I am finding myself increasingly concerned about the easing of restrictions around covid. Everyone seems to think that because I have had !y vaccination I shouldn't worry too much.
I know that being on chemo means that the vaccine is only about forty percent effective, due to our reduced immunity. Does the same hold true for those on parps, does anybody know? Do parp s affect immunity to the same extent as chemo?
Jenny
I'm worried too ,instead of opening up my life I feel it will be more restricted ,I'll continue to wear a mask in shops ,but it's the lack of distancing in cafe's restaurants etc that's troubling me. I'm on a parp and nobody has been able to give me any information as to how much more my risk is ,I feel very anxious. Sorry I can't help but wanted you to know you're not alone in how you feel.
Unfortunately, wearing a mask will protect others but not ourselves. Having a terminal disease makes me want to live life to the full, not lock myself away!
Jenny
Totally agree Jenny ,I'm in the same position , I want to live my life as much as possible ,but don't want to be wiped out by a bloody virus.xCheryl
Hi Jenny there was a lady from Blood Cancer UK saying the same things this morning on r4. There isn’t enough information atm about degrees of immunity imho and I will be avoiding public transport etc after 19 July. You can still get nasty Covid with the jab and I wouldn’t fancy my chances xx
Hi I have exactly the same question! I work in a hospital and am being pressured Into going back. I don’t know how reduced the parps make my immune system? It’s so high out there right now, are they signing my death warrant? The stress is unreal so if anyone has any answers please let me know! Am speaking to my nurse in 2 weeks so just ‘staying under the radar’ and hope they forget about me 🤣🤣 x
Hi. I’m in the States where things have been open for a month or so. I’m on Olaparib and my oncologist said that since my blood counts have been low normal all year I have the same immunity as a non-cancer patient. I guess it’s all about your white blood counts?
Have you dispensed with the wearing of masks in the States? If so, what has happened to your C ovid numbers?
Jenny
Ive just come back from a trip to London on the train. It was packed! I didnt think it would be busy off peak. Some people not wearing masks notably the younger generation.I am worried about catching it but want to live whats left of my life not just exist cloistered indoors. I dont suppose theres been any research into how it behaves with PARPS
The mask wearing protecting others but not you, surely if your germs cant get out, then germs from someone further away from you cant get in ? Just had to wear a mask in the British Museum, a vast space not crowded at all, and it was sooo hot !
No Apparently mask wearing doesn't protect the wearer unless you have a special mask. I have googled them and they are very expensive and my daughter advises me that they can't be worn repeatedly.
Jenny
I think you’d be safer to keep going with the social distancing and masks, avoiding crowded places for the time being. I will be doing that, and I’m not clinically vulnerable (just old 😄) ……I don’t think we’re out of the woods yet. Stay safe xx
Hi Jenny, I was told by my Oncologist to be careful when on the parp,regarding the effect to the immune system.
However if you are sensible & wear a mask in places where there are not to many people and keep a safe distance, and use hand sanitizer, which is what I have been doing.
You have to go out sometimes, just avoid crowded places. I was apprehensive like you, but we have just moved and had to spend one night in a hotel, but they had strict regimes.
Take care,
Can't answer re parps but was going to suggest you ask for a full blood test that will give a good indication of your immune fighting cells and how they are doing. Maybe ask for a covid antibody test too just to give you some peace of mind. I am working on the theory that I just don't to get any illness on top of dealing with what I'm already dealing with so extra vigilance regardless of covid is my way to go. Xx
My Oncologist told me it depends on the bloods, if your bloods are okay then your immune system should be also. If your bloods aren't okay they will tell you and do something about it. Obviously mask wearing in public and avoiding very crowded places makes sense particularly with the numbers rising and school children (super spreaders) out and about. Hope this helps, when I was given this information it made me more confident to go out and about. Take care all and enjoy. Sue xx
Hi, I have been worried about this too. I have just had my first chemo, second due 22 July. On the days I am feeling well, I want to be able to go out and about and live life as much to the full as is sensible & safe. The removal of all restrictions in rising coronavirus infections makes me think that it is not safe for me out there. I am feeling that my options will shrink from the 19th. But I am also aware that I have healthy friends with no complications who feel similarly.
In my opinion, actually being on chemo means you should really wear an FFP3 mask when you are in enclosed spaces- we are far more vulnerable to all infections when we are on chemo anyway, even without Covid. They are expensive and single use, yes, but its not going to be forever...
Miriam
Thanks for that suggestion Miriam. I have been avoiding enclosed spaces whereber posdible tbh, although I was hoping to go for a meal with family just before my next treatment when immune system should be at it's highest and whilst restrictions still in place. I will look into those masks, they may open up a few more places for me. Thank you x
Good idea, have a meal out before the deadline of 19th July.. after it, it'll be eating outdoors only for me!
M
Your concern is entirely valid as far as I can see - anyone over 50 and particularly over 60 with one or more co morbidities may not have had a complete immune response to the vaccines whether they are on immuno suppressing drugs or not. This is obviously also true for people on cancer drugs and anyone otherwise immuno suppressed, which roughly amounts to over half a million people in the UK currently. PARPs do suppress the immune system to varying degrees - I've certainly noticed that bruises or a cut take anything up to 4 weeks to disappear or heal since I've been on a PARP, when it used to be a week, maybe two for a more serious wound. Which tells me my immune system does work, but its sluggish and not as fully functioning as it was prior to a PARP, though not so bad as it was on chemotherapy. I can see from my bloods history that things like neutrophils and other counts related to the immune system are generally lower than prior to a PARP, though they are not exceedingly low. Add to that the Delta variant, which means the vaccines, even if they have fully 'taken', give less protection against it anyway.
The only way to find out if you have a good level of antibodies is to get an antibody test, but the NHS does not provide these except in special cases, such as medical staff. They are available privately for around £50; some are not suitable for checking antibody status following vaccination - these seem to be the pinprick tests.
As for masks, the ones that do protect the wearer are FFP3 ventilator masks, but they are single use only and my pack of ten cost me £65, which is expensive, obviously. I'm really annoyed the mask mandate has been removed on public transport and in enclosed spaces, many of which are busy and poorly ventilated (such as supermarkets), I think its utterly bonkers. As does most of the rest of the world, but I realise we must open up at some point, so most restrictions should go, but mask wearing does not stop people leading their lives and I feel strongly it should be maintained in those places; it is quite clear that a majority of epidemiologists, medics and scientists are dismayed at the requirement for masks being dropped. Yes, we can still choose to wear them, and I certainly will do so, but we all know there has been a percentage of people who refused to wear them even when they were mandatory, and those who complied simply because it was mandated will no longer wear them after the 19th. Added to that, the distancing rule is going, which means hospitality such as pubs can now have as many