I have been on Ibrance 125mg with Letrozole for over 4 years. My cell counts have been chronically low, but never low enough that my ONC was concerned enough to suggest lowering the dose of Ibrance.
I have seen/read on here so many of you didn't tolerate the 125mg of Ibrance and consequently had to lower your dose.
I'm just curious how low your cell counts were when a decision was made to lower the dose? My ANC recently dropped to 0.7 on day 4 of my "off" week of Ibrance. That's after 4 years of being around 1.5 to 1.8. Two days later it was rechecked and went up to 0.9. My ONC was not concerned enough to change my dose but said we could if I wanted to. I'm just curious about how low others ANC has dropped before your ONC suggested changes.
Thank for you support and sharing!
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Sister3nkc
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Hi, congrats on the 4 years, here's to many more to come.
I'm usually at around 1.1/1.2 but fell to 0.7 so my Onc stopped Ibrance. Neutrophils went back up to 1.9 so started again but she said if they go below 1 again we'll look at lowering it.
Josie
My neutrophils drop to 0.4 at the end of my week off Ibrance. Even with the dose at 75mg it still drops that low. I have to wait 3 weeks each cycle for them to get to 1.5
then maybe you could try the 5 on and 2 off; I swear by the 5th day I'm feeling it and ready for a break! they are doing a trial of that dose schedule right now that's supposed to be completed in 2020 I think it was ...
I, too, read that, if I remember correctly, ninety-percent of women started on 125 mg. have to get a dose reduction due to side effects, mainly low wbc. Maybe it was eighty-percent but it was a high number. So after 3 months on the letrozole and showing great improvement, I asked my onc if I could start ibrance at 100 mg. as I had read how so many got sick on 125 and he agreed to let me do that. Then I read that 75 mg. is just as effective as 100 so after 4 cycles I am dropping to the 75 mg. and I said I want to take the lowest dose that is effective. I said that it is a cyto-toxic drug, so why WOULDN'T I want to take the lowest dose? Anyway, for better or worse I'm going on 75 mg. in about a week as makes sense to me and my neuts never dropped below 1.5, as I decided MYSELF that anything below that was unacceptable as it IS MY BODY afterall, right? Hoping the blurry vision, headaches and minor chest pains go away. Not to be ugly, but being married to a brit, I go to the doctor WITH him because he lets the doctor bully him into anything whether he wants it or not! People I know in the UK, where a lot of you are from, are still cow-towing to doctors and you have to stop it. You are you own BEST ADVOCATE! Stand up for yourself and listen to your gut, because God will guide you in the path you should take, not man. Of course, that is MY opinion and if I'm wrong then I apologize. You can read too much and scare yourself, but knowledge is power and there is a lot of knowledge out there and we are navigating troubled waters. I thank God that I can read with understanding because I want to know all I can before I put ANY new drug in my body. What did I accomplish? Well, 1st of all I've had no interruption on ibrance by starting at 100 mg. and doing the 5/2 schedule, so continuity of treatment is a good thing. I realize without having the wonderful onc that I have, none of this would have been possible, so the doctor makes all the difference in the world and mine has been reading up on some of the things I've shared with him and thanks me for telling him what I've read. Secondly, I am not afraid when I'm informed, and fear is stressful. So I feel like I've been tooting my own horn, but that was never my intention. I was trying to relay my thought process as I'm at just the beginning of this stinking diagnosis. The bible says "My people perish for lack of knowledge", don't let that apply to you! God bless you and heal us all in Jesus name, amen! <3
of asking for the lower dose next week...if it’s as effective then my question is why are we on a dose that makes us feel rubbish?...my main problem is anaemia...I’m dragging myself around and not interested in doing anything active though I force myself but it takes away the enjoyment
Having said that...are the long termers on Ibrance mainly on the 125mg??
What I did was tell him I was thinking of stopping because of the blurry vision, headaches and mental fogginess if I couldn't drop to 75 mg. I'm also disgusted because it has ruined my taste buds. Two of my favorite things, sirloin steak and avocado now taste funny ...
Your headache will go away when u take 75 mg. I have horrible migraines with 125mg and I demanding to get 75mg. The doctor didnt like but then she said it was the right dose since my wbc were 2.2 in my 3rd week.
