Ibrance issues

[Crazydentist]

Hi ladies

Having bloods taken tomorrow to check wbc..had to stop Ibrance again!! As were too low..I do hope I can restart.. my oncologist doesn’t seem to want to reduce to 75 mg but surely that’s better than stop start all the time?.. just want to get into a routine

Barb xx

[Mimiholl]

I hope u get on track soon! I'm curious how low is low ? Mine is lower than normal range, but I'm still on 125. Thanks , Mimi

[Crazydentist in reply to Mimiholl]

Hi

My oncologist seems to think as long as my neutrophils are 1 or above I can stay on 100 mg

Barb xx

[Clair19 in reply to Crazydentist]

I was on 100mg for 3 weeks and Neutrophils dropped to 500. Then took it over 6 weeks to get into normal range. He said there are so many new drugs that are coming out. He must know something because he’s giving me a break for a bit. In September I’m going on something new. I will let you know. I hope your levels come up quick. I will say an extra prayer for you.

[Crazydentist in reply to Clair19]

Hi Clair

My neutrophils fine do back on Ibrance 100 however I’m very anaemic so taking iron, folic acid and B12.. may need a transfusion

Annoying

Barb xx

[Clair19 in reply to Crazydentist]

I’m glad you can continue, I hope you don’t need a blood transfusion. I have been lucky as my blood work is very good except when I was on Ibrance. I took 6 months of Doxil and my CBC stayed good. I think that’s why he felt my body was not reacting well to targeted therapy. I take Faslodex and I’m doing better. Good luck to you! I’m Her2 Negative so hopefully it will stay stable until I get on my new medicine.

[Crazydentist in reply to Clair19]

Hi Clair

It’s good you’re doing well on your new regime.. Ibrance is a challenge I must admit and I’m a bit fed up of the endless blood tests etc but at least I’m being monitored and looked after

Barb xx

[Clair19 in reply to Crazydentist]

Tell me about it. I’m at the oncologist now and no reason to take blood I’m only on Faslodex. I’m like you I know it’s for us but my goodness I think every three weeks instead of 2 weeks. My veins are holding up so far, but I see these older women and it takes forever to get blood. I hope you do well on your Inrance, I think this is a cruel joke sometimes. But my friend with Bracca is hanging in and working full time. And my friend with her 16 year old. So we can do it, I had 17 years free, so I feel blessed with that.

[JulSoul]

I started at 125, only lasted two weeks. Went to 100 with no problems, over one year. Then 75. Now I have to take it every other day to keep my count up. In a few weeks I will have my first scan with the every other day treatment plan. Sure hope it’s still working.

[Crazydentist in reply to JulSoul]

Hi

Oh I do hope that dose works..I’ve read that lower doses work just as well as the higher ones which asks the question why don’t we all just take lower dose and feel healthy and not too tired..I don’t get it!!

Barb xx

[mariootsi in reply to Crazydentist]

I don't get it either!

[Clair19 in reply to JulSoul]

I’m glad you got the chance for 75. I went from 100 to you can’t take it after 3 weeks. So im on Faslodex praying it works for now until he decides to try something else.

[SeattleMom]

Hi, Barb! Love that photo!! Where was it taken?

I am a bit surprised that onc didn't just reduce dosage, but maybe you are borderline? He may want to keep you at 100 with just a bit of a break before starting up again? That's just my guess.

Wonderful to see you on that beautiful horse!! Linda XO

[Crazydentist in reply to SeattleMom]

Hi Linda

Photo in Bestwood country park..that’s the lodge gates I’m riding through. King Charles 11 kept his mistress Nell Gwynn there!!.. very old woodland to ride in!! I’m lucky

Have restarted Ibrance 100 mg as neutrophils ok but now very anaemic..fed up but can have transfusions if needed..at least back on the drug

Barb xx

[Jaxon2007]

Same happened to me. When was your last scan? I didn't get scanned during this on and off again, lowering dose etc. until I finally got a scan and find out it wasn't even working. Keep us posted...

[Crazydentist in reply to Jaxon2007]

Hi

Had a ct scan a few weeks ago..I haven’t really been on Ibrance long enough for it to show a result..however letrazole appears to be working..some bone sclerosis and a drop in tumour markers

Barb xx

[Crazydentist]

So 75 does work..I guess it’s such a relatively new drug they’re still tweaking the dosage..annoying though

Barb xx

[Clair19]

I’m like why can’t they put you on lower dose? This is just me but it seems most can’t tolerate the higher doses. If they continue to drop the dose the drug companies will be like oh No! It’s to strong and women are not able to take it at 125mg. That’s just me now....The drug companies with this drug makes most of its money. I’m praying that the drug companies don’t feel like that. However my oncologist would not even try me on 75mg.... I don’t know anyone who’s on 75mgs?

[Crazydentist in reply to Clair19]

Hi Clair

I live in England and pick up my Ibrance from pharmacy..I don’t have NHS treatment as have private insurance

Anyway to get to the point!!.. when I’ve picked up the 125 mg and the 100 mg the price is on the pack.. both cost £3800 per cycle..don’t know cost of the 75 mg but maybe it’s the same..interesting though

Barb xx

[MacroMom in reply to Crazydentist]

Wow. I was just reading older Ibrance posts and noticed your cost. I I were to buy it here in the U.S. it would cost TRIPLE that. What a racket!

[Clair19]

I’m glad you’re on 75mg. Most seem to pull off at 100mg. Good luck with your wbc....

[Hidden]

I was on 125 and had to wait 3 weeks each time before I could restart. I was dropped to 100 but got a bladder infection and ended up waiting 3 weeks again. Hoping this time round my neutrophils will stay up and I can finally get on schedule. My ct scan did show some improvement in my bone Mets so it is working even though I’ve never taken on schedule. Good luck.