Hi all! I know the doctor tells me make sure to stay away from large crowds, wash your hands regularly, don't be around sick people, but I'd like to get a feel for how many here have low neutrophils all the time and get sick, haven't been sick, etc. So I'm going to put some statements with numbers. Can you please let me know what number you've been. I want to take precautions, but I am not going to stop living and be in fear.
1. I have not been sick with low neutrophils at all.
2. I've had a cold, but I got over it in the normal amount of time without fever or complications.
3. I've had a cold, but it took a turn and I got a fever and had to go on antibiotics.
4. I've had a cold/flu that turned into either bronchitis or pneumonia.
5. I've had the flu, but it ran its course with no antibiotics.
6. I've had the flu, and I ended up getting really sick.
7. I've had an illness that ended up putting me in the hospital.
8. I've been sick more often with low neutrophils than I was before.
If you don't see something that has happened to you with low neutrophils in my list, please feel free to add. Thank you so much.
It helps a lot, Barbteeth. The more I hear that people aren't getting sick, the more comfortable I'll feel going out in crowds. I'm fortunate, I work from home, but I would like to go out to eat, etc.
Number 2, but only because I took care of my grandson with the sniffles. Before that I had gone a whole year without a cold which is the longest I have managed lately with 4 grandchildren under age 8! My neutrophils are usually about 1.1. I’m still getting over the cold but it hasn’t progressed to anything but a post nasal drip. No fever. I’m home a lot but do see the grandkids weekly, go to movies, and have coffee daily at my local coffee shop.
I’m on my 16th month of Ibrance. Near the end of the 2nd month, I had fever and had to take antibiotics. From then on, I’ve only had a cold once or twice with no complications. I work full time, travel a lot (my oncologist and hospital is 220 kilometers (one way) from my home) both locally and internationally. I get my Ibrance from Malaysia so I go there every couple of months, visit one daughter in Singapore and my 2 daughters in Glasgow. I go to the supermarket, cinema, church, restaurants and other places I usually went to before MBC. My ANC is around 1.1. Lowest it has gone is .9.
No.2. I work full time and just go about my business in the usual way with a few extra precautions. If you know someone is ill try keep your distance or if its family ask them not to visit while they are sick. Hand sanitizer. Wash your fruit n veg. Just common sense stuff really. Xx
I don’t think I strictly fall into any of the above ? I’ve recently had a bad cold with a fever but it ran its course with paracetamol ( no antibiotics and no hospital admission ) . My husband and I both caught it from our daughter who was full of it , when couped up in a car with her on a very long journey back home from Ireland !
I’m just about to start cycle 24 of ibrance(125) and Letrozole but my wbc and neutrophyls have always been within normal range .
My husband and I both had our free flu jabs today ( we chose to have it at Lloyd’s pharmacy in Sainsbury’s supermarket while we shopped ! ) . x
Oo yeah that is very low isnt it. If mine were that low I guess I'd step it up a gear and maybe avoid things like indoor crowded areas eg I went to a concert last week so maybe avoid stuff like that. X
Ah we go loads usually in mosh pit lol. Was tame last week - Belinda Carlisle. Blast from the past. More frenetic ones include AC/DC Aerosmith and Whitesnake hahaha. Mosh pit mayhem at its best. X
Thank you, Sandra. You are so right. Just getting used to the new norm, and I think my husband worries more than I do.
I have a hubby who’s like yours, always worrying. Opens doors for me so I don’t have to touch them, reminds me to stand every 2 hours when we travel (avoid blood clots), has the hand sanitizer ready when we are in public, pleads with me to wear a mask on airplanes, if having company over ensures no one is sick before coming over, etc.....will plead my case to all the docs we’ve seen since being on this MBC journey .... he does it because he cares but sometimes it drives me crazy 😝🥰
Onie54, Yes, they care so much. I hate flying, so I’m good there. Luckily, he doesn’t talk about the blood clotting stuff, and I actually have a blood clotting disorder. We won’t bring that up. 😊
We are lucky to have them care so much. Somewhere in there has to be a middle ground.
