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What about Ibrance???

equavel profile image
28 Replies

What about Ibrance???

Hola

Saw a new Dr today who did not renew my Ibrance due to low neutrophils and platelets

Moreover he suggested that they would know more about Ibrance in another year ... the longer it takes the more suspicious it becomes , says he

He suspects that letrozole alone would likely be as efficient

I must say that it leaves me feeling like a guinea pig... though I look forward to 3 more weeks off Ibrance

Has anyone else had this kind of response

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equavel profile image
equavel
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28 Replies
nstonerocks profile image
nstonerocks

No. I have been on Ibrance for 3 years. I had some progression though no new lesions s last scan. My doctor suspects letrozole is not working well and is switching me to faslodex I’ve heard of doctors stopping Ibrance and restarting it when neutrophils go up. Sometimes the dose is lowered. It doesn’t work for everyone but has for a lot of us. You could always get a second opinion. I think we are all guinea pigs to some extent on this rollercoaster ride. Good luck.

equavel profile image
equavel in reply to nstonerocks

Thanks for taking the time to reply

What I am concerned about is that they will come out in a year or so talking about the incidence of leukemia linked tu Ibrance

nstonerocks profile image
nstonerocks in reply to equavel

That’s a concern. Unfortunately there is no guarantee either way. There is no perfect treatment here. When I listen to the ads for psoriasis meds, some of the side effects are scarey. So maybe your doctor is being very cautious. But as it has worked well for so many you might consider another opinion and then decide. No easy decisions here but I pray that you will find a treatment that works well for you. 🙏

Clair19 profile image
Clair19 in reply to equavel

Yes my Oncologist told me about possibly of leukemia with Ibrance, but I never mentioned it here, I feel we have enough to worry about. They mention it in the commercial but say blood disease, like we can’t look it up.... Again I think the possibility of getting leukemia is small.

Epinto profile image
Epinto in reply to Clair19

Hope so! I discussed it with my doctor but the response was the benefits outweigh the risks! Who knows? We r at their mercy!

Crazydentist profile image
Crazydentist

Hi

That’s the problem with Ibrance being a relatively new drug

However there are ladies out there who have been taking it for 2-3 years and done amazingly well..I’m trying it because of that..if it extends my life I’ll risk it as I don’t fancy the alternative

Barb x

equavel profile image
equavel in reply to Crazydentist

My concern is that the alternative might be the alternative we are all trying to avoid

Maybe the choice between dying of bone Mets or leukemia!

I am not a pessimist by nature but do like being securely implanted in reality

nstonerocks profile image
nstonerocks in reply to equavel

You could look at it this way: you have Stage 4 breast cancer. Ibrance works well for so many. There are risks. You may or may not suffer from a serious side affect. I think you need to talk this one out with your doctor and maybe a second doctor to help you go forward. Recently we heard of the first person with Stage 4 breast cancer to be cancer free 3 years after going thru a trial where she was infused with her own lymphocytes. She was weeks away from dying. One woman in the trial died of infection. It did not work for the others. It’s all about informed risk taking imho. It takes a lot of mental stamina to go thru this.

Boogitymom profile image
Boogitymom in reply to nstonerocks

I have to agree, it takes a lot of fortitude to make your way thru all options available. I’ve had 2 1/2 yrs of success with Ibrance and letrozole with very few side effects. I’ve also read about the leukemia risks but I also know that everybody’s response to treatment is different. I’d definitely get a second opinion

Clair19 profile image
Clair19 in reply to nstonerocks

I agree, very well said! Dang if we don’t sound better then some Doctors.😁

2muchsqueeze profile image
2muchsqueeze in reply to nstonerocks

The immunotherapy was mixed with keytruda treatment also with J. Perkins. Ibrance was tested in over 70 countries and an average about 2 patients per country after sitting on a shelf for 10 years. I cannot figure out the logistics of keeping up with all of that for palbociclib.

2muchsqueeze profile image
2muchsqueeze in reply to Crazydentist

The immunotherapy was mixed with keytruda treatment also with J. Perkins. Ibrance was tested in over 70 countries and an average about 2 patients per country after sitting on a shelf for 10 years. I cannot figure out the logistics of keeping up with all of that for palbociclib. I would like to know how that was accomplished.

Epinto profile image
Epinto

I have been on ibrance and faslodex for two years and three months now with not too many sides effects. Yes my wbc are lower than normal but so far I have not have my dose lowered. I know there r risks to any medication even a Tylenol!!! But what r we supposed to do? I say, prolong my life as long as I can have quality to it

equavel profile image
equavel in reply to Epinto

Totally agree about the quality part

NPmary profile image
NPmary

I have been on Ibrance and letrazole since 10/2/17 I have had improvement and No progression even though I've had neutropenic (low neutrophils, low ANC) every month eccept one. I started on 125 mg the next month I went to 100mg now this month I will start 75mg. I wonder how low your coynts are that your doctor would say that. I would switch docs or get a 2cd opinion as soon as possible even though it was just approve in 2015 I know it saved my life already and countless others the research is pretty clear that Ibrance and the hormone blocker works well together - better than either one alone. It is a terminal illness so eventually it stops working and that's when you should make another decision.

Good luck and Blessings for your journey ♥️

equavel profile image
equavel in reply to NPmary

Thanks for your reply

Interestingly it was not my usual doctor

My platelets were close to the level of thinking about a transfusion and my neutrophils were dangerously low

I agree with your assessment

I think I was taken off guard by this loquacious man

I will re discuss in 3 weeks with my regular physician

Gracias

blms profile image
blms in reply to equavel

leukemia becomes a real concern after your bone marrow is suppressed for an extended period of time. This is not something any of us wants to deal with as once we kill off our cell production in our newly formed cells developed in the bone marrow, we are screwed. So, as long as our bone marrow bounces back into production, neutrophils for white cells, then we know they are still ok. 7 years of suppression is about the time for scientists to assess this, which is about we are now with Ibrance. My doctor has patients right now going through that year on the drug and so far doing well.

equavel profile image
equavel in reply to blms

Thank you for that info

Much appreciated

blms profile image
blms in reply to equavel

just curious, what were your most recent neutrophils and platelets?

equavel profile image
equavel in reply to blms

Platelets 100,00

Neutrophils 8,000

blms profile image
blms in reply to equavel

maybe you mean 800 neutrophils?

blms profile image
blms in reply to blms

not great at 800 but not earth shattering either. Mine have gotten to 800 and off Ibrance for three days and bounced back up to 1700. So, although I would love to see closer to 3,000, 1700 is respectable to still be n Ibrance. I have waited a bit longer to give my bone marrow a better chance of rebuilding.

blms profile image
blms

When your count is closer to 500 you need to be concerned. At 800, no way I would continue until I bounced back up

equavel profile image
equavel in reply to blms

They gave taken me off for 3 weeks!

Once again thanks fir your reply

blms profile image
blms

Are you on 125 mg? If so gladly take three weeks off and see if they’ll put you on one hundred milligrams. Very few women can’t tolerate 125 mg but most of us Tolerate the hundred milligram pills quite well

blms profile image
blms

I know I couldn’t handle 125 mg and was off for at least three weeks before I could start again. And with that I was reduced to 100 mg and had very few issues.

equavel profile image
equavel

I am on 100

The neutrophils went too low on the 125

blms profile image
blms

I have also heard from several ladies that their numbers even out after being on the drug for several months. So, I guess it is just so individual on responses.

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