I was diagnosed with MBC in June, 2023. I am on Ibrance and letrozole. My medical history is complicated by having had a donor stem cell transplant in 2018 for T cell lymphoma. My immune system was compromised from that but now with Ibrance I'm not sure what to expect in terms of traveling and going out to public places. I read many posts from a month ago and it seems people are living their lives going to concerts, museums, flying , riding horses and even cleaning up after their horses! I was so happy to see normal life goes on!
Since I've been on Ibrance I've had RSA virus and recently a rare pneumonia common to transplant patients and was hospitalized for a week. I would not want to go through that again. I never got sick 5 years after transplant so I figure the cancer and the Ibrance, letrozole treatment will be a challenge for me.
Do most peoples' abs neutrophils go below 1? Has anyone's treatment been on hold so that the absolute neutrophils went up to .1? Just checking what is usual for this. How careful do I have to be? I wear a mask in crowded places but never really end up in such venues. Thanks!
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Artesa
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I’ve been on Ibrance for almost 3 years. I started at 125 Ibrance, then went to 100, and now my neutrophils is at 1. I’ve been off Ibrance now for two weeks and I will start 75 tomorrow. I am getting my blood checked tomorrow before I start it. I did get the flu in Feb and was very sick and hospitalized due to my count being at 2. Hopefully tomorrow all will be well.
I’ve been on Ibrance and Letrozole for 4 years, neutrophils mostly between 0.8 and 1.0 but didn’t stop travelling. Definitely took precautions to staying out of crowds where possible and masked up if I had to be too close to people. Just do what you want but be careful and keep washing your hands, sounds silly but it’s how we pick up most germs.
Hi I have been on lbrance and Letrozole since 2020 and I have made significant changes to my life…in that I travel and try to enjoy myself far more now! I have just come back from India and planning another trip there and have had absolutely no issues. I appreciate we are all different so can’t advise not to be cautious but I can’t say that I have been. My neutrophils haven’t been below 1 but I have stopped lbrance once or twice due to a few procedures when I was first diagnosed and I remain NEAD (for now). I do follow a diet, take many supplements to support my immune system and in general try to pursue an anti-inflammatory lifestyle and although I believe this has really helped, who actually knows. I really hope you tolerate the meds well and that you are able to enjoy your life as much as you can🙏🏻
Can you tell me what supplements and anti inflammatory foods you avoid? I am going back in Ibrance .75 and arimidex- as some mild progression of bone mets noted in last scan - so hope this medication will shrink these Mets
Hi re supplements, each day I take coriolus, vitamin D3 and K2, vitamin C, zinc, a probiotic, B6 complex, R-Alpha Lipoic acid , Magnesium Bisglycinate, Omega 3 vegan, digestive enzymes, Calcium/Magnesium Butyrate and high dose Melatonin. These were all advised to me my a nutritionalist/integrative health coach I was fortunate enough to see for the first year and half after being diagnosed. I also take calcium as my meds resulted in quite severe osteoporosis. I have refused meds though (I’m in no pain and undertake yoga each day) but as calcium results in oxidative stress, I only take one that derives form algae. I was vegan on diagnosis but now I’m veggie and ‘try’ to follow a keto diet! I really hope that this combination of meds works very well for you 🙏🏻
Thank you for sharing this information - all so interesting. Would you mind sharing what supplements you take and how you follow an anti-inflammatory life style.? I assume that may mean eating Gluten Free. Many thanks and all best to you. KS
Hi there - I have listed the supplements in my response to Tantalon7211 so hope that helps😊 Beyond that, I juice each morning with specific ingredients suggested by my former nutritionalist (kale/spinach, cucumber, celery, broccoli, beetroot, ginger, turmeric and parsley). And yes I’m keto so gluten free. Well when I say keto, I was very purist at beginning and now less so from time to time! Most of the food in my house is organic but when eating out, there are not that many organic restaurants in London, so again not purist. And when I was first diagnosed, I threw out of all the toxic products I had in my house (cleaning/bathing/make up etc) which were many!
I have been on Ibrance for 18 months. I only do 2 weeks on - 1 week off. Neutrophiles are usually around 1.0. Occasionally below 1.0, then I have to wait a few more days. But I have noticed that If I eat plenty of protein/B12 I get better results.
