I am upbeat most days, but I need to know if anyone else feels like the drugs meant to help with this disease will end up killing them. I can’t get my neutrophils stable even on the lowest dose of Ibrance. I’ve been on my second round, after a three-week break, for two weeks, and neutrophils are back down to .88. I keep thinking an infection is going to get me first.
Thank you,
Hi there
My neutrophils are usually just over 1.0 which apparently is ok!!
Been really feeling awful for a week...seems I have a UTI... my fault for not seeing the signs and going to my GP sooner
I think as long as we are vigilant and don’t become complacent about signs of infections then should be fine....I’ve been on Ibrance and letrazole for 14 months and have had 2 UTIs but nothing else like colds flu etc
Difficult one isn’t it
All the best
Barb xx
Hi, Barbteeth!
I'm prone to UTIs, and they are the worst thing in the world. I know exactly when it happens because I start to sting right away. They cause me horrendous pain. I have to say I've been very fortunate over the last year and have not had any, so I don't want to start now. I don't think the doctor is going to let me stay on Ibrance because they say they have to be over 1.0. It took three weeks this last time for them to finally raise back up. I should ask, do you ever wear a mask out in public? I really don't want to, but I'm thinking I'm not going to have a choice here soon.
I don’t wear a mask in public...waste of time...especially the paper ones which are effective for about ten minutes
I let my uti go too long...stupid of me...I don’t get that stinging symptom but cramps and pain when I sit down...sort of pressure on my bladder..horrid
Barb xx
Barb, I just wanted to share a recent UTI experience. I very rarely get them, and when I do it seems to follow having more sugar than usual in my diet. A few weeks ago (summer = ice cream...more fruits....a birthday cupcake...) it came on suddenly with burning and even a little blood in my urine. I always have a small bottle of unsweetened cranberry juice concentrate on hand so I diluted about 1/8 cup with some water and drank it with a few 1,000 mg Vitamin C tablets. The symptoms were gone within two hours and never developed into a full-blown UTI. I had a milder cranberry juice cocktail daily for a few days after that but have been fine since. They also sell cranberry concentrate capsules that I always travel with. Hope you are feeling better soon!
Hi KMBL,
I too battle bouts of this as well. Creeps up on you. Fine for a couple of weeks then lose it. My neutrophils were always low too. Dropped to 100mg then they were going to drop it again to 75 if my levels didn't go up. 2 months ago I started a high dose of liposomal vitamin c...6000 mg and guess what...my neutrophils were 2.6 last time!! I had never been that high since starting Ibrance and had normally dipped to 1 or below and had to take extra time off. Not sure if it was a fluke. I will find out on the 27th with next blood tests (scan results too). May not work for everyone and like I said maybe a fluke for me but will let you know! Hugs to you in your journey.
Aimee95, how did you know to take the vitamin C? Did your doctor tell you to try it? That’s awesome. I hope they’re still up on your visit. Can you let me know the brand? Thank you.
I had read up on it and thought it was worth a shot. I asked my specialty pharmacy if there was any drug interaction with the ibrance or letrozole and there are none. So for me I decided to give it a try. I ordered it off Amazon-NutriFlair Liposomal Vitamin C 1400mg, 180 Capsules - High Absorption, Fat Soluble VIT C. It's 19.99 for 180 pills.
Okay. Thank you so much.
I couldn’t find this product on Amazon but there are s few other makes...one of which contains soy which put me off...I do take 2000 vitamin C but as a fizzy tablet
I’ll look elsewhere
Thanks though
Barb xx
I wasn't on Ibrance for long, but while I was my neutrophils dropped to .5 at one point. My oncologist wanted me back up to 1.0 before restarting but tried to reassure me about the risk of infection. She said that while Ibrance does affect WBC and neutrophils, it does not damage the mucus membranes of our nose, mouth, throat, etc that help ward off disease, as some chemo drugs do. So even with neutrophils as low as .5 she just doesn't see that many infections or colds. I also remember some women here talking about being on a "5 days on/2 days off" schedule of Ibrance. It might be worth asking your oncologist about that. I think the idea is that your body gets a break every 5 days before neutrophils get dangerously low.
