Ibrance (Palbociclib)
Comments
-
Cross posted with bone mets thread, so please don't read again if you've seen it there!
Had a nuclear bone scan and an MRI of my liver/abdomen yesterday. My MO is very into ASCO, and this is ASCO weekend (this year virtually, of course). So I shot her a note and told her I knew she wouldn't have time to talk until next week, but could she please at least release the scan reports from yesterday to me. Be careful what you wish for, I guess. The MRI was fine -- the liver is basically unchanged, so the combo of the local microwave ablation last July plus the Ibrance/Faslodex must be working on the liver. The nuclear bone scan wasn't such a great story, in comparison to the same test a year ago (where the report said that I had widespread arthritis in my body). NOW they see the bone mets, and they are all over the damn place, including at the base of my skull, my right clavicle, some of my ribs, and along my spine. They are described as 'sclerotic mets' and the bone scan report says that they are "better appreciated" on last week's CT scan (which did not have nearly the detail as to location of this scan.) I guess "better appreciated" means that the radiologist can see them more clearly???
My MO said we will talk next week, but putting the three tests together, she said that "there is probably some growth in the bone related disease" but not in the liver. After reading the nuclear bone scan, I was pretty amazed at her wording -- I thought she would say something like "OMG, your whole body is a metastatic mess." I mean, it is, but she was pretty kind in her wording. Guess I'll hear what she has to say next week.
I think the one that scares me the most of all is the skull stuff -- it says it's in the calvarium, which I had to look up, and it's the base of the skull from what I can tell. Wow.
So I guess the mystery of whether I do or do not have bone mets has been definitively solved. They are there for sure.
Next up: whether we continue on Ibrance or not, I suspect. Big sigh.
0 -
Bev Jen,
I am sending you a big digital hug. My thoughts are with you.
0 -
BevJen, I thought "sclerotic" meant healing bone. Could you be healing from bone damage..so maybe your current treatment is working? Can a PETCT confirm or is it not sensitive enough to measure any active bone uptake?
0 -
Since they found the reoccurrence in my lymph nodes, three of them, and metastases to my lungs on an unrelated scan the week before last. Ever since then it's been a crazy ass roller coaster. Only finished initial treatment in March 2019. So distraught, although I was relieved when my fish tests came back HER2-. Starting Ibrance and Faslodex next week. Nervous about side effects. I didn't have the best of luck with a AC/taxol treatment the first time around. Obviously, ha ha since the cancer has reoccurred In little over a year. Funny they call it reoccurrence. After all it's been on board the whole time.
BevJen I know it's so scary. Hope you find some distraction and relief while you wait for your meeting with your MO.
0 -
MandM,
For what it's worth, I had ACT on my first breast cancer in 2003. I thought it was hellish. There are some side effects to I/F, and they differ from person to person, but I think most of us have found the treatment very tolerable. For most, the worst side effect seems to be tiredness that comes and goes. Believe me, this I NOTHING -- and I mean NOTHING -- like your chemo regimen. Not even close. Good luck.
0 -
Bevjen, your reports sound confusing to me for sure. I have sclerotic bones also. My MO said that was bones that are healing.
Pat had a spot on her skull too. I think they radiated it. I hope they figure out what to do to keep you on ibrance.
0 -
BevJen- Wow. So confusing. I have RA- rheumatoid arthritis. My first bone scan showed uptake in the spine, clavicles, shoulders, elbows, wrists, pelvis, hips, knees. My MO said some could be inflammation from the RA- joint areas. But I have documented bone mets, on PET and CT, in spine and pelvis. Then the next bone scan showed minimal uptake in hips only. The RA didn't go away- I am not on any treatment for the RA since cancer diagnosis (docs cannot agree on what to use). So why some areas on bone scan light up one time but not another. Just saying, the testing can be confusing and seem to contradict from one scan to the next. I don't understand how the docs decide there is bone progression and time to change treatments. With your liver looking good, I would question if this is the time to change treatments. But, I am not a doctor.