I travel as normal, just been on a 3-month trip from Europe to Indonesia / Australia, including a 10-day cruise. I have never worn a mask, and I don't get sick.
I guess it is individual. The only issue I had was to be able to take the blood test while traveling around Australia (France, South Africa and Indonesia was no problem), but eventually found a doctor that would sort out the paperwork for me during my stay.
How do you get your ibrance when you're away. ? My hospital will only prescribe month by month with blood checks. And I have fulvestrant jabs monthly too. So my trips have to fit within those weeks.
I get 3 months at the time, and I can renew after 2 months, so I have a few spares. But I have to send blood test results to my doctor every 3 weeks, for them to approve me starting a new course.
I don't get Fulvestrant. Is that instead of Letrozole or instead of Xgeva? I will ask this afternoon when I see my Oncologist. (On the other hand I would not want to have to come back every month).
It's instead of letrozole . I had an issue, they thought the cancer was fighting back so changed me to Fulvestrant which is doing the trick. My partner is visiting relatives in Australia and he's trying to find out if I could organise some of this there with a consultant's letter.
Email my oncologist (as I do any way) and ask. But I have interpreted these for so long now there is rarely a sudden change. If only Neutrofils, I just wait another week and re-test.
I have only twice had my ibrance delayed in four years. Both times when I'd got an infection but that was some time ago. Both were urinary infections but having had good preventative advice I seem to be ok. I lead a normal life. The only restriction is cost of travel insurance and working around appointment schedules! Good luck.
Once I get settled on the treatment plan, still in progress, could you tell me what travel insurance you use? I am on my second cycle of Kisqali but I had a Petscan after 2 cycles of Ibrance and then 1 of Kisqali and there were some new developments. So I am now going to do 2 cycles of Kisqali and then another Petscan in May.
I'm with All Clear, but there are several insurers who specialise in covering those diagnosed with cancer. The critical bit is to determine with your consultant what the state of play is, tumours reducing, tumours stable or tumours increasing ( in size or number) as this affects cost. I paid about £1500 for a year's European cover, with a stable diagnosis.
I've been on Ibrance and Letrozole for over 2 years. The only changes in my life from before diagnosis are made because of the aches and tiredness which are side effects of the treatment. I still go to work (although reduced hours), to pubs and restaurants, the cinema, theatre, concerts. I've been abroad (Greek island) twice since on this treatment.
Mitigation for getting unwell on holiday: I wore face masks and used sanitiser on the planes and public transport; insect repellent 24/7 to avoid mosquito bites and risk of lymphedema; kept the Ibrance in the safe.
My neuts were low 2 months running so my Ibrance dose was reduced from 125 to 100. Since then, the only times the neuts have dropped were when I've had covid boosters just before but they were back up over 1 the next day so I still got the pills.
Whenever I see a registrar (junior) oncologist they make a comment about low WBC but the nurses on the chemo ward know it's a side effect of the treatment and they would be more concerned if they were too high.
You'll be on one treatment or another for the rest of your life so I think you have to decide how you want to spend the rest of your life!
Well it sounds like I’m the only one commenting so far who’s living a “Covid-cautious” lifestyle. I avoid all indoor spaces where others are unmasked (restaurants, bars/cafes, concerts, movie theaters, museums) and just do essential errands masked. Socializing is masked if indoors, but mostly outdoors or virtual. No airplanes or trains, but I drive for road trips. Having followed the scientific studies on the long-term damage even a “mild” case of Covid can cause later to cognitive, heart/vascular, and other body systems I don’t want to risk compromising my capacity in my remaining few years. When I was on Ibrance my WBC hovered just over 1 but I’m on IV chemo now with a WBC booster.
That's basically how I have been living but I am out on hiking trails so I get exercise.. I joined a gym for a brief time but it was just too far a drive for to work out on a regular schedule. My sister in law visited us over the Christmas holidays and she had been with her son who had a flu the evening before. Sure enough, 3 days later I became very sick which I associate with having her in the house. So I'm careful about company, most people I do not want staying over because of exposure. I definitely feel like I'm still in the Covid era but at this point want to get out and enjoy my life.
