Just finished my first 3 weeks of Ibrance and the off week, but I can’t start my next cycle because my white blood cells are too low. I feel like I’m sliding backwards and so tired again because my red cells are low too and probably looking at another transfusion next week. Anyone else go through this? So frustrating.
Ibrance : Just finished my first... - SHARE Metastatic ...
Ibrance
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Nocillo
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Sorry to hear this but that is quite common to n the beginning. I had several cycles of low neutrophils ans having to delay start... then they dropped the dose to 100mg snd things evened out. Hang in there!
Thank you!
Same here, started at 125mg, counts too low, delayed restarting and changed to 100mg. Has been ok since then..,
Same here! OK on 100 mg
Good morning, are you on the higher dose 125mg? I had the same as you when I started so they lowered the dosage to 100mg. It was ok for a while but had to drop to 75mg I've now been on Ibrance for almost 4 years. I have 2 weeks off instead of a week to let my blood cells recover. Hope this helps and good luck xx
How frustrating for you. Hang on in there and things should get sorted for you. Like the others have said, you can have a lower dose or spread the on/off times of taking it. You should then get your energy levels up.Happy Easter
Clare
Nocillo• in reply to
Thanks and Happy Easter to you!
I've been on 125 Ibrance since late September. Maybe half the time I have needed to wait before I resume. Fortunately for me, despite my red and white counts, I have never needed a transfusion and I do not experience the kind of fatigue that many women cite. (I am also on Letrozole and Zometa.)
Just last week... I asked my oncology pharmacist about my neutrophils, which are often right on the cusp of being okay with regard to continuing Ibrance. Example: Had my labs done this past Wednesday and my neutrophils were at .93. I have to get to a "1" in order to continue, so I didn't get to restart my meds yesterday. Although, I will say that, since I had a CT and infusion this past Friday... I BET if they did my labs that day I would have been at 1. So, in my case, I think the pharmacist put off my start date because he wouldn't get the lab results prior to the weekend. ARRGH.
Anyway, I'll do my labs again on Tuesday, when I have my quarterly bone scan. CT report came in this morning, and as far as I can tell... looks like it is very positive and the second scans to show no progression. That said, I specifically asked the pharmacist about whether we should be looking at reducing my Ibrance dosage. He said I am fine. He said, if my neutrophils were lower than they keep showing (if I don't hit the magical "1", they are generally .89 to .93), we'd need to look at this. He said... if they were around .50.
Sorry you have this other stuff to contend with, Nocillo. I, too, have low red blood cell counts, and finally pushed my oncologist to test me for things associated with anemia. They all came back fine. Even with B12, I do not have what she called a "true" deficiency (based on an additional test she ordered after the B12). I have started taking supplements, about a month ago. Yadda, yadda, yadda.
My story doesn't help you much, I know. Just saying that I have done really well on Ibrance despite the blood cell counts that worry me more than my medical team.
Cos
xo
Thank you. Your story does help me. My doctor never mentions supplements or B12 or anything. Meanwhile, my mind spins with the negative. I try to stay positive but the waiting for results and feeling bad takes over sometimes. I appreciate you taking the time.
My oncologist (who is my second one) has missed a lot, too. After I got no follow-up after my last scans on 1/8... I demanded to speak with her...more than 2 months after my last CT/bone scan. (This was not her fault, but Kaiser's.) Anyway, I had a 5-page typed list of all my questions. I brought up my blood counts and asked what, if anything, we/I can do to lift them up a bit. My low red counts suggest anemia, and she agreed. So, she had me tested for B12 (which I specifically asked for), thyroid, and iron/foliates. I am supposedly fine on all of these, although the B12 came back as deficient on the B12 test itself. She did a second test that I never heard of before, which eliminated my need for B12 replacement therapy (injections)... but I started on over-the-counter B12 anyway. Also, they dropped the ball on my Vitamin D, where they never renewed my prescription. (And I had never been on calcium.) So... I am now on Vitamin D, calcium, and some over-the-counter stuff she said was fine (turmeric, omega-3, and biotin for my finicky hair/eyebrows).
