As many of us here on ibrance, my wbc’s take a dive 3rd week of cycle and the week off. I usually avoid public places or at least wear a mask and use hand wipes when wbc’s are low.
I’m in day 4 off pill and had labs today. The total wbc’s and neutrophils should be at least 1000 and mine are at 570.
As a friend and I make a special yearly V-Day dinner for a few other couples. I’m wondering whether I should go ahead and do this given cold and flu season. I’ll check in with my nurse but I’m wondering if any of you go out when you have neutropenia?
Thanks so much!
Red
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Red1246
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I was very cautious in the beginning, wearing a mask when I went to the grocery store. I don’t now. My ANC is always low, but it hasn’t been that low since I switched to 75 mg. What’s really weird is it was lower this time after my week off and up a little after my first week back on. I just never know. Everyone around me has been sick but me. I think it’s probably because I’m more cautious. I wash my hands more and wipe things off. I think your comfort level with the risk should dictate. I did get the flu shot as well, although I hear it wasn’t what’s been hitting this year.
I wrote you a response but it seems not to have posted.
Thank you for your reply to my query.
I’ve been told by my onco nurse that the ill effects on wbcs from ibrance are cumulative. So the first two weeks of our cycle, they’re as they should be. By the time week 3 rolls around they are lower and usually in the week we’re off the pill as well. I don’t often begin a new cycle until the wbcs are normal again and that takes about 2 weeks.
I so hope my body will either get used to the drug and not create neutropenia or perhaps I’ll be given a lower dose. I’ve heard those on 75 mg often don’t have the same issues and the dose is just as effective.
Hi, Red. I believe that. In the beginning when I was having issues with staying above 1.0, they were going to put me on a two-week-on/two-week-off schedule, but I haven’t had to do that yet. Best wishes to you as well.
I'm talking with my onco nurse this afternoon and going to suggest a different schedule for the iBrance. I'm glad you haven't needed to do it. With my wbcs around 4---500 each time, I think it might be worth considering a change. Though this is only my 5th month on it and maybe too soon to tell. Thanks for getting back to me.
Agree - it's kind of "the devil" you know situation... I'm in general impressed by the results of Ibrance combined with an AI, and reluctant to give either up at this stage.
Problem with asking friends if they’re healthy is one can feel fine today and wake up tomorrow with a sore throat and they’d have been contagious today.
That said, I’m pretty much in favor of participating in the dinner at the moment.
I’m tired of being limited to two weeks a month when WBCs are normal.
I’m definitely up to it! Thanks for your reply, Smurf.
Pretty sure I’ll participate, pending perhaps word from my onco nurse that it’s unwise. Still waiting to hear from her.
All best to you!
Red
I spray my clothes with disenfectant suitable for fabrics when I come home after travelling on public transport. I wear gloves (at the moment) and carry hand gel and use a nasal defence spray. Rightly or wrongly I do it for peace of mind. Maybe I’m to Clinical. I think you should go ahead. Your friends will be honest enough to stay at home if they are poorly. Have fun...........best wishes
Thank you so much for your reply. I’ve not heard of a fabric-safe disinfectant. Could you please share the brand? Also what nasal spray do you use?
I’d feel much safer participating in the dinner using these precautions. Thanks again and all best to you! 🙏🏻 Red
The Defence Nasal,spray is made by Vick and the spray is made by Dettol. I am in the UK. Hope you can get it if you live elsewhere. Vick can be purchased on eBay but not sure if it will be on the .com site.
Thanks so much! I used to live in U.K. and still remember the smell of Dettol! I’m in California now and not sure it’s available here but will check Amazon abd others.
I can’t make it through the entire 21 day cycle of Ibrance as my ANC is generally 600-700 after 14 days so I have to stop. I’ve dropped down as low as 300. I wash my hands constantly, carry antibacterial gel and lotion as well as plastic gloves and try not touch anything without using a glove or napkin i.e. door handles, soap dispenser, ATM, gas pump, restaurant menus. Wash my hands after I look at the menu and order. I use a napkin to pickup any condiments like ketchup, salt/pepper and avoid eating anything raw in restaurants such as salad, fruits/veggies that are raw and cannot be peeled (berries, raw crudités). I have become a germaphobe due to neutropenia but I still want to go out and enjoy life ...especially dining out. I just try to be extra careful and use common sense -ask for a corner table or booth etc. Enjoy your VD dinner🥳
We are much alike. I too am a germaphobe and go through many of the same precautionary steps as you. My friends just look at me and wonder if any of this is doing any good. So far I've not caught a cold or flu which turned into an infection, so I'm probably not going to stop doing this anytime soon. I think I will go out more often though as staying home a few weeks each cycle while waiting for wbcs to pick up is depressing.
