Ibrance (Palbociclib)
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Candy glad to see you are getting that “take charge” advice! 👍
Joyner I may be way off base here but I seem to recall that long ago we had an exchange during which you said your MO thought that it was pretty much a toss up been starting you on I/F or I/L. Others on here would know better but I wonder why AIs such as Letrozole or Anastrozole are not being offered as part ofa next line option? Maybe worth asking in Wednesday?
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Happy for you Piggy99
The best christmas present you can get.0 -
Just a quick post. I am off to work for the day ( Saturday ). I got thru the MRI ok!!! Woohoo!!! Thanks to all of you for your prayers and advice. Yes, it was really 2 hours long. No, they did not count down the sections. I told the tech my concerns at the beginning. They do have music to listen to but it is through a set of headphones and I could not wear them with the stuff they had around me to hold my head still. The tech said I could 'move' some when the machine was quiet, but had to lie still when the machine was noisy. The tech spoke thru the speaker to me several times thru the test---- 'the table will now move', 'the machine will be silent now for me to get the next pictures ready'--meaning I can move some ' you are doing great'. This helped to hear that she was still around and I was not alone. 1/2 way thru she injected the contrast so I had to be out of the machine for a few minutes. I sat up on the table and she asked if I wanted to walk around. I declined as I was doing ok. When it was over, she said I did great. I told her she was great. She said "this test is not for the faint of heart".
Off to work. I will post when I get results and catch up on you all when I am home from work.
Love ya.
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Hi Granna, I have extensive bone mets throughout almost my entire skeleton, except the areas where it doesn't usually go, even have some skull mets, nearly every vertebrae, clavicals, scapula, both upper arms (humerus), both upper legs (femurs). I also have a left pleural effusion which I have had drained multiple times (currently it's very small, so haven't needed it drained since Feb 2, 2018) also a small area of mets to the retina of my left eye (has been stable since first discovered, thankfully) and there is a soft tissue mass on my heart and there was a soft tissue mass obstructing the flow of urine from my right kidney, so that kidney has now atrophied and mostly, probably died (despite stenting, etc...) . So, fairly extensive disease and yet, as you said, 4 years is good and actually it's been 4.5 since official diagnosis (via rib biopsy) but truly I'm sure it's been 5 years off-the-record because I had fairly bad back pain for about 6 months before diagnosis. I was a nurse practitioner, doing home visits to medicare patients, lugging around a very heavy rolling bag (but can't roll it on snow and ice, so often carrying that heavy bag) so I just blamed the back pain on that for months.
. Us medical folks are the WORST! So, yes, really more like 5 year survival, even with such extensive disease! Very grateful! Oh, and I'm 52 now, was 36 at original diagnosis (stage 2B), 47 when it recurred.0 -
Candy, wow! You are amazing!! I have to be heavily sedated before ANY MRI, but especially before MRIs of my brain or neck, because they have to put your head in that harness!!! It is horrible. I'm telling ya, getting through what you did, especially if you did it w/out sedation, (but even if with)wow. People who have never tried that have no clue! I don't know your whole story, but praying the results are clear and accurate, and also encouraging.
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Penny-78 Depending on what second opinion doc says, I think Joyner and I will be on the second line treatment. Aromasin is an AI, given with Afinitor, AA. So we will get to have those same joint and muscle pain that seem to come with all AI's. I'm especially frustrated with that because I have ESR1, meaning I have built up a resistance to all hormone therapy. But, FDA requires that it has to be prescribed along with targeted therapy. Such a bummer.
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piggy99- Congragulations on Harvard!! I'm hoping for good results for those waiting for test results or looking for new treatment plans. This forum has been so helpful and encouraging for me. Wondering if any are having leg, feet and hip aches and pains on I/L. Especially in getting up in the morning and sometimes at night. Im afraid to complain too much and have my dose lowered from 125mg. I learn so much from you all . Hope everyone has a great weekend.
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That's great, Candy. I hope what I told you gave you the ability to walk in there with confidence and maybe a little bit of "attitude." I have never had anything but great techs for all types of scans, CT, MRI, Pet or whatever. They did know how long it would between "quiet" periods, they just decided not to tell you. I guess that's what bothers me. They decide. For me (maybe not for all), I want to be told everything, the truth, the whole truth and nothing but the truth. It bothers me when medical providers decide it is better for the patient not to know stuff. Sounds like you had some good people with you. I'm so glad.