Hi Artesa - I’ve been on Ibrance for a little over 3 years and my neutrophils have mostly fluctuated between 1.0 and 2.0. There was a 3 month period last year where they were at .9 and I’ve been told that’s where Oncs start to watch for the necessity to make a change in dosage, etc. Having such low counts consistently as you describe means your immune system is very compromised and along with the transplant and susceptibility to viruses like you’ve had I would be extremely careful if you plan to travel to mask up, wash hands frequently and avoid any crowded situation as much as possible.
My husband and I went on a cruise in 2022 after Covid had settled down quite a bit with 4 other family members. All had been vaccinated and boosted and we took as many precautions as possible and all of us got Covid by the end of the week. Mild cases but nonetheless.
I think we all have to find a way to enjoy life but knowing that these drugs cause our immune systems to tank, have to be extra careful. Hoping you find a way to do the things you want to do…
thank you for your response Gingerann1! I do think it will be a little harder to travel since I had the transplant and now this. It will be good to venture out besides going to the supermarket and library. We go for hikes in the woods frequently but we both miss being around some people. I plan to curtail any activity during flu season like late fall and winter.
Did you take Paxlovid when you got Covid? I’m wondering if anyone on Ibrance who got Covid took it and if so, how they were thereafter.
I’m with Kaiser in California and the oncology pharmacist said not to take it if on Ibrance as it increases the strength of the Ibrance to the point of being dangerous. My oncologist does not agree. Very frustrating not to have a definitive response to the question. Curious if any others have heard this.
I’m about to travel to Europe for three weeks and I will begin a new Ibrance cycle at the same time. Have never heard of stopping it for holiday if going abroad so I’ll ask my oncologist about doing this. I’ve thankfully been stable since diagnosis in 2019 so she may agree to it. Would be good not to worry about diet last week on Ibrance when my WBC’s begin to drop. I’ll be in Sicily the whole time and unsure of their medical system.
When I got Covid Paxlovid was just being prescribed and my GP did not want to prescribe because of the lack of data so we just decided to treat the symptoms and that worked well for me. I also stopped my Irance for 1 week but when I had my next Onc visit he said if I got it again that I did not have to stop the Ibrance.
We just got back from traveling to the Dominican Republic In Feb and I did not stop taking my meds. It was only for a week though. Definitely check with Onc for longer trips and be cautious about larger groups when not outside.
I have been NED for over 2 years now so that may play into everything as well.
Thanks so much. Very helpful. We will mask up and not eat in airport or other restaurants. It’ll be warm enough in Siciky to dine outdoors.
My oncologist won’t take me off my next cycle of Ibrance for the trip as she claims there is no scientific proof that we are less at risk without it. 🤷🏻 So I’m hoping all will go well. Many thanks again and all best. KS
My oncologist wears a mask during our visits. My primary care physician wore a mask during my annual exam. Both advised me to avoid crowded areas during times of high respiratory illness and spread and to wear a mask if I must be in a crowded area. Still able to live my best life. I wear a mask when in crowded indoor space but avoid crowds when able, wash hands and always have hand sanitizer available. Travelled by plane over the holidays using those precautions without any problems. Last year I travelled to the Middle East while on Ibrance and Letrozole. My oncologist had me discontinue the Ibrance 3 days before I left and resume when I returned. I stayed on the letrozole. I love enjoying respiratory health and have not been sick.
One friend, not a cancer patient, was recently released from the hospital having suffered through bacterial pneumonia where she needed an ice bath to bring her temperature down. A second friend, who is a cancer patient, was readmitted to the hospital last week with the flu and 104 degree temp.
I have no desire to suffer from a respiratory illness while undergoing IV chemo 😩🤢.
Definitely discuss travel with your doctor given your individual medical history.
Thank you for sharing. I'm amazed that you traveled to the Middle East and never thought of coming off the Ibrance to accommodate travel. Of course I'd never change my treatment plan without my doctor (oncologist's) advice. All the best to you!
Yes my oncologist had me come off the Ibrance but stay on the letrozole during travel. He also advised buying the best most comprehensive travel insurance available.
I'll bring that up to my oncologist when I see her. We'd like to take a train ride through the Canadian Rockies and I think holding the Ibrance would makes sense. Even on my week off it takes a few days to reach 1.