I’ve been on Ibrance for almost two years. Although I wash my hands more often and try to stay away from obviously sick people, I have babysat my slightly ill grandchildren...no kissing grandma please!, and haven’t been sick since I started. My ANC levels went down low enough in the beginning that I had to take an extra week off but now they are about 1000 at the end of 7 days. I would go out and enjoy yourself. Feeling like you are giving up things you enjoy doing probably does worse things to your overall well being than your chances of catching something!
I’m on 75 mg of Ibrance because my ANC plummeted so badly in the beginning. It still goes lower than normal but not so low they worry about it. It will be interesting to see what it is the next time it’s tested. I’m off cycle because we have been on vacation so I will be tested on the 12 th day of Ibrance.
In the beginning I was afraid to go near my grandkids if they had even a slight sniffle but I have one set once a week after school and have ended up with one of them telling me she hasn’t felt good all day. Temp 101. Mom and dad at work. After not catching anything that time and a couple of other incidents I’m not too worried anymore. There are four of them, age 4 to 9. They are my sunshine!
My understanding is that although our neutrophils tend to be lower than ideal when taking Ibrance, it doesn't seem to make us more prone to catching things, for reasons unknown. Certainly for me, it doesn't seem to have made a difference, I'm not suddenly catching everything that's going thankfully. Go out and enjoy yourself! xxx
Really? I’d not heard that. So interesting and what a relief if it’s true and you’re not just one of the lucky ones with a strong constitution. I’ll see what my onco nurse says when we speak tomorrow. It would certainly make my life less stressful if I didn’t have to be so vigilant. Do you take care not to eat raw fruits and veggies when your wbcs are low and wash hands frequently etc.?
I eat loads of raw stuff every day. I wash my hands regularly with plain soap and water, it's usually the first thing I do when I come in from being out. I've always done that. I certainly don't use anti-bac stuff on my skin, I don't even have it in the house. I have too much respect for my natural skin biome which takes pretty good care of me. Best xxx
You sound like you’re in great health other than the MBC. Good to hear it! I’ve been told when wbcs low we must avoid raw veggies and unpeeled fruits as they carry bacteria our system isn’t able to protect us against given compromised immunity. Your oncologist never mentioned that?
My onc absolutely did not mention that. It never ceases to amaze me how different our healthcare experiences are in so many ways. If I didn't eat raw fruit and veg I don't know how I'd manage, I eat tons of the stuff.
And yes, I'm in excellent health apart from the 'you know what...' I don't even know how that sneaked in there. (Actually I do, I had a very traumatic and devastating time three years ago. My mum died (a protracted and unpleasant affair, in hospital for 10 weeks with a trachy so she couldn't talk) and at the same time I discovered close family members had been systematically stealing from her for quite a long time, which explained the dreadful depression she had been suffering from. She knew she was being 'asset stripped' but could not bring herself to mention it to anyone. It was a truly dreadful time in so many ways and I have been working very hard since my diagnosis to come to terms with it all. I know in my heart that all that negative emotion was a major driver of my disease and dealing with it (which has ben hard and has taken a lot of time and effort) is essential to maintaining wellness going forward. Sorry, I have completely high-jacked your original question but I probably needed to get that off my chest! Sending love and best wishes xxc
No apologies necessary. I’m glad you got that off your chest. How terrible that happened to your mom and you had to deal with not only losing her but the dishonesty of family members as well. I’m so very sorry.
Stress is a killer. I had a very stressful job raising money for a non profit and know that too contributed to my Illness.
Agree: it’s amazing how doctors vary in their thoughts and instructions on dealing with MBC. Both my onco and her nurse have told me about the fruits and veggies as well as a nutritionist. If you do an internet search for “diet for neutropenia”, you’ll see eating only cooked vegetables and fruits that can be peeled is recommended. Plus sauerkraut and other fermented foods or drinks are to be avoided as they’re made by bacteria I miss salads so much during this period and try to make up for it when allowed.
