of my blood counts and I was concerned about efficacy.

We’re still playing with it to make sure my body cooperates with the meds, but I’m definitely feeling better about things in general, because of all the things I’ve learned from being a part of this board.

Thanks for sharing your knowledge with the newbies ☺️

Kim

[LadyKatarina in reply to Hazelgreen]

Hi Cindy! Are there papers with this information? I did watch that youtube program--the "OCE Conversations on Cancer--More Isn't Alwasy Better." Was wondering if there is anything by the FDA that is printed up? That might state their new policies? Thanks and be well! Kay

[Hazelgreen in reply to LadyKatarina]

Hi Kay,I'm much less familiar with the FDA regulations than is Anne Loeser (Bestbird). I believe that Anne worked with Friends of Cancer Research to push the FDA to make this change. Why not send your query to Bestbird?

Hugs,

Cindy

[LadyKatarina in reply to Hazelgreen]

Good idea Cindy!! Stay well! Kay

[Discocat]

🤞

[Melpub]

The main question is how do you feel? My neutrophils were very low when I was on chemo and I felt exhausted and breathless. They are very low on Ibrance but I feel okay and go to the gym. My oncologist has pointed out that the low neutrophils on Ibrance may look the same in the blood but don't necessarily mean the same thing. Just to complicate matters: some women whose blood looks like mine feel awful and some feel like me--relatively okay.

[susiemarmite in reply to Melpub]

I feel ok - perhaps a little tired-er in the evenings but feeling ok - thanks for this info, very helpful x

[Melpub in reply to susiemarmite]

Also, over time things have gotten a bit better with my hair. It's not quite the fright it was at the beginning. Not "normal" either, but better. This is after being on Ibrance since 2018

[wendle3007]

I'm on Palbociclib (Ibrance). Here in the UK the blood tests are taken the day before we restart the tablets so we've had the full week off. For my first two courses, my neutrophils were low (below 1) so I had an extra week off. But when I started my third course they reduced the dose (125mg down to 100mg) and bloods have been fine since. As another member said, they don't look for us to have completely "normal" levels, I've been told that as long as the neuts are 1 or above they are happy.

I also had falling white blood cell count but the nurses told me that they are usually more concerned if they are very high than very low. On my last test though, they had increased slightly.

I'm sure your medics will be keeping an eye on levels and will make the right decisions regarding dosage to keep you in the right margins. Best wishes

[susiemarmite]

Thanks so much - yes, I have now been told they are reducing the dose and will be taking full bloods on Friday (next cycle starts Saturday) ... and back in 2 weeks for more monitoring - thanks for this insight xxx

[Gingerann1]

Hi Susiemarmite! I have also been told by my Onc that he would only make adjustments to my Ibrance if my Neutrophils fell below 1 (1000). I have been all over the place over the 15 mos I have been on. One month it went from 2 (2000) down to 1.1 (1100). Next month was 2.5 (2500) so your current count of 600 would be alarming but will probably bounce back if meds are tweaked slightly. Best to you on this treatment regimen. I just became NED (no evidence of disease) this last mo. Yay! with first line treatment of Ibrance (125 mg.) and Fulvestrant shots. Will stay on it until something pops up somewhere but I hope it won’t be for a long while so I get to enjoy this feeling as long as possible and the gift of extra time. Praying for a cure for all of us daily…🙏🏻. Lin

[susiemarmite in reply to Gingerann1]

I am so excited to hear you are NED!!! brilliant Gingerann1, just brilliant! - long may it last! Can I ask, did you take any supplements / adjust your diet? what's your secret sauce? x

[Mumberly]

I have the same issue with my blood counts.

In January, I started at 600mg of ribo and after 2 weeks my whites, reds, and platelets were all low. But I never felt any different so I had no idea 🤷‍♀️

My oncologist took me off ribo at this point (so I missed one week and the next was my week off anyway). I was so emotional when she reviewed the blood tests because I thought she was pulling me off all together. And I’m not an emotional person lol. I had no idea how typical and tricky it is to find the right balance.

After 2 weeks off, my counts had bounced back, so I restarted at 600mg.

At 2 weeks the red and platelets had improved and my whites had dropped, but not enough to pull me off again.

2 weeks after that, the whites had dropped below the threshold so it was delayed again. This was after my week off the med, so that was disappointing.

2 weeks later, they had come back and now I’m a week into 400mg in hopes my blood counts will stabilize or improve. I go back right after Easter weekend to find out.

It was interesting to read from others that replied, that MBC blood count ranges are different than non-cancer patients. Mine were always at the bottom of that range before cancer so I’m not expecting leaps and bounds now. But a little stability would be nice. 😁

I do feel very fortunate to be on this drug and also that, other than low counts, my side effects have been very minimal.

I hope we both find the right balance soon.

Kim

[susiemarmite in reply to Mumberly]

Thanks for sharing this Kim - it's helps to understand how others are affected and what to expect going forwards ... hopefully you will stabilize very soon ... thanks S x

[Figletf in reply to Mumberly]

Everytime I need to switch meds my white blood count and nuetrophils drop With the newest combo of Verzenio/Tamoxifin I was told I had Neutropenia after just two 1/2 weeks in. I had just stopped having the diarrhea episodes 😞My Onc dropped the dosage for the next week but told me I could resume 100 mg twice daily after my blood work improved.

Before I ever had breast cancer my normal white blood count was 3, so mine dropped as low as 400.

Presently I feel fine on the meds after two more weeks of diarrhea.I will have to have blood work every two weeks until things stabilize .

I have now had chemo infusions, Anastrozole for two years,tried IBrance until it wasn't doing the job,went on to Xeloda which kept me stable for almost two years and now the newest Verzenio/Tamoxifin .I also have a team of prayer warriors who bombard this satanic disease daily with me and my Moffitt Breast Clinic.

I am still hopeful🤩and grateful to still be alive being first diagnosed in May 2016 with a prognosis if possibly 14 mo. Amen