Ibrance and social distancing? - SHARE Metastatic ...

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Ibrance and social distancing?

Greatday2 profile image
67 Replies

When I started on Ibrance my onc said to avoid crowds. To me this means theater shows, concerts, craft shows, etc. All of those places are usually completely full, sold-out, etc. It essentially means never going to them, ever! How many of you have eliminated going to these types of places?

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Greatday2
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67 Replies
PJBinMI profile image
PJBinMI

I've never been told to avoid crowds, but I was diagnosed way before Covid, and I guess it makes sense now. I don't go anywhere except medical appts these days. I'm an introvert so not socializing doesn't bother me the way it would an extrovert!

Greatday2 profile image
Greatday2 in reply toPJBinMI

Thanks for replying!

Lilywallytootsie profile image
Lilywallytootsie

I was diagnosed before covld too and was never told to avoid crowds. I go to events and if someone is coughing close to me, I put a mask on. I do get all of the vaccinations and stay up to date on them. Blessings, Hannah

Greatday2 profile image
Greatday2 in reply toLilywallytootsie

Thank you, Hannah. That sounds like a good approach to this.

Merma profile image
Merma

It depends on my blood counts. When the wbc are above 2.0 and the neutrophils are above 1.0, I just wear my mask and go about my business - which, for me means also ok to swim in public pools. When the wbc are below 2.0 and/or the neutrophils are below 1.0, be cautious AND no public pools. I’ve been on Ibrance for 6 years. The worst blood counts were because the dose needed to be lowered.

The way we deal with movie theaters is to go to matinees. We live in LA, so many social activities with our friends can be outdoors.

Greatday2 profile image
Greatday2 in reply toMerma

Thanks for replying. That sounds like a good plan.

utahsara profile image
utahsara in reply toGreatday2

I was also told by my oncologist to avoid crowds, because of WBC counts and Hemoglobin levels, because of possible infections caused by persons being sick in those crowds like in a sealed airflight, cruise ship, sold out concerts, packed movie theaters. I'm just careful when out and about, still do road trips and some lunch and dinner dates as long as the eating place again is not packed full with people. Been on Ibrance 100 mg now 7 cycles, Pet scan shows remarkable changes as to Met tumors being reduced.

Nocillo profile image
Nocillo

I won’t go to a public pool, but I go everywhere else with a mask and hand sanitizer!

Greatday2 profile image
Greatday2 in reply toNocillo

Thank you. I am going to start wearing a mask for this flu season.

Dflur profile image
Dflur

that’s very… I’ve been on ibrance, 5 years, no one said anything like that, and I’ve never read anything like that?

Greatday2 profile image
Greatday2 in reply toDflur

Thanks for sharing that!

utahsara profile image
utahsara in reply toDflur

Really surprised they didn't mention to be careful of crowds, as in my case. a family funeral and a few people coming up to me to console me ended up passing an infection that put me in the emergency room and without blood transfusions, I would have died.

Hazelgreen profile image
Hazelgreen

I think your oncologist was being over-cautious! S/he might have advised you to check on the strength of your immune system through bloodwork as others have noted here, and take precautions when you should. Life is for living; otherwise, what's the point?

Greatday2 profile image
Greatday2 in reply toHazelgreen

Thank you :)

LDR1 profile image
LDR1

Ibrance (and many other cancer meds) weakens your immune system. So in general you’re at higher risk of severe impacts from any virus or bacteria you might pick up in a crowd. And now with Covid the stakes are even higher given it’s ability to cause long-term damage to brain, heart, lungs etc. it’s up to each person how to respond to these risks - as you can see in this thread the responses range from “live your life” to “I never go out.” My view is a high quality mask is always a good idea when out in public these days!

Greatday2 profile image
Greatday2 in reply toLDR1

Thanks. Yes, I've noticed that is a large range of responses.

Beryl71 profile image
Beryl71

I did to start with as I was diagnosed during the pandemic. Now I live a normal life but use a mask in crowded places. X

Greatday2 profile image
Greatday2 in reply toBeryl71

Thanks. Sounds like a good idea for me too.

