I would love to know how careful everyone is regarding social distancing while on Kisqali. Are you going into restaurants, the theatre, museums ? I just don’t know how careful I am supposed to be. And how careful my husband has to be… we can mask up on supermarkets, but there is a limit to how careful we can be and not have a life. I would love opinions of those using similar drugs.
Once I get the Kisqali under control, then I will ask about travel.
Regards,
Janice
P.S. No nausea from Kisqali yet.
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jltorcz
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hi jltorcz , this is a great question that’s relevant for people taking many different cancer drugs, since many of them have the effect of weakening our immune systems and making us more vulnerable to severe impacts from Covid or any other virus.
Unfortunately here in the US our government and health institutions have basically given up and adopted a “let it rip” and “you do you” approach to Covid, letting it run rampant (1.2 million infections amd 2.000 deaths a week lately, among the highest levels of the past 5 years) while dropping all requirements for masking and isolation. That means that when you’re out and about you’re pretty much guaranteed to cross paths with people who are infected. It’s surreal to see this even while more research comes out showing that Covid can damage your brain, heart, circulatory system, or disable you with long Covid - and that the risks of these impacts increase with each infection.
For me as a cancer patient, it makes sense to to protect whatever quality of life and functionality I can during my remaining years. If I only have a few years left, don’t want to spend them lying in bed with long Covid or wandering around with brain fog if I can avoid it. So I personally am very “Covid-cautious.” I wear an N95 or KN95 mask when indoors with any other people (groceries, errands, medical appointments, family visits). I do not eat or drink indoors with others - only outdoors. I avoid restaurants, cafes, bars, concerts and museums plus planes, trains and subways. I request all medical providers to mask up when interacting with me. Is this awkward and limiting sometimes, and has it changed my lifestyle? Yes. Is it worth it for me personally? Absolute yes,
My husband and I both take meds that reduce immune response. Our life is much like yours. Mostly staying home, visiting only outside, wearing a mask if going to the grocery store, etc. I joke that we're really boring but that's better than being really sick. 😷
I’m on Ibrance and since my immune system is weak my husband and I are still living like it’s 2020 and masking whenever we go places. We don’t eat in restaurants-just do take out. So far if we’re in a situation with other people we’ve avoided picking up any kind of illness. We haven’t even had a cold since 2019 so I know masks have protected us, in addition to having all the shots. Some of my friends who don’t bother with masks have had Covid and other respiratory infections multiple times so to me it’s worth it to take every precaution I can. I am also surprised to see doctors and nurses not wearing masks. Seems very risky to me but to each their own.
I've had nine cycles of Ibrance. I go about my life as normal and do not mask. However, I try to keep one at hand in case I'm in an enclosed area with a cougher. I have traveled by train and plane and always mask in those situations. I have traveled extensively and continue my life as normal and have not had COVID or a cold since starting medications.
For what it's worth, my oncologist didn't seem very concerned about masking. Her suggestion was only for large crowds (sporting events, concerts).
I would do whatever makes you feel most comfortable.
by the way, how are your neutrophil numbers? I am having trouble getting into a regular cycle schedule s my neutrophils have gotten too low to maintain the normal schedule of treatment.
I am on Ibrance. I had Covid in March 2020. I have had just the initial two shots and was so sick after each of them that my primary care doctor told me that my immunity was very strong. We continued to test this for about 18 months and my numbers always were strong. These days I do not ride mass transit at all. I am out and about and I do not mask. I work from home (closed our NYC office after 24 years in the summer of 2020), so I am not in daily contact with people. My book group and others who come to my home are all concerned about their health as well, so people do not come over if they are sick. It's interesting how people have become more cognizant of that!!! And a friend who is a widow remains very concerned about Covid, so last week we met outside when she came over. For my appointments at Sloan Kettering, I always mask up. But I have foot drop and I typically trip when I am wearing a mask as I cannot see my feet. One nurse said oh great, she is wearing a mask, but is going to break something tripping out of here. I laughed, but agreed.
