When do you start worrying? I have no clue what is normal when you are on Ibrance.
What is normal for white blood cells? - SHARE Metastatic ...
What is normal for white blood cells?
I wasn't on Ibrance for long, but when I was my white blood count got as low as 1.0 (standard range is 3.5-11.0). My oncologist seems most interested in neutrophils, as those are the white blood cells that fight many infections. The standard range is 1.8-8.0, on Ibrance mine dropped to 0.5 once and that seemed to worry my oncologist. Do you know what yours are at now? Are you taking any supplements to boost immunity? It's such a challenging time to be on meds that lower our immunity! I hope Ibrance is kicking back your cancer.
Hello and welcome to the group. I am on Ibrance as well. My oncologist takes the ANC (WBC x (.)Neutrophils). If it is 1000 and up, it’s okay but I’ve gone as low as 880 and was still told to continue.
Yes, that’s how my oncology nurse decides if I’ll go on to next cycle too. I sometimes stop taking it for more than the usual week, waiting for wbcs to improve. Usually takes me 2 - 3 weeks before they’re in what she considers safe range of 850/1000+.
Good luck, Macromom. I’ve been very fortunate and not had any ill side effects other than low wbcs. On ibrance 100mg since 9/19.
Hugs to all,
Kathleen
Hi SMPG -
I agree with what the others have written and I'll add that my WBC's are usually 1600-1700 and ANC's are 600-900. I initially worried about getting sick more often but have never even gotten a cold during the five years I've been on Ibrance (well, maybe a sniffle when I'd visit my nephews, but no fever, so maybe I'm just allergic to them or their pets! ).
I hope you do well on that treatment! I lasted 40 months on that combo and now 20 on the next (Faslodex + Ibrance). It's good stuff!
Take care,
Lynn
Thank you. That is reassuring.
Hi Lynn,
May I ask why they took you off ibrance?
Is it indeed the case that these drugs simply stop working at some point?
I’ve been on ibrance since 9/19 and taken off it in March given fear of virus infection when immunity low. Will have scans in June to see if there’s any metastasis and perhaps go back to ibrance then if Virus cases in the area are lower.
Thanks so much and all best,
Kathleen
Hi Kathleen -
Oh, I can now see I wasn't clear...early morning is not my best time of day!
I'm still taking it, in combo with the Faslodex. I've been on this combo for 20 months AND COUNTING, after 40 months in combo with Letrozole.
Have not taken a break...
I hope it works for another 20 months. To stay on someting without looking for new side effects.
Good luck Lynn
Hi Jerseygirl!
Yes, that is certainly my hope...scans in two weeks, fingers crossed, not terribly optimistic this time around...🤞
Actually, Lynn, it’s I who was confused as I see now in your original text. 🙄 It was the Letrozole you went off. Did that stop working at some point? Is Faslodex administered via monthly injection? Sounds like few or no side effects.
Thanks and all best,
Kathleen
Hi Kathleen! I was on Letrozole + Ibrance for about 40 months (after Letrozole only for about 4). Had some "subtle" progression so swapped Faslodex (Fulvestrant) for the Letrozole and remained on the Ibrance. This has worked for 20 months, but is likely coming to an end (e.g. tumor markers up 50% in 3 months; indicators on labs of bone and organ destruction).
I have scans in two weeks to see what's really going on, likely change to treatment.
My next treatment will be Piqray along with Faslo/Fulvestrant, re: the latter, it's like why not toss it in?
Does that make more sense? I'm much smarter and more articulate this time of day!
Yes, thanks. Please let us know about your scans. Will hope it’s good news.
All best to you,
K
And, yes, Faslodex is administered via monthly injection after a bi-weekly initial "loading dose". I've found it to be significantly easier than Letrozole was, but even that wasn't too bad...fatigue, very bad knees, etc. ...which have cleared up with the Faslo.
Way to go Lynn. Wishing you many more years on Ibrance!
I’m on my first round of Ibrance 100mg had my bloods done this morning and my neuts are 0.7 so having 2 weeks off and then start again. 😔
I just remembered something else my oncologist told me when I was on Ibrance....that even if the WBC and neutrophils get quite low, people don't seem to get ill or fevers as much as when those levels drop on normal chemo. I can't tell you why that is, but that may be why they aren't as concerned with the lower numbers. I'm on IV chemo now and can't get it if my neutrophils are below 1.5.
Hi MacroMom -- My doc told me the same re: low counts not necessarily translating directly into lots of sickness, and my personal experience backs this up...
Sandra, thank you SO much!
I'm definitely an optimist, and absurdly inclined toward happiness, but when I objectively view my "journey", it's not all as "grand" as I feel and project . But, happiness IS my goal, which I generally achieve, so I'll leave the rest up to my body and the pharmaceuticals!