One more thing in addition to discontinuing the Ibrance during travel, while staying on Letrozole and buying the best Travel Insurance, he wrote a prescription for Paxlovid. He had me pack Paxlovid along with antibiotics. Prior to the Pandemic and my MBC diagnosis I travelled to many countries, the infectious disease specialist who administered my vaccinations always had me pack antibiotics and malaria pills as needed.
These days the quality of medical care and hospitals of where I will be is critical. My oncologist said he would not approve of travel to places where he is not confident in the available medical care or hospitals. He is right.
Hopefully your oncologist approves and you will have a blast on the train trip. 😄
I am wondering and inspired by all the travel responses.I am wondering if those of you traveling are a bit younger than some of the rest of us. Now 79, my husband reminded me this morning that we would have been traveling to Japan today for a long cruise around Japan with many exciting tours, etc . I guess we have been fortunate and active seniors. Now we are just waiting to get into a groove with a constant plan of treatment. I think it will be bye bye to Kisqali if my Petscan in May is not positive. Then onto other drugs that might be more difficult to carry on one’s daily activities with. Hopefully that is not the case .
I am 65. Was on my way to Japan the first time I had breast cancer but had to cancel. Travel Insurance reimbursed the full cost of the Japan trip. Travelled in my 20s, restarted travel in my 40s. The pandemic and then MBC curtailed it. I landed at JFK on my way back from Africa the day they started screening arrivals from China for Covid. The rest is history…..
I'll be getting my post-Kisqali (after 4 rounds) scan in May, too. I am 76, almost 77. ..🤞 It just occurred to me that I might want to travel, a little late. I have a summer house on Martha's Vineyard, and I just go there without thinking about anything more novel. I have not gotten COVID or anything else -- until this month, when I got 3 viruses at once, a cough, a cold, and a stomach bug. Now I am being more careful.
That's what is so puzzling. Getting 3 viruses in a month.. you wonder is it your immune system or is it the prevalence of viruses? I have two friends who work with school kids and they are constantly getting colds, flus and different viruses so there is a lot out there. When I got RSA no one in the region had it so my doctors were puzzled. Reading this forum I admire everyone's spirit for living as they had been but using more caution such as wearing masks, using sanitizer, avoiding large crowds.
I have a theory about my getting 3 viruses at once. I have hardly gotten sick since I got mbc, even though I have been on meds before that depress immunity. Now I am on ribociclib, which does, and exemestane, which doesn't. Recently, I have started taking allergy meds on a regular basis. I always just put up with constant congestion, and only took something if I got a headache, hay fever...I saw someone subbing for my primary doc and he said I really shouldn't live like that, mouth breathing, etc. I started taking Zyrtec and using Flonase. It was great! Then, after I had been on ribo and exemestane for a bit, I remembered that someone on here had said look out for interactions. On drugs.com, it said that ribociclib (Kisqali) interacts with one of those, and exemestane interacts with the other. I stopped taking both. When I saw my oncologist, she didn't know (or care) and just said, well, take Claritin. I would have to look that up, and she had suggested it before for bone pain, and I didn't like it. So I did nothing. The thought is, and the pulmonologist agreed, that I set myself up for the cough virus (first) and then the cold virus by having all this gunk in my bronchia. (My lungs were clear.)
I was angry that not one of my many docs would help with this. I finally asked at my very busy Rite Aid pharmacy. A really nice pharmacist had two ideas and wrote them down for me to look up, a nasal spray and an antihistamine. They do NOT interact with exemestane and ribo. I got around to buying them after a while, but haven't taken them. I am now on two things for my atelectasis, and I just feel enough already.
Sorry for the long saga. It is just frustration that my oncologist doesn't know what meds I am taking, including over the counter, that might conflict with the cancer meds she is prescribing, and no one would take the time to help me with this. And maybe that set me up for the infections.
a good pharmacist is valuable to consult with, many OTC meds do interact with our medications, for instance I was advised never to take prilosec (or nexium) with Ibrance and it can increase levels of Ibrance. However, Pepcid was ok. . that was a pharmacist from the specialty pharmacy who reviewed my meds with me. Both are over the counter. You can google Ibrance and see if it interacts with other meds including over the counter , quite a few are listed .
