Ibrance (Palbociclib)
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JACK5IE, I can feel your relief. I am so happy for you.
PatGMc, I just found out I have skull mets as well, but they didn't mention cyberknife for them. Did you have a few lesions? Mine is ILC, and if it's anything like the rest of my body, I'm covered in them and in the bone marrow as well. I probably wouldn't be a candidate.
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Snow-drop, I want to apologize. I think I missed thanking you for your comments and hugs back at the end of April and then another comment after that. I appreciate you.
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KBL, I had just one lesion lighting up. I would book a visit with a Radiation Oncologist if I were you. I had a friend with multiple lesions who was told by her onc she wasn't a candidate for Gamma Knife but she called the RA and he did it for her. No recurrence after 10 years! I'm a believer in not assuming anything, my friend!
My best to you from PatGMc
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Aprilgirl - I wanted to say in regard to how hard you had to push to get the tests that had you end up here with us, its a darn shame. I saw in a Kisqali commerical recently a woman on the drug say "You don't know how strong you are, until you have no choice but to be strong". I both agreed with and resented that statement because it really shouldn't have to be this hard. In regard to the hair, I went down from 125mg to 100mg and you got me to look in the mirror and look for new hair growth, and I got excited, lots of teeny weeny ones wanting to try to sprout. I'm still pretty thinned out, tho I keep my eyelashes alot more at 100mg. I would lose and regrow them multiple times on 125mg, so far its only happened once and I've been on 100mg for 6 cycles now.Spookie, So sorry about your DH. I'm glad hospice provided all they could for him. I don't have the yellow DNR yet. I have non hospital one and a living will and a proxy set up. Will sign the big DNR when I get hospice involved, Which may be soon, because I really hurt and I said Ibrance was the cut off for me. Will be big deal when i sign that, not quite ready yet. Once I make the call they can load me up. I think I'm waiting to try stronger stuff only because I want to keep my wits/sense of my surroundings about me until I'm ready to call it. I'd really like to see 40 next Jan. That's my goal
And i'd like to hear "Ibrance failed" before too call it, for peace of mind, to say I really tried...mostly for myself. KBL, you are most welcome. Indeed, the little accomplishments and little happy moments are treasures. Folding laundry, washing dishes by hand, Going for a walk out with the dog, Surviving navigating a supermarket (thank God for shopping carts, it acts like a rollator for me in a way) and then of course there is my crack, lawn mowing
So happy I got to do a little. Good on you for sticking up for yourself. I've come to the conclusion when we stick up for ourselves dealing with people regarding our care, we help fellow sisters out. Maybe get the other person to be more thoughtful and in turn spare another sister hairpulling. Your like me, don't like to take medication. Geez, I don't like needles, don't like to take medication and i wind up with cancer, har har har. Snowdrop - bravo on defending your position and holding firm on your disagreement, you have every right to steer treatment. I hope they come up with a good plan for you.
Jackie, good news on the all clear! Woo! I hope the headaches continue to get better/less/go away. Always welcome to hang with us no matter what's next in line for you
Candy, hope your doing ok and check in soon!
Sunshine, RK, hope all is well!
I think Ibrance caused me to shift the earth out of its orbit by a millionth of a degree yesterday. The force was strong with me last night.
Oldie, but a goodie
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PatGMc, I will ask about it at my Monday appointment. Thank you.
Rabbit, thank you as well. I loved the video clip. That's hilarious.
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Thank you all so much everyone!
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I am still here.
I have been in the hospital from Monday afternoon to Thursday afternoon. And I do not have a Smart phone and my computer was at home. On Sunday night I had right back pain start, along with the abdomen pain from the liver biopsy. I thought it was the start of a kidney stone--- I have had kidney stones before. But this felt different--- higher up on my back. I should have went to ER on Sunday night. Monday I called my PCP and he said to call my MO since I just had the liver biopsy. My MO said to go to local ER. I went Monday afternoon. They did a CT and then a VQ scan and diagnosed a PE in my right lung---- blood clot. I was admitted and put on a Heparin IV drip. I went home yesterday (Thurs) on Eliquis.
Good grief always something. I was not thinking of a PE.
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Candy, I am glad that you managed to go hospital and home now. Best wishes for you. I think you have MO visit in a couple of weeks, I hope she gives you good news. Take a good rest ❤️
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Candy...so glad you went to the hospital. Feel better soon! (((hugs)))
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Candy, I pray for the PE to be gone and for you to feel better.
Love from patGMC
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Candy, wow, good call on getting to the ER. I'm glad they got you back at home. There's no place like home after being in the hospital. Do they know what caused it?
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Rabbit- I was off my 81mg aspirin for a liver biopsy. They think that was it. No other clots found--- did ultrasound of my legs.
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Candy... We all knew something serious must have happened. Glad you went to the ER and glad you're back.
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Candy: Thankfully you are okay. Just wondering why you are taking a low dose aspirin? I was contemplating fish oil or low dose aspirin to reduce inflammation. I cant imagine stopping a low dose aspirin for a biospy can cause a PE. This is frightening....
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Candy, sorry to hear about your PE and hospital stay but glad to hear you caught it and are home now!
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Candy, so good to finally hear from you. I'm sorry you had to deal with this and hope you are feeling better soon!
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Candy, I'm so glad your pe was found in a timely matter. I have read that when we have cancer we are in a hyper-coagulant state, so blood clots are something we need to be aware of - a scary thing. I am currently on eliquis for a blood clot in my arm. Part of me wants to stay on it as long as possible! Wishing you quick healing.