Thank you so much for your replies. I am going to get my flu shot on Monday. You’ve all put my mind at ease, and I really appreciate you. Now, if I can just get my husband to relax. Lol
Get your husband to have one too... over here in U.K. husband gets it free too if wife has reduced immunity ... it took 2 mins and didn’t hurt ... just a slightly achy arm a few hours later but nothing ! It was the third year I’ve had one ... we decided to have ours at the supermarket pharmacy as could get it done more at our convenience , and on my week off ibrance . For those of you in the U.K. you can get your free vaccination from either your GP or pharmacy in Sainsbury’s , Asda, Boots and Superdrug . Take care ! x
That’s funny you say that. After I called to make my appointment, I told him he should have one too, so I called back and set him up as well. I’m going to our doctor’s to have it done. The grocery store has had them a while, and my doctor just got theirs. I’m thinking maybe they’re different and the doctor’s office might be closer to what’s going around this year. I may be totally wrong. I haven’t had one in so long.
Those darn planes. If anything, those plane trips will get you with all that recycled air.
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My neutrophils are around 1.5 usually
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I haven’t seen that number since I started the meds in June. Maybe some day my body will adjust. I’m also anemic, but that was even before the meds. A lot of my blood numbers are whacky. I feel okay, though, so I’m just enjoying life! That seems to be the only side effect for me, so I’m happy about that.
Thank you. This past week they came down to .99, but they’re letting me stay on since I was right there. I may end up having to do two weeks on, one week off if they don’t get back up above 1.0. The .99 result was after the first week of three. That’s awesome that you can handle the 125 mg. I won’t know what they are again until the 21st, so they could be lower now. They go up sometimes for no reason and will come right back down the next time. Lol. I am very grateful for my husband. We’ve been together for almost 38 years.
You are so sweet. Thank you.
We started dating in December of 1981. That’s too funny.
#2 I've had one cold in the 7 months I've been on Ibrance. I wish they'd agree to lower my dose though as my neutrophils are often below 1 at the end of the month...
That’s odd. They usually make me get off if I’m below 1.0. Are you on the highest dose? I would tell them to if they didn’t suggest it, but I’m not you and have no idea of your situation. I can be rather pushy if I want something
It tends to be borderline - 1.0, 0.9 etc. As I'm very well otherwise, they have let me carry on if was 0.9, but as 0.8 they stopped my Ibrance for a week. 0.7 is my lowest. I have suggested twice that they put me on lower dose.Perhaps I need to suggest a little more strongly!!!
Definitely 4- when I first started ibrance-sinus infection that lingered and went into bronchitis. Antibiotics worked, lowering ibrance also but it was 3 week wait to start again.
Oh, wow. That does not sound fun. I’m glad you got better. Thank you for responding.
It is hard just to pick one of those options but I know from a previous forum board I was on where women were on Ibrance and falsodex and had been for several years were still working full-time as teachers (for fifth-graders) and others were working as nurses in hospitals and were fine. It's just common sense even if you were not on the meds. Wash hands more and obviously if someone is sick with flu, you stay away from them. If women and nurses are around sick patients and coughing children all day and are doing fine, I would not put too much into it. It's just using common sense as you would do if you were not on it. It said to put gloves on when taking the pills, I did that once and never did that again. Just washed my hands afterwards. I am going to get my flu shot today as a matter of fact.
Do you also know whether their neutrophils were in the danger zone? That’s where my question comes in. If neutrophils and white blood cell count are within normal limits, I would not be concerned at all. Getting sick is a normal part of life, but if you don’t have enough of the fighters to help you get better, you can stay sick much longer or get more sick than the average person. That’s what my questions are asking, if that has actually happened to anyone with low neutrophils.
That is why I was taken off the ibrance after only three cycles. An infection that I got in my leg (boils under the skin that make it incredibly painful to walk or even put clothes on). After having to go to ER twice in the past to get them drained and when they put that needle in the cyst before they drain it, they give me a plastic bone to bite on because the pain is unbelievable. So after that the minute I would feel one growing or tender on my inner right groin (so even walking was close to impossible) I would get antibiotics and it would clear up and go away. But because I was on that damn Ibrance and even when they took me off and tried me on five weeks of antibiotics, my body could not fight it. I have to have surgery (and I had been told the recovery would be excruciatingly painful. The plastic surgeon actually cut tunnels out of my leg. I have to have a nurse come to my apt. (I live alone which is 10x worse bc the pain was unbearable..by second day ever stitch ripped out and I was bleeding). I had to go back like four times on an emergency basis. The one month recovery took four months. I had one large gaping hole (not even a slit) in my upper leg and was terrified I would lose my leg. Even my onco was shocked that three months later this large hole was not closing up and she took a photo (She was the one who recommended this idiot plastic surgeon who I found out afterwards had never done the groin area). I am now heavily scarred there and it still hurts like hell. So she would not put me back on the Ibrance bc before the Ibrance I could take antibiotics and it would clear up itself.