Crazycocker profile image
Crazycocker

I was also told to avoid crowds as I was diagnosed just as covid started. I was even told not to touch my husband's and son's cutlery! I have to say my nuetrophils were always around 0.3-1.0, my dose was lowered but my bloods have always struggled to get back up. My time off Palbociclib has been extended to 3 weeks off and I still only reach 1.3 -1.8 after 3 weeks off. So I now live my life, if i'm uncomfortable when out or feel tired on my weeks on palbo I either stay at home or I wear a mask. Friends and family are great and if anyone is feeling poorly we re arrange. Go by how you feel, book the tickets, but buy the insurance. if your happy to go when it's time for the event then go, if not don't. I'm coming up to 4 years on ibrance. Wishing you all the best x

Greatday2 profile image
Greatday2 in reply toCrazycocker

Thank you. That sounds like a good way to handle it :)

bikebabe profile image
bikebabe

I was cautious at first and wore high spec masks with valves and am up to date with immunisations. Despite this I’ve had covid- twice - first time was walking uphills within 2 weeks, second time made me rough for about 5 weeks. This has made more blasé and willing to take risks. I wear n95 mask on public transport and in enclosed spaces ie health facilities, less so for theatres, concerts unless very confined. I prefer outdoor events but it doesn’t stop me doing stuff even when wbc, neuts etc have been low. BUT we all have different tolerances and our bodies respond differently. I’m more susceptible to insect bites / abrasions so you have to decide what risk you are willing to take as covid could be more disastrous for some folk.

Greatday2 profile image
Greatday2 in reply tobikebabe

Thank you for your reply. I appreciate it.

Petmatt profile image
Petmatt

I was cautious at first but now am going to the theatre and cinema quite regularly. I am careful where I book my seats, usually near an exit and aisle seat with no-one behind me. Theatre does get well booked at times but I go to the cinema when it's quiet and the seats are big. I'm enjoying going to these so much that even though my wbc is always only just above 1.0 I need the mental boost. I do have the recommended medical masks on me and don't hang around. I'm careful wherever I go nowadays

Praising profile image
Praising in reply toPetmatt

Do you get very fatigued with being at 1.01

Greatday2 profile image
Greatday2 in reply toPetmatt

Thanks. That's a good suggestion for booking the seats!

I'm on Ibrance and haven't worn a mask since restrictions were lifted here in the UK. I go to the gym, cinema, eat out, meet up with friends and family, and go on buses. I just keep away from people who are coughing, and wash my hands frequently. Oncologist has never told me to avoid crowded places. I want to enjoy life while I still can. Best wishes.

Greatday2 profile image
Greatday2 in reply to

Thank you for your reply :)

mackster profile image
mackster

I'm cautious about indoor crowds while on Palbociclib because of low neutrophils. That said, theatres & cinemas often have high ceilings & wearing a mask would probably cover the risk. I don't want to do planes, airports & larger hotels. I don't think it's worth the risk. Luckily I still live a relatively normal life.

Greatday2 profile image
Greatday2 in reply tomackster

Thanks for replying :)

worldtravel75 profile image
worldtravel75

when I was in Ibrance Covid was still around and I traveled the world. No problems. Now I am too sick to do that so glad I continued with my trips instead of isolating myself. Go out and live life!

mackster profile image
mackster in reply toworldtravel75

I agree. Go out and live life. I live by the coast which is uplifting. I love the theatre, cinema and live music events. I'm glad I did a lot of travelling and living overseas when I was younger. So I don't feel I've missed out. Always places to go and people to see, but I'm happy being a home bird these days. MBC has made me more aware, but it wouldn't stop me doing what I want to do. Love and positive vibes to all fellow travellers x

jersey-jazz profile image
jersey-jazz in reply toworldtravel75

Traveling is still my pleasure and part of my "design for living." , only now it is on a ship, preferably with a scooter. I am comfortable and taken care of where I sleep, eat and read with the ocean in my sights. Yeah! The last trip was with my boyfriend so there was less reading and much more socializing. My questionable health condition may have put pay to any more trips on ships where I need to be near others. Still, there is my motorhome which is easier to drive than my stick shift car and it offers a space for me that doesn't need to involve others.. I will be selling it after this summer as I never got to use it any time in 2023.

