Ibrance (Palbociclib)
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Oh, absolutely, I would do that too! And consider adding in Celecoxib and Vitamin B3 as boosters.
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BevJen,
Lousy news. Can your MO can discuss your scan report with the person who read it and get a more definitive answer?
Fingers crossed for you!
Tina
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Hi, Tina,
Thanks for your thoughts. I think the most important thing is to get my interventional radiologist and my MO talking to each other -- they are both at the same institution, and they've never talked. I find that odd. I mean, I understand size of an institution, but really? My IR thinks my liver looks good, but for the repeat ablation that I had Dec. 11th ( to be checked by MRI on Jan 14th). My MO doesn't really understand local liver treatments, I don't think, and is freaking out about the wording in my CT scan report. She did suggest perhaps having another nuclear bone scan to see what it shows now, but I had one in late May/early June, and also had an MRI of my skeleton in August -- I don't know what else they are going to see at this point -- I have extensive diffuse sclerotic mets in my spine. All of these scans have confirmed that. And I still have some sub centimeter lesions in my liver, that have repeatedly showed up on all scans that pick them up since May 2019 -- but they are doing nothing, so we've left them alone.
To be determined....
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Bev, I wonder if doctors realize that a certain few words from them can cause your stomach to drop to your feet. Can cause you to lose sleep and feel really crazy. Not be able to concentrate on anything but their words. Do they know? I assume not. I wish they did. I even wish I could tell them but that would make me a "difficult patient" or, God forbid, "not compliant." Compliant. That's the word they use for patients who do what they are told and don't complain. I've never been compliant. Never will be. My last Pet report said, "concerning for progression." Concerning? I asked my nurse, "is that code? Is that a secret language?" She never really answered.
Doctors don't get paid to talk to each other.
Sorry, I am not helping. Just want you to know I understand how you feel. I'm trying to understand the whole game a little and that makes it easier somehow.
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Jaycee,
I think I got a little dig from my MO as I was walking out of the exam room yesterday, re your comment about "compliant patients," She said -- "well, from what I can see, you do a pretty good job of researching and advocating for yourself." I don't think it was a compliment. I'm sure she thinks I'm a PITA, if you get my drift.
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The problem with your MO having that opinion is that they don't just think it, they write it in your file. My first MO thought that all my side effects were caused by my anxiety. He told me in a roundabout way many times. I didn't get it back then but he wrote it in my file, probably multiple times. Now any doctor I see in that system has seen that. I even had my NP from my palliative care team start talking to me about "anticipatory side effects" just a few months ago. After that discussion, I considered where that had come from. She must have seen MO#1's comments in my file. The idea of doctors telling woman "it's all in your head" is not dead. It lives on in "anticipatory side effects" and your doctor telling you your side effects are caused by your anxiety. Fine. My side effects are caused by my anxiety. Maybe they are. They offer NO SOLUTION. I guess they are saying, "try not to be so anxious." Now I have side effects from Faslodex and am gun shy about telling MO about them. I assume I won't be believed.
Sorry, Bev. I somehow got from your issues to mine. And BTW, my nurse did say that "concerning for progression" means you HAVE progression. Why not just say that? It's some kind of radiologist speak that MO's understand.
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BevJen, I read your post last night and god knows how many times I erased my response... now Jaycee response inspired me...
I understand your feelings and frustration and “trust” to your MO and I am not going to upset that bonding. my former MO was an absolute narcissist. Whenever he felt not to answer my questions that needed information ( he probably thought that it was a waste of time), his answers were in the way I won’t see tomorrow morning! Only one example, for a while he kept repeating that my chest wall got involved with C, I must say that he was pro to make me scare of that while it was nothing on any of the reports. Once I told him show me on the reports, his response was funny: maybe radiologist saw something but didn’t report it yet! now I changed my MO, interesting that his last visit summary indicated that “chest wall now clean”. I mean really?!!!! especially in situations that other physicians were involved (neuro oncologist in my case) he led situation in the way he wanted.
