The party’s over…
13 years was a good run but all good things must come to an end. Will be heading to see my mo in about an hour to review latest PET scan, which was not posted in the patient portal ☹️.
Yes, I have been having pain/soreness in my back and the CT I had during my kidney stone episode showed a healing fractured rib as well as ground glass lung opacities. Beyond that, I’ll just have to wait until my appointment. I knew this was inevitable and my feelings are all over the place but I’m trying to not speculate and wait until I have more concrete info. Don’t know if I will be back to elaborate later as I try to absorb things.
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Exbrnxgrl - So sorry about the anxiety producing symptoms - doesn't always mean what we think it might. Sending hugs, and will be in your pocket.
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Thank you and I would be inclined to take your POV if it weren’t for the fact that my mo withheld results from the patient portal and her office contacted me for an immediate appointment.
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I know what you mean, but there's always hope. Fingers crossed for at least a reasonably good appointment.
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Let us know how your appt went, when you feel up to it. Thinking of you ❤️
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sending good thoughts your way
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We are here for you ! Let us know how your appt went and what your MO recommends .
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Thinking of you, @exbrnxgrl .
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Thinking of you, too, @exbrnxgrl.
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Exbrnxgrl wishing you good luck with your results.
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@exbrnxgrl - We’re thinking of you as you head into your appointment and hoping for the best possible news!
The Mods
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Thank you all for your kindness. I’ve waited a long time for the other shoe to drop and it has been a bit of a gut punch. My spine and ribs lit up like a light show on my scan. Progression appears to be bone only. The plan is to start Faslodex and Ibrance and scan again in three months.
I worked today which helped keep me from dwelling on the situation. First graders are good for my mental health 😊. Still trying to digest what I always knew was inevitable. Guess it’s time to learn about Faslodex and Ibrance. Thanks again for your support.
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Exbrnxgrl, knowing progression might happen some day in no way, shape, or form prepares you for the shock of it actually happening. I hope your new treatment is easy on you and puts this beast back to sleep!
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@exbrnxgrl Those first graders are lucky to have you, and I hope you see many, many more.
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Exbrnxgrl - Thanks so much for letting us know what you learned. Ibrance and Faslodex can a do a person good for quite some time, so I think you will be able to see many, many more first graders in the times to come. Wishing you all the best as you start this new treatment plan!
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@exbrnxgrl Sorry to hear of your progression, none of this is ever easy! May this next treatment kick it back for many more years! Hugs.
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@exbrnxgrl - sorry to hear about your progression. Inevitable, or not, it still stinks. I hope the faslodex/ibrance are gentle and effective for you. Sending virtual hugs.
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@exbrnxgrl thinking of you.
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@exbrnxgrl - thinking of you and sending virtual hugs.
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@exbrnxgrl .
You mentioned bone only, while no two cases may be same, I want you to know that my spine had lit up like a Christmas tree 42 months back, coincidentally today was my 42nd cycle of Faslodex and Ibrance and I am doing very well, now I have no active spots. I believe these drugs work miraculously. Take care5 -
malebreastc,
Thank you for your comment. It was very encouraging and I have read similar stories about this drug combo. I think I am still a bit shocked by the progression but I had 13 progression free years. I always knew it was inevitable but 13 years made me complacent. I’m a bit scared of the Faslodex, as I have needle phobia and am very skinny with little padding in the injection area. Many, many years ago when I was a Peace Corps volunteer, we had to get gamma globulin shots (for hepatitis) every three months. It is a refrigerated thick serum given in the buttocks. That’s my point of reference on these type of injections. My first loading dose is this coming Monday.
The Ibrance is back ordered but should be here next week. I almost fainted when I googled the cost 😱, but Medicare will cover it. Still trying to work part time as it’s good for my mental health. I am a retired teacher but sub regularly in my former district.
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exbrnxgrl - progression is always a gut punch but hopefully the treatment will keep things in check. I had was dx MBC in June 2019 (original dx in 1989, age 34) and have been stable on Ibrance and anastrozole since then. I think you will find hopeful info on these boards to help you come to terms with dx. I encourage you to visit Mel’s living room (for MBC). It is a great place to vent but get lots of support. We are here for you in your journey - HUGS!
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Thanks! I have been a bco member since 2011 after my de novo stage IV dx. I participate in many threads and am fairly active here so am well aware of potential support. Not a newbie at all!
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exbrnxgrl-Sorry to hear your news. Hope that you find Ibrance/Faslodex easy to tolerate. I've been on Ibrance/Letrozole for 8 1/2 years-pretty much a piece of cake for me. Lots of fatigue and a little hair loss the first few months but then my body adjusted. Have no serious side effects-just some stiffness from the AI's. I also usually am in Stage 3 neutropenia but rarely get sick even though I am often in large groups of people. Wishing you all the best!
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Like others, I've been on Ibrance for a while now (on my 50th cycle), and my main side effects are feeling more easily fatigued, and thin hair. But today I took a good, strenuous walk (got all sweaty, which feels good), planted a new lilac bush from the local nursery, picked up two newly framed prints at the framers, and ate a scrumptious slice of veggie pizza. I'd rather not be on these meds (I'm on letrozole not faslodex, as I'd never been on an AI before), but am grateful life can still be pretty good.
And the cost, yes, sheesh. My retiree health plan is $100 copay for the Ibrance, as it's considered a "specialty" med, but that's still quite the bargain!
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sf-cakes, I was floored by the cost 😱. I’m on Kaiser’s Advantage Plan. Yes, even Kaiser has to go to a specialty pharmacy for Ibrance and I’m still waiting on a back order. Did I mention that I’ll be getting an echocardiogram before the first Faslodex? Fun morning at the Kaiser Santa Clara Medical Center 😩
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ExBronxGirl, I’m so sorry to hear this news. I never imagined that such a small spot would spread after 13 years. I can only imagine how tough this must be for you, but I’m so glad that there are more treatment options available now than there were back then. Wishing you many, many years of staying active, strong, and witty as ever.
What led you to get the scan? Do you think exemestane has been keeping things at bay all this time? Thinking of you and sending you all my support.
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Also grade 1 here, only 1bone met. So much like you. 7 yrs progression free. Only 1 with ibrance. 6 just faslodex. Due to go back on it after inteterruption for 6 mo chemo for new primary of tnbc.
Best of luck.
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@gailmary , Ibrance was still in trials when I was first dx’ed. Besides rads to the original bone met. AI’s and a few years on a bone strengthener, my body is relatively drug naive. There’s some thought that this could work in one’s favor.
Not going to pretend that I’ve calmed down because I haven’t (maybe a tiny bit). It is still overwhelming. And the cost of Ibrance? Another staggering fact. I understand the patent will expire in 2027.
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@exbrnxgrl That's really interesting about the Ibrance patent. I know that Kisqali is (or at least was) something like $15,000 a month, which is apparently one of the lower cost meds in cancer world. I do want to thank you for your strong, calm, knowledgeable presence on this board over these many years, in this moment, too, when you are facing this bad news.
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Yes, very interesting that maybe we can have some generic CDK4/6 drugs in the not too distant future. That would be a huge help.
Exbrnxgrl - Continuing to send you the best of thoughts and remain in your pocket.
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