Greatday2 profile image
Greatday2 in reply toworldtravel75

Thanks for your response :)

Dragonfighter profile image
Dragonfighter

Hi, I was diagnosed at the start of covid so I did avoid crowds for a long time. I am careful out in public but I still go out a bit, with a mask and hand sanitizer! I get my vaccinations and am more careful during the winter when colds and flus and covid are circulating more.

Greatday2 profile image
Greatday2 in reply toDragonfighter

Thank you. I'm going to start wearing a mask - at least now during flu season.

BallerinaMel profile image
BallerinaMel

I have been on Ibrance since December 2020. During Covid I masked up, etc. I am living my life with no mask, teaching full time (90 students=petri dish lol) going to concerts, etc. I had Covid only once, and am not vacinnated. I never had the flu in my life, but have MBC. Go figure.

Greatday2 profile image
Greatday2 in reply toBallerinaMel

Thanks for your reply :)

mplevine profile image
mplevine

I have been on Ibrance for over 2 years and am immunocompromised. I always wear a good fitting mask to those kind of events and also at airports and airplanes. So far so good.

Greatday2 profile image
Greatday2 in reply tomplevine

Thank you. Good to know that this has worked well for you :) I am going to get my mask out again during this flu season.

CTGirl1962 profile image
CTGirl1962

Hi! Not me!! Life is too short. I take supplements for my immune system. I try to stay distanced as much as I can, but I go to the casino with my husband and friends, been to the Indy 500 and other places like the Space Centers, etc. I have plans to go to a few museums this spring and a NASCAR race in the summer. I’m a firm believer in living life to the fullest while I can. This is my belief. Best of luck!! You will figure out what’s best for you!!

Hugs,

Jody

Greatday2 profile image
Greatday2 in reply toCTGirl1962

Thank you for replying! Can I ask what type of supplements you take to help boost your immune system?

CTGirl1962 profile image
CTGirl1962 in reply toGreatday2

I take an elderberry and a probiotic/prebiotic supplement made by Arbonne. It is a direct marketing company and products can only be bought through a rep. You can go to their website and find a rep close to you.

I haven’t been sick in years (knock on wood), even with low wbc’s and neutrophils.

Best of luck to you!!

Jody

Totheriver profile image
Totheriver

I was never told to stay away from crowds either. I don’t go to places where it is really crowded and depends where I am in my cycle . Am more careful if I am just finished ibrance. I also have low counts most of the time and never feel 100% . I also have all my vaccinations up to date. Theresa

Greatday2 profile image
Greatday2 in reply toTotheriver

Thank you! That's a great idea to be aware of where I'm at in the cycle. Noted! Thanks.

FloridaNYgirl profile image
FloridaNYgirl

I was diagnosed in 2021, so after pandemic. But, I have never been told to avoid crowds. I personally don't like being in large crowds anyway. But I try to live my life everyday, I fly in crowded planes, even during holidays, because I want to see my children. I travel, go on cruises, etc. I have always been a proponent of handwashing to the point my family tease me. I also am fully vaccinated because I believe in them as well.My feeling is that you can get sick going to the food store, post office, or bank. Just continue to live your life, eat well, and rest. We can't live in fear.

Greatday2 profile image
Greatday2 in reply toFloridaNYgirl

Thank you for replying. I have been washing my hands a lot lately too!

FloridaNYgirl profile image
FloridaNYgirl in reply toGreatday2

It's the best thing you can do to prevent illness. Washing hands and keeping your hands away from your face. Stay well and do what makes you happy 😊

jersey-jazz profile image
jersey-jazz in reply toFloridaNYgirl

FloridaNYC Well done! I so agree with your way of living and am living my life in a similar way, as much as my weakened body allows. It is our joy and it is also our responsibility to use the precious gift of life that we are given.

mariootsi profile image
mariootsi

I have.

