Ibrance and low WBC

[Thatflowerlady]

Anyone that has had to postpone their ibrance cycle due to low WBC , how long has it taken until your counts were high enough ?

[Nannymop]

Hi

Yes I had to postpone every month when I started the combo in dec 2017 always dropping to .6 in Aug 2018 I started having a white cell boosting injection 2 days before bloods and I have been good ever since . Xx

[Thatflowerlady in reply to Nannymop]

Was it a B12 injection ?

[Nannymop in reply to Nannymop]

Neupogen causes a bit of bone pain for a few days but nothing to bad worth asking xx good luck

[Thatflowerlady]

Thank you Sandra , my dosage was lowered last cycle after 2 weeks off but my counts dipped again on the lower dosage . I am in my second week off with the 100 mg .

I was curious how long others had to take off for counts to come back .

I will ask my dr or oncologist about the boosting medication

We do have coverage thank goodness the cost of the medications is crazy . It is close to $9,000.00 a month between

Ibrance , Fulvestrant & Xgeva. In Ontario Canada

I am not sure what will happen when my husband retires next spring but I know there is compassionate programs to help / cover some cost .

That you for sharing your knowledge

Luann

[Nmartinez15 in reply to Thatflowerlady]

I was off for a month. But the onc doctor did it bc I went thru alot things. Surgeries, radiations, meds.

[Teddielottie]

I think I had a similar injection , but for me it was just as a one - off , for 4 days after a breast reduction op (while I was taking Ibrance ) to help prevent infections . Mine was ‘Zarzio’ Filgrastim and my onc had to get permission from the pharmacy ( as on the NHS in UK) for me to have it . Zarzio works by encouraging the bone marrow to produce more white blood cells . It was a small daily injection my husband did for me in my butt !! Luckily the bone / muscle side effects were tolerable and when I had my monthly bloods that month my WBC and neutrophils were up ten fold for that cycle !

But I haven’t heard of these injections being used here for people on Ibrance when their wbc is low ... usually they would have a few days extra off in their cycle or have an Ibrance dosage reduction .

[HopeinNJ]

First time I’ve ever had to do this. Took off three weeks. Resuming this weekend.

Will continue on 125mg which I have been on since 12/17

[Thatflowerlady in reply to HopeinNJ]

Did your oncologist say why they are leaving dosage at 125 mg ?

[HopeinNJ in reply to Thatflowerlady]

Yes. I’ve tolerated it for nearly 1.5 years so he wants me on the same.

[AuntyJane]

I just finished round 1 of Ibrance 125mg and 3rd fadlodex shot. WBC dropped to 1.0 and neutrophils to 200 (she wants it at 1000) so my one took me off for a second week. I asked about neupogen shot which I had years ago after high dose chemo to bring WBC up. Dr said it works with chemo not Ibrance. She said after second round if it’s still low she may adjust dosage to 100 but it’s common to,drop like this. I feel so vulnerable though and hoping in time things will stabilize....for all of us🙏

[Hidden]

I just finished my second round. Started in June on 125 mg. Had to come off for three weeks rather than the usual one week because my neutrophils were extremely low. Finally made it back above 1.0. He dropped me to 75 mg. This time they dropped below, but I’m on my off week now. He said we will test next week and may have to do two weeks on, one week off instead of the normal 21/7 regimen.

[Thatflowerlady in reply to Hidden]

Thank you for sharing. I am going for blood work tomorrow so I guess I will find out if I proceed this week or take another one off which would be week 3 . I have not heard of anyone having 3 weeks off , it make me feel better know that your oncologist is still confident in the ibrance treatment .

Luann

[Hidden in reply to Thatflowerlady]

You’re welcome. It’s so hard when you first start on this journey. I didn’t want to be off it for so long, but it is better to be safe than sorry. I may have to be off two weeks this time if they don’t come back up, but it made me feel better that we can modify.

[Hidden in reply to Thatflowerlady]

I have always had to wait three weeks each cycle. My oncologist still believes in the Ibrance and my Mets have stayed the same after 1 1/2 years with the exception of this month when my CT scan showed a new met in my skull.

[Thatflowerlady in reply to Hidden]

Thank you for sharing Sarcie it is nice to know that there is still a possibility of a restarting after a long break ,

I am sorry to hear about the new met , have you discussed the treatment plan with your oncology team for it ?

[Hidden in reply to Thatflowerlady]

He told me he wasn’t changing anything as he sees spots pop up on one scan and he gone on another. If my next scan shows any more progression the. He said chemo would be next for me as their aren’t any other pills I could take.

