I am STILL on Ibrance and Anastrozole, after being on this treatment for 5 years. But I fear things are about to change as I am now showing up as anaemic all the time, (each monthly blood test.) And My CA markers are on the rise, constantly. And my neutrophils are constantly too low to go straight into me next months cycle of Ibrance. I reckon there’s something lurking somewhere that the scans have not shown up.
My ONC is concerned and has ordered a full set of scans again. Sooner that the 3 month mark and including a CT of the brain, as I’m getting constant headaches. Oh well. It had to happen some time.
I’m just wanting to let you all know where I’m up to.
Sending love and PEACE in these terribly unpeaceful times.
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Timtam56
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Hi Timtam, it's good to hear from you again, though I'm sorry to hear about your current concerns and headaches. Five years is a great run on one treatment, which does bode well for you if you have to switch treatments. Do you know yet what your onc might prescribe for you if you do have to change? After I came off ibrance I was on lynparza for a year, then a trial for 6 months on Faslodex/ibrance and lynparza together. That really didn't work at all so now I've been on Afinitor/tamoxifen for 3 1/2 months. To be honest I feel a bit this year like I'm just biding my time, waiting for the other shoe to drop. Bloodwork has been mixed so far, and I've had some weird episodes of pain along the way, though I do feel pretty good again now, just running out of steam early every night and feeling like I can't get things done. I'll be getting my fortune-telling scans done in 10 days. ( Maybe we'll be scanned around the same time?) I'm trying not to worry, but I understand how you're feeling. Let's hold some hope that things are better for each of us than we may imagine.
And yes, what horrible unsettling news abounds. Sending love your way
I have recently been test for that Piq13%&* (or whatever the number is)!!!
My Onc said I am able to be on either the trial which would mean I’d get either Piqray or Capecitabine???? Is that how you spell it? But that’s down the track a bit. My scan has been booked for early November
I know a few things about these treatments and some of them are very good things, but some not so great. There in lays (Lies) the problem. We all here just have to roll with the punches don’t we? Nothing else we can do!
Thank you, and yes, you're right, I think these drugs have been good for some but as you say, we have to take the bad with the good!! Unfortunately no way around it! 😢 So I try to focus on the good, but it can be a juggle at times, lol. All the best for your scans too!
I’m sorry to hear about the headaches and the low neutrophils and rising markers… it does sound like it may be time for a change…. A new med may be just the ticket to kick this thing back while being less harsh on your blood… I just heard a presentation by a DFCI oncologist about the new ADC that was so hopeful! Those are the newer Trojan horse drug conjugates thst usher in strong chemo on a small molecule like transtuzmab that are proving very effective for ER* cancer… all counts very hopeful for long stable outcomes so don’t lose hope. I was feeling so YUCKY and tired and frankly like I was dying when the CDK4-6 drugs were failing but new cancer wasnt beings found on the scans… finally switched drugs when spread was seen in the liver… and I was so fearful to change to xeloda and all it’s HFS side effects… which are bothersome… But I have mostly felt better ( except for my feet) and I love being able to get through most days without having to lie down.. so changing drugs can lead to some things hopefully getting better for you.
Hope that was helpful! And my kiwi pals are staying with me for most of October and brought me my fav Whittaker’s choc and Tim Tams! And of course I thought of you… Be well!
Oh yes, I was actually referring to you. In another response I made to someone here about knowing a little bit about Capecitabine. I remember all your posts about HFS. I followed them diligently. I am very scared of that, but I’m also understanding that it could be that it doesn’t mean that it’s going to affect me the same way as you.
I only know all this because of all the blood tests.
Yum yum. Favourite chocies, are the best. I’m glad you are feeling fine.
I feel for you too. You really got a lot of time out of your most current meds. I was on anastrozole also and Ibrance with fasoldex for a short time. Sounds like your doc is on the ball. I was scnned with a ct in 2019 and markers were up, but nothing was found. Then a pet scan found the progression. I also have weird pains in my head, not real headaches. I do have a lesion on my skull that was picked up on the June scan. Anyway, we all feel the same issues and we are all here for each other for support. I would be lost if I had not found this site. We are all human and have the same feelings. Hang in there Timtam. Blessings
Thanks so much for your thoughts. I am actually fine. I cna’t believe how fine I am in my mind. My courage. My acceptance. Just as all of you here are! We are all amazing and I agree. I would be lost without this forum.
