The party’s over…
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Dear exbrnxgrl
You have been a leading voice of strength, support and reason on these boards for a long time and I am one of many grateful readers here who are sorry that the other shoe has dropped for you. It dropped for me in May, 2022 and I am on my 32nd round of Faslodex and Kisqali, my first line treatment. Oral SERDS that can replace Faslodex have been approved, but only as a monotherapy, so can't be combined with Ibrance, Kisqali, etc. at this time. My MO believes that they will be approved for combination within the next year or so, and my butt and I are certainly looking forward to that.
There's a thread of Faslodex tips that I'm sure you're checking, but wanted to add three things that are pretty recent. Faslodex is no longer refrigerated, so you don't need to warm it from an ice-cold state. I still request that the nurse hand me the glass tubes ahead of time and I put one in each armpit for at least 10 minutes. A few months ago, the nurse who was injecting me recommended the application of ice packs to the areas immediately after injection. They make them for me in small bags (you want real ice, not those things you shake to activate) and give me a disposable waterproof pad for the car. I use them for my drive home and they really help. A few months ago I had a minor, transitory reaction (odd, after 2+ years of injections) and my MO recommended that I take Pepcid AC in addition to the Claritin that is widely recommended. I take both the day before and morning of the injections, and have not had another reaction.
I hope you take some comfort in the fact that you are "bone only" (me too). From the studies I've been able to find it seems to have a better prognosis. I seem to recall from one of your comments that you are in your 60s. I am in my 70s and consider that a silver lining in these very dark clouds. My MO asked what my treatment goal was and I said "to live long enough so something other than cancer kills me." I hope you get there too.
Healing thoughts and virtual hugs,
Eleanora
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Dear exbrnxgrl, I decided to log on after a long time away. I always appreciate what you have to say. I'm sorry to hear your news. Thinking of you, and looking forward to reading more from you soon.
Edit to add: my Onc decided 4 years of cdk 4/6 inhibitors is enough for now, so I stopped Verzenio (YAY! I feel so much better!!!) and am only doing letrozole, which I know was your treatment for a long time. I guess its all a back and forth balancing act.
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Rooting for you Exbrnxgrl!
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Thank you again to all who have been so kind. I know you understand 💗
Got a text that my Ibrance is in. I’ll be picking it up tomorrow morning. Although Medicare covered it, it’s crazy to think that I’ll be driving around with a pill bottle worth $10,000. in my car. I knew some drugs were very expensive but I think I was quite naive about exactly how expensive, which is why I’m still shocked about it. I worked today and will work a half day tomorrow. First grade again 😊. I’m not accepting any jobs next week as I want to see how I feel. Faslodex injection is on Monday and I’ll start the Ibrance on Saturday.
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thinking of you and sending hugs your way. Hoping your side effects from the meds are minimal.
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You have a great oncology team that's so important.
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Thank you 😊
Started Ibrance three days ago and had my first Faslodex injections today. So far, nothing unusual though I hated the shots. Not really painful but they creep me out and make me feel anxious 😩. This is not my first experience with intramuscular injections in the butt. When I was a Peace Corps volunteer, we got gamma globulin (hepatitis prevention) shots that same way every three months. I think I have PTSD …
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Yea for nothing unusual!
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I am sure you will soon see how miraculously it works and will forget the pain.
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I scanned your posts again and see you didn't mention that you had a biopsy. I thought they always tried to do that first. Was anything said about it?
Also I'm wondering how long between scans that found the back mets. My dr finally said I'm in remission and a year is enough. This after 8 years with no progression. I was comfortable with that before but things change. My heads reeling too.
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Some spots are not easy to biopsy and when your ribs and spine light up like a Christmas tree, mets are a forgone conclusion.
I have been getting annual scans for many years.
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Yes, mets, no question. But did the cancer mutate or is it the same with no change. I hope for you it's the same.
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Well, since we are not going to have any of the mets biopsied, we’ll never know! I am completely ok with that as I see no reason for additional procedures. My medical group has been with me for over 13 years, almost all NEAD and I have complete trust in their medical recommendations.
Unfortunately, I am now having problems with my right kidney/ureter (not the left where my kidney stone was). I will be having a stent inserted sometime next week. I hate it all so much and really don’t know how much more tx and procedures I want to endure. I become more anxious and upset with each visit or anything medical. I never get used to it.5 -
Thinking of you, Caryn. 💓
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@exbrnxgrl Geez, that sucks so much. I think we all know what you mean about the never-ending medical procedures and tests. Bleh. Oh well, at least there is spring.
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Caryn, just checking in, how are you faring this week?