It is so complicated as I have to separate the side effects as to: what is age-related, what is letrozole related, what is diabetes related i.e. I had some blurred vision before from sugar fluctuating but it wasn't extreme and it happens now even when I haven't had sugar and have been behaving myself. Very complicated storm ... but I know the Keeper of the Stars, amen! <3 xo I love music so I am including this, plus I get to listen again as haven't heard in A LONG TIME! Have a blessed day/evening! This is dedicated to the one I love, my Phil! youtube.com/watch?v=Wngb5Mq...
I'm not on Ibrance but have a friend going on 3 years of it at 75mg. He (yes, he) is 80 and started at 125 but pretty quickly dropped to 100, then 75 to help with fatigue. Still doing well!
I too have been on this same combo since July 2015. Started out on 125 but am now on 75 mg dose. My ANC would drop below 1 so they continued to reduce the dose. I usually stay around 1.2-1.4 now. Let’s pray we continue to get more years off the Ibrance!
You've been in this drug combo almost as long as me! How long have you been on the 75mg dose with disease free progression? What caused you to lower your dosage? How low did your cell counts drop?
Thank you all for your replies. I guess it bothers me that my ANC dropped to 0.7 - lowest in 4+ years - and the oncologist didn't seem very concerned. That is a pretty low ANC! I asked her about Ibrance being just as effective on a lower dose. She agreed that was true. If it is going to be effective against your cancer it is not dose dependent. She said it was up to me, if I wanted to lower the dose we could. I like her. I feel we have a good relationship. I guess maybe she feels its ultimately up to me. It seems like she didn't feel it is necessary to lower thie dose. I am so tired all the time. RBCs are always low too. I feel the effects of this drug/disease. Im afraid to change the dose BECAUSE WHAT WE HAVE BEEN DOING IS WORKING! But i want to feel better if that is a realistic possibility. This is so confusing. I am right now leaning towards lowering the dose to the 100mg. Im still praying about this but I feel like the fact that this is weighing so heavily on my heart is also God's way of telling me i should consider this possibility.
It is ALL in God's hands. No one knows what is going to work/not work on ANY patient. Doctor's can only go off of statistics from scientifically proven data. But those are just numbers, we never know where we will fall on those numbers scale. It is in God's hands alone.
amen and I'm so glad it IS all in the Father's hands because when I become the one in charge boy can I create a MESS! God bless you and heal us all in Jesus name, amen!
I understand exactly how you feel , wanting to feel as well as possible but fear change . Maybe monitor it closely for another couple of months and then if ancs are still too low then go for the dose reduction . x
Continued— bone marrow was not compromised and my wbc and rbc are normal. I get infusions every 3 months for my bones. My Mets in my ribs and spine have turned to scar tissue and are no longer active.
I have MBC in my stomach and rectum. I have Pet scans every 3 or 4 months. Having one on Tuesday.
For the letrozole it is a generic drug. It is made in India by ?? and Israel by Teva. I switched to the Teva brand and have less side effects such as tiredness. Generic drugs can have different delivery systems, so by find out where this drug is made and you may want to make a change.
Also the Ibrance needs to be kept at a certain temperature. If your meds come from ups or other delivery type services, and are not in a temperature controled container, the temperature inside the truck can get up to 140 degrees or more. I am in the fulfillment business. Just ask google how hot it can get in the truck.
I just had my Ibrance replaced by my specialty pharmacy as it came in a plastic envelope. Pfizer said that once they deliver to the pharmacy they are not responsible.
Sorry for my long response but I wish all of you well. Thanks again Reenie
This is very very helpful. Thank you very much. Are your cell counts not altered at all by the Ibrance? I don't want to overreact but if I can feel better on the lower dose and it is still just as effective then why wouldn't I change? I guess the scarey part is that this is such a relatively new drug and there is not that much data out there on the lower dosage to help guide your decisions.
Tuesday I am scheduled for a vitamin B injection and they will be drawing blood to recheck values. Im going to at least wait until then and see what is going on.
I am very similar to yourself , Sandra , with tolerating the 125 dose for 21 months without any changes and always having had labs/ bloods in the normal range and healthy blood pressure . I was even told at my last appointment that I am as healthy as can be... with cancer... yet I don’t do anything different ...(so far I have taken no supplements and no special diet , no juicing ... tho’ I have been vegetarian for 35 years and eat a little dairy . (maybe that has helped ?) But as to what makes a healthy bone marrow ... I’ve no idea , just know I have been fortunate so far ...yet I realise that could change at any time ... And I too would love to consider a dose reduction if there is a chance my bone marrow will stay healthier for longer , but my onc is in agreement with yours that studies to date are too small scale to be relied on ... so let’s hope for more studies , and soon ! My oncs view is why change anything when everything is in balance !
