My Husband, My Life, My Love, My Family, My Cancer
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Candy, I'm a lurker here but I'm in a clinical trial which studies the effect of cancer treatments on Covid immunity in people up to date with vaccines. They found that active radiation treatment and taking immunosuppressant drugs (like prednisone) are the only things that have an adverse effect (not chemo, surprisingly.) However, if you have lung mets or lung cancer you are in a much different situation from someone with bone mets or stomach cancer. Thanks to a rare side effect of post lumpectomy radiation I have one lung that is fibrotic and partially collapsed so I have to avoid anything that could cause this to start up again in my remaining good lung. No respiratory infections allowed is one of three rules my pulmonologist gave me.
For those coping with lung problems my doctor specified conditions which must be evaluated: ventilation, crowd density, masking and disease level. Even while masking dining indoors, concerts, gyms, church and crowded sporting events (indoors or outdoors) are out while art museums, eating outside and non-stadium outdoor sporting events (horse show or ski meet) are OK. If I have to take public transportation I wear a surgical mask on top of my N95. I ditch the mask if walking outside on my own but wear one if walking with a friend. Unfortunately this applies to family as well as strangers since even those who are vaccinated could be asymptomatic carriers. My husband and I just live the lockdown life and look forward to spring. I suppose it's no different from always carrying a change of clothes, using a cane or whatever else you have to do to deal with your own side effects.
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Candy...I got covid last december 2021.. I will tell you that my son is an OT Occupational Therapist and he got covid with an N95 mask , Face shield, and throw away paper scrubs on... so yea...honestly I don't think masks work well...I mean, if someone is coughing and sneezing or breathing literally right on you then I think a mask can help..but it definitely doesn't stop people from contracting illness.
Chicago...why are you saying that IV chemo doesn't lower white counts?? Is that what you said or did I read that wrong.? if thats what you said that is totally wrong...my counts plummeted last week on Gem/Carbo neutrophils and WBC and also they did on Trodelvy I needed neulasta
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Thank you everyone for taking part in the discussion. Please keep offering your suggestions/opinions.
Sadiesservant- I may not have expressed myself very well. I didn't mean the masks themselves caused the uptick in illnesses, but, as you said, the lack of exposure to typical bugs while wearing the masks. The public, in general, did not get exposed to normal germs there for a period of time, and thus we have a lot of illness in the population now. I am sorry I did not explain myself very well. My sister will wear a mask when around me, but she does not routinely wear them. So I think she was trying to say that wearing a mask for the past 2 years has not helped the population as a whole and may have actually hurt the population, as we are now seeing lots of illnesses.
Chicagoan- I too was on Ibrance for 4 years. Yay I got 4 years out of that treatment. I thank God I got a long time on my first treatment line. I don't know if I agree with the "suppression" of the white cells with Ibrance use, but that is neither here nor there. I took precautions while on Ibrance too. But now I am on Lynparza. No, it is not "chemo" but another targeted therapy, a PARP inhibitor. It is not IV therapy, but pills still. My total white cell count stays in the 2 range, and my ANC stays around 1500-- normal and better than with Ibrance, but at the low end of normal. I have not read or heard the "suppression" theory with Lynparza like I did with Ibrance so I am thinking that I am really considered immunocompromised now.
I do agree with the QOL thoughts, enjoying what time we do have. But I live in an area where people are not maskers or vaxers. My church congregation does not wear masks, and never have, even in the height of the pandemic. My Pastor has not even had his first Covid vaccine, to my latest knowledge. And going to an indoor restaurant would mean being in a crowded space with not being able to wear a mask, as you are eating. I am not a traveler, and never have been, so I am not going to be on a plane or train. I am a homebody by my nature. But doing the things I like to do-- church, eating out, going to concerts and indoor gatherings with my friends-- I don't feel safe doing anymore.
This is not a COVID issue, but also the flu, RSV, and any other respiratory illness that a person can get, and possibly be hospitalized for. Especially with our cancer status.
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Hi Candy. Heavens. No need to apologize. I think I may have misinterpreted and am finding this a very interesting discussion.
Maggie, I really appreciate your input. I’ve been uber careful since becoming metastatic for precisely the reasons you note. I was initially diagnosed with a significant right pleural effusion which is much less but now chronic. I only have about 50-60% of my right lung functioning so am mindful that respiratory infections can be a huge issue. Case in point, I went on a cruise in 2017, catching the bug that was making the rounds. It immediately turned into pneumonia - I’ve never been that sick in my life and had no history of pneumonia. 🤔 I took that as a clear warning not to get Covid or any other respiratory illness.
