Lovely Ladies

Can someone explain

My Ibrance is being lowered too 100mg from 125mg

I will be off ibrance extra three days

My unicogist..said it's to reset

Reset what my system?

Smiles

[Nocillo]

The extra time and lower dose are probably in an effort to make sure your neutrophil number rises enough to re-start the medicine. I was lowered to 100 mg also and I take 2 weeks off in between cycles. It’s been working fine this way also. Good luck!

[Hidden in reply to Nocillo]

Hi ...Now l understand..My Doctor is very good to talk with....sometimes l get lost in conversation with stil learning Thank You Nocillo

Smiles

[Debbigbang]

When situations such as lowering meds you need to have that conversation with your onocologyst. This person is supposed to be your partner in this journey. You need to know 100% why they are treating you with new drugs or lowering drugs. If you don't agree with what they are doing, maybe surch for another onocologyst?

Deb

[Hidden in reply to Debbigbang]

Hi ..My Doctor is very goodI did not understand

What she meant ...This site is very good at helping..

Thanks

[FloridaNYgirl in reply to Hidden]

I agree with Debbigbang. Your Dr should be explaining your treatment until you understand exactly the what and the whys for any changes. If ypu don't understand, ask again. This page is fabulous for support and suggestions, but the medical degree still belongs to your doctor. Praying you get answers and do better on lower dose.

[Hidden in reply to FloridaNYgirl]

Monday at 1pm ..Made another list.My Doctor is very nice..understanding.

Bringing a second chair to listen better for me ..still new to me.

Thanks

[FloridaNYgirl in reply to Hidden]

It's great that you are bringing someone with you. A 2nd set of ears always helps. I'm sure once you understand your doctor's reasoning for changing your meds you will get some peace of mind. Good luck on Monday! xo

[Debbigbang]

Yes the site and these ladies are amazing group, knowledge is endless. Sometimes I wanted to try things and mention to my Dr to get a 'no' as it will interfere with the drug I am on. My motto in all of this...is talk to me like I'm 4 yrs old. I'm a collector by trade not a Dr. Thank goodness she has a patience of a saint LOL

[NPmary]

Good question for your doctor.The 2 reasons for lowering the dose I am aware of are: side effects and neutropenia (low neutrophil count).

I am on 75 MG for approximately 4 years, it is just as effective as 125mg but neutropenia is less of a problem. I have taken lbrance since 10/17, MBC diagnosis 7/17.

Wish you the best. ❤

[Hidden in reply to NPmary]

Hi NPmaryI am hoping 100

Will stop the stiff back pain causing me to really be sick ..Doctor said its the ibrance 125mg the stiff back ...part being sick at times after l eat ..

Will have to talk more with her

I eat good healthy

[DDIL1 in reply to Hidden]

I have a stiff lower back as well on Ibrance 125 and Letrozole. Good to know it might be the Ibrance

[Hidden in reply to DDIL1]

Doctor said gives us stiff back Not a nice feeling

See if 100mg helps

Enjoy Your Day

[viennagirl in reply to NPmary]

Thank you for your response to Minou82. Your advice also makes me feel better because one month ago my dose was lowered to 75 mg. I asked my Oncologist if it would be as effective as my original dose of 100 mg of Ibrance and he said "yes, it would be just as effective." He said my blood neutrophils would recover faster and that dose would be easier on my body. So I just hope he is right and the fact that you are doing well is good news. Hugs Marlene

[NPmary]

I hope lowering the dose brings you relief.

[wendle3007]

I had my dose lowered to 100 because my neuts were low two months running and my onc said he'd rather lower the dose and keep the schedule to 4 weeks rather than giving me longer off between.As for your "not understanding" are you allowed to take someone with you to the appointments? My partner comes with me and this allows me to talk to the consultant while he takes notes and quite often my partner does not understand what is being said so he will ask and get more information. It ensures nothing gets missed.

[Hidden in reply to wendle3007]

Hi I am single and family lives farYes this time l am taken a friend

It's still new to me and l do not always remember. Like my head is in a cloud

Thank You

[DDIL1 in reply to Hidden]

I know someone who asks to record the visit on their phone do they can review it.

[8576]

Yes, it is usually because of neutrophils and the lower dose works just as well as the high ones. Don't worry.

Cheers, June S.

[viennagirl]

It angers me that doctors don't take the time to explain these things properly to us. It is only when we get home and start to think about the doctor's response that we realize he or she didn't answer our question.

Sometime I get the feeling that some doctors think we are stupid. I know the women who share stories on this site are far from stupid and probably smarter than most of their doctors. We really should make our doctors be more explicit. I know it is difficult because we feel that the doctors are saving our lives. I would like to get to a point where I can believe that I am saving my own life with the help of my doctor. But I often fear what the doctor will tell me and so try to not be difficult. I feel I lose out by not being more demanding from my doctor.

Yes, I don't blame you. I would also want to know what 'reset' means. I don't think there is such a thing as resetting the system. It is weird to say reset. You are not a computer! My computer system has a system restore option. Wouldn't it be good if we had one too. I would reset myself back to when I was 30 years old - lol!

i believe when they lower your dose - as they recently did with mine it is because your blood is not fully recovering during your 7 day rest period. I saw my Oncologist yesterday. He is the one monitoring my blood work, he is not my main Oncologist who oversees my entire care. But I communicate with him monthly and yesterday I actually saw him in person. He is nice enough but I do get the feeling he doesn't want to get into any deep discussions or explanations. Maybe he doesn't even have the answers.

I asked him if my lower dose - which has been recently lowered to 75 from 100 will be as effective. He is somewhat like your doctor and not able to really explain in full what the implications of lowering the dose really means. But he did say that 75 mg of Palbociclib (Ibrance) is as effective as 100 mg. He said that the dose is tailored to our own bodies and if our body blood is not recovering during the rest period then it is time to lower the dose. It sounds like the dose is being tailored to what your body can tolerate. I guess that makes sense. Of course we want the medication to kill our cancer but maybe it is just blocking the mechanism that allows our cancer to grow. I have never fully been told what the drug is really doing. It is all so mysterious to me and I think I would have to be a scientist to fully understand what is going on in my body. Although his answer made some sense it didn't totally satisfy me. Of course we want a dose strong enough to stop the growth of the cancer.

I did read somewhere that if Ibrance stops working that going off it for 7 weeks will clean out the system so that Ibrance can be reintroduced. Maybe that is sort of resetting the system? I wish I could remember where I read that. I know most women get shifted onto other drugs when the Ibrance is no longer working and maybe that isn't the best approach.

What most of us don't really know is what our body is doing when we take extra time off from the drugs. You mentioned being off for 3 days. I doubt that it will have a negative effect because they have allowed me to go over my 7 days by more than an extra week. So that is a break of around 18 days. I still seem to be doing really well and my scans show no progression.

I wish you the best. Perhaps you can contact your Oncologist's nurse and ask her what the term reset means. Sometimes the nurses are patient enough to answer questions that the doctors don't seem to have time for.

Stay happy. Hugs Marlene