Thoughts on Ibrance & when it stops eii P.O. eking!!

[Bailey3266]

Hi! Im very wordy; but I hope this helps you.

I’m on Ibrance exactly 2 years & although in back of my mind “I always am waiting for ball to drop”; however, try to relax; cannot believe that’s all the Onc said to you & now you have to “wait” out your new game plan.

I’m told there are “numerous meds” that’ll work for many many many years! Of course, individually, some are actually on Ibrance 8+ years (per my ONC from UCLA who was in on the original discovery before and after trials began he knows a woman 8+ years on this regime, though the average is 22 mos. as of 2017 when I started this Med regime & some cannot tolerate it from get-go!

In the ~10 years, 6 surgeries & lotsa pain & cancer meds since onset of stage 1 & this “battle” (is what I prefer to call it vs journey), I’ve noticed 2 things:

Though We are unfortunate to having been given this diagnosis it is also a fortunate Opportunity to view how we live our lives keeping in balance with how we choose to die.

Two things I find most important to me:

1. Though stage 4 breast cancer is no longer a death sentence as it once was likened to pancreatic cancer; to me it still is a death sentence but it allows one to “live” while dying (if that makes sense. You typically, no longer hear you have stage 4 breast cancer with X number of months; this it has been dubbed a “chronic condition”; but I still daily & mostly in the quiet of the nite whilst I cannot sleep I know it is a “terminal” diagnosis. I know that this happens to us so that we are fortunate to “know” so when time comes family will say “thank god (ie whoever spiritually they believe) she/he are not “suffering” anymore! It gives them some comfort knowing at least that...I believe also God’ll never gives you more than you to handle (though not all can handle what God gives them—so only some truth to the former) or whatever religious figure you have.

I always know that somewhere in the world (probably rite next door to me) there are soooo many less-fortunate person(s) & that helps me avoid the “pity party” & meltdowns which sometimes hits me out if the blue when I’m in the happiest of places it creeps outside of me “sideways” & I’m hysterical crying at nothing. I hate cancer drug commercials & movies with the mother dying of cancer etc & numerous other triggers. Though I love, respect & trust my Onc wholeheartedly, I dread the day you are now facing=CHANGE. Change is typically resisted (ie new boss, new job, new rules to follow etc; but over time I’ve learned to embrace change and accept it and see what it has to offer? Has your INC tested any tissue samples. In US we have too-tier Cancer centers I believe they are NCI (national Zcancer Instiute) affiliated though I’m having a mind-cramp & cannot be sure I’m saying that correctly. But they can:

1. Test your tissue & put info in a bank to see what new or trial meds you may qualify for. Good & bad=kinda a crap-shoot; not sure rite now if I’d do a trial; I’d have to weigh our odds or soul search & say we’ll if it benefits me=great & if it does not==>then it may benefit others with families and youth.being taken away & maybe just maybe it’d lead to a cure. You see my only legacy is 25 years giving of myself as a nurse, mother as wife daughter friend coworker to others; I don’t feel I’ve left my make here yet.

2. Tell you wat other meds will respond to your cancer and halt it for a (hopefully long while)

More of my philosophies:

Not all who get Dx of cancer (no matter the age; I’ve known 2 family members under 6 years old; one at age 40; age 55; 65 &70-80 year-olds—survive & they’re gone in blink of an eye. (I don’t know how long you’ve had cancer; but I guess I look at this battle as glass half full—I’ve lived 10 years when some are “dying” the minute they are diagnosed with or without a battle. I believe life & death (not in religious way—though I am non-practicing catholic) are random. Just as one man died sitting in his living room and whole house dropped rite into the earth via a sink hole, some are struck by lightening, or worse. I don’t think I’ll ever be ready to here the words “there’s nothing more we can do for you (not that you are there yet & I hope very far from it); yet I also do not want to “battle” or fight to survive by any and all means necessary my quality of life is most important to me & then I’d like to say goodbye and let go quickly without pain & suffering as I’ve actually my watched that and it’s torturous for the patient but often almost worse for their families to have to watch!

