My story & place for others to share experiences!

[Bailey3266]

Hi:

Stage 1 in 2010-double mastectomy & failed to tolerate Tamoxifen (as I was going through menopause); but low oncotype score so took a chance. Diagnosed with Mets to Lymph and Lungs 11/2017. Currently on my 16th cycle Ibrance/letraziole; ct Scans every 3 mos. All have shown much improvement & now NED or I call it a remission (even tho it is still there; but unchanged in 9 mos so it helps others to understand and stop asking “how are you doing” with sympathy eyes (I know it’s well meaning; but it reminds me I have Mets and I’d rather forget while I can) I take the meds tolerate the side effects as well as any. I drink lotsa water and exercise daily (thanks to my dig). I do get severe SCANxiety but it passes once 48 hours pass & I get my results! I mention that because I’ve read others have to wait a week & I feel terrible about that; I wish it was MANDATORY that results are given in timely manner! I’ll spare you further details except I’ve had ups & downs; but all tolerable and at times I am able to force myself to forget (we’ll not really; I just don’t dwell on it & try to be as optimistic as possible). I hope sharing may be inspiring to others who are at beginning of Ibrance (similar; I think there are 3 approved now) therapy.

I do feel terrible when I hear this is not available to all; I think there ARE ways to get waivers on $$; I think that’s due to good “PR” for the drug company!

Question: I’m always waiting for shoe to drop (even though I push this recurrent thought away). Can others that are on these drugs and we’re on this combo please share how long it has worked and what next step is for us. I keep seeing many who have METS for many years; but I thought IBRANCE only extends life average 24 months; INC says she has slew of meds to “try” when it stops working. Very scary; not knowing. I have 2 teens and even though I do try to remain in denial (mainly to shove the fears away if just for an hour, day, or week) and also be optimistic I do feel “Eyore-like” (heavily pessimistic” especially when thinking ahead to the things I may miss if I’m not here 3 mos, 6 mos or year or even 5 years from now (like my children’s graduations and marriages and grand-babies, etc)!

I try to travel a lot and looking forward to small/big trips definitely gets my mind of dreadedness if this diagnosis.

I know this therapy will fail but do not know when or what will happen then. I’ve watched 3 of my immediate/extended family & friends go thru hospice for other cancers & it’s very very scary to think of—so I push it away and think of Scarlett O’Hara I’m Gone With The Wind: “I’ll think about it tomorrow”. Can others help and/or share with stories further along with similar diagnosis: METS to Lymph & Lungs?

[NPmary]

Our stories are much the same school 2010 same type couldn't tolerate hormone therapy oncotype 7 so low risk. 7/17dx mets supraclavicular mass lymph many bones pericardial effusion pulmonary perfusion and lungs. Got palliative radiation because pain was so bad and neuropathy from the tumor. Taking ibrance and letrazole some new bone mets perfusions resolved lymph and masses are smaller. So doing pretty well maybe not as well as you. Will have scans in December.

My ibrance dose is 75 mg because of neutropenic.

Ibrance extends progression free survival, might extend life by only a month or so. Average time is 3 years.

That said there are many many people lung 10 to 20 years beyond this and doing well 🙂

I hope so much for you and your family that You are one of those people ♥️

[Bailey3266 in reply to NPmary]

Thank you and I wish you well also & think you must be one of those people as well!🤪😍

[Bailey3266]

Well I don’t think I am actually in remission or NED; but I think they’ve shrunk & stopped progression. Just thought I should share my misperception. I wish onc would use layman’s terms; I think she takes for granted that I used to be a nurse (robs ago) & thinks I understand more than I do!

[mjmom in reply to Bailey3266]

That’s great!! Are you taking any other supplements?