0 -
Candy,
Yeah, it's all pretty confusing even though I've read through all of the reports. I don't have diagnosed arthritis -- just have had lots of aches and pains and those two bone scans that said arthritis (2018 and 2019). I am going to do a video visit with the MO next Tuesday afternoon but I am uber focused on the liver and not eager to switch treatments because of that. We'll see. Thanks for your response.
0 -
Bevjen,
Not sure why my post was deleted. Your scans were confusing. My MO said that the sclerotic were bone mets that were inactive and healing. Those will always show up on scans for those that had bone mets.
I hope she clears that up when you meet with her.
0 -
BevJen...hug from me too and you are in my thought and prayers.
0 -
Update on Ibrance/Neupogen issue---
Call from MO office this morning, insurance denied Neupogen. The office is trying Zarxio. I have never heard of that one. Read it is a biosimilar drug to Neupogen. Awaiting call on if that will be covered. I kind of hope it is not covered and I can just forget about the low count this month and just continue as is.
0 -
Candy. My MO said she did not use Neulasta for me as the bone marrow cells are not being killed like in chemo. They are just in hibernation until your week off. Usually the next step to improve ANC is dose reduction. Just puzzled.
0 -
Sandi- I am puzzled too. You can see my previous posts explaining all this. I am not able to discuss with MO as she is out of office till Monday. I think we are going down the wrong path, but I am helpless to stop it. If I just refuse the med (if finally approved by insurance) then my MO will think I am being a smartass-- thinking I know better than her. I don't like this whole thing-- ordering the treatment without discussing with me, and the literature saying that it may not be the right way to address the low counts.
0 -
IntoLight how do you feel about the possibilty that they could try to do the liver biopsy but would stop if they felt it wasn't safe? Maybe explore that and the risks a bit further -- especially what would be "triggers" that would cause them to stop. Just a thought. My heart and prayers go out to you!
Hugs, Penny
0 -
Penny, yes, my MO said this. We will talk more Wednesday when I see her. By then I will have thought it through more. I am not against that just want to know if there are benefits to waiting until hospitals, etc., are a little safer.
0 -
Ibrance/Neupogen saga- Ladies I need a group hug right now-----
Ok I stood up for myself and I am shaking. Let me explain.
I got a call this morning that insurance denied the Neupogen and the office was checking on Zarxio instead. It was going thru my mind that I am hesitant about all this and now the insurance is denying it too. So I called and left a message for the nurse to call me. They called back---the insurance approved Zarxio and I can come in and get the shot. I said WAIT. And I voiced my concerns about using this with Ibrance when Ibrance doesn't kill off the cells like regular chemo does and my concern about not being able to discuss with MO the "why" behind the order for this now. So I refused the treatment plan for the time being. They will leave the MO a message to call me on Monday to discuss.
I hope I didn't make a huge mistake. I don't want to be labeled a "problem patient" by the staff or have the doctor upset with me thinking I was second guessing her medical expertise. I dread the discussion with her on Monday. How do I explain that I read (on here mostly) about how Ibrance works versus cytotoxic chemo. How the recommendation for treatment of neutropenia with Ibrance use is more time off between cycles and not Neupogen. I don't want to create a rift with her or the staff as I am going to need them more and more in the future.
Also---- I have never understood the whole thing about not getting an infection as easily with Ibrance versus regular chemo. Let's say I go to a schedule with 2 weeks off instead of 1 week to allow my cells to "wake up" and numbers to go higher. Then when I start the Ibrance back, then the counts will go back down. If I am exposed to a germ DURING the cycle the numbers will be low and "sleepy" and cannot fight as well. So.... I need to be exposed to the germ during my 2 weeks off to be ok?????????????
I am confused. And if I am confused then I don't have steady footing when I am trying to make my case with my doctor. It will show how stupid I really am.
Help. So many on here seem to post about being so confident, researching their options for treatment/tests, and have such a good rapport with your MO's. Discussing options, trials, etc. How can I have that? Is it because I live in a rural area? We are not supposed to question our doctors?
I am not all that concerned about my counts. The treatment is keeping the cancer at bay. That is my main concern.