Hi Timtam. I'm so sorry that you are facing untroubling stressful times. This brings me back to December of last year when out of the blue getting up from a chair my left shoulder fractured and I'll not forget that feeling when it slipped out of the socket and then while stabilizing myself my opposite right hip fractured. It was an unbelievable serene experience. I was diagnosed De Novo MBC with extensive bone mets in 2018 but honestly, although aware of stories of pathological fractures never thought it would happen to me. Anyway after having a 7 hour surgery to repair both that led to a almost 3 week hospital stay (over Christmas😒) and a month in a rehab center. I thought that was bad enough and that I had been tortured enough but no.....a month later I had scans that then showed progression and the need to change treatments. Like you I had been on Ibrance and for me Letrozole for 5 years and did very well with basically no side effects.
I remember that appointment with my oncologist and it felt like an out of body experience honestly when I could hear her telling me that I couldn't stay on my beloved treatment anymore. It felt like I was being kicked in the gut when I was already at my lowest point. However we all know our cancer will eventually outsmart our treatments and we will need to move on to the next. Living in Canada under a government run cancer system we don't have access to every treatment that's been approved....our oncologists have to follow the pre-approved algorithm of next in line treatments. So onward I went to the next. I see you are in Australia and I believe your hospital system is similar to ours.
I started that treatment in March and after a few bumps in the road and dealing with some side effects that were new to me as I didn't have any while on my Ibrance for the 5 years. However it is now almost 7 months since I started the new treatment and life goes on....I have adjusted and my hope is back.
So my point is.....yes the thought of and the actual changing to new treatments suck but you will get back to your once settled peaceful self again. I wish you the very best with your upcoming scans. It does sound like a change will be in your future but remember it is inevitable with this disease but you will come through it with a new kick ass treatment that will stop the cancer in it's track again. Your long run on your first treatment as others have said bodes very well. Take care my friend and know that we all understand your current feeling of going through troubled waters. Keep us updated and we'll be here for you.
You don’t say where your progression was, and were you on Denocumab for bone strength when those breaks happened? Also what treatment have you been put on now? I’d dearly love to know the answer to these questions.
Wow! I didn’t know about the government run decision that we are restricted by?!%*@.
Hi Timtam. Thank you for your reply. My progression was to many more bones, thankfully not organs. So basically since I was extensive from the start, now all the bones in my body have been affected. Yes I have been receiving Zometa infusions for bone strengthening every 3 months since 2018. My new treatment is Afinitor and Exemestane. Hope this answers your questions. Take care.
Yes. It answers all my questions and more. I am always worried that even on Zometa/Dunocumab, that bones could break.
And I often also think about what would happen if I got progression to more bones, (Mine are pretty extensive as it i too). so this does answer questions and I don’t feel so mad thinking such things.
Hey Timtam, hoping for positive news on your scans! Do the docs do any blood tests i.e., ctDNA to determine what may have changed? Especially if a new biopsy isn't readily available to take. I may also be close to the point of a change and see my doc next week. I am curious how they determine what to try next? --Trish
I am being cared for by the hospital very well. It’s jsut that I don’t retain much and forget or just plain don’t understand. But yes. I get blood tests all the time. Regularly religiously every four weeks I get full blood test done. Then I have a chat with my oncologist today after and she tells me what she thinks she has seen in the blood tests. I know that they don’t go fully by what is in your cancer markers, but they take into account, your general well-being, your pain and also what’s on the scans, and in the other bloods that they look at. I’m very lucky my oncologist do you say world-renowned researcher who has done a lot in the area of MBC. She gives papers all over the world and she’s just a delightful lovely person. And I’ve had her for five years so I’m very lucky. I feel I’m in good hands and I’ll just go with whatever she says thank you for your care.
So sorry to hear that change is coming - nothing is worse than that feeling when you hear those words for the first time! I was distraught….it’s fantastic you had such a long time on your first line though, hopefully new treatment lasts just as long!
It’s great your onc is on the ball - so encouraging for us all to feel that they care for us as individuals and we’re not just patient x
Hello from across the continents and oceans TimTam - I hope the reassuring words of my onco on telling me I had metastatic bc will ring true for you too - that when a treatment stops working they will just throw something else at it - and there’s lots to throw. That it’s a temporary obstacle to get around. The cdk drugs are amazing and lull us into thinking it’s all good but that damn cancer is just so sneaky. So I hope your next options are good and give you back your hope and enjoyment of life.
These include palbociclib (ibrance), ribociclib (kisqali) and abemaciclib. They stop the cancer cells growing and are often used with a hormone blocker - eg letrazole, fulvestrant and a bone strengthener (denosumab and calcium). Many people have been on these for many years which is encouraging. Evidence suggests they work best for a breast cancer that has recurred years later. Mine was de novo ie spinal mets almost from the start. You can see from my profile that I had a large pleomorphic lobular tumour in my left breast and way too many positive nodes chopped out in April 2021, and a small ductal one chopped out of the right side 18 mths earlier. Negligable and manageable side effects and am still very active 2.5 years later - table tennis, 7 mile walks, childcare, volunteering etc. You wouldn't know i had cancer from looking at me - except I do have more fatigue and have to pace myself. My other long term conditions (heart) are way more limiting.
nb it has to be hormone sensitive to have these drugs. Other b/c types eg her2, triple negative have different treatments. And there are loads of newer ones coming on stream.