Wishing you well!
Hi, MacroMom. Do you mind telling me if they switched you to something else? Thank you so much. I appreciate it.
Sure. After 15 months on Letrozole I was only on Ibrance/Faslodex for a few months before my CA15-3 went up a few hundred points and liver mets increased in number and size. I'm glad it works so well for so many but it wasn't a good fit for me. I'm now on an oral chemo called Xeloda that so far has me feeling great and the CA 15-3 dropped over 200 points the first month. Waiting for this month's results today but I feel so good I expect it's working. I was also offered Verzenio, Alpelisib or a trial immunotherapy but Xeloda had the best track record against liver mets so I went with that. So far so good!
The Vitamin C idea sounds like something to run past your oncologist, especially if Ibrance seems to be stopping your cancer.
Thank you, MacroMom. I was just diagnosed metastatic in May in my stomach in two places. I have occult breast cancer, not showing up in any scan. Had an endoscopy and found the cancer. My tumor markers did drop a few points after first cycle, but this is only my second cycle because I had to stop for three weeks rather than the normal one week. My tumor markers are in the 400 range for 27-29 and 200 range for 15-3. My CEA tumor marker is also high. I’m not totally sure yet if it’s working or not. I think it’s too soon to tell. I appreciate the information.
I just read your post about “occult” BC...I had not heard that term. If you mean they never detected a tumor and you were diagnosed as stage IV...well that was me too. I was in pain all last year and no one could figure out why...until after biopsy in late December. Then January 3rd I was told stage IV (Er+, pr moderate).
Did endoscopy find the tumor?
Hi, Presence1. Yes, I had an endoscopy, and it came back metastatic adenocarcinoma in one part of my stomach. They wanted me to do it again to get more tissue. Second biopsy showed cancer in two parts of my stomach. All imaging of the breast came back negative. I’m ER/PR positive, Her2 negative. I lost about 12 pounds very quickly and had early satiety. That’s why they did endoscopy. It’s the oddest thing.
When you say “pain,” if you don’t mind me asking, what kind? And where did they do a biopsy?
The pain was intense. I ended up wit 4 fractured ribs. I have bone Mets only and it involved ribs and iliac. They said it was breast cancer, (no tumor ever found at yearly mammogram and I also had annul ultrasound mammogram too), bc it was estrogen based and no evidence in uterus.
They did the biopsy in my right iliac which had 70% cancer cells by the time it was done.
One doc thought I had multiple myeloma but that was ruled out. They didn’t know what was going on until biopsy results. All my blood work looked okay.
Funny you should say multiple myeloma. In 2013 I had a car accident. Had MRI. They found multiple lesions on my spine, thought I had MM. Bloodwork showed no evidence. No biopsy done. Still having pain from accident 2016. Had MRI. Again said they thought I had MM. I had a bone marrow biopsy. No MM found. Then the other symptoms started in October of 2018 with the weight loss and early satiety, and I’ve had anemia since then too. That’s when they found it. It’s such a weird feeling to know it’s elsewhere but doesn’t show in your breast. I hope your pain is better.
Hi
Just got home from oncology appointment. Blood work looks good. PET scan next month (if insurance approves).
I have a rare presentation of breast cancer. Since they never found the tumor they can’t say if it is ductal or lobular, just that it is grade 3-(aggressive).
I don’t know if you’re interested, but I did put a link up to a lobular breast cancer webinar tomorrow night. It’s in a different post. I’m sorry it’s aggressive. It’s just so weird to me the way cancer presents sometimes. I’m glad your bloodwork was good. Good luck with PET. I decided to get my own in the beginning even though insurance wouldn’t cover it. It’s not cheap.
My initial appointment was to rule out multiple myeloma...I had a bad horse riding accident and was in pain and my ferritin levels were off the scale...turned out to be mbc after 24 years of thinking I was cured...fractured vertebrae was the worst and I’m still in a lot of pain from it unfortunately
Barb xx
I’m so sorry that it came back and you’re in pain. It’s very weird that first thought is always multiple myeloma.