0 -
Elevated Tumor Markers -- Part 2.
A number of you posted kind and reassuring messages a few days ago when I posted that I'd received a message from the MO that my markers (for the very first time ever) were elevated and she wanted me to come in for scans. I was SO grateful to you!
But my DH and I did not manage to relax ... or get much sleep. (Cheerfully hiding our anxiety from our sensitve and anxious twins was pretty unbearable.) God bless the MO and NP -- they pushed the hospital got the scans scheduled for yesterday. And God bless them 10 times over that they messaged me the results last night.
At 5 p.m. the NP messaged me that they were awaiting the bone scan but the CT showed not new sites of disease in my abdomen or pelvis. Happy Dance -- at least on one leg!!!
At 7 p.m. she messaged that the bone scan had been released but that the MO is "under impressed" with the finding -- an areas on my rib with "new faint focal uptake." I should continue on Ibrance bit have another scan in 6-8 weeks.
I know how lucky I am to be starting cycle 42. I also know how incredibly lucky I am that, besides one serious a progression scare nearly three years ago, I have been an uneventful NEAD for so long!
I feel selfish for feeling this way, but this has rocked my world. I felt I should be sipping champagne but I laid awake last night thinking ... why are my markers suddenly elevated? What will the next scans show? Most of all, what would my children -- my daughter is already debilitated by anxiety -- do w/o me? My parents and sister have all passed away and my DH's closest living relative is in Phoenix. And my 62-year-old DH has health issues of his own.
I end with an apology for this selfish rant. So many of you are dealing with so much more, and so much that is more immediate,. But I needed to get it out of my system. If anyone has managed to read this far, I send you extra love.
Penny
0 -
Penny- Happy Dance indeed !!!!!!! Cycle 42, wow. Yeah, we all understand the what if's of the next scan, and the next one after that. Can never really relax. But for now, for today, celebrate. Hugs.
0 -
Candy, you have a hug from me!!!! I think you did the right thing. You are brave!
You have every right to question. It's THEIR problem if the don't respond correctly.
I've got to jump back to work .. but quickly I'll say I believe the Ibrance makes us much more susceptible to viral infections but I don't understand the mechanism.
BIG HUG as I run,
Penny
0 -
Candy, please try not to stress. You have the right to have this choice explained to you. In the end, it shouldn't cause you any harm..maybe that is what your MO is thinking?
Other than being randomly tired and the occ low ANC, I never got a primary bacterial infection in 3+years. I did catch a chest cold once and took antibiotic for secondary bronchitis.
My MO dose reduced me from 125 to 100 at 3 months due to low ANC and platelets. I got 3+ years from this treatment.
Please, please don't stress. Continue to be a well informed patient as that helps you understand medical advice made on your behalf. Your questions should be voiced without perceived fear. And you know, you can always seek out a different MO that is a better fit for you. It is your cancer afterall.
S
0 -
Candy,
I think you did the right thing. As patients we have to advocate for ourselves and make informed decisions. If your doctor is offended by your questions, then perhaps she is not the right doctor for you. I certainly wouldn't view you as a problem patient. I too would be very hesitant to get a different drug and would want to know why.
Hope you can just put this to the side now and enjoy your weekend as you look forward to your haircut! My salon is opening sometime in June- I can't wait! I'm also thrilled because I can go to the eye doctor on Tuesday and get an updated prescription for my contacts. I have been rationing them and am looking forward to being able to wear them every day again.
0 -
Cross posted with bone mets and liver mets:
Folks,
Living Beyond Breast Cancer is having their conference virtually, and it's FREE. There are some interesting sessions for all. The conference will be held on June 13 and 14. There are some heavy hitters talking about lots of interesting topics.
To register, go to: https://metsconf.lbbc.org/en/
There is no charge to attend.
0 -
BenJev, my MBC was diagnosed in the emergency room in November of 2016. I had collapsed in excrutiating pain and rushed to the hospital -- but my supposed kidney stone turned out to be a spinal lesion that had caused a compression fracture and the tumor had hit my spinal cord. After various scans in the ER, I was told I had a a second lesion on my spine as well.