I agree that QOL is hugely important but don’t find it that difficult to remain vigilant. I’m still living my life (also pretty happy at home) and taking calculated risks as appropriate. The way I look at it, QOL if I am severely I’ll and/or dead isn’t that great. 😁.
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Pardon me if I am talking in circles as it is about my bedtime and my mind gets muddled this time of the day.
I am trying to swing back around to my original thought.
This is not just a Covid discussion, nor really a respiratory illness discussion. It is more about all contagious illnesses, though mostly respiratory, but could also be the stomach flu bug or any illness. But, I guess, mainly illnesses spread by respiratory vectors. For instance, the influenza kills thousands of people each year. Mainly the elderly and the ones with poor health. I would think we as people in active cancer treatment would qualify as high risk, even if we are not on IV chemo treatments.
So, do we live the remainder of our lives as "high risk" people? Maybe continuing to do things with family and friends, but always having to take extra precautions? Whether that be wearing a mask, avoiding indoor crowds, choosing to not attend a function if we feel the risk is too great, etc, etc?
For instance, my local news today was talking about a local tourist attraction now mandating masks again, due to the high levels of Covid spread in our area. The newscaster said that we may have put away our masks thinking that was history, but now have to get them back out. See, the public has mostly moved on. But... I will always have to keep these things forefront in my mind.... first do I go to the tourist attraction in the first place with the large crowds, and second I will need to wear a mask even if no one else does. I don't have the freedom of going back to "normal".
I know some here have moved on. They travel, go to activities, etc. They live their life as they did before the cancer diagnosis. I envy that. I have lost that innocence.
I think I am rambling. I am going to bed. I will come back here when I am fresh minded and reread my posts to see if I am correctly portraying what I am trying to get across.
Keep posting your thoughts. I will read them tomorrow.
Edited to say--- I think my original thought was that if I/we continue to isolate/wear masks, then I/we are not going to build up natural immunity that we get from being exposed to various germs. To build up that immunity we need to get out there around the germs. But that could be detrimental. We could get really sick. So it is a catch 22 situation. So your thoughts on that??
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Nicole-Sorry if I did not express myself clearly. I think low white blood counts due to IV chemo are extremely serious and I will be much more cautious when I am on that type of treatment. On Ibrance I have low white blood counts but the white blood cells are not destroyed as their are during chemo, they are merely suppressed and are able to rebound quickly.
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I wear a mask in grocery stores and other crowded places. I notice a lot of people my age (ancient) wear masks. I don't wear it around family or my book club where everyone is masked to the max. My health care requires a mask and the facility where DH is does the same for visitors.
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Candy - I was wondering the same thing last week, actually. I have to do these B12 injections and at the second one there was a child sitting practically on top of the tap-in screen hung on the wall, clearly with a potential case of Strep A. Like hey, mom, maybe move your kid over a few chairs? Its not like the waiting room is packed. We only mask in hospitals here, and it made me a little leery. Today I start another weekly round and think Ill be taking masks with me.
I only ever get sick if I have to be around children which, by extension, includes the office. Other than cancer I was never really one to get sick that often, but every time I did, it was from contact in the office. Now I never have to go in, so its been great! I don't mask on the Tube/bus or busy crowded places, though. I probably should, but haven't had any problems and now i like to think it gets me my daily (low) dose of bugs and germs to keep the immune system primed. Then again, if it looks REALLY busy (especially with kids) or I hear a lot of coughing, Ill choose to leave/not enter in the first place.
The last year or so OH has gotten low-grade ill after going out to bars/football matches/the office (rarely) and I think a lot of that was just his system getting back in gear. That or the really bad Peroni mass-produced beer everywhere seems to push and some jerk in your group always seems to order for their round - that would make anyone ill. Actually, he went to a game two days ago and hasn't complained yet about feeling bad (usually its the next morning), so hopefully he is over this re-acclimation crap.
Christmas was sedate here - I cooked up a storm and then hit the fatigue wall and had to lay down for a few hours. We had more fun watching the cats play with their gifts (squeeky mouse, high-grade potent silvervine powder, new lick-mats) than opening our own, and spent time in the kitchen together making mini beef wellingtons (OH loves these as its like doing a Lego I guess). Today Im going to attempt a vegetarian sausage roll using up the leftover mushrooms, spinach, celery sticks, and pastry I have in the fridge.