Greatday2 profile image
Greatday2 in reply tomariootsi

Thank you for your reply :)

Best521 profile image
Best521

Both my primary care physician and my oncologist told me to avoid crowded areas during high levels of respiratory illness and spread in my community. If I must be in crowded space, take precautions and use a mask. I want to live to continue enjoying my life so I do.

My cancer center monitors hospital admissions, waste water levels, ER visits, staff absenteeism and such for respiratory illnesses. Currently respiratory illness is high in my community. Based on the data they have a mask mandate for the foreseeable future. Me too.

A good friend, not a cancer patient, is in the hospital now with a severe case of pneumonia. I can’t imagine trying to deal with a severe respiratory illness on top of cancer side effects. Ugh 😩😫

Greatday2 profile image
Greatday2 in reply toBest521

Thank you for your reply. Sounds like a good approach :) I think I will start wearing a mask during this flu season.

Greatday2 profile image
Greatday2 in reply toBest521

Thanks. I am going to start wearing a mask during the flu season.

Best521 profile image
Best521 in reply toGreatday2

Agree better to be safe than sorry and avoid high risk situations when respiratory illness is widespread. It doesn’t mean I stop living. I continue to see family and friends, spend time outdoors, and otherwise enjoy life.

Pbsoup profile image
Pbsoup

I don’t know what other issues you might have or why you oncologist said that relative to your unique situation. That said I lived life normally while on Ibrance (minus the COVID lockdown) and still live pretty normally 4 + years in. I travel. Eat out Go to the symphony, ballet etc. I ride horses and shovel their poop. I am not anti mask or anti vax, but don’t wear masks

If you are more immune compromised than average then that’s different but otherwise I say don’t give up what you love any sooner than you have to.

Greatday2 profile image
Greatday2 in reply toPbsoup

Thanks! I am otherwise healthy :)

chemohawk profile image
chemohawk

I began Ibrance in 2016! So I wore a mask in every public place before Covid made it popular. I still wear a mask everywhere outside my house. I go to movie matinees where it's not crowded, and if I go to a play or some event that's crowded, I always wear my mask.

I broke out in hives after my first covid booster shot, so I can't take any more. I will probably continue wearing a mask regardless of any situation with viruses, etc. because my immune system with likely be compromised until my dying day.

Luckily, I really don't mind. I bought some copper infused cloth masks at the beginning of covid that stay in place really well when I talk. I went back for another supply. So I'm good to go with washable masks forever.

Best of luck to you!

Jan

Greatday2 profile image
Greatday2 in reply tochemohawk

Thanks for your reply. I am going to start wearing a mask, too :)

Liessie2014 profile image
Liessie2014

I I am on Ibrance and Letrozole , I have MBC in both lungs , I go to social events and on holiday , I wear a mask if I am around too many people and I constantly carry handgel , and I use a straw to drink my alcohol lol. I have been fine , dont let this awful illness stop you from enjoying yourself xx❤️xx

Greatday2 profile image
Greatday2 in reply toLiessie2014

Thanks for your reply :) Sounds like you are enjoying life :)

Liessie2014 profile image
Liessie2014

I do try to do what I can , some days I feel tired and a bit flat , but so do my friends and family who haven’t got an illness 😀 lol , I get more sympathy because of my condition sometimes , but not all of the time 😂😂

Onie54 profile image
Onie54

my husband is always overly cautious with me 🥰. We don’t do many shows/restaurants but when we do he manages to get us tickets in the areas for disability so that we are at the back along a wall with no one around or too close. Same with restaurants where we try to go early to avoid overcrowded places. We always have masks handy just in case

you need to balance being cautious with living life too!

Hope this helps!

Susie

Greatday2 profile image
Greatday2 in reply toOnie54

Thank you for the helpful suggestions! 😊

Liessie2014 profile image
Liessie2014 in reply toOnie54

What a lovely caring husband ,it’s lovely that he makes sure you are safe , my husband wouldn’t even think of that 🤣🤣

in reply toLiessie2014

Neither would mine!!

in reply toLiessie2014

Neither would mine!!

Unicornuniverse profile image
Unicornuniverse

i don't avoid anything! I've flown to mexico and costa rica for yoga retreats, attended huge company conventions in CA, go to music shows etc..

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