Need advice

[Faire]

Ladies I need your advice, I’ve been off ibrance & letrozole for 5 months due to having tumors & radiation. The ibrance had lowered my blood count so low they had taken me off anyway , now doc wants me to go back on lower dose, I have tumors in my lungs & I have another mri in August to check for more brain tumors, I feel so good now but I’m sure it won’t last for ever, my question is stay feeling good now or go on the meds & more than likely feel bad again. I know its a decision I have to make but some advice would be greatly appreciated.

[Hidden]

Hi Faire...

I'm so sorry you're faced with this difficult question...

The best answer is clearly very individual, but you've asked for thoughts, so I'll share some.

But first, a question: Are you asking if you should cease treatment altogether or *switch* to something that might have fewer side effects?

I scanned your profile / posts and it seems that you were pretty recently dx'd, did Taxol, then started Ibrance + Letrozole? So you're still pretty new to this? I would think that you have *a lot* of living to do...and many future treatments to try.

*I'll mention that, back in the day, it took me *many* months to simply recover from IV chemo (including Taxol) and radiation...Is it possible that this is contributing to your fatigue and time/rest will help?

Re: the Letrozole + Ibrance, It often takes months for treatments to take hold and for us to get used to the side effects, whether that means "our bodies getting used to the drugs" (I don't know if this is an actual thing but I see it referenced here...) or us adjusting our lives/expectations to better accommodate the fatigue, etc.

I'd urge you to give the treatment another try...at the lower dose...because it really has worked so well for many of us...

Another option is to change treatment to one that feels better to you?

It sounds like extreme fatigue is the primary issue? I know Ibrance lowers various blood counts and causes fatigue but when I was on that combo, it turned out that the Letrozole caused most of my issues. You could try combining Ibrance with Anastrozole (I know women here have made that switch due to side-effects) or Faslodex (which I'm on now and it is *so much* easier on me than Letrozole was) or something else that your doc -- not some random woman online (! ) -- recommends?

If by chance you're thinking of ceasing treatment altogether, I'll note the obvious, which is that you might feel better for some period of time, but at some point you will feel much, much worse than if you had continued some sort of treatment...

Best of luck to you with your decision...I do hope you see great improvements...

Lynn

[BARBIE70 in reply to Hidden]

Lynn , what a wonderful answer and so filled with positive and helpful advice .Sending Fsire big positive vibes and love and I’m in the same place as Lynne and second everything she’s said xxxx

[Beryl71 in reply to Hidden]

That sounds like such good advice, I hope you help me when my hour of need comes! ♥️

[Andibo in reply to Hidden]

I don't think it could have been stated better than Lynn...great advice and so well said!

[Faire in reply to Hidden]

Thank you so much, your advice really helped put some perspective on my decision. It really helps knowing ladies that are going through the same thing. You seem like an awesome person

[LadyCapricorn]

I just posted about my experience with Ibrance. My new doc wanted me to try it. I had monthly fasolodex injections for 2 years with Arimidex pill, then Arimidex only for 5 yrs & felt fine.

The Ibrance lowered my white count so my doc said to stop after day 19. I've decided not to go back on Ibrance as stopping made me extremely constipated. I felt awful for 3 days until I ate a huge amount of peanuts. They unblocked me. I like using foods/natural things before resorting to meds. Cashews do the same thing if you over eat them. Same for Newtons fig bars.

[Jaxon2007]

My sister was in your same situation. She went on the lower meds and didn't have the bad side effects. My advice would be give it a try. Good luck to you!

[Faire in reply to Jaxon2007]

Thank you

[NPmary]

If it were me l would ask the doc for an honest assessment of my prognosis on and off meds. I would be especially concerned about brain mets and ask about what l can expect, about quality of life. I would consider my feelings about side effects of the meds. Then l would consider whatever else is important to me - this is likely different for you and for me it might be considering my age, children, friends, life goals, significant other . . .

Wish you the best outcome for You.

Cancer sucks, sorry you have this situation.

❤🌺❤

[Faire in reply to NPmary]

Thank you