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Candy, the catch-22 situation makes sense. Being exposed to germs does build up immunity and thanks to vaccines most people, even many with cancer, can resume living a fairly normal life without becoming deathly ill. However, it is folly for people who are medically vulnerable to expose themselves to viruses and bacteria. In addition to steering clear of respiratory infections my pulmonologist warned me to avoid intubation and a long list of medications. If somebody else has anesthesia for surgery or takes Ibrance it does not affect my lungs, but in a limited space I have to inhale the air others exhale.
There is a segment of the population which will not have the freedom to return to normal. Sadiesservant's description of the pneumonia she was so ill with on her cruise brought back the fear I felt when I had severe pneumonitis and wasn't sure I could take another breath. I would prefer to be able to do more but will take any precautions necessary to avoid being tethered to an oxygen tank again. Those of us who are "high risk" will have to figure out how to interact with the rest of society while keeping ourselves safe.
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I have a nasty cold right now, persistent coughing, no fever or lung issues but just general malaise feeling.
I will be calling in sick to the cancer clinic and just try to nurse myself back to health and less depressive feelings. No reason for those, they showed up when I woke up.
I have laundry to do, that makes me happy, basic housework, doing the money making on the TV and playing videos on my computer. I did sleep fairly well though kept waking up every couple of hours, got back to sleep though. I am planning to walk for a half hour on the treadmill after meals. Beans and rice, bit of shredded cheese as well. 1/3 cup premade white rice. 2/3 cup, mix of pinto and black beans, will be baked again in oven at 425. Add the two, rice and beans on a plate, add wheat bran for fiber, shredded cheese to melt in microwave and add some steak and salt as seasonings, binding with small amount of mayo. Later meal will be similar, just going to use ketchup and mustard.
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Hello all. I am back after a good night's sleep. I reread all your posts, including mine. Good discussion.
I guess we just have to muddle through our future concerning this topic. I may start attending in-person church again in the Spring/Summer when the majority of illnesses are low, not gone, but lower. Right now, with so many illnesses around, I hesitate to sit in a service with unmasked, coughing people, singing, and shaking hands and hugging. And a church dinner, which is a potluck dinner (bring a dish and share), seems too risky--- unmasked, sitting around other unmasked people, and dipping into food that people has brought from their homes. I used to enjoy that-- food, fellowship, fun-- but that is something I don't think I can go back to.
I see a mental health counselor and she asked me this question- "what if your cancer worsens today, would you regret not doing some of these things". I have thought a lot about that. I can say NO I don't regret my choice to stay home. Sad, is how I would describe how I feel. That this is my reality now. I want to go back to the way it was. But, I don't "regret" not going to that church meal, or that lunch with a friend in a busy restaurant. Because I know I am doing the things to keep me from harm. As someone said--Sadiesservant?- QOL don't mean much if you are dead or severally ill.
I will continue to mask and stay away from crowded places. I will continue to practice good hand hygiene. I will do what I need to do to stay "healthy", especially since the cancer is stable for the moment. Especially during the Winter months with all the germs around.
Thank you all for your comments. We understand where the general public cannot, and has moved on in their lives.
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Nothing on the agenda, called cancer clinic and told them I was sick. Would see them the next time. Staying home. I still have an appetite so will make my milkshake. About 1/2 to 1/3 cup milk, 2 tbsps cool whip and one oreo cookie with small spoonful of the peanut powder. Very filling and enjoyable and not super heavy on the calories.
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Candy-678 - This has been an interesting discussion and I read all the posts on this last night but my mind has struggled lately, particularly in the evening, so I waited to respond. I don't have any answers. Generally I do not take any precautions. I have to mask at work because we are still mandated and when I am in any doctor's office or clinic for the same reason. Outside of that I don't really worry about whatever is floating around. That's been my general MO since all of this began. I feel comfortable going to church and the grocery store or anywhere else without a mask and didn't refrain from shared food or potlucks over the holidays. For reasons I can't explain I've never gotten Covid and haven't had the flu in years despite being high risk. My ANC is usually 1 - 1.3 and my white and red counts are always low from Verzenio. I've been on corticosteroids for several months. Inexplicably I have been just fine without a mask and so I have lost a little of my fear surrounding germs and airborne viruses. That said, immunity is a unique thing and it's my general belief that people need to do what makes them feel safe and comfortable.