I think probably number 3 but I don't think it was anything to do with low neutrophils. Several of my colleagues had the same cold and also had antibiotics.
Whilst on ibrance and faslodex my neutrophils were between 0.9 and 1.6 and I couldn't predict what they were going to be by how I was feeling.
I stay away from people with colds if I can, and use hand sanitiser when I think about it, but apart from that I don't take any special precautions. I work full time, socialise, and have been on holiday a couple of times.
One other thought, when I was being treated for primary bc and was having intravenous chemo my temp dropped to 35 degrees though I felt absolutely fine. A blood test showed that my neutrophils were at 0.1. Because of the low temp I was admitted to hospital and put on intravenous antibiotics - I still felt absolutely fine. When they came up to 0.7 I was discharged and sent home on public transport - a bus, 2 trains and hrs to get home.
When I first started the continuous chemo the nurse gave a severe talking to about the dangers of infection and just because it was a tablet I mustn't take it any less seriously. I was on ibrance for 18 cycles and probably had 3 or 4 colds, one with a chest infection. But they were no worse than colds I'd had prediagnosis. That gave me a lot of confidence that despite the medication I was ok. Our bodies are really pretty amazing things even with low neutrophils 🙂
I didn't ask. But I assume because my platelets are low on Ibrance. I see her 2 weeks after I finish my Ibrance and my platelets rebound and my wbc go up too.
My answer is #1. My neutrophils are usually around 1.1. I work outside my home and keep up a normal routine, although I am careful about washing my hands and avoiding sick people.
At end of 3 weeks. My neutrophils are always low. About 6 times doc has asked me to wait to go back on to my monthly regime, cause they’re too low. As is the case this time.
Have had ibrance dropped to 100 mg, for this reason. Still happening. In 15 months on treatment, I have had #3 once.
Ps. I catch public transport around Melbourne all the time, and I eat out often. I have been on a few airplanes during this time.
Thank you. I went straight from 125 to 75 after dropping to .58. Hopefully you can drop to the 75. Mine still go below but only to .99 so far. They even were close to normal one week while I was on them and dropped on my off week.
On Ibrance 125mg - 2 rounds so far + Faslodex. Starting out I already had a low WNC and ANC was 1700. After 1st round went into neutropenia as it dropped to 200. After a week off it went up to 500 and after another week to 1000. Second round same thing - had to be off 3 weeks. Dr said I need to be at minimum 1000 in order to start again. Round 3 she’s dropping ibrance down to 100mg and hoping this helps. I am very aware, wash hands a lot, use hand sanitizer, use napkin to open doors, pump gas, etc but I do go out pretty much every day to exercise, shop and eat out 3-4x week. Like everyone I want to keep enjoying things. So far so good...best of luck!
I have had no colds since starting oral chemo 17 months ago. I had some had diarrhea last winter but was never sure if it was a bug or as a result of the Xeloda I was on.
That’s wonderful you haven’t had any colds. I hope that continues for you. If nothing else, it makes us more aware to take precautions. Thank you for sharing.
35 months on ibrance and letrozole. I have had pneumonia shot and yearly flu shots. I have only had a few colds which I recovered from in the normal amount of time. I keep a bottle of hand sanitizer in my car. I use it more in the winter when I getting in and out of my car. I try not to touch my face or eyes if I am in a crowded situation. I have only worn a mask when at a medical building in the height of flu and cold season.
Yes, every month. I get a filgrastim shot after finishing a round of ibrance. I will get my flu shot on the first day of the next round of ibrance when wbc is back up. I also try to book any kind of medical procedures including going to the dentist during the time when blood counts are at their best. This is at the recommendation of my oncologist.
Thank you. Yes, my doctor said no teeth cleaning. My gums bleed when they clean them. No pedicures either. Boo! I will see what my numbers are this next Monday. They go up and down right in the middle. It’s strange.
So far still so good, no colds or flu, but my neutrophils dropped to .61 this week on the 75 mg. I am on my off week, so if they don't go above 1.0 next week, I'll be taking a break for an extra week.
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