You have a great oncologist. Mine will not prescribe anything prophylactically. She rarely asks about my holiday plans if i mention my travel. Thank you for sharing such helpful information. All best to you. KS
He really is great. I went to him for a second opinion and never looked back. He is internationally renowned. The best part about him is he is always extremely hopeful and encouraging. He has an amazing sense of humor. People would be surprised if they knew how much the care team and I laugh and laugh during our visits. He was a godsend 🙏
I have been encouraging people to post both docs they found to be sub-par and the excellent. We need to avoid the former, and switch to the latter. Within reason.
Oncologists who we click with will vary from person to person, it is a team effort. It takes two, as I am sure care teams see their share of difficult patients. I believe those patients would not want to be named as subpar by their doctors on social media. My care team members are a dedicated compassionate group of people. You and your care team are literally in a life and death struggle together. If you don’t click with your oncologist, seek out another one. I will leave rating doctors to healthgrades.com. Just as you enjoy anonymity on this site, so should I, my doctor and my care team. I absolutely would not support naming and shaming doctors on this site or any social media site. Don’t think their attorneys would either…Good luck with that ☺️😉
There are people who have had fantastic experiences with really good docs. I remember one at Dana Farber in particular, who was named here.
There are others who have really missed the boat. Yes, life and death. No ignorance allowed.
I will remember to ask in private chat in the future. Just thought it could benefit everyone, and what doc would mind being praised here, as you did. Internationally renowned, sense of humor. You want to leave that a mystery? Too bad.
You are a great researcher and will be able to identify the best cancer centers and doctors using approved public information. Yes correct I wouldn’t share any information which could possibly identify me publicly or privately. Best of luck in your search. 😄
When I was on the max dose, my ANC was .5 (severely compromised). Of course, I didn't like that but the oncologist seemed unphased. But then COVID hit and I didn't think an extremely low ANC was a good idea so I made them dose reduce me. Now that I'm on the lowest dose, my ANC ranges from 1-1.5.
During the past five years, I have gotten sick twice: COVID and the flu. In both times, the oncologist withheld Ibrance to boost my counts. I think it was a good call because both respiratory illnesses were brutal for me (103 temps). So withholding Ibrance allowed me to heal.
Regardless, I travel extensively on this dose (to developing countries for work and otherwise). But I do many things to keep my immunity high and aside from Ibrance, my respiratory system has always been robust.
Hahaha, you have no idea! Since Ibrance, I've travelled for business and/or pleasure to: Guatemala, Canada, Greece, Fiji, Kiribati, Samoa, Nicaragua, France, Switzerland, Scotland, Lesotho, and South Africa.
Funnily, of all places, I only got sick coming back from Switzerland (caught the flu on the flight back, but had been climbing the Swiss/French Alps previously). The plane ride experience has encouraged me to now mask on planes.
I also strategically plan my travel to make sure I'm robust. I don't like travelling on my last week of Ibrance (but obviously, I have to sometimes).
amazing! and Switzerland and Canadian Rockies are the places I'd love to see. You must have a strong constitution to go to all those countries and do so well! More power to you.. I agree with you to try to avoid travel on the last week of Ibrance.
Yes, I am robust I take a strong mind, body, and soul approach. I exercise (weight train and yoga) on a daily basis!
But, by the way, because of COVID, I didn’t travel from 2019-2022 which coincided with the first three years of Ibrance.
Sometimes, it takes time to situate yourself!
And you should definitely go to the Canadian Rockies (Banff was my Canada trip) and the Alps! There is something about the mountain air that is so healing!
PS It’s me responding from my iPhone. It looks like I have different usernames on here 😂🤣
I would like to say live your life, travel . . . It is extremely rare for a low ANC to cause Neutrogena fever on these meds. Your risk for infection is increased. Plane's and terminals are especially risky for infection.A low ANC is usually easily corrected with an extra week off the med and/or lowering the dose of Ibrance (people do just as well on 75 MG as on higher doses - l did).
My advice is because of your history take everything l or anyone else on this site advises.
My advice is to sit down with your doc and talk thru this, even consider an infectious disease consult for an opinion.
When l first started that combo of meds l was living with a dog who had a serious c dif infection - l was freaking out and was lucky in that l could call an lD doc l used to work with - she calmed my fears, l followed common sense precautions, stopped being afraid of the dog . . . My history of course is not like yours so l urge you to see your doc, sit with the info kin your brain and in your heart and make your decision based on your personal quality of life and risk tolerance.