I have more recently found out that Vitamin D affects more than just bone health/strength---which is important for me, with bone mets. (At sufficiently elevated levels, it even reduces risk of COVID infection/hospitalization/potential death.) All of this I found out through my own research. Needless to say, I am upping my Vitamin D now... even beyond the prescription my oncologist just gave me, which I suspect will only get me to the 30-35 mark. I am not looking at just getting to "sufficient" with my levels. To my understanding, it has a lot of important properties, and even factors in with inhibiting bone metastasis growth. I do need to ask my oncologist about this, since I am not one to self-medicate without passing the idea by a doctor. But from what I am reading, I would do best if I can get my Vitamin D levels to around 50. I was at 11 when I finally got her to test me again about a month ago.
I also started medicinal cannabis about 3 months ago. Point being, I am looking at all the things that can boost my health. All of this... I needed to find out on my own. Happy to share what I have learned with others on this site!
In the meantime, I am here for you. Hang in there.
Cos
They specifically told me not to take turmeric with Ibrance. Interesting. I like to try and research as much as possible too. Probably to the dismay of my doctor! After 6 years of bone mets, the cancer has now shown up in my stomach lining. Fairly rare, lucky me. It’s been quite the winter for sure. Happy spring is here!
I specifically asked before taking it. She had no problem with me moving ahead on it. I was hoping it might help with joint pain, although I have not taken it as religiously as I do other things... and the cannabis products have (I believe) helped with the pain. For me, it doesn't get rid of pain on the spot. It has been cumulative. But it does help me somewhat with sleep, and definitely takes the edge off of anxiety I feel about pending scans, etc.
Amen to Spring!!! I feel better just with the change in season/sun... and warmth.
Hi! I love how you are taking charge of your future and looking into ways to help yourself. It’s too easy to fall to the back burner with the caseload these oncologists have. I too started to research supplements to help myself...berberine, turmeric and resveratrol are common supplements used by cancer patients. The troubles with red and white blood counts is frequent issue among IBrance users ...but I also realized that I was being tested several days short of the full 7 day off period...I was having labs on my 4th day off. No wonder I was always low. I’m requesting labs closer to the end of the 7 days...Made a difference!
The point being you have to be proactive, ask, reason, question, request what you feel is right for you. 😍🥰
On top of doing labs too soon, I need my meds mailed to me. They weren't even ordering my meds until my counts were in the safe zone. So, that meant an extra week off turned into two. We finally started doing my labs 5 days after I stopped Ibrance (at 21 days), which may still be too soon. (Or, at least, it was this time through. Last two months I was fine at 5 days afterward.) As I mentioned, I had labs done on Wed and had appointments already scheduled for Friday. I am convinced that I would have been at "1" by Friday, and able to continue as usual for my Saturday start-date for Ibrance.
I learned early on not to just accept what was being done or not being done as right. Case in point, my first oncologist had every intention of treating my de novo stage IV cancer as she would stage 2 or 3. We got my PET back only days before I was slotted to start chemo, and she went ahead with it despite suspected bone metastasis. My gut/intuition started screaming at me when my so-called treatment plan seemed to be changing on a dime... and when she asked ME when my surgery/full if not double mastectomy was scheduled for. I said, "you tell ME!" Anyhow, when she told me she wasn't God and for me to stop thinking about the future.... I knew it was time to get a second consult/oncologist. Now I see how inappropriate her care of my cancer was. Thank GOD I listened to my gut. And, now... I question EVERYTHING. I even challenged my current oncologist about my prognosis/lifespan. When I first consulted with her, she put in my clinical note what she said to me. (Yes, I ordered a full copy of my medical record.) She said in the notes that she told me that women with HR+/HER- can live for "several" years quite well. Back then, I thought I had 2-3 years to live. I told her a month ago that I (most likely) will live longer than that... based on my research, the OLD stats online, and my good response to both chemo and hormonal treatment. She didn't disagree with me this time. And, while she did push back when I talked about a cure... I reiterated that I was quite well aware that there is no cure TODAY. But, I have every confidence that one is soon to be found, and I just have to stick around long enough to benefit from it.