Grannax, what about just not taking the AI if you know for sure it is not working? Just because it is prescribed doesn't mean it has to be taken. I usually take at least few days off of letrozole on my week off Ibrance.
elenas, the aches and pains are probably from the letrozole so mentioning it will not get your dose of Ibrance lowered (not there is anything wrong with that). There are some remedies people here use but I've never found them useful. Your MO might have some ideas. Mine didn't.
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Penny congratulations. Harvard Law!!!
Candy I went through my PET scans, MRI, CT scans like a boss 15 years ago. This time I got older and maybe something triggered in my brains memory and I can’t do it without Valium or something. I also prefer to have my husband suffering In The noisy room with me. Ive been in for 1and 1/2 to 1 and 45 never did a 2 hour one. You could get a prescription and just have it as a security blanket. They talked me through it and my husband lightly touches my leg when it’s silent. I think they talk about me when I leave as the scariest patient ever. I don’t care it is how I feel and what I need to get through it. You had great support on here. I was praying for your best results. Ididn’t want to share what I punk ive become until you had your chance to be Wonder Woman!
Tanya
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Grannax my heart goes out to you both! (In fact it goes out to everyone on this board
I don't think that Joyner has yet had the AIs that are usually prescribed in first line -- that ws what my uneducated musing above was actually about. Well I'm sure she'll get the solid advice at MSK .... Tanya that was Piggy not little old me! But thanks! :-)
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well Penny at least I can blame it on chemo brain.
Tanya
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Candy.....YAHOO!!! Done! I did a 25 min MRI and could barely stand it. Fingers crossed for great results. Standing by!
Penny, you have a great memory! Yes, my first onc offered me a choice between Ibrance/Faslodex or Ibrance/Letrozole as a first line of treatment when I was first diagnosed in Jan 2017 with MBC. In total ignorance, I told her that I'd do whatever she recommended. She said that she'd recommend the Ibrance/Faslodex but that some just couldn't face the Faslodex shots. I told her that I could face whatever she thought was best for me, so we went with I/F.
Some have suggested that I thus missed a line of treatment (remember Z?). My current onc (not that first one) said, when asked, that I was fine starting with I/F and that it was the "gold standard" for treatment of my bone mets only situation (though I think he now leans toward Verzenio as being the standard and also though it appears to have failed, though exactly when that happened...and if it did work... is unknown).
It will be interesting, indeed, to hear what Dr. Sanford at MSK has to say about all of this on the 26th and whether she, too, points me at AA. I just read my bone biopsy of Dec 13th, and it sounds as though my bone marrow is loaded with MBC. It's so hard to read these blasted path reports!! Shoot, shoot, shoot...
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Candy you rock!
Tanya ha! 😄
Joyner We'll all be very eager to hear. Yes those path reports alway scare the heck out of me — even when it's all good"."
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- Story about MRI---Year and a half ago, I had my very first one. Skull and entire skeleton. They told me over two hours. So, took a Zanax. After an hour and a half, the tech was injectioning contrast into my arm. I said how long has it been? He said an hour and a half. Half hour left to go. I said Wow that went fast. Tech said yep time goes by fast when your sleeping. I said Sleeping? I wasn't sleeping. He laughed and said, Mam just asked anyone within hearing distance, you most definitely were sleeping. lol. Of course the last half hour (wide awake) seemed forever. Hope I never need another.
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Lynn....When my bone marrow was loaded with MBC, my onco put me on Taxol infusions. It did the trick!! That's when he took me off my first round of I/L after 4 months. I have now been back on the I/L...starting my 9th month tomorrow.
I'm so anxious to hear how your visit at MSK goes.
Hope
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Oh, Hope...that's good to know! I assumed that once you had been on Taxol or other infusion chemo(s) that you couldn't go back to Ibrance. I'm so ignorant, though I do a lot of reading. Just hard to make it stick in my brain!! I just finally generally understood the concept of hormonals in conjunction with targeted therapy(ies). And now, I may be kicked off. Though AA is a hormonal + targeted therapy, I think.
Of course, I am studying my bone biopsy path report and Googling every other word. It sounds hideously negative to me, but I don't know what I'm reading. I'm going to ask the MSK doctor to compare the two reports (2 yrs apart) for me. It has just occurred to me that with only 50% ER+, PR- (0%), and HER2- ("score 0"), I'm almost triple negative. Is there such a thing as "almost"?? Ignorance!!! Ignorance! I just hope that I can think of the right questions to ask!!!
