Well, damn.

Tina2

Thus endeth my lucky streak. After many years showing no evidence of active disease, my lung mets woke up and are growing. While recent monitoring CTs indicated little, my first PET-CT in five years two weeks ago showed them enlarging and active.

My MO has put me back on Faslodex, which worked well for me since 2011. Since I've been on treatment hiatus for more than a year, I'll have to do the loading dose do-si-do again. I'm also now into my fifth day on Ibrance, taking samples the doctor gave me until I get set up with the specialty pharmacy. I can't yet determine what it's going to cost and am more than a bit concerned.

Now I must bid a temporary farewell to the NED thread, join the Ibrance folks and renew my membership in the Fanny Pack. And thank all of you for your continued support!

Tina

BevJen

Tina,

Oh, I am so sorry! Like you, I had a long run with no mets showing (2006-2019). But I'm on faslodex and Ibrance, and it's not so bad. I have found that I need to pace myself more to avoid the fatigue, but otherwise okay.

I'll see you in the Ibrance thread!

pajim

Awwww Tina. Blah. Just Blah. I was hoping you'd kicked these dudes to the curb.

It's really hard to know what to say. Behind your cheerful demeanor I'm guessing you're banging your fists against the wall. I would be.

Here's to hoping that Faslodex continues it's magic. Bottom's up!

Tina2

Pam,

How perceptive of you, old friend! Yes, I'm bummed. However, I'm only too aware of how fortunate I've been compared to many.

What I'm really angry about is the lousy deal our government made that prevents it from negotiating the price of drugs for Medicare patients. At the moment I'm sitting here stunned at what the specialty pharmacy rep just declared is my my first co-pay for Ibrance. I will remain calm, look up the annual costs in my insurance's formulary, and check into whether I might qualify for assistance of some kind.

Tina

Simone80

Tina,

Sorry to hear this, I was really hoping you were done with treatments. Not sure if you're in the US but you might want to reach out to Jaycee on the ibrance thread. She has so much info on programs that will help with the cost of Ibrance.

50sgirl

Tina, I am so sorry to hear this. Like others I had hoped you you remain free forever. The cost of Ibrance can be daunting, but my MO’s office and specialty pharmacy found me funding for the entire copay. Medicare’s coverage was embarrassing small, so it was nice to pay $0. I know your head must be spinning, but you will get things under control.

Hugs and prayers from , Lynne

DivineMrsM

Tina, no one likes the news of progression and I'm sorry to hear about yours. You had almost a year and a half of no treatment which seems to me like a nice break for your body. I know you were grateful for the break. I hope the Faslodex/ Ibrance combo takes you right back to stable.

Btw, it's an abomination what Medicare does not pay for the Ibrance, that we do not have a cap on prescription costs. Pfiser has copay help according to income so hopefully you can qualify for that. I had to pay several hefty copay chunks and the damn stuff didn't even work which was like adding insult to injury. I never used to like the phrase “battling cancer" or “fighting for our lives" but on some levels, the further I go along with this, I feel I can relate to those sentiments at times. We battle the health insurances coverages and costs, government neglect and oversight, the lack of understanding from well-intended loved ones, the sometimes incompetence of the medical professionals, all while fighting to get the best medical care we can. We have to be our own advocate while our health is compromised. It is a struggle at times.

Iwrite

Tina- Hoping the Ibrance works well for you. Here is one place that pays for the drug...

https://www.cancercare.org/copayfoundation If they are already maxed out, Pfizer is often willing to cover the cost. They paid for mine for three years with no out of pocket.

I did pay enough to hit the medicare catastrophic category in one week...but have had it covered since then.

Be prepared to write them a letter with your financial situation outlined.

Bestbird

Very sorry to hear that you'll be going back on treatment. Perhaps you might consider trying Faslodex alone? It worked before, and it may work well again since you've been off treatment for quite a while. Unless the disease is aggressive or threateningly symptomatic, you might consider "less is more." You can always add Ibrance afterwards if need be.

One other thing: from the literature I've read, Ibrance appears to be particularly helpful against bone mets whereas Kisqali is reputed to be especially helpful with regard to visceral disease.

Again, I'm sorry to hear you're dealing with this, and wish you a quick and excellent response to whatever you decide!

ByHisGraceTwice

Tina2 — we’ve not met before, but when I saw “well, damn” I knew you needed a hug. Here’s twenty-seven for you

jobur

Ah crap Tina! I would love to use stronger language, but will hold myself back. I'm SO sorry to hear you have had progression after all this time. I'm sure you, I, and everyone else who is aware of your particulars was hoping you would be the weirdo (meant in the nicest way) who would beat this disease. I loved hearing you were off tx and still going strong. I hope you never second guess your decision. As the wise and Divine Mrs. M says, it is nice that you and your body got a break. I hope that break will help as you rejoin us oldsters in the fanny pack. (I'm on my 2nd time around, this time with Piqray.)

I was able to get all of my Ibrance paid for too, sometimes by Pfizer and sometimes by foundations. I'm sorry, I don't know what the income cutoff is for getting assistance, but from my own experience I'm guessing it is something over 50K per year. My specialty pharmacy was great in finding and applying for assistance for me, I did not have to do much other than sign some forms and send in my tax return from the previous year. Hope your spec pharm is equally accommodating.

Bestbird's advice is always worth listening to. Maybe Fas alone would be enough for starters. I heartily recommend at least trying the ventrogluteal injection site. I've found the shots to be less painful and have yet to experience any lumps or bruising after injection. (Knock wood.) I switched when my #1 nurse started finding it nearly impossible to push the shots into my ever increasing scar tissue at the dorsogluteal site. The caveat is that you must have a nurse who is familiar with injections at this location and who knows how to find "the spot".

Onward and forward dear Tina! This truly sucks, but you know you can do this. Sending a big hug.

Jo

ShetlandPony

Well, damn indeed. I can imagine you screaming inside your head but smiling on the outside. I am not happy to rejoin the fanny pack, either. In the past I had Fas with afinitor for four months. This time it is part of the trial I joined. I hope we can both give good reports at our next scan!

Trial: Herceptin, Neratinib, Faslodex for ER+ Her2 mutated mbc

Zillsnot4me

Crap on a chapstick as my friend would say. Hope you’ve been nice to yourself. It takes a few days to wrap your head around it. Stinks!!

I had different foundations cover my co-pays and my hospital had some program where I paid $10. Trust your specialty pharmacy. They are awesome. Those o-pays from Medicare will make you run screaming in the night.

Good luck. We are all here for you.