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Candy, since moving to a rural small town I no longer mask in public except for going to the local doctors office where sick people are more likely to be and in crowded locations in big cities like El Paso and Houston. I use normal hygiene methods, no sanitizer and have rarely been sick (I was an outdoor mud pie making kid). I feel like I’ve found balance that I can live with long term. I hope you find what works for you too.
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Candy, I agree with you. I miss church but can't comfortably attend right now. I do go to other places but for some reason church also feels like I am not free to get up an leave quickly if necessary. That shouldn't be, but I have too many gut issues to not be able to run to the bathroom and avoid an accident. I have had a couple of "accidents" when I am out so I limit my trips. After six and a half years of treatment my body is not very controllable anymore. It is sad.
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Life is funny, isn't it? One doesn't know how things will work out.
Emac- Wow. You do not mask, or follow precautions, and yet you are fine. Maybe I would be that way too, if I allowed myself to follow that guide of living. Yet again, maybe I would not. When I was healthy, I only got a cold or 2 each year. I was not sick much. But that was a lifetime ago. Haha. I was thinking about it and I used to go to the doctor once a year for a checkup and was not on any prescription meds. Boy, that has changed. Now I have high blood pressure, had blood clots, have 2 autoimmune disorders, and have the cancer.
Intolight- This discussion has been about the germ factor, but I agree with you. I too have gut issues. That is another reason why I am concerned about going out with friends, especially with eating out. Sometimes I do ok after a meal. And sometimes I am not. I eat and immediately end up in the bathroom. Not too good if it happens in a restaurant or somewhere where a bathroom is not readily available. And I don't want the embarrassment of leaving a friend twiddling their thumbs as I am busy in the bathroom for up to an hour sometimes. Yeah, my 5 years of cancer treatment has made my body unpredictable anymore too. Another reason for why I am not social anymore. I would rather be in the comfort of my own home, and bathroom.
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I went for blood tests, appointment with new mo, and first immunotherapy treatment (Keytruda) yesterday . So far, no SEs. Hope it stays that way. My new mo was nice,asked lots of questions, answered all mine, and seemed well-informed about me and my case. He did remind me that I have had incredible outcome from treatments and few women with mbc make it to 7 1/2 years. He said that there are no treatments after this and asked if I have a sighed advanced directive. I do. I am aware of my position, and I talked about freely with my original mo, but for some reason it brought me down yesterday. I am not ready to die, and would like to live a few more year and feel good during that time.Next treatment in 3 weeks.
Candy, I know how you feel. I don’ go anywhere except medical appoints. I do have a dh, I am not alone, so that makes a difference. I have 9 grandchildren. Only one has not had except Two of them had it before shots were available and school was remote. My grandson had a part/time job and probably brought it home.The others got it when school was in sesssion but shots weren’t required, and no masks were required. Sixt hem of them have been immunized, The non-immunized granddaughter goes to the same school as her sister who has had it twice. They do not Wear mask
it’s New Year’s Eve. Happy New Year’s every one.I hope fora good 2023 for every on of us as well as major developments in treatments for MBC.
Blessings to all
Love and prayers from. Lynne
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50’s, no next treatments YET. While I hope you get a long time out of this one with minimal SE’s, I’m confident that something new is already in the works.
Happy holidays to all of you as well.
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Oh Mae. That’s exactly what I need to hear. How could I forget? The word Yet makes a world of difference . Thank you for brightening my outoo
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Lynne, as I mentioned before, you are one of my heroes on BCO! You have never given up and have done so well with whatever treatment they have thrown at you. We’re in similar places you and I but not done yet! 😉 I sent off the paperwork today for a clinical trials navigator. Let’s see where this goes. In the meantime, wishing you a marvellous New Year and sending a virtual hug!
Pat
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I have been reading all the posts while on our travels to Ontario. We made it safely here yesterday afternoon. (traveling through 3 provinces in one day). Wore my mask at all stops at hotel, restaurants and especially at service centers along the highway. With my family and friends I don't. Before I left my MO let me know my blood counts were below the 1.0 levels again so he has decided to reduce my Ibrance dosage to 75mg. Also allowed me to stop the Ibrance while I was away because my scans were all stable. I was ok with that but sometimes it's like a crutch where you don't know what will happen if you stop for awhile. For our Christmas present my daughter and fiance are taking us to Toronto on Friday to see a Raptors basketball game and spend the night. (will definitely be wearing a mask at the game!) I am so looking forward to it.
