I am trying to be so careful. Online shopping, always wearing a mask when I'm walking or at treatment & avoiding contact with almost everyone but I am getting so tired of it. I need to be with family & friends or at least walk around a shop to lift my spirit. Everyone keeps telling me that I can't avoid getting it so I might as well just be normal. Are they right?
I'd just like to know how others in this group are coping with it, whether you've had it or not.
Love & hugs, Irene
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AuntyOrange
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Hi there Irene. During chemo I was very careful and wore a mask al the time when out. If I saw family they did lateral flows and I saw friends on FaceTime. I didn’t do much but didn’t feel like doing much. I still hugged my grandson but he wasn’t going to nursery then so easier. I didn’t catch covid during that time when super careful. Now I’m on maintenance treatment , Orlaparib. And my bloods have been good, white blood cells are normal. I have been very careful in shops still wearing masks but have also been mask less when having lunch inside garden centres and outside other eating places but sat a bit away from other tables. I see my family and if it’s family I don’t see often they do a lateral flow test. My grandson goes to nursery now and I have decided to still see him and I have picked up a few bugs. I also picked up Covid a few months ago and was given an antibody infusion that helped me get over it. I carried on with my Orlaparib during covid, my choice. It was like a cold for me. It’s a bit of a balance really xx
Hi Irene. When I was on treatment I had very low neutrophils and all I was careful of was going to large gatherings and definitely made sure I wore a mask as people are ready to greet you with a kiss and a hug! I wanted to wear a badge that said don’t come near me. Haha! I didn’t avoid family or people coming into my home as it’s bad enough dealing with everything let alone loneliness.Saying that I did catch covid!!!! I had my three vaccinations.
I had a temperature and a slight cough but felt well, had to go hospital and had the anti viral drugs do they kept me in for five days in a room on my own wasn’t allowed to use the bathroom (commode only)
I’m now on a Parp which causes low bloods also and I’m still doing the same as I think covid is not that bad anymore. xx
Thankyou Heart12345 and Duvin1.Both your replies were very helpful. I am on Avastin for maintenance until zi can get on a PARP. I'm in Australia & I believe we now have anti viral drugs available.
I will keep doing what I'm doing to stay safe but maybe with a little less fear knowing you both got through ok. Thanks again.
The only thing I'd add is, if your masks are not FFP2 or FFP3 grade, upgrade them to those to wear in very crowded places such as hospitals, shops. Cloth or surgical masks don't work very well at all for omicron variants..
I took part in an antigen study to see if there was any drop in the vaccines effectiveness in people on active chemo and my result came back that I had vaccine antibodies and natural infection antibodies which suggested I had had covid in the previous 6 months! I was shocked as I had been doing lateral flow tests twice weekly prior to hospital visits and wasn't going out anywhere.Visitors to the house where testing beforehand. As for symptoms I could only think chemo side effects masked them or because I was fully vaccinated they where too mild to notice.I think feeling confident in what you do to protect yourself plays a part in not feeling fearful and that as long as you are fully vaccinated you are likely to be ok even if you did get it. Xx
Thankyou Tillymint61. That's really interesting & scary. I'll talk to my doctors about that. It's hard to know if side effects of cancer drugs could actually be symptoms of something else. Thankyou. 💜
I may not have had any symptoms of covid it was just my thinking that maybe I hadn't noticed any symptons in the 6 months previously as I was on chemo. I'll never know. What I do know is I couldn't have been any more vigilant than I was and continue to be.
The picture might be a bit more complicated; you may have had Covid a year or so back, for instance, plus vaccines, and then been exposed to subsequent Covid variants. It's possible 'catching' it again produced no or negligible symptoms, but it would have meant your antibodies would be increased and actively circulating, Antibodies don't continue to circulate after 3-6 months, but your T and B cells will churn them out if you come into contact with the illness again, so your result does not mean you must have had covid while you were on chemo necessarily.
Thanks for your reply.The message I got back stated the antigens present suggested I had contacted it within the previous 6 months. I was on chemo all of the previous 6 months.I had a feeling I may have had it in October 2019..All symptoms I had where what subsequently by March 2020 got described as COVID??? I'll never know. It was the timescale the NHS study quoted that was surprising.
Well,the time span of 6 months for circulating antibodies is just an average - some people don't have any left after 3 months or even less, and others still have antibodies up to a year later, so it can be variable. My palliative care nurse still had antibodies after 18 months... Either way, its great news you have both types of antibody (vaccine and infection induced)... I had something very Covid like in mid January 2020, couldn't breathe properly for weeks afterwards, but I'll never know if it was Covid or not...
Still so much they don't know I guess.I have also had the 5th Vax. On say so of my oncologist. I did query if I had natural antibodies as well as vaccine did I need it and was still advised to have it as I was on active treatment.