Like you, Dragonfly, I learned that we absolutely MUST advocate for ourselves. Too much is at stake to just assume they got everything covered. They don't. At least, not in my experience. All more the reason why I will be switching my care to Hopkins at first opportunity (insurance-wise). Until then (which is either going to be in November or, because of a job offer, being able to switch ACA coverage sooner), I need to do whatever I need to do to best protect my health. And, my biggest advice to anyone who is new to cancer treatment and MBC... is to do the same.
xoxo
Good for you, Mary! It’s horrifying to hear that there are so many doctors who are just pushing pens and not truly thinking about their paths. So glad you took the initiative and are doing well. And I hate that anyone would tell a patient about lifespan...those statistics just include too many people who are not even receiving appropriate care. My daughter in law helped me accept that statistics can be meaningless unless numbers are disaggregated. So here we are...fighting the good fight. Continue to stay well🥰
Not to mention that the stats are old. When I was first diagnosed, I was convinced I only had 2-3 years to live. (Even after switching to my current oncologist.) Then, as I was starting hormonal treatment, I started learning more about it all. My eyes opened when I attended a free NYC Metastatic Breast Conference online. Whole first day was on research, etc., and... they referred to patient cases throughout the day. With one, the oncologist referred to it as the most complex case he had ever seen, and that, after six years... and I went, WAIT... what? Six years? Was the very first time I found ANYTHING that mentioned people living more than 5. Then I started spending time on this forum, and the rest is history. I may be a newbie, but I have learned an awful lot. And, I happen to think I will be around a while. This is not based on wishful thinking or even a case of denial. I have a lot of things going for me. And, I, for one, am really angered to think that my so-called medical team ever robbed me of hope and made me think that making it 5 years should make me happy... or that this would be the best I can hope for.
Even for something like NED or NEAD. I keep mentioning it to my oncologist and she said (a month ago) that is not common. Well, I see it every damn day on this forum and multiple Facebook groups that a woman either reaches or stays at this status. And I spoke with a volunteer from Living Beyond Breast Cancer who had extensive bone mets (like me) and has been NEAD for 4 or 5 years. So, I have decided I am gonna be like THEM. 😊
Gosh it’s so good to read your words. As you know it’s too easy to feel depressed and hopeless especially if pain levels suddenly rise ( is it the cancer or was I overly active?) or if one is expecting scans coming up. A friend told me her cousin was living 15 years with mbc...so that’s a remarkable achievement considering many of our lifesaving meds are new... 2015 for Ibrance. Hah,I was planning my funeral just last summer but your feisty words as well as from others on this blog make me realize that I must focus on living and enjoying. This damn pandemic is such a downer, but again, it’s all about attitude and self care 🥰 cheers!
The pandemic certainly has been a challenge to say the least! If it’s not one thing it’s another! Please focus on living in the moment, hard to do with pain, but you’re right, they are making great strides in cancer care. Now let’s get the cure!!!
Good for you Mary! Sign me up!
We must be our own advocates, that is for sure. My first oncologist was very positive, he told me not to spend all of my retirement money because I would be around for a while. That was very encouraging. He had 40 years of experience and lived to serve. We moved at retirement to be near our daughter and my new oncologist is not as positive. She’s not negative either. It’s just a very different dynamic and I feel I need to question more and research more. Anyway, I appreciate all of everyone’s input. It’s reassuring to hear different situations of the same issues.
Yeah, I am job searching (for national non-profit Executive Director positions) as we speak. Still holding out for an opportunity with a retirement plan (and I am 56). Six months ago, I was sure that my retirement years had become a non-issue. Not anymore!
❤️
Wow! Good luck to you. If you can work and go through this, I applaud you.
As it stands right now, I am fully capable of working full-time. (I feel really great, and my side effects are minimal. Generally, no fatigue either.) Have an interview on Wednesday with a cancer organization focused on finding a cure for terminal cancer(s) with a primary emphasis on glioblastoma. If I am going to obsess about cancer, seems the right time to make it my income-producing profession, too!
Biggest point about this organization is... their belief, and mine... that... if we can unlock the key to making one, really difficult/terminal cancer fully treatable (and even curable)... it can potentially impact other types of cancer as well. Basically, precision medicine -- of which I am a major fan.
Good luck, tomorrow, wth your interview. It sounds a if it is a natural fit.
Thanks!!!!
Good luck! There is a reason why we are where we are!
I agree with you. Hopefully it is now 'time'. Have been looking for a while!
Mary, go get em! You would be perfect for that job with your enthusiasm for cure!
