Off Ibrance for now!

[Clair19]

My first round of Ibrance brought my wbc 1.6. and I have been off for a week. Wow strong stuff. Has this happened to anyone else.? I’m scared my tumors will grow, I hope I’m not overreacting. What else can I go on if I can’t take it? Thanks

[Jerseygirl45]

I was in Ibrance 125mg my first month. My wbc went down to 1.2 I had to stop Ibrance for 1 month. WBC went up to 4.5 then I went on Ibrance 100mg. My wbc goes between 2.6 and 3.6 been on it 16 months. So they will probably give you a lower dose when wbc comes up.

[Bluebird77]

Hi, Clair. What dosage of Ibrance are you on? This hasn't happened to me, but I have heard of women who had their dosage reduced to 100mg or even 75mg and were able to tolerate Ibrance and do well. I have also heard of women who just had to delay the next cycle for a week like you are, and then were able to continue as usual. Try not to worry...I know it's very hard but maybe talking to your oncologist about what the next steps would be would ease your mind. You're not overreacting! We all go through these fears!

[BeckyHobson]

What dose were you on? Mine tanked on the 125mg originally but then he reduced it to 100mg. My white count has not been over 2.0 in 2 years this month on Ibrance. I’m a germaphobe but don’t let it stop me from doing much. My doc watches my neutrophils mostly to make sure they stay over .75

They hang out at about .86 lol

I have gotten sick 2x over the past 2 years with nasty bronchial colds/infections but good news is that I lived and simply took a Zpac of antibiotics each time.

Hoping you oncologist will reduce the dosage for you so you can continue to take it.

[Clair19 in reply to BeckyHobson]

Wow that’s low, I guess mine is not so bad. It has been around 5 .0 before Ibrance. He does not seem to be concerned, I’m trying not to freak. I’m a freaker outer.😄.Thanks for responding, makes me feel better.

[Clair19 in reply to BeckyHobson]

I’m on 100mg.

[blms]

Keep in mind ladies, the neutrophils and hemoglobin are the important markers. Your white cell count is of mature white cells but the neutrophils are the baby white cells being produced in your bone marrow, they then go into the blood and become your white count as we know it as they mature. Sooo, if we are not properly producing the baby cells in the marrow, they can never do that. This is why the neutrophil count is what is of major concern. The hemoglobin count is your storage of red cells and they carry oxygen to your cells. So, if you are going to worry about any of your blood counts, look at those. Normal neutophils begin at 1.7, so hopefully after your off week, you can get up close to that. My oncologist tells me to take my dosage if Im over 1200. I am not sure how crazy I am about that.

[Clair19 in reply to blms]

Yeah my neutrophils is 500, my rbc is usually ok. I’m off 3 weeks, I was already on my week off. So when I go back in 2 weeks I’ll know what he wants to do. Maybe 100mg to much at my size. I’m 123 at 5ft2. I just want to get on something and stay on it. At least I will have some relief from bone pain for 3 weeks. I’m not feeling as down today. Thanks for explaining that.

[Clair19 in reply to blms]

I also have Mets to spine, so that is why my back hurts. He’s not wanting me to take much pain medicine. So I take only 2ml twice daily of Morphine. It helps some. I try not to take it if I really don’t need it. Yeah 1200 is not high, however higher than 500. 😄. Good luck and keep me posted.

[Sebina in reply to Clair19]

cannabis oil for pain!

[Caboosemg in reply to Clair19]

I think that it's ridiculous and unacceptable for you to be in pain. I have bone Mets in my spine and the pain is very real and persistent. I take 15 mg ER morphine 2X a day. I pay a very high price if I miss a dose and it's hard to catch up if you're behind the pain. I was concerned with dependency and my doc told me that as long as I have genuine pain, the drug goes to that pain as opposed to the brain area that creates addiction. Do yourself a favor and get the pain meds, or maybe get a new doc that doesn't want you to be in pain. Do what you need to do to have some decent quality to your life. Good luck Sweetie!

[Hidden in reply to blms]

I am just on my second month of Ibrance and Letrozole. I had to wait 3 weeks after my first mo Th as my neutrophils were 0.3. It took the 3 weeks to get them up to one. I’m now worried it will be the same his month. I have Stage 4 Breast Cancer that has metastasized to my bones.

[Clair19 in reply to Hidden]

I’m sorry about that. I think when it’s in bones mine spine area it will do this until we get use to it. I know there are newer ones less mg now, like me gets upsetting. I also have rt lung Mets. I’m feeling better since off all the stuff for almost 3 weeks. Go back Thursday to see Dr. and get blood work. I hope your Neutrophils stay up. Good luck to you.

[Clair19 in reply to Hidden]

Yeah it’s a pain to stop taking something that is saving your life. I have been off 3 weeks now, Dr. Thursday. I’m breathing better and does not hurt so bad at night. Do you know the first couple of months are the worse due to your body getting better it gets worse sometimes before better. You will be fine and Neutrophils will come up. This disease is like it plays games with our mind and body. I don’t know which is worse sometimes. Please keep your positive vibes going. I will pray for you as I try for everyone going through this. Keep me posted as we are in this together. Thanks 🙏

[Petreep]

Good to hear all of this because I start on Ivrance next week.