[Thatflowerlady in reply to Hidden]

Fingers crossed on the next scan .

[Lilykristymichael]

I was off for two weeks until my white count went bac up to 1.4. I've been back on now for 11 days.

[Thatflowerlady in reply to Lilykristymichael]

How are you feeling now that you are back on the ibrance ? I was really tired when I was off .

[nstonerocks]

I’ve been on it about 4 years. Stopped for a. Month last Spring. Not sure what my wbc was as I didn’t get it checked (I know I know, but my doc is 2 hours away and I have such a long ha w Ibrance). Felt much better after the month of

[Thatflowerlady in reply to nstonerocks]

I hope I am the same , I have blood work every month for it before starting the next cycle .

[nstonerocks in reply to Thatflowerlady]

Use the time to eat well, hydrate and sleep. You’ll be fine!

[Thatflowerlady in reply to nstonerocks]

Oh I definitely want to sleep , dragging my butt . Thank you for your advice

[nstonerocks in reply to Thatflowerlady]

And don’t feel guilty about it either. Your body needs it

[mariootsi]

My onc put me on a 3 week on, 2 weeks off because of low plateletes. Seems to be working.

Each of us is different so I'm sure your onc will figure out a good schedule!

Try not to worry. There always seems to be an option.

[Idobelieve]

Just about 2 weeks. Originally had 125, dropped to 100 and now trying 75. If that drops my count then I’m not taking it anymore.

[Thatflowerlady in reply to Idobelieve]

Is it your choice or your oncologist recommendation?

[Idobelieve in reply to Thatflowerlady]

His choice to lower my dosage due toy blood count dropping to a dangerous lever. My choice after this last attempt with the 75 to not take it anymore. I've been doing a.plant based diet and eliminate meats, dairy and oils from my diet. I don't really think taking setting naturally is going to hurt you.

[Red71]

I’ve been on it for a year, but had to wait a week for the first two cycles so each time they lowered my dose. I’m now on 75 mg and that seems to be working. I’m usually at 1.0 for neutrophils after 5 days off so they say to continue after 7 days. I haven’t been sick once but I’m pretty careful to stay away from anyone who is sick. We shall see what happens after I spend 2 weeks on a Viking tour in October. I managed a 3 day Mexico cruise in February without getting sick, so I have high hopes...and lots of soap!

[Klamato]

I have had to post pone my Ibrance for the 3rd time since taking it for over a year. I am presently on the lowest dose and will be seeing my oncologist tomorrow to check the white cells again. She mentioned the last time that I may have to receive an injection weekly to boost the white blood cells. I will know about this tomorrow. I need to also have a PET scan this month. All in all, I am a bit anxious about all of this. What can we do but have faith and hold on! This crazy disease is a crap shoot at best! We can only hope for better and more advanced treatments, but meanwhile we need to keep a good attitude and make the best of our lives! God bless us all!❤️👍

[Idobelieve in reply to Klamato]

I'm on a plant based nutrition diet...feel great plus I take some supplements. Have you ever listened to Dr T Colen Campbell, if not, it's worth your time to listen to him.

[Thatflowerlady in reply to Klamato]

How did your appointment go ? Are you good to go for ibrance ? Are you pursuing the medication to boost your WBC ?

The anxiety is crazy especially at scan time .

Luann

[Klamato in reply to Thatflowerlady]

My appt went well and my white cells are up, thank God! I have a date on Friday this week for my PET scan! Hope and pray that the report is good! We just need to live moment to moment! For now I won’t need injections to boost the white cells! Thanks for asking and good luck to you too!❤️

[Thatflowerlady]

Thank you for inquiring Sandra , I was given the go ahead to start the ibrance , blood levels are on the lower side but on 1.9 neutrophils .

[Thatflowerlady]

Your knowledge is fantastic Sandra thank you for sharing your knowledge

[Hidden]

I have to wait 3 weeks each cycle for my neutrophils to return to a safe level. I started at 125mg and I’m now at 75mg and they still drop low

[Klamato in reply to Hidden]

Me too, two weeks usually brings them up. I am presently on 75 mg. And hoping I can keep going, since I really don’t have any bad side effects. It’s a waiting game at best! Prayers are what we have! God bless!

[Thatflowerlady]

Thank you for your reply . I was able to restart after a 2 week break and will see what this round brings , it really helps to know that others have had to take longer breaks and still find that the medication is beneficial