I am so sorry to hear about what you are going through right now. I hope you get some answers from your scans and a good solution to whatever is going on. I'm happy that you have been able to get 5 years from the Ibrance and Letrozole. I am currently on 3 years and hope to get a few more. Please keep us posted as to what you learn and know that you are in our thoughts and prayers. Sending hugs.
I’m on the same treatment for two years. Loos as though I’m in the same boat. If nothing changes by next month my Dr is talking about immotherapy. Not happy about that. Best to you Hugs!
The Ibrance did the same to me. I was on it for 21/2 yrs.The pills are only suppose to work for 9 months but everyone is different . Has your cancer spread with latest Petscan? That would be a sign it's not working anymore. Talk to your oncologist.
Bertie. I haven’t had the scans yet. I only saw my oncologist a few days ago and she has ordered the scans. I have to wait a few weeks yet. So short answer is “I don’t know yet”
PS. I don’t think there is any “Supposed to” with Ibrance and Anastrozole or any other treatment. We are all so very different. Every when I started my treatment 5 years ago, my oncologist said she can never say how long someone will get on a treatment.
Before your scans ask your doc if an MRI of the brain might be better than a CT as an MRI is a bit better at showing mets. It is great that he is ordering it as it's not considered 'routine'. My doc ordered it when I complained and even though the tumor wasn't the cause of the headaches it found a tumor before it gave me paralysis I had a yber (radiation) surgery, they don't have to make any incision and it's getting rid of the tumor. It's possible the treatment isn't working anymore it's also just as possible it is. I always tell myself whatever it shows I have already been living with it, that helps me alot. Wishing you the best. Let us know how you do. ❤️🌺❤️
Totally agree with this and missed in Timtam's post that she was getting a CT of the brain. MRI is a much better diagnostic for brain mets. Thanks for bringing this to her attention.
Yes. That’s weird. I know this NPMary…… I have had an MRI before and I had a memory of these being way more accurate. Okay. I will ask her. Strange that she didn’t just order me one!!!!??????
And thanks for your wise words re: living with it already. Really… I am fine. I am not scared of dying. I am not scared of movement towards things not working. I just wanted to put it out there to all of you wonderful people here. And I will plod along as happily as I can in this strange and very unforgiving world.
Timtam, I resonate with and appreciate your attitude, I feel much the same and am grateful that I have had 6 years to reckon with 'Ars moriendi' (living while dying). I too am a passionate maker of things (don't think others would call it art, but it is my art). Thanks for sharing yourself and making it easier for me to do the same. 🌺
Oh NPmary. Don’t say that a bout your made things/Art/Creations. I am just so excited by the fact that I have enough energy still, (sometimes) to create. I am doing every single online art course I can afford or can fit in, and I’m running with it.
Tomorrow I deliver my first accepted artwork, into an art exhibition, here in Melbourne. I’m so excited. See pic. I have put a good price on it, and if it sells, it will be the icing on the cake. But I’m just happy enough to have had it accepted. Let alone to have come up with the idea don executing it as well.
I love that phrase Ars Moriende. Thank you for that little gift. I have a Death Doula coming to visit me this afternoon!!!! I am excited to be attempting to learn and to be doing this this well.
Yesss you are a talented artist😊. Is this medium water color , or acrylic ?😶. When you get time, think about selling prints of this original. Though this can sometimes decrease the value of the original, or push a purchaser to buy the prints instead of the original. Another option is to sell a limited edition of prints.🤓. This allows you to have a copy of your work. I use to sell silk screen prints of my art work on T-shirts years ago. I also use to give illustrations to family members, and friends. I am thinking to begin silk screening T-shirts, and prints of a design I started sketching several months ago. I find that creating art pieces is so personal, and cathartic . Keep up the great work Sister/Warrior.😇
the 1st time I took ibrance, it immediately put my neutrophils in the toilet. a year or so later when I started on it again, I did one month the prescribed way and then I read about the 5/2 schedule which in almost a year now has kept my neuts in the acceptable range. just throwing it out there. I also went on the 100 mg. because something else was wrong but I don't remember what DUH! sorry, I know I should keep notes but I can't be bothered. God bless you and heal us all in Jesus name, amen! PS my CA's have consistently dropped over the year and what started around 500-ish is now at 200, on both the CA 3-15 and 27-29. Hope this helps somehow!
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