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Thanks for all the well wishes. I thought you all would wonder about me, but I do not have a Smart phone to log on to BCO from my hospital bed and my computer was at home.
Tinkerbell- I have a back story on why I was on low dose daily aspirin. And also might have contributed to the PE. I have 2 autoimmune disorders--- RA rheumatoid arthritis, and Sjogrens. I also tested positive for Lupus Anticoagulant Panel positive. The last one can make a person susceptible to blood clots. So I was on a low dose daily aspirin. Which I had to stop for the liver biopsy. I think the perfect storm---- my autoimmune thing, stopping the aspirin, the lengthy liver biopsy procedure, and my implanted Port - they say people with ports can have clots too. We did not find any other clots--- we did an ultrasound of my legs. I am going to talk with my MO at my next appt about it all. But it is done now so I guess nothing to do but stay on Eliquis and be more observant for another one in the future.
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Wow Candy, sounds like a close call and painful. Glad you've got it sorted. I had a DVT in my leg and now on Rivaroxaban for life, but it's fine SE wise. Hope the E is OK for you!Consequence of long term treatment for us sadly.
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Candy: I am sorry to hear about the non cancer stuff. Hopefully no more storms for you and the MO comes up with a good plan moving forward...
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RK2020 checking in. I’m not fully caught up but I did read the posts in the last 2 weeks. I’ve been busy moving into a new house which is honestly more then I could handle but I think the worst is behind us. Even though Covid has delayed delivery of some of our furniture, we finally got enough delivered last week to make us start to feel like we are home. The good news is that I now have a pool which is great for gentle exercise. And because I’m extra sore in the morning, I’ve taken to having my morning coffee in the spa and watching the sun rise. 🌴👙
KBL, Rabbit, Candy - oh how I wish I had a magic wand to make things better. Heck, I want that for ALL OF US! The dancers on this thread are truly the best and my heart aches that this is happening to us. Sigh.
I had a PET on April 8. We are going to keep an eye on two spots- my sacrum and femur - which are in the beginning stages of troubling me. It’s nothing that Advil can’t handle but I hope things don’t continue to deteriorate. I’m too familiar with how bad things can get. Back in March/April I was so out of shape that the kneecap on my “femur rod” leg wouldn't track properly. I was thrilled that a little exercise targeting the VMO muscle and hip greatly reduced my hip and knee pain. The rads to my spine diminished most spots, the biggest one is stable. 👍
Ladies - words can’t express how grateful I am for this group. Just because I haven’t been good at keeping up with the posts, don’t think you aren’t on my mind.
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Candy - Glad you are out of the ER. In March I mentioned to my oncologist how frustrated I was with fatigue and getting out of shape, I was so easily winded. She sent me for a CT because I was breathing hard just sitting there. After the CT, I was sent directly to the ER where they removed 1 1/2c liters of fluid from the lining around the right lung, clots suspected but not found. Put on Eliquiis (very expensive). No mention of low dose aspirin as an option. I found one of the warnings for Eliquilis amusing, it seemed to suggest I should avoid getting dropped on my head. Was taken off Ibrance in February since there was progression. Just before this I had been put on Exemestane/Afinitor, I wonder ............. Started radiation 2 weeks ago, and was told not to take Afinitor until done with radiation.
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Hello All, Chiming in, in case you may be interested in participating.
TODAY at 2:00 PM ET (US and Canada): Zoom Virtual Meet-up for those with a diagnosis of metastatic breast cancer
Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZMud-mppjguE9cVL5jJvM8j5-fR5kByW3Ui
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Ok so my path report from the liver biopsy went to the patient portal today.
Tempus pending.
Confusing trying to read the path report but I read it as ---
ER Negative----- was strongly positive in 2017.
PR Positive-- was positive in 2017
HER2 Equivocal----was Negative in 2017 What does "equivocal" mean???
Also says "the tumor cells are positive for GATA3". What does that mean??
So I lost ER? So the hormone therapy not working anymore?
Help me understand.
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Candy, what I knowwhen HER2 is less than 3, considered as equivocal which needs a FISH (Fluorescence in situ hybridization) test to confirm it whether it is still HER2 negative or positive. FISH test is more accurate than IHC. My primary tumor is GATA3 positive as well but I do not know what's for. your MO has now good information for your treatment.
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Thanks Snow-drop. My report mentions "the results of FISH will be mentioned in an addendum". But then later in the report it says "Addendum....." and says "HER2 Equivocal by IHC". So addendum coming later??? I just do not know how to read this report.
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Candy, my original bone mets biopsy showed ER strongly positive, PR negative, and HER2 negative. In April, my growing ovarian mets showed ER negative, PR moderately positive, and HER2 equivocal by IHC. A FISH test showed it to be negative. The FISH test took about 4 days to result. For me, this means I start Xeloda this week.
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I don't know if FISH test was done and showed equivocal also, or not. The path report says "FINAL WITH ADDENDUM" so I think addendum done already. And so it shows "HER2 Equivocal (score 2+ by IHC)". So meaning IHC was questionable and FISH done and also shows equivocal???? Report not clear. I will ask MO next week. But, may mean HER2 questionable. What do they do in that case??
Betcha I am looking at Xeloda too.
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Candy, I would call MO’s office for clarification, to make sure if pathologist has done fish test already. If not then they should test it now so by next week the results will be ready for your MO, saving time.
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Candy, first of all, I am so relieved you went to the ER last week. So sorry you had the PE but I am thankful that was "resolved", sorry it's a new medication
I don't know about the HER2 equivalent, agree with Snow-drop that you should call your MO for clarification.
RK2020 - good to hear from you! Your new home sounds wonderful!
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