Hi to all,
On my last blood tests, I've had really low lymphocytes counts.
For two years between 1,6 and 2,5 and then:
Jan 2023 : 0,75
May 2023 : 0,6
July 2023 : 0,61
Doesn't seem to come back in the normal range. Has anyone experienced this ?
Thanks a lot
Love
Lu
Hi,
I don’t think you said what dose you were on.when my counts stopped recovering on the 125 mg dose, the dr put me 100 mg. It worked like a charm.
Best wishes,
Corby
Hi Merma,
Thank you for your answer. I suppose the onc will do that. I'm on 125. I hope it won't induce progression.
Love
Lu
I started out on 125mg 5 years ago. Was dropped down to 100 about 8 months in. Been on 100mg ever since. Much better. Stable for 5 years now! You can tooooooo!
The dose reduction happened almost 3 years ago. I have been in remission and on Ibrance for over 5 and a half years. The longer you are some thing, the greater the chance you build up side effects.
Hi Lulu,
I was stable for almost 6 years. Just had a recurrence. If the biopsy shows that the mutations are the same, they may keep me on Ibrance with a SERD. For the last two cycles of Ibrance, I’ve taken three weeks off, and the blood counts very slowly came up. So, I think they may lower the dose too. Everything is up in the air in terms of systemic treatment. But since this is endometrial cancer, I’ve been receiving brachytherapy at the recurrence.
Best wishes,
Corby
I started out at 125mg about 24 months ago. From the beginning I struggled with low counts. My onc wanted to lower my dose to 100mg months ago but I was concerned about progression and kept talking her out of it. Finally I became tired of the stress of wondering what the count would be this month and would I need to take an extra week off to help them rebound. Two months ago I agreed to lowering the dose and the count seems to slowly be improving. I've read on this site that if Ibrance works for you at the higher dose it's going to work at a lower dose.
Hi Lu. I don't know what you're on, but I do know my numbers changed the longer I was on Ibrance and letrozole. I started on 125mg in Feb 2017, dropped to 100mg a few months later and as of January 2023 I'm on 75mg of Ibrance. Although my lymphocytes haven't improved (they've always been low) my other numbers did improve (especially neutrophils) with the lower dosage. I've had no progression with lower dosage (I don't believe Ibrance works that way. I think when it stops working it doesn't matter what the dosage is. I may be wrong, but that seems to be what I've read over the years).
Hugs
Susan
I started on 125 ibrance. Was on it a few months but was sick all the time, Very low numbers . Was even hospitalized. Then dropped to 75 and am 4 years stable.
Hi to all,
Thank you so much for your contribution.
I was extensive bone-only de novo MBC in May 2020. Then complete metabolic response for almost 2 years with anatrozole, ibrance 125, zoladex and xgeva.
I'm just afraid of the potential progression because I had progression in 3 mets a year ago - had radiation on one of them at SUVmax 8 end of January 2023. The other 2 being more or less stable. Then in May 2023, complete metabolic response again.
I don't feel it's the right time to start reducing ibrance. Unless these low lymphocytes are a sign that the desease is progressing.
For those who have been stable for a while, have you also had low lymphocytes ?
Thanks a lot
Love
Lu
Hello Lu,
I was on Ibrance 125mg/Letrozole for 6½ years. My white blood cell counts were always low, my lowest ANC was .50. Despite that, I never got an infection.
It's a great drug, wish it still worked for me. Unfortunately I had progression to L1 vertebra and increased nodules in lungs.
Take extra precautions, hand hygiene etc. Maybe wear a mask in public. You may want to avoid buffet style restaurants and of course avoid being around anyone who has a known contagious illness.
Good luck to you, namaste.
Hi,
Just was reading some previous answers. I read you have lung nodules. What are the symptoms? I have difficulties breathing deaply and some times it makes me cough.
Thanks a lot
Hi Lu--this is confusing. You say your Lymphocyte counts are low, and everyone else is talking about Neutophil counts, i.e. ANC or Absolute Neutrophil Count. The replies also mention the total WBC or White Blood Count which is all of the white cells. It is the Neuttrophil count that is monitored while taking Ibrance. I suggest you ask your doctors why you are having low lymphocyte counts. I am not sure they are reduced while on Ibrance. Best to you!
Thats' right -very confusing. My neutrophils are fine - always have been - 1,9 last time.
It's just the lymphocytes which are so low. I believe it could e the radiation I had in January. But why don't they go back up ?
I am having the same issue with my 1st month on Verzenio (I think mine was .3). My Onc requested a 2 week break from Verzenio and then retest. I have read (don't know how accurate) Turkey Tail Mushroom (fruiting bodys of at least 2g per day) can help increase your numbers. Also fasting and cold showers. Don't know if any are true. I also found this product but have not known anyone that has taken it. It is a bit pricey. amazon.com/dp/B0BVGPVB3T/re...
Mine were never 'normal' on Ibrance for 5 years (on 75 MG most of that time), I was just as careful as I could be to not catch infections and the Ibrance worked well, I stopped worrying about the counts, had blood tests less frequently. Good news is that the possible netropenia fever that can happen in people with cancer treatment - happens rarely for people on Ibrance. Hope this helps some. I was terrified when I first took it and saw those counts. 🌺
Ibrance, surgery, ibrance 
To start ibrance or not?
Infections with Ibrance
Ibrance and Letrozole.
Ibrance and the tongue