Thanks, Beth! Just finished the first (screening) interview with the search consultant. I rocked the interview, if I do say so myself!! 😁 Will find out by Sunday or Monday if I am advancing to the next round of interviews.
Good luck! I hope you get it. Carpe the damn Diem!
Amen!! They had over 1,000 applicants. I cracked the top 20 so far.
Any news on the job front?
They never got back to me after my interview! How RUDE! lol Anyway, I keep pushing along. Had a first interview with another group (a rare disease community) last week, and I have my eye on some new opportunities I plan to apply to today.
Thanks so much for asking, Nocillo! I've been looking for a long time and I will be SOOOO happy when interviewing for positions is done for good. Meaning, I hope my next stop will be my permanent non-profit home. (And interviewing is for the birds!) Now the trick is finding that place of belonging! I believe it will happen then the timing is right. Has been a lesson in patience and persistence, that is for sure.
xo
Thanks for the update. Yes, it is rude!!! To leave someone hanging like that when a simple phone call would resolve everything. Good luck and I hope it happens soon! Interviewing is awful!!
I would have been fine with an email! But, seriously, if you don't have even that much decency, I dodged a bullet by not advancing in that interview process. As for interviewing in general, what a terrible way to select a preferred candidate. There is absolutely no way to provide detailed answers to anything if you are only giving me 30-60 minutes... to describe my multifaceted work since the mid 80's (which is directly relevant to Executive Director jobs). I have definitely discovered that most people are poor interviewers... and I often think in my head... did you even READ my cover letter and resume (which is 5 pages)?
Yes, you’re a young woman still! Good for you!
We'll see how it feels once I start a full-time job! I am someone who is energized by my work (i.e., purpose), so, hopefully I can keep up okay. Have a feeling I will be fine, at least for now. 😊
Hi, can you tell me what brands you use of barbering and resveratrol? I cook with fresh tumeric and garlic daily. Thank you so much.
Hi...I use Berberine by Herbal Secrets. And the resveratrol is a mix of other important supplements that include queries in and green tea. It’s from immersion Health. All from Amazon. Hope this helps!
I will have my ct/ bone scan on Tuesday also . Good luck❤️
I had my scans the first week in April. No progression! Next scans are scheduled for the beginning of July.
Let us know about your scan results, Anitafazz! I take it you mean they are next week, right? (This is an older post, obviously!)
I didn’t be even see that 🤣. Yes my scans are on tue next week . Praying for good news .
Glad you had good news . So far my scans have all been good . On my way to a camping weekend to take my mind of next week ❤️
Someone else asked about my job search as a follow-up today, so maybe that made this post come up again! Regardless, it is good you chimed in about your pending scans! (There is a reason for everything!)
A camping trip sounds like a GREAT way to counter/reduce anxiety (and too much thinking) about pending scans! Hope you have a wonderful time! And, don't forget the sunscreen!
xoxo
I am so greatful for these posts. I have mets to bone. Diagnosed December 2020. I am on ibrance 100 mg and letrazole. Xgeva was every month. Now going every 3 months. My pet scan showed " markedly improvement in extensive bone metastasis" and "resolution of uptake in right adrenal ". So yay for this good news. I àlso was planning for the end. But now have alot of positive feeling for living more than 5 years. Hoping for 15! Or 20! And hoping for a cure way before that. I also question my oncologist. He is positive but sometimes I feel he is on automatic and maybe doesnt get deep enough when I even question. Vitamins, blood values at right time etc. I decided when first diagnosed to seek out additional help at ohio state. So glad I did. He takes extra time with explanation and future medical issues and drugs. I meet with him every 3 months. I'm following my gut and so glad it speaks in loud voice. I am going to ask him about vitamins for immunity boost, lab values and my latest pet scan. Wonderful weather finally!! Helps with mood. I also have tried marijuana in edibles it helps with break through pain. I'm on a low dose fentanyl patch. Best thing I have done for pain as it doesn't make me feel weird or act on my gut so horrendously. My best wishes to you all.
Hi Tazi127– are you in Ohio ? I noticed you mentioned Ohio State— which is where I get my treatment. Just wanted to say Hi!
Yes!! I live in Dayton.
I live in Granville!
I’m from Pittsburgh .. not far ♥️
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