A month later, I had addtional scans and met in person with the radiologist at the hospital. He showed me -- not two but five -- sites that had lit up! Yikes! And after my followup scans a month later, they reported additional hot spots on my ribs as well. And possibily one on my skull which totally freaked me out.
Then my MO gushed about how well I was doing -- after a lot of back and forth those in the know decided that almost all of what they were seeing (except for the one MBC lesion confirmed via biopsy) was uptake from old injuries, new arthritis, or sclerotic healing of old mets. I was reassured that anything on my skull had nothing to do with a possible brain met. I learned then how much art there is to assessing bone mets, and also that sclerosis is usually my friend as it's part of the hea;liong process.
I don't know if you saw my latest post above but they don't know what to make of the one "new" find from my scans. The radiologist thinks it might be a big deal; my MO does not. (So far she has always been right.) Otherwise, the report makes me laugh -- I lit up in 12 places this time -- ribs, shoulders, ankles, spine, you name it. They tell me I have severe arthritis. News to me!
I don't want to be falsely reassuring, but all this is to say your MO's calmer take on what he/she is seeing may well be grounded in solid reality. And the stable liver mets -- that's GREAT news!
Hugs,
Penny
0 -
Candy - you aren't dumb. A dumb person wouldn't be asking the question in the first place!
Just tell her you had done some reading on Ibrance and didn't see that neupogen was used - you don't necessarily need to name your source
And finally - good for you for sticking up for yourself, even if its scary. You've got to live with your body, you may as well make sure its YOUR choices and not theirs what happens to it!
0 -
Candy...you have every right to feel the way you do. I am wishing you the best news when you speak to your MO.
Penny...great news!
0 -
Hey Penny, quick question - you were de novo and yet they still did a bone biopsy? Was that to figure out where the cancer came from or to see if they really were bone mets?
De novo is a whopper at any rate, I cannot imagine getting THAT news without a primary in the breast!
0 -
Thank you ladies. Today has not been a good day. I still wonder if I did the wrong thing. But then I think I did the right thing for me. I just pray that the MO conversation on Monday goes ok.
Chicagoan- I do plan on enjoying my haircut on Tuesday! And whoopie to you for being able to get more contacts and not have to ration anymore.
BevJen- I too saw the info about the free virtual conference. I am registered.
Ok more saga---- As I am typing this post, my phone rings. The MO nurse. MO received the message I am holding off on the Neupogen for now and I want to speak to her on Monday. She will call me sometime Monday (nurse said she has a full schedule of patients Monday). And to continue to hold my Ibrance. WHAT !!!!!!! I WAS TOLD ON WEDNESDAY TO START NEXT CYCLE AND GET NEUPOGEN. So I have been taking Ibance-- Wednesday, Thursday, and Today. This whole thing is a mess. I told the nurse this is why I want to talk to the doctor---miscommunication about this whole thing.
Can I just forget this whole day !!!!!
0 -
Candy, so frustrating. I am so sorry you are going through this confusion. Medicine should not be this way! I wish I a solution or an educated suggestion but I don't. I can just send a virtual hug. Perhaps your MO is as frustrated and stressed by this Covid as we all are. I know I am barely in control.
0 -
SondraF, they said from the way it looked that there was a very high probability it was cancer but did need the biospy to be sure. And yes they needed to find out what kind of cancer it was. That latter part took them close to three terrifiying weeks for the labs to figure out -- I knew if they didn't figure out the type there wouldn't be much they could do. BC w/o a primary is very uncommon but when it's found there's virtually always lymph node involvement and I didn't have that either.
Jack5ie, thank you! I'm still too shaken up to feel like celebrating -- but I'm sure I'll get there. :-)
Hugs,
Penny
0 -
Happy it turned out for you Penny! Wow cycle 42!
Candy, you did the right thing. We need to be our own advocate. Sorry it seems there is a communication issue with you're nurse and MO. That has to be very frustrating. I agree with the others, please don't stress yourself out over this.
0