Hugs to all and the merriest of Christmases...and sorry to keep taking up so much air space!
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Lynn...I am totally ignorant when it come to "lines of treatment". However, I'm glad I'm back on the I/L and still able to take the 125 mg. Plus, no side effects. I pray it's a keeper for me.
Hope
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Lynn, for a rule follower, this is hard but with MBC and new tx's coming along every ten minutes, the only rule is there are no rules. If an MO wants to try something (and the MO can justify it to the insurance company so they'll pay for it), it can be done. I remember someone telling me that if I dropped down in dose of Ibrance, I'd wouldn't be able to go back up. My former MO planned to do just that. I never went back up because I'm doing fine on 75 mg.
Also, when Googling your path report, watch the dates. If something is about the new tx's, make sure it is current. Web people are bad about providing dates of publication, but I try to remember to look. With just plain information about what things mean in a path report, it doesn't matter so much but that invariably leads me to tx information and that is date sensitive.
Good luck in NY. Maybe you'll run into Ginsburg. That's where she is/was. You'll do fine. And I'm assuming you'll be able to communicate with the MO after your appointment so not a problem if you forget to ask something. And take up all the air space you want. This is our space, YOUR space.
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It is Sunday afternoon and I am getting caught up on all the posts.
I love you guys. As I read the posts, my heart is blessed for all the well wishes. I even got teared up. I know you all are rooting for me ( as I you ) and we haven't even met each other.
Piggy--Brag away, girl. Harvard!!! Woohoo!!!! Like PatgMc said--When one of us is at Harvard, we are all at Harvard. You show them how strong us MBCers are!!!!
Snooky-- All the kind words here helped me through the MRI and I know my Lord and Savior was there with me. That med must have been strong for you to have slept through all that noise!!!!
Marynp-- 5 years with such extensive mets!!!! Another Woohoo!!!! News like that gives us all hope.
Jaycee-- Confidence and attitude!!!! I am a cat person and someone gave me a magnet one time that said "Cattitude". That is me.
Tanya-- I didn't know someone could have came in with me for the MRI !!!!! My sister offered to go with me, but I told her no. I thought she would just sit in the waiting room during the test and with it being 2 hours would just be bored. I didn't know she could have sat by the machine and touched my leg. But I don't know if she would have been willing to do that even if we knew it.
I wish we could all get together and meet face to face. I would give you all a BIG HUG.
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Joyner (the first person to reach out to me on this thread). Wishing you and Grannax all the best on your next treatment. Happy Holliday’s to you wonderful dancers. Maire
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Hi everyone and Merry christmas to those who celebrate it! I’ve been absent from the boards for about a week with the last rush of the year for work and Christmas planning/parties, but trying desparately to get caught up!
I’ve got a lot of reading to do but Grannax and Joyner - aim following along and thinking about both of you as you make sense of this new information. i hope MSK opens up new thoughts and options for treatment and I’m so interested to hear how things go there. And 50%ER+ is indeed ER+ Joyner so you are not almost triple negative.
Grannax I have to look up when your potential surgery isn’t happening (the one that might not happen) but I’m glad you decided to go forward.
I will get caught up but in the meantime I wish you all some peace, joy and happiness for the holidays!
Love to all,
Lauren
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Wishing everyone a very happy holiday and may 2019 be full of good news for us all 🙏❤️
Just saw this about Letrozole;
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Merry Christmas everyone. My third Christmas is tomorrow and it's my birthday. I with be celebrating with my little family, a small , more leisurely day. I'm looking forward to it.
I do have a liver BX on Thursday. At least an attempt, praying for success.🎄🎅🎂
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have a wonderful birthday with your family grannax and thanks for reminding me that your liver BC is Thursday. Will be thinking about you.
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grannax keeping you in my thoughts!!! Good luck on Thursday!!! May you have an ease-full experience through and through.
Love,
Brenda
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Merry Christmas to all that celebrate and Merry Tuesday to those that don't. Wishing everyone a wonderful holiday - what ever you celebrate and wishing all health and happiness in 2019! Kitt
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Have a wonderful holiday, everyone. Grannax, I hope your birthday is happy and that your liver biopsy is BENIGN! Wouldn't that be great? All of you will be in my prayers in the days to come.
Love from PatGMc
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Merry Christmas, all! xoxox
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Merry Christmas to all of you.Wishing season's greetings with lots of love,care and happiness.
With hope and love.
Lalit.
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Merry Christmas everyone!!!
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