Neutrophils finally good

As some of you know I have struggled with Ibrance. After taking it for three weeks my neutrophils would drop as low as 0.3 and would take three weeks to get back up to 1.0. After a lot of discussions with my oncologist I convinced him to let me try taking my Ibrance one week on and one week off. It Worked!! My levels stay above 1 each time I have my bloodwork. I’m hoping that keeping the Ibrance at a steady level it will finally have a chance to do its job. Just wanted to share my good news. Always celebrate the little things.

[nstonerocks]

So glad you found the schedule that works!

[Hidden in reply to nstonerocks]

Thank you.

[Hidden]

That is such good news! Let's hope this new regimen works and keeps your neutrophils at a higher level.

Sophie

[Hidden in reply to Hidden]

Thanks Sophie. For 3 months they have been staying good.

[Hidden]

You are 100% right. It was in here that people talked about different options ❤️

[Ppppopp]

My neutrophils were nuts for a whole year. As long as they are 0.9 my doctor gives me.

[Hidden]

Wow, Sarcie, that is such a great solution you've found! I just love the idea of customizing the treatments for our individual situations...thinking "outside the box"!

Thanks for sharing!

Lynn

[Hidden in reply to Hidden]

You are welcome. If it can help another person then that is wonderful. My oncologist said the drug company wouldn’t be happy but if it works then who cares lol.

[Barbteeth]

Seems you have a good plan...hope it continues

Sometimes you have to be pushy and do what’s right for you

Pleased you’re feeling better

Barb xx

[Arisgram in reply to Barbteeth]

Hey Barb. How is your new treatment going?

[Barbteeth in reply to Arisgram]

Well fingers crossed I’ve not noticed anything horrible...had a few dizzy spells but nothing major......into my fourth week and just waiting for something to happen ( pessimist in me)... night sweats are more frequent but I had acupuncture for those about a year ago and it worked so will go back for a few sessions

Sometimes I think I’m imagining these new symptoms because I’m expecting them...if you see what I mean!

Other ladies on Afinitor have complained about mouth sores but so far not had any

Thank you for asking

Barb xx

[Arisgram in reply to Barbteeth]

I'm glad you're faring well. I understand the pessimism. It's kind of difficult to not be! Take care, and we're all pulling for you.

[Arisgram]

Yay!! That is great news! I have learned that every fourth cycle or so, I drop from 125 to 100 and get my neutrophils back up in the seven or eight range. So happy for you that you have found a working solution!

[Hidden in reply to Arisgram]

Do you then go back to the 125? I am taking the 75.

[Arisgram in reply to Hidden]

Yes. It usually takes one cycle then I go back up.

[Hidden in reply to Arisgram]

Once my oncologist lowered my dose he never tried to raise it.

[Arisgram in reply to Hidden]

I guess I haven't really thought about it until now. It was a strange situation. I had just received my first scan and it was all clear. However, my ANC was 300. I think my oncologist was so excited about the good result, he paid little attention to my count. Luckily, my boyfriend is a critical care doc, and he caught it. I emailed my oncologist and heard nothing. Unfrtunately, he had a major stroke that afternoon.

I was only two doses short of the end of the cycle, so I took them both. While the clinic decided to whom they would reassign me, I decided not to start back until my count was over 1. I run a healthcare clinic so I could monitor my own count. Finally a nurse called me, and I told her I wanted to drop down to 100. She called in the script after a very brief conversation with one of the other docs.

Because I had already filled the prescription for 125s, I ended up with an extra bottle. I took the new 100 for one cycle and my ANC at completion was 750. At my first appointment with the new onc, we decided to put me back at 125, but the prescription had already been filled at 100, so I had an extra bottle of that as well.

In December, I had a round of stereotactic radiation. My fatigue and pain level were off the chart. I contacted my doctor's assistant via email to ask if dropping back to 100 was a good idea. As usual, she didn't bother to respond, so I started the 100.

At my most recent appointment , my ANC was 8.7 and the doctor suggested I go back up to 125 which I will start Thursday.

Thinking about it now, I realize, I did this myself! I don't know if a physician would have ever suggested this dosing!

Sorry for the long post.

[Hidden in reply to Arisgram]

Hey, sometimes we have to be our own doctor, especially in your situation. You are still taking your Ibrance and if it works for you then that’s a good thing! Once you get a new oncologist hopefully they will figure things out. My doc said he knew the company that makes Ibrance would not agree to my dosage because if it doesn’t work for me it would be a bad “stat” for them. My thoughts are if it can help prolong my life then I’ll take it however he suggests. You can write as long of a post as you like 😉

[Ppppopp]

So good! Mine were all over the place when I started a year ago. Now they are fine. Xx

[AuntyJane]

I also have same challenge -after 14 days of Ibrance my ANC drops to 600 range and I have to stop. Then it takes me almost 3 weeks off to get over 1000 so I can start again. Just completed 5 cycles. Do you do a weekly blood test to monitor ANC level? How often do you have a CT or PET scan?

[Hidden in reply to AuntyJane]

I used to have my blood work after the three weeks on. When I started this dosage we went every three weeks and I saw my doctor every 6 weeks. I have a ct every three months. My only PET scan was the one in the beginning.

[AuntyJane in reply to Hidden]

Good luck to you and hope this continues to work. I might try 10 days on/10days off.

[hopenowandtomorrow]

Fantastic!!! That is great news!

❤️🙏❤️