I’m sorry typing on my iPhone at 5 am is not helping me articulate; rather I cannot seem to make my point.so I’ll sign out now & revisit after my much needed jet-lagged and worried parent of 18 j 20 his and thus they bring huge challenges—one of which I mostly cannot sleep because I worry about them now soo much and have a be hard time dealing with not being here to worry bout them some day! Wow I havemore philosophies and ways of getting around that but they don’t work at night! I guess I’m gonna try tthe bmwje new bucket list right kieth maybe tgad help me fall asleep (of course they’re both on planes from college to Boston right now to celebrate the holidays with our families! I guess holidays tick me off too as I’m reminded all too often this could be my last and I saw a lady with a 6-week old grabs baby that I’m guessing I may jot see! These are my daily haunts (err well I not allow them intypicslly in the evening.

What I do about the mess I’m in

Emotionally=rely on each oersted who surround me with kindness and begin and revise my bucket list as I did tick off quite a few & think I’m down to 19. Here goes:

1.travel to Malaysia & Thailand with my family

2.ireland

3.viking cruise Adriatic see

(These three above=are my best things-bu

4.swim n ocean, walk on Bottom with round helmet

5.volunterr with babies in nursery at hospital

6.travel With famy

7.camp overnite w/bonfire n snores and small citrus oh at

8.spend 1:1 time making memories with: son, & Daughter & husband—quality time’

9.hit the Power Vall

10.be sprinkled at see during sunset by just my 2 chlffen & husband with sunset view, cocktails & loud music; memorial service with very nice catered food outside on beach setting great sir

Thx love—hope ur emotional ok awaiting your result-create ur best moments & courage & wisdom to face your new cycle the

Fondly

[Hidden]

Hi Bailey3266!

I admire your early bird tendencies! And I, too, tend to be wordy...so we're sisters in that, too!

I pretty much agree dwith what you wrote. It sounds like you were thinking through/laying out some of the same things I sort of cycle on. Worrying about the effect on young-adult children.It's awful that we have this disease, but many are in worse shape, so we should try to find a way to be grateful. We are just organisms, born to live and die, and there's a randomness to that, for sure. And the dying part often sucks. We should focus on doing the things that are important to us (I loved your bucket list! ). Etc.

Re: concrete matters, I also get very annoyed with the commercials but mostly because they show incredibly perky, productive women (actors) who are apparently unaffected by this disease. I also hear the word "chronic" thrown around and I sort of bristle, while also feeling hopeful. But life expectancies and quality of life ARE demonstrably better, which is great. I'm glad that you're at UCLA with one of the docs who came up with Ibrance. I had contacted them about a second opinion way back when but ended up elsewhere. As you note, 22 months is the average for Ibrance + LET as a first line, but many people do much better, myself included. Plus there are several subsequent treatments that are also effective...I'm on one, doing well. So I agree that all of that is great news and reason for hopefulness.

I also go through phases where I also get very "philosophical" about it all and I think that process helps me ultimately settle my mind, vs. bottling it up/living in denial. I'm actually feeling pretty settled now, almost constantly, because my children are really, really close to being launched. I'm incredibly grateful that I've had so much time with them.

I'm not sure I've answered any questions (?) except to say "I get it". We have virtually zero control over the physical side of this (diet/FIR/alt treatments probably actually do very little, although I am in favor, just in case! ), so the only thing we have any control over is our state(s?) of mind which translates into quality of life. Philosophizing, which in my case is me just debating/discussing inside my own head (or with a few people), meditation, reading (I read lots about death...e.g. great piece in this week's New Yorker re: "The Art of Dying"), journaling, etc. help us deal with the mental side of this.

I hope you get over the jet lag and have a great day...

Best,

Lynn

[laurac1014]

I hope you get to do all on your Bucket List !

[nstonerocks]

Very thoughtful post. I want to offer that you have already left your mark ion the world You have doubtlessly extended yourself professionally and personally. Your presence in the universe makes a positive difference. Please don’t think you haven’t left your mark on the world. There may be more things you look forward to accomplishing. But you are enough just the way you are. Love and value yourself as much as you love and value others. I work hard on this too. I don’t think it’s something that comes naturally for most of us. 💕

[Jackdennis5]

I read what you wrote this morning and it was as if you were I my head and everything you said I can identify with .All the feelings you have I do too . I know that’s no consolation but I found it helps when you know someone feels the same . Your right you have to try and keep your glass half full not half empty . My first diagnosis was 29 years ago . I had a good 29 years working , bringing my son up . I was really blessed with grandchildren. Like you I believe god gives you what you can cope which I must confess I’ve looked up and said you have it wrong this time Lord , even though I know he will give me the grace and strength to get to the end of my journey. Any way that’s the end of my rant . Have a wonderful Xmas and your in my thoughts and prayers . Xxxx