Wish you the best - let us know how it goes. Send pictures if you travel, please.
Thank you so much for your insight . I actually do have an appointment with Infectious Disease in May and plan to run some of this by her. I appreciate your comments!
Hello Artesa! I have been on Ibrance since June 2019 and so far so good. It has cleared my mets in the liver and LNs in my clavicle. Every year I travel with my family mostly Europe and across US states and thanks be to God i haven’t gotten any sickness from it.
At the beginning of the treatment my Abs Neuts were low, but as months and years went on, i felt like our body is so resilient, it has adapted and adjusted to my medication that I get to atleast have enough Abs Neuts to go on to the next course of Ibrance. (I do 125mg 21 days on and 7 off) So i suggest hang on to it during the start and see if it will improve.
My lifestyle has been fairly the same, a little fatigue here and there, joint pains from letrozole but nothing i had to take OTC pain meds for.
I try my best to keep active, take supplements and eat less carbs and sugar.
All of the responses have changed my perspective on travel. I can't be in this house with only a few places to go for running errands. It's a lot to digest as I was convinced I was basically staying home with maybe day trips. Now that you wonderful people have shared just how you travel and where you go, I'm feeling so much better!! Bev, you say you keep active and eat less carbs and sugar and that's where I'm at now. I hike or walk most days and just recently stopped desserts which I don't miss. I want more protein in my diet too. Thank you all for your responses!!
I was diagnosed with Mets in May of 2023. My original diagnosis was 2001. I love to travel and have continued to go whenever I can. I do have to plan around my injections once a month but have not been having any problems until recently. I went to NYC and went to a lot of crowded venues like Madison Square Garden and Broadway. Came down with influenza B and having a heck of a time getting rid of it. Off Ibrance until my symptoms improve. I will be more careful in future but have taken several international trips without any issues. Going on a Safari in September in Africa. Plan to mask in crowds.
It just goes to show you can pick up a nasty virus in NYC but fly internationally and do fine. Good luck and have a wonderful time on your safari in September!
I was diagnosed w MBC in November 2023 and am on Fluvesant and Ibrance 125. I began taking Ibrance on February 29 and have felt amazing. Unfortunately, I only got through one cycle before my neutrophils dropped to .8 and I had to pause for an extra week. I was really disappointed because it was only my first cycle and I am concerned about delaying any treatment. Again, I’m feeling great.
I had new blood work yesterday and my count went up to 1.4, so I am praying I get the call that I can restart today.
I travelled via air for a mini vacation to Seattle during the first 7 days off and did all the things.
I am going to a concert tonight.
I am letting how I feel guide my activities until my Dr tells me otherwise.
I am using other integrative health practices to complement my standard therapies and I believe they did help in boosting my neutrophils (along with time off meds). I say this because they are at the highest they been since starting therapy
I was started on Ibrance and Letrozole in 2019. Initially I took 125 mg of Ibrance and now I am down to 75 mg. Talk with your oncologist and your insurance company to allow a prescription for Ibrance to cover the time you will be on vacation. Normally, I only am allowed a monthly supply but due to my vacation, I was allowed an 'early' refill.
Normally I will mask when there is a high density of people i.e. waiting to be seated at restaurants, boarding aircraft, boarding trains, etc. On the airplane I usually use an M95 mask initially, otherwise, I wear a surgical mask. If there are a lot of people coughing, I keep my mask on. I have also found it important that my husband should wear a mask in certain situations to avoid getting covid and passing it on to me. I have slowed my pace down when traveling due to side effects of the drugs. I try not to get overtired. Still, I have gone to Europe at least once a year. Also, take self check covid test with you.
Maintain precautions that you feel comfortable with, but still enjoy life.
Thank you Symone, it's nice to hear you that you go to Europe at least yearly. Good idea about the covid test kits coming along. I think using a mask while flying is a good idea!
I had to drop to the 75 mg dose and at least 10 days off between as well, to manage my neutrophils. I was on it for almost 3 years. At that time I was working teaching at a busy YMCA and never got more than a cold! I suspect your recent infections might have had more to do with the many rampant infections of that type in the general public around the start of the year vs being on iBrance. I'd still travel, just take precautions
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I take a strong mind, body, and soul approach. I exercise (weight train and yoga) on a daily basis! 
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