Oh that sounds so painful. Sorry that you are still in pain. Did they ever find the breast tumor?
Hi! I do the 5/2 and my neutrophils have never gone below 1, usually around 2. I feel pretty good most of the time. I take ibrance 100 mg. and letrozole, but lowering ibrance to 75 mg. next mo. because I am experiencing occasional blurry vision and headaches, otherwise, no serious side effects! I don't trust ibrance but it's the best we have. I have days when I don't want to take it anymore, and just see where the letrozole takes me, but then I take it anyway and try to have faith that it will work wonders for me too, like it has for so many women. I also take ginger root powder, 3 caps in the morning, along with my bp meds and diabetic meds. Oh, and also, I found out by reading that neutrophils are the wbc's that keep us from getting infections from bacteria ALREADY in our own bodies. I was worried about being around other people and germs ... hmmmm ... what an eye-opener, though those still can make you sick but ... alas, one of the enemies is WITHIN. God bless you and heal us all in Jesus name, amen!
Thank you, Godbeforme. I was reading that too. Our own bacteria. Who knew? But let's hope we all can stay healthy from within.
yep, with the 5/2 they don't drop and it's the wbc being low that makes you feel so tired I do believe. they have a trial going on with that dosing strategy that is to be completed next year if I remember correctly. <3 xo
Thank you. I’ll look into it. I’m on the 75 milligram, and I’m actually not feeling too bad on this dose.
that's a good thing! if it isn't broken, don't fix it as they say!
I have a new doc who doesn't worry about the neutrophils as long as they are no lower than .5 - so I don't worry either. If l feel sick or too tired l will wait a few days or more before plus my week off before starting the next round of Ibrance. I'm on 75mg the regimen is still working for me pm stable. On Ibrance since 10/17. I hope this gives you some reassurance and less worry though l know exactly what you are going through it is very real and painful ♥️
Thank you, MPmary. I will talk to him about keeping me on it for another month to see what happens. I know he really feels I shouldn't be if I'm below 1.0, so we shall see.
I have been on ibrance for just over 3 years and my neutrophils are always at about 3.7.
It might just be in my head but everyday I have a smoothie that consists of broccoli sprouts, banana, kale, blueberries, strawberries , peaches, ginger, turmeric, black seeds, flax seeds, chia seeds, hemp seeds and mushroom powder. I’m convinced this helps keep me healthy. I also eat plant based only.
You can start smaller with your smoothie and add to it as time goes by, I figure it certainly can’t hurt and I’ve grown accustomed to it.
Wow, Home18, that’s quite the smoothie. I take it you make it yourself? I could try something like that. I definitely want to do more research as to what can interact with the medication. I’m glad your neutrophils are so awesome.
Yes I do make it myself. It started out very basic and has evolved into this. I also drink an organic green “super” juice every morning. My husband came up with that idea but unfortunately he’s only had one glass of it lol, I on the other hand can’t stop now that I’ve started!! 😂
P.s my oncologist is supportive of the smoothie, I think he’s just glad he isn’t drinking it lol!
Time to ask for alternative drug?
I’m wondering if there is an alternative. I’ll find out Monday at my appointment.
I am so sorry you are going through this. Please try NOT to think infection is gonna get you first. I know. This is hard. If it weren't hard, you wouldn't feel so dispirited. Say a little mantra that goes "keep going" I say that over and over again. I figure there's enough time to give up in disgust when I have to give up, and if you get the chance take little walks in nature if you can - - be away from people and close to trees
Thank you, msmuffintop. Luckily, most days I have a positive attitude. It just so happens I will be in nature next week, so your advice has perfect timing.
It took me about 2 months to get over the side effects of Ibrance.
After that it was just -did I say Just- fatigue. It worked for about 15 months.
Now I’m taking Xeloda. So far just slight fatigue.
Hang on. ❤️
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