I am sorry I know in such events the last thing ones want not to listen someone’s whining.
Jaycee, I got “difficult” tittle in the clinic too
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snowdrop, I finally fired MO#1 when he said, "I think you want to have an infection." I could tell you stories about that guy that would curl your toes.
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BevJen...wishing you the best for the 14th! Hugs sent to you!
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This is the third cycle in a row that my ANC is still too low after a week off ( .77, .67 , and .69). An extra week off got me over 1 in the past. This time however after an extra week off, I am only at .78. My next cycle will be reduced to 100mg but I now need to wait for a second additional week. This is the first time I have needed 3 weeks for my ANC to recover.
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Okay, folks, I am officially moving on from Ibrance. After a bunch of emails with my MO, we've decided that I should try keytruda as a single agent. I qualify for this because on my genomic tests, I have shown twice that I have tumor mutation burden high, and last May? June? the FDA approved keytruda for use with that specific test result. We are trying to get it set up to start either at the end of next week or the beginning of the following week.
I wish you all the best, and I certainly do appreciate all of your support since I started on Ibrance. I will check back from time to time to see how you are all doing.
Bev
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BevJen sorry that you are moving on but what an exciting move you are making. Good luck and I shall be following you with great interest
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BevJen- Good luck. Keep in touch. I know we talk on other Threads. It will be interesting how immunotherapy does for you. My F1 studies from diagnosis (2017) show a low tumor mutation burden. But would I get repeat studies when I have progression since those are from 3+ years ago?? It will be interesting to hear your reports of how it goes for you.
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BevJen, Wishing you great success with immunotherapy. I too will be anxious to hear how you’re doing and will be in your pocket when you get started in the next week or two
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Jaycee said, “Doctors don't get paid to talk to each other.“ That is chilling.
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Shetland, I know some doctors do and to great benefit to their patients. But I have always had trouble getting mine to. You've probably heard this from me before but the only time two of my doctors spoke was when MO#1 called my therapist to see just how crazy I was. I know what I said is chilling but I think it is mostly true.
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Dutch, after just one cycle on 125, my doc immediately dropped me to 75mg. I still have low months and have had to take a week off here and there. Just wanted to let you know you’re not alone.
BevJen, I wish you luck. I definitely want to stay in touch, as you’ve been a great help to me.
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BevJen...best wishes for you and please keep us posted.
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BevJen, let us know how things go on your new treatment
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BevJen - Wishing you the best on your next treatment.
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Jaycee, yes, the truth of what you say is what makes me shiver. (Maybe I misused the word chilling?)
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BevJen,
Best of luck with your new treatment. I will be thinking of you; keep us posted.
Tina
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Thanks, Tina.
This train has left the station. Just got the appointments through the patient portal for starting on Jan 19th. Fingers crossed that this is a good treatment for me. Just a little bit scared.... but isn't that the name of the game for all of us?
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Best of luck BevJen. I still check in here and you’re clearly on other threads so will catch up on how you’re doing there. And it’s very very OK to be scared!
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Shetland, chilling is the exact right word. I just try to qualify my statements because I seem to be debbie downer all the time. People expect their doctors to talk to each other but in my experience, they don't.
Bev, good luck. I WILL be stalking you.
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Bevjen good luck moving on. I’ll look for you on some other boards too
Anyone heard from PatMgc yet this year
Tanya
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Katrose, thinking of you, best of luck for your MRI. Keep us updated please.
BevJen, best wishes for your new treatment, I know you have done a deep research before accept it.
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BevJen, good luck with keytruda. Please let us know how that works for you.
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Hi Aprilgirl1,
Thanks for your good wishes on my upcoming scans! However, I had to switch the date because it took so long to get the PET approved; now both are scheduled for January 20th.
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Katrose...best wishes for your upcoming scans. Keep us posted.
I am due for scans this month also but my MO is holding off until early March because of the high Covid rate right now.
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