Thanks so much for sharing your thoughts. Please don’t ever feel the need to apologize here. This community is here to listen to one another.
I work in a crèche and I’m a fitness instructor . I don’t wear a mask at all and my neurophylls have been under 1 but this time around they are 3 which they never ever have been
I do, but I think the lowest man has been is in the 600s. Research has shown that low white count from Ibrance is different somehow then from IV chemotherapy. Don’t ask me how, but my doctor said that. Disclaimer here, I’m not a medical person, but I Have been on Ibrance 4 1/2 years. My thought is if you choose to go out, do not eat from a buffet line, and make sure your dinner companions are all well. Other than that, use hand sanitizer.
I too have been told the low neutrophil count isn’t as much of a worry for catching things or eating. However, when you do catch something I think it becomes more of an issue. I had a count of 500 when I had the flu last year and I was hospitalized and everyone had to wear a gown when they came in. My son and I both got the sick at exactly the same time when we were traveling so I wasn’t more prone than him, just got sicker. I only wear a mask on planes which honestly most people should haha and other than that just live my life!
I only lasted three months with Ibrance because my week off was a horror. It was laying in bed, shivering, no matter how hot it was. Then I saw on another forum board how different it is for everybody. I was on 125 mgs. (I never knew you could get a lower dosage) but I had to have an operation that took four months to recover from so my onco did not want me back on it.
But some ladies said they felt the same (they were on 125 mgs) on their week off as they did on it. There were others, like me, that had a rough time on their week off and then there were other women who actually said they felt better on their week off so everybody is totally different.
But the other board (and I felt embarrassed) one lady had been on Ibrance for 3 years at 125 mgs. and still works as a school teacher for fourth graders and never had any issues when obviously kids are sick or have germs. LOL. Another continued to work as a nurse full-time in a hospital.
Neither one of them had gotten sick or had any issues. There were many other women who still socialized and such. I think it's just common sense. If someone is sick with flu or something, you would avoid them to a certain degree just as you would if you did not have cancer. I read of women that traveled overseas and enjoyed themselves and had no issues on the Ibrance. So I think it's just using common sense. I stopped using gloves after the first week and just took them and washed my hands.
I think you should go to the dinner and it will do you good. I have no Valentine so no candy for me LOL......Enjoy and have a good time. Getting out and socializing is good medicine also. Sounds like fun. Enjoy.
Mine get low, but have never been that low. You probably don't have the energy to go anywhere. If I went, I would be extremely careful. Have you tried drinking a power smoothy or something that might build you up? Hope this passes quickly. Blessings, Hannah
Thanks, I do have enough energy to go out. Some days are worse than others. It's something I'm used to as it occurs each cycle. It will pass but takes a good week - 10 days before wbcs normal and I can go back to eating raw fruits and veggies etc.
No, I haven't had a power smoothie in an attempt to build my system but will discuss with nutritionist. Appreciate your input. All best, Red
I have also not heard anything about not eating raw fruits and vegetables. I eat blueberries year round, right now lots of apples because it’s just been apple season, and I’m in Maui so have eaten so much pineapple I should be yellow! Everyone has the risk of salmonella from fruits and vegetables and I watch for any warnings(like the most recent Romaine scare). I wash or rinse my fruit, but I eat a lot of it and have not had any problems. A well rounded diet was what was recommended to me. Elaine
Interesting. I spoke with my nurse today and she reiterated I needed to be careful, i.e. not eat these while I have neutropenia.
We agreed, however, I’ve been a bit neurotic about it all and I’m now loosening up and evening going to the gym starting Monday. Leaving mask at home; will just continue to wash hands regularly.
My ANC and WBC are always tanking after my Ibrance - I don't worry about it and have never gotten sick - in fact I just got back from a 3 week trip to Israel - Jordan - and Egypt and did fine - Live your life!
Glad to hear it! Thanks so much for replying. You and others are an inspiration and I not only participated in the V-day dinner but making plans for a European trip this spring/early summer.
Do you have blood work done while traveling or just forget about it until home?At the moment I’m having these tests every two weeks.
My wbcs have been low and my onco nurse likes me to have blood drawn a week or so after last pill taken and then again to assess before I begin next cycle.
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