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Dear ruth and everyone else,
I had an outpatient procedure today to place a stent in my right ureter. Fluid in my abdomen was impinging upon it and causing pain (went to the ER last week). I am home and in some discomfort but I am also queasy. My stomach, formerly iron clad, has become ultra sensitive and almost all meds make me queasy. Sipping ginger powder mixed w/water, ginger candy etc. I actually threw up after I took Zofran earlier! Younger dd took me to hospital and older dd arrived a bit later. She will be spending the night and most of tomorrow with me.
I will be starting rads to a painful met, almost at my tailbone, shortly. The fun never ends! Thank you all so much for your support and caring.
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Glad DDs are able to help out. Hope the stent & radiation both do their jobs so you can feel more comfortable. Would mashed potatoes help coat your stomach? 💓
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Thanks, ruth. The dd who is staying with me lives in Napa but comes to Sunnyvale/Cupertino a few times a week. She works for Apple. She’s not planning on going to the office but they know she's in the area if needed. The surgery itself was done under conscious sedation. There was no incision as it was done through the urethra. I have no memory of any of it, G-d bless Versed!
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Imagine when people had to undergo surgery while literally bitting on a bullet! 😵💫
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Ruth,
That reeks of the Civil War in my mind! I see Scarlett at the train depot in Atlanta. A sea of injured and dying soldiers surround her. The doctor is performing amputations with nothing more than something to bite down on and maybe a bit of whiskey if they were really lucky.
There are two things I need to get off my chest (no, not my implants ). Many years ago on bco there were a few members who felt I was happy and having too easy a time at stage IV. Two of them even sent me nasty pm’s saying how they would celebrate when I progressed. Well ladies, have at it!
There is also a member, the husband of a stage IV patient, though she is not a member herself. He was fairly insistent that I was cured. Although optimism is good, reality trumps it. I don’t think he understood how hurtful that was to say to someone with a disease that has no known cure. Personally, the truth is more valuable to me than unicorns and rainbows and thinking over the top optimistic thoughts doesn’t change reality. Bottom line dude? I am not now nor was I ever cured.
I apologize as I am not one to air personal grievances but these two things have bothered me for years.
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@exbrnxgrl A friend who is a therapist told me that people would project a lot of their own fears and hopes onto me when they knew I had cancer. I think this is quite true, and now whenever anyone says anything about my condition, I assume it is more them than me, and stay true to myself. You have shared so much of yourself here, and it's too bad that there were some truly ugly moments from those who were projecting their own anger and pain onto you.
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tougholdcrow,
You are a gem!
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Having cancer, or loving someone who does, does not preclude a person from being a jerk!
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@exbrnxgrl I’ve been off the boards for a couple of years, but I remember reading your posts and very wise responses to others. My heart sank reading of your progression. I’ve been on Ibrance/Femara for 8 years now with only minimal side effects… fatigue and a little hair thinning. They have done well for me.
I, too, was in sticker shock when I saw the price. United Healthcare is paying over $16,000 for my Rx. I think about it every night when I push the pill out of the bubble packaging, that I’m about to swallow a pill that cost $762. It’s insane to me- but I realized that I’m worth it, you and all of us are worth it too. Just like you, Ibrance was still in clinical trials when I was originally diagnosed, but it has been a wonder drug for me the last 8 years. I’m grateful for every single day. I know the day will come that I too will have progression.. I also know that I can come here for understanding, advice, and encouragement from my fellow MBCers.
My heart is with you @exbrnxgrl as you adjust to this new normal. I hope Ibrance is kind, easily tolerated, and gives you many, many more years to enjoy.3 -
Thank you all for your kindness and support.
Had my second loading dose of Faslodex yesterday. It doesn’t hurt it just feels weird and creepy. Had my rads simulation today. It will be targeting my sacrum and will hopefully relieve the discomfort. First actual session is Thursday.I forgot how much I dislike being a patient. It kind of changes my identity and it makes me sad. I will have to stop Ibrance during radiation as I did when I had the stent surgery. I haven’t even finished my first cycle 🤷🏻♀️
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@exbrnxgrl We're with you all the way. Hopefully once this initial phase is over, you'll get back to feeling like a patient only once a month or so.
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Thinking of you, Caryn. Thanks for the update. 💓
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Exbrnxgrl- Yes, weird and creepy - that's part of it with those shots for sure. If that's all you get, good for you. I want to underscore what Tougholdcrow said, about after awhile, you can probably just be a patient once a month. That's not too bad, but yes, having to go back to all that several times a week, several times a month stuff would be really hard. We are thinking of you - good luck with the radiation.
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Hi Caryn, just thinking of you. 💓
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