I was dx in 11/2019 so before Covid . I was just a few months on ibrance and faslodex when Covid started ! I've now been on Ibrance and faslodex for 4 years and a few months . I am still working (I sell real estate ). Prior to vaccines I was extremely careful . I live in the Seattle area where most people take Covid seriously and wore masks. I am fully vaccinated . I am careful and wear a mask when I'm on a plane and during the holidays at larger retail stores (Costco , target , nordstrom). I have traveled quite a bit in the US and also to Mexico , Panama , France , Portugal and Spain. I have worn masks - it's hard to wear a mask on 10 hour flights but I do .
I came down with Covid march 2023 but it was a very light case - no fever and felt like a cold. My husband has not had it yet .
Re low neutrophils, that was a challenge for me in the beginning . I've had 2 dose reductions . However, noticed last year that if I have blood work in the afternoon , my neutrophils are higher . I used to go to the clinic at 8:30am for blood work and my faslodex shots so I could get them over with . My oncologist allows me to start the next cycle of Ibrance of my anc is .80 or higher since ive never been sick from low anc and since ive had afternoon appointments my anc has been above 1.0 - yesterday it was 1.20
You need to do what makes you feel comfortable . Once you are used to kisquali you might feel like scheduling a small cruise
I was on Kisqali as my first treatment for around 3 months and then switched to Ibrance for around 2 1/2 years.
I mask up to go to the supermarket and try to eat outside or at a place with well spaced tables if I eat at a restaurant.
I've had 5x covid vaccines but my oncologist told me not to get one this flu season and to get the annual flu jab instead.
I try to remember to sanitise my hands after using shopping trolleys...handrails etc...but I think that's usually where I catch stuff from.
I've had covid 3x and had the last bout before Christmas, followed straight after by a cold....which wasn't great! It took me 2 months to get better. Although I only tested positive for around 5 days I still had symptoms for weeks later.
I have travelled on 5hr flights 4x in the last few years and I didn't catch anything ....but wore a mask on the plane.
My wbc are usually about 2.5-2.9 at the end of the Ibrance course.
My advice with Kisqali is to make sure you drink lots of water daily (at least 2ltrs)...and get your oncologist to keep a check on your liver enzymes when you get your blood work done. I had no nausea while I took Kisqali...but my liver enzymes went too high and I had to stop....many have had, and continue to have great results with this med...so don't be put off as we all react differently.
I still mask up indoors in public places. I use hand sanitizer once I’m in my car if I’ve been shopping or in theater etc. Occasionally we eat in restaurants and I wear a mask until my food comes out. I’m still very leery of house guests who arrive on a plane, but so far so good. I’ll continue to mask up. I also don’t really wear makeup anymore due to living in a warm climate, so I feel a mask lets me look ever so slightly better!🤣🤣
I’ve been on ibrance for >2 yrs and am upto date on all immunisations. . I used to be so cautious and mask up but got covid twice anyway so I now only use masks occasionally in high risk places such as GP surgery, crowded public transport, theatre/cinena and when family members are ill. I’m slightly peeved that there are no daily public indicators of rising levels of infection
I'm on Kisqali and just get on with my life as normal as don't want to miss out on life although I havnt been abroad on holiday since my diagnosis as do fear getting ill such a long way from home and now I suffer from fatigue so I'm.limited in what I can do now x
I don't post here very often, but I saw this topic and wanted to chime in.
I was on Ibrance from 2017-2021-- including the beginning of Covid. When Covid started, I began avoiding crowds-- no restaurants, no church services, etc. I masked everywhere I did go. My WBC's stayed around 2.0/ ANC around 900.
Fast forward to now. I am on Lynparza- a PARP inhibitor for the BRCA mutation. My WBC's are still around 2.0-3.0/ ANC around 1400. I still am cautious. I have not eaten in a restaurant in YEARS. And I pause going to church in Winter/Cold, Flu ,Covid, RSV season. I still use masks when out and about. And wash my hands all the time. I do not like to eat in public, as I would have to unmask and make sure I wash my hands before partaking in the food.
I do get jeered by my "friends", but I rarely get colds, and have had Covid just once in 4 years.
I feel that cancer is a war, and I don't want to lose the war by some virus/bacteria.
Everyone has to do what they feel is right for them.