[Hidden]

Hi Clair19...I have to admit up front that I am -- based on no science that I know of -- an advocate of "more is better" re: Ibrance. It's kept me progression free for 36 months and counting. I've been on 125mg the entire time and at a couple of points my docs would say "Maybe we should reduce your dosage" and I would reply "No! Wait! Give me a month to get them back up!!", with no concrete plan in mind except extra rest and Trader Joe's carrot juice (my superstition/superhero). I just checked my history on labs, and my WBC hit 1.6 in January of 2017. Since then they've fluctuated between 2.2 (current) and 4.0. With no change in dosage and no break. So my uninformed opinion is to sometimes wait it out rather than reduce the meds. That, plus TJ's carrot juice, of course! Best wishes to you...Lynn

[Clair19 in reply to Hidden]

Hey, it’s mostly my Neutrophils count at 500. Normal range 1.500-8-000. That’s what producers your matured wbc. I had been staying between 4 and 5 even with strong IV Chemo go figure. Ibrance just might not be for me if my life could be in danger. What I don’t get is I cut myself and even tick bite cleared right up. What works for some might not work for me. I did notice headaches and nausea really bad. Wow 2.2 is low, ask about your absolute Neutrophils count. I hope you stay positive and healthy. I just follow what he says, he’s one of the best in Atlanta. Hey I know this is no cake walk but I’m trying to just go day by day. Good luck.

[Lamho1 in reply to Hidden]

Congrats! 36 mo. On Ibrance is amazing. Are you ned? In remission? On month 20 I was told I'm in remission. On mo. 23 I get an Ibrance vacation for 1 month to see if a bad rash/extreme fatigue clears

[blms]

The problem is the 500 neutrophil count. That is borderline dangerous. Therefore your doc saying you are off a few weeks! Essential! I am same weight and height as you. 120 and 5.3. I wonder the same about dosage but doc doesn’t seem to think it matters

[Clair19 in reply to blms]

Yeah I know, that’s the first question I asked. I think they hate I’m a Nurse because I ask every single question. I will speak my mind, what do I have to lose. I have 4 sister in laws and all range from Phlebotomist to Nurse Practioner. Thanks for responding, you keep in touch. Thanks.Leslie Clair

[blms in reply to Clair19]

Haha!! I’m in the same boat!! I’m convinced the young onc nurse finds me irritating!! Like I care! I’m going to do what I think is best after consulting with my doc- who has been practicing only breast cancer for 44 years. Still I don’t vompletely follow the protocol .

[PJBinMI]

THe other thing to keep in mind is that you are undoubtedly on something besides the Ibrance for the cancer and those of us who have been in treatment for several years didn't have Ibrance or other targeted drugs as options when we started, yet we are here, alive and hanging in here! I am a 14 year survivor, didn't tolerate Ibrance at all well, and have not been on more than one hormonal drug at a time, yet here I am.

[Mcap]

I was told yesterday I will be off ibrance for a second week. Neutrophils at .4. Same thing happened last month. The second week off brought my numbers up to 1.9 so they allowed me to go back on the 125 milligram. But this time my doctor said if my numbers come up next week she's putting me on 100 mg. My worry is that it won't be a high enough dosage to kill the cancer. I'm so disappointed and worried. My natural path doctor wanted me to start on turkey tail and I've been dragging my feet. But with this latest drop in my numbers I figure I should do all I can to keep my immune system in shape. From my understanding the turkey tail won't bring the neutrophil numbers up but it will keep the immune system healthy. I will have my first scan next Tuesday. Not expecting much from that. Seems like everytime I go to the doctor it's just bad news.

[Clair19 in reply to Mcap]

I’m sorry about your blood work. I know exactly how you feel with being off almost 3 weeks. I’m on 100mg, and was only taking for 21 days. At this point the ups and downs are very upsetting. I have been trying just not to worry as it does not one thing at this point. Your Neutrophils are lower than mine but I noticed I still heal. My vacuum fell over cutting my hand, well with all my bad wbc and Neutrophils counts I healed right up. Sometimes I wonder if some people just have low counts. I know mine healthy run higher but I think they want to cover there self’s too. I think if you get them up over.6 you should continue. I hate scan time too. Please let me know about scan, I will pray for you!!! This is the hardest thing but together we will continue on. Just have a good cry 😢 like I did and see if it helps. I had one at the Pharmacy, and did not care, I felt better. Good luck 👍!

[Mcap]

Thanks Clair, I keep telling myself not to get upset about taking a lower dose because whats the alternative, not taking ibrance at all. I just need some good news for a change. I did speak to a pharmacist and she tried to explain that the dosage is also dependent on how your body metabolizes the medication. How your kidneys get rid of it. My oncologist had told me that there's just too much of it in my system. Good luck on your next blood draw.

[Lamho1]

My counts got as low as .9 which was scary & I took 2 week break which brought counts back up & I resumed taking Ibrance. Now on break for 1 mo. After 23 mo of Ibrance/Letrozole. I'm in remission....Stage 4 mbc

[kduck]

Hello Clair, haven't heard from you in awhile. How are you? Are you still doing falsodex shots only?