After meeting with my onc, I created a document to lay out past/present/future treatments. After a change in treatment (likely very soon), I'm estimating my life expectancy at about three years, two of those feeling reasonably well (assuming the Piqray-induced diabetes doesn't ruin my life! All I can say is, "I'll take it!!". Sooo much better than being hit by the proverbial bus!
I do so value your support...Thank you.
Be well, best wishes,
Lynn
So sorry to hear but I must say you got a really good run out of Ibrance. Mine was only13mos. Did your cancer mutate what is the chemical difference between Piquay and Ibrance?
Hi ChirsVict,
I guess what happens is your cancer "mutates" but I'm not certain that's technically/medically accurate, so I use the squishier term "outsmarts". So I think the cancer eventually outsmarts whatever barriers you put in its way.
So while we humans pride ourselves in being very intelligent being, I think that cancer -- along with cockroaches -- might have us beat!!
What I like about a change to Piqray (whenever that occurs...again, I'm expecting a change, but obviously hoping to postpone this ) is that it goes after the cancer in a different way, to address the PI3K mutation in the cancer, vs. whatever a CDK4/6 inhibitor does.
After Piqray + Faslo, I'll do Extremestane + Everolimus, and then Verzenio, in effect looping back to another CDK4/6 inhibitor, which is closely related to Ibrance, but operates in a slightly different way and has shown some benefit.
What I like about holding the Verzenio off 'til my 5th line is that it gives me a break from the CDK4/6 inhibitors....I read a study on this site a year or so back that indicated that a break from Ibrance (I believe they looked as just 6 weeks) allows it to "reset" and regain some effectiveness. So I'm hoping this effect will boost the already known post-Ibrance benefit of Verzenio.
Sorry if too much info!! I'm just in the mode right now of thinking all of this through...
I find that very interesting so you actually know you have PI3K mutation.
I am now on Verzenio and my doctor did not check for PI3K I will ask though
I’m going to the best hospital NY and my Onco is top rated but I question everything! That being said Mets is still in bones. I’m concerned about this new treatment but hopeful. Your plan sounds really good and it may give you much more than you think!
I learned about it when I had the genomic testing done five years ago. I recently asked to have it re-done/updated but was told that it's much better to do the test while your cancer is actually progressing...So I was advised to hold off. Maybe that's why your onc hasn't suggested it yet?
Best wishes Lynn!
My neutrophils run about 1.0-1.3 and they don’t worry about that at all. I’m on the same Ibrance (at 75mg)plus Faslodex combo that Lynn is on. I have not been sick at all in the two years I’ve been on Ibrance except for really bad allergies in the spring. (Maybe Ibrance repels Covid19 too? One can only hope!) I started on 125 mg but had to keep skipping weeks to keep my neutrophils in the right place so I dropped to 100 and then to 75 almost immediately. I haven’t had any side effects except exhaustion on either Faslodex or Letrozole so I think that’s mostly the Ibrance. Elaine
The only thing my oncologist worried about were my neutrophils and my platelets. Everything else always stayed in the bracket he wanted but my neutrophils would drop to 0.4 each month and would take three weeks to get back to 1.0. Some months my platelets got quite low but they bounced back.
Hi Sarah. I only had on month on Ibrance, then had to stop because of lowered immune and also then surgery however, I am starting next week again on a lowered dose. 100mg. Hope that works. My new, young oncologist was able to get the costs of the drugs covered. Wonderful. I get a chance to try this again. Starting next week. I had the same problem though took 3 weeks to get the immune system back up on the first try. Our systems are very much alike.
Cheers, June S.
Good luck June. I’m so happy your new oncologist was able to get you the coverage. Everybody should be able to access these drugs.
I agree. Especially diseases like Cancer. Awful to have life saving drugs and not able to get them. My new oncologist has really stepped up to the plate. Not just on the drug coverage but other ways as well. A great relief.
Cheers, June S.
Hi, Sarcie!
Supposedly, supplements of Vitamins B12, C, and E help to boost neutrophil count. God bless you!
Linda
The oncologist I go to at Moffitt Cancer Center says my ANC can go as low as .750 as long as I don't get sick. Blessings, Hannah
The oncologist will monitor your labs closely.
They typically look at the ANC (absolute neutrophil count) or granulocyte # which is part of the complete WBC.
Standard value is min. 1.0.
If lower than 1.0 they will lower the dose typically after a short break to let it rebound.
Unfortunately there’s no way to boost white blood counts on your own.
My onco does not want neutrophils below1.0. When I was on Ibrance would have to take a short break. Now have gone on to Verzenio going in for blood tomorrow
We’ll see if tumor markers have gone down and neutrophils are better
Mine has ranged from 1.68 to 2.79 (1680-2790). Shortly after starting on IBRANCE 125mg, I had my dosage lowered to 100mg. I do know that supplements of B12 and folic acid can help white blood counts.
God bless you!
Linda XXOO