I wish for everyone on this board to get continued good results until something even better comes along ! x
Coincidently , I saw the nurse practitioner this last time ( as there is a post here on the subject ) and although I would prefer to see the same person for continuity , she was knowledgeable / helpful . My husband did think it was because I’ve been stable after 3 CT scans and currently have no issues ( other than occasional mild sciatica after long walks etc ) . She also said ‘if it wasn’t for the ct scan , you wouldn’t know I had cancer ... ! ‘ so I came out happy !
I will be starting a prescription calcium/ vit D supplement once I start a tablet form of bisphosphonate , but I was told it was more preventative , since my bone mets have healed and I have no bone pain .
I do keep meaning to introduce some healthier habits , but enjoy my loaded ice creams , dark chocolate ( but only like a 72% one!) and daily ginger biscuit treats , lower sugar gluten free ones ..a healthier version is my excuse ! And I still have a slice of homemade cake , or a salted caramel muffin at the costa cafe in my local hospital after my monthly bloods !! But I would like to lose a few extra pounds , so need to switch to healthier alternatives and will take some ideas off this board . X
I'm so pleased for you. You must be really happy with how your appointment went. I have also been told the same as you that to look at me it isn't obvious I have cancer and that it it wasn't for the test results they wouldn't know.
I must admit I'm not a fan of dark chocolate, but like you I find homemade cakes hard to resist. I'll probably have a tough time tomorrow as I've co-organised a party for a friend. So we'll see!
I'll tell you what helped me and that was making healthier alternatives to what I like such as raw vegan brownies, ferrero rocher, soft serve ice cream, and smoothies. If you like truffles, you might like bliss balls. There is so much out there to try that is healthier, and actually tastes better than the full-fat version. Plus, you know what's actually in it without trying to get your tongue around some of the ingredients.
My fav dark chocolate (which isn’t bitter like most dark chocolate) is Godiva 72% Belgium chocolate (I buy it in Sainsbury’s) and it’s really smooth ...and I buy Nairn’s Scottish gluten free biscuit breaks with 40 % less sugar .. oats and stem ginger is my fav ,and a great dunking biscuit ! ... and they have a good range to choose from ( I buy in Morrisons in mini packs of 4 )... but I do like the sound of your homemade bliss balls ! Wish I was at your tea party ! Enjoy! x 🧁 🍰 ☕️
I have question, what does it mean bone mets have healed? Does that mean they are gone? I have asked my onc she just says they healed. No explanation really, does anyone know?
Probably means no evidence of active disease but there may be scarring. I had mets to lung, i have no evidence of active disease but i have scarring that shows on the scans, where the tumors once were.
That sounds like the Cardiothoracic surgeon who diagnosed the mets to my lung. He told me "Stage IV is uncurable. You will always be in treatment for the rest of your life". I thought that was a "soft" way of saying you are terminally ill, we can not cure you. However, that was 4.5 years ago and I'm still going strong! I also had another doctor tell me "you are terminal." Some of the things people say, I dont think they can understand what it is like to hear those words when it is about YOU.......Im thankful for good healthcare providers, just have to remind yourself from time to time they are after all, only human too.
I think it is ‘layman’s’ terms that there is no evidence of any active disease where the bone mets were and they appear sealed over on the scans . I have had 3 CT scans over the last year that show this now . ‘Stable appearances ‘ is probably the term normally used by radiologists , when they are comparing one scan from another ...they don’t use the term NED ( no evidence of active disease ) on their confidential radiology reports .‘Sclerotic transformation of known bone lesions and no other sites of metastatic disease ‘ was on my first report after several months of ibrance /Letrozole treatment and “stable appearances” which is probably the best you can hope for , on the next . x
Thank you all for your responses. I really appreciate it guess I am like everyone else I want real answers where there really aren't any. I just love all advice and tips from everyone on this site.
That’s settled it...I will persevere with the 100mg dose...I just assumed from this board that lowering the dose was just as effective...I understand now that the low dose group being so small then that’s not enough evidence to just change the dose on a whim...I’ll just have to have more iron infusions
Barb xx
Hi Sister - My ANC is generally between .5 and .8 on my off-week; obviously higher during on weeks. I've been on 125 for almost 5 years without issue...
Thanks for sharing that information! Sorry your counts are that low but it is good to hear of someone else out there in such a similar situation! Sounds like you started Ibrance at the same time I did!
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