I do hope everyone enjoys the rest of the holiday season. I agree with Mae's "yet" comment. May it be sooner than later!
Thinking of you all.
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Welcome to Ontario! enjoy the game.. Toronto can be a great city, when it's not a stinky, crowded, traffic jammed mess... LOLOL.. the city I love to hate
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Hi all, my paint by numbers beach bar paintings are officially hung up! I’ll be finished by Sunday and ready for cocktails 😁
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Looking fabulous! Enjoy!
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Yay cocktails! Everyone will be at Mae's beach bar!
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Looks great Mae.
Living, welcome to Ontario, I am not far from you in London. Enjoy your stay.
On the subject of masks, I am planning on masking in the buildings public areas and in public. I have a horrendous cough and wheeze going on, ribs hurt from coughing and I place the blame on not masking up. I did call in sick for my Herceptin. I don't wish to experience this again. Been a few years from the last time.
Only thing that has not been affected is my appetite, not eating a ton of different food, still loving my magic bullet to make my milk shakes. Love adding bit of coolwhip, one oreo cookie, tsp of peanut powder and oreo baking mix for things like cakes etc. Delicious and very filling especially when mixed with 1/2 a cup of chocolate milk.
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Mae - looks great! When are you accepting guests😉😉😉😉😉😉. I can bring 🍹🍹🍹🍹!
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Well, I don't seem to be improving symptom wise. No fever or stomach issues, just the crackly breathing and coughing without shortness of breath. It is warm here so I will make a trip to Walmart to see if they have any buckley's as amazon is sold out of the stuff.
I started back to bed after feeding cats but decided against it and changing thought pattern telling myself it is just a cold, covid test negative. Going to do a couple of walks on the treadmill, that way if too tough, I won't attempt an outdoor walk. All the snow we got has melted so no danger of slipping. Making sure I have fresh masks as well.
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You all are going to think I am a fuddy duddy, and a real nerd, but I am just wondering if anyone else feels like I do....
When I was younger, and I am only 52 now but I mean like when I was in my 30's, I used to have so much more energy. I used to do those Relay for Life activities (for those that don't know Relay for Life was a fundraiser for cancer, held during the summer, and was an all-night event). I would be up all day getting set up for the event-- setting up my booth-- then would be up all night at the event. So much fun. Games, food, socializing with people, drinking soda and eating snacks in the late hours of the night, eating biscuits and gravy at 5am when the dawn came.
Now, these days, I am in bed by 9pm.
I am thinking of all this as our church is planning a service for New Year's Eve this year. Starts at 8pm, snacks, preaching, singing, and ends at midnight. Not counting the "germ" issue (my latest posts about masks and flu/covid issues), I could not stay up that late anymore. Then, my stomach would protest eating the food at that late hour. I would be ringing in the new year in the bathroom. And by the time a person got home and wound down and went to bed, it would be in the wee hours of the morning, and I would feel like crap.
Am I just being a fuddy duddy and acting like an old person?? Haha, that is funny, because I know a few ladies in the church that are in their 70's and are planning on going. So, I am not even acting like an old lady, they are acting younger than me.
What are your plans for New Year's Eve? Anyone else going to be snug in their beds at Midnight? Oh, I wish I didn't feel like this--- I am too young.
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Mae - what fun! Are you going to hang a bunch of lights up in there? Is it heated?
Candy - naw, I don't think anyone here thinks you are a fuddy duddy or nerd
OH and I were just talking about New Years. Last year I think we went to bed (or at least, I did) by 10 pm - I don't drink hardly at all anymore, and who can sleep with a glass of champagne or two that late? A few weeks ago I saw my most favorite venue in town was hosting a new years party and perhaps 5 years ago we would have made an attempt, but now it just seems like too much hassle and two days of fatigue. This year I expect Ill be in bed early again as usual, and well just open the champagne in the morning instead. Given the latest run of years, Im a bit gun shy to over celebrate the changing of the calendar! Today I got reflexology on my feet and that was pretty nice. I need to find a regular oncology masseuse for a monthly type of thing.
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