Oh, and by the way, people DO get out with illnesses. I can hear the coughing, snotting, sneezing on the online live stream of my church service. STAY HOME WHEN YOU ARE SICK. GOOD GRIEF. That is why I stay inside a lot. People.
Me too. I still wear my mask everywhere. I do not let my guard down. People say covid is just a bad cold. But I do not want a bad cold. I have been fighting with MBC since 2019 then covid came and I had just returned from the states from visiting my parents end of Feb 2020, JUST IN TIME. Seeing staff at restautants touching the brim of glasses with their hands, people coughing, sneezing and doing nose blows using a finger to cover one nostril and to the wind, blows my mind. I just do not get it. I wear a mask all the time. Double it on a plane, sanitize my surroundings and carts in stores, bought a car so I did not have to take public trans because I do not use my scooter anymore. If I have to, I always hold the pole or railing with a tissue. I do not care with other people think I want to live. I can't remember the last time I ever had a cold or the flu. If I go to the symphony or places like that I still ear a mask. I still keep distance from people at stores, etc. Two years ago I took my parents to the Nutcracker for x-mas and people were coughing around us without covering their mouths and you could hear the hacking throughout the entire theater. Better be safe that sorry. On a plan, I order special low salt and get it before others. I still wear a mask and take a bite and lift the mask. With everything that is going around and no public news stating what is what, why take a chance? You can still check here worldometers.info/coronavir... - Feb 13th for an example, Russia 27k and the US at nearly 13k. Stay safe.
Hi. I've been on Ibrance since August 2022 and haven't worn a mask or social distsanced since restrictions were lifted here in the UK. I eat out, shop, go to the gym, travel on public transport, and live life pretty normally. I just wash my hands frequently and stay away from family and friends if they have colds etc. I caught covid just after Christmas, oncologist took me off Ibrance until I tested negative which was after 10 days, was not given an antiviral. When I first started on Ibrance oncologist told me not to wrap myself up in cotton wool. I'm determined to enjoy life as much as I can while I can.
I think it really depends on you! I started Ibrance almost five years ago and I am currently on my 60th cycle. I was on the MTD till COVID. Now, I'm on the lowest dose (75 mg). My counts are at moderately immunocompromised levels. For the past five years, I've gotten COVID once and the flu once. But aside from that, I've been well (and also haven't had evidenced active disease in years). I travel extensively on plans, and to developing countries (for work) like Guatemala, Fiji, Kiribati, Samoa, Lesotho, South Africa but also fun like France, Switzerland, Scotland, Greece, Canada, Nicaragua, etc. While on travel (and here in the States), I go to the theater, concerts, restaurants, markets, conferences, etc. Start cautiously in the beginning and maybe wear masks, but then do all the things you enjoy doing if you can manage
I am a little unnerved by the responses above. I go to theater, movies, dinner out, use public transportation. I mask at the hospital (where it is required, but half the people ignore it) and try to avoid crowded elevators. I have never gotten COVID.
I did get a viral cough that I hear is prevalent and lasts a long time. I am not contagious at this point yet it persists. I think it is handy because when I am around unmasked people, I can do a hacking cough and scare them. It doesn't always work. Now I am worried about how I am living. I just started Kisqali. Before this, I was on treatments that do not decrease immune response. I had a big reaction to flu shot and COVID vac (but not to RSV vaccination) so I think my immune system was strong before now.
Corrina 97, I am glad you mentioned that fatigue limits what you can do. I have been getting annoyed with myself, thinking I have become lazy, because I can do so little. I had a great morning today -- exercised outside with a friend for an hour, had lunch at a restaurant outside, then slept. Now I am back up to get work done, but I think I am going to lie down again. This is bothersome, getting so behind on necessary tasks.
I always wear a mask and don't go to restaurants. There is covid, the flu and rsv around. Don't want to be maskless in a room full of people eating with no masks.
Well, there are plenty of different opinions on this subject. I only hope that I will be able to stay on Kisqali now that I have begun it. I hope my neutrophils don’t go down to unacceptable numbers, EKG ‘s are normal and there are no other contraindications for using this drug. Then I can start testing my social distancing activities. I guess I do plan on masking up for sure, but choosing to eat with friends in very uncrowned restaurants might be be a plan as well.
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