I'm still vigilant and try to limit potential infection at the same time as trying to have s life. X
Hi, I am still having chemo, and I had chemo in 2020 for first recurrence. I probably was more vigilant in 2020, but touch wood have stayed clear this time so far. I do wear a mask when in shops and go on less busy days in the week. The other thing is we have been away once a month for 3nights in smaller hotels in England. We generally visit places where it is uncrowded, and we go Sunday to Wednesday. We always take our own pillows. I hope this helps. I have stage 4 hgs first diagnosed 2015.
Thankyou Caleda4. Your experience is similar to mine. First diagnosis of stage 4 in 2015, first recurrence in 2019 & latest recurrence in 2020. I am currently on Avastin only, for ongoing maintenance. Yes masks are my main protection & I will start some short trips (with our own pillows) as you suggest.All the best with your treatment.
Thank you. Can I ask how did you get Avastin? I have been told that I will have to pay for it. What area of the country are you in,maybe this is a postcode thing regarding avastin. Take care.x
I'm in Sydney, Australia. I think there are different criteria for drug availability in each country. I'm having trouble getting Olaparib here but I think it's freely available in the UK?? 👭💜
Hello, I would say wear a mask but not just any mask. You want at least FFP2 which will protect you, not just others. I order mine from Amazon, they come in bright colours and they completely enclose your chin and mold to your face shape giving a good seal. Wash your hands a lot and keep a distance if you can. Take advantage of the summer to meet people outside. Takes a bit of planning but it does allow you to have social interaction which is so important xx
Thankyou Lyndy. The masks we use are a mix of P2 & K95, both from Amazon. I have a small face & was thinking I might need children size masks for a better fit?? I'll look into that. I'm in Sydney, Australia so we are into Winter here but apart from a current cold/wet snap, our winters are pretty mild (average 17°) . We can still normally eat in outdoor cafes as long as we rug up a bit. It's just the covid situation that has been stopping me but yes I will just have to "bite the bullet" & plan a bit better. Thankyou. 💜🙏
I caught Covid last week while visiting hospital in London for my scan. I was on my trial tablet, a tyrosine kinase inhibitor, so was really worried. I didn’t get the antivirals owing to being out of time having tested positive on Saturday. I had a fever for 3 days, then like a cold for a couple. Now it seems to be gone although still testing positive yesterday.The main problem is not being able to attend my appointments for magnesium infusions which I have twice a week. There doesn’t seem to be a contingency plan for patients with covid who have urgent hospital appointments. Situation is ongoing.
I am in Australia. Tested positive for Covid three days after carboplatin and Avastin treatment. I was given antiviral medication and in a virtual ward at home. It was difficult to tell what were Covid symptoms and what were side effects from the treatment. Overall it was not too bad.
I am being treated at the cancer patients only Marsden hospital at London and am stage 4 on olaparib. At my consultation 2 weeks ago the doc came in unmasked and said I could take mine off. Masks are now officially optional there. I had Covid last Dec, from hospital MRI as seeing virtually no one then. Had anti viral within first five days and it was less than a cold. 6 weeks ago my son, who lives in Japan, came to stay with me in my little flat.3 days in, he tested positive. I had constant contact all day fir 3 weeks. I stayed Covid free. Have had 5 jabs, as recommended by hospital. So, I am feeling much more relaxed re Covid.
I’ve been isolating for months….. didn’t dare go out waiting for first op and didn’t see anyone. Relaxed things a bit after that and a few people came after testing. Have done four cycles of chemo and like others have started going away for a night or two during the chemo cycle which really makes me feel good. We were v careful, stayed in a small hotel and came back with covid. However I knew about the drugs available only through a friend and got in on day three for the infusion which is 88%effective in stopping serious illness and hospitalisation. Chemo postponed for ten days. I can’t see how to avoid covid now and you have to have a balance of seeing some people and doing things. I’m looking forward to more freedom soon since I will have had this. The sore throat is foul and you really wouldn’t want to catch this in hospital or cough. Our conclusion is we got it at breakfast in the hotel even though tables were well spaced out. Solution - order room service!
Hi, I still wear a mask in enclosed spaces as Covid is spreading a lot at the moment. I also just had vaccine 5 a couple of weeks ago. I just don’t want to get it on top of everything else. All the best Sue xx
Yes i did get Covid last march during my chemo treatments even after 3 vaccinations. It was awful but I suppose it was light form of it compare to other cases and in about 10 -14 days it was over and I got back to my OC treatments, which was postponed because of that. Dont be scared that's all i can say xx ))
Hi, I had Covid in May and went for 3 days for antibody infusions. I felt tired and had the chills. I never had a temperature,just felt chilly. Even though I was fully vaccinated, I still came down with it. All I wanted to do was sleep. Getting rest is so important for a good recovery. They stopped my niraparib for three weeks so my blood wouldn’t crash. Take care, Donna U.S. xx
Hello, my mother had COVID while on targeted therapy. She wasn't vaccinated (because the doctors didn't advise it in our country back then) and she was in a hospital for two weeks. Her oncologist told her to took a break from Lynparza during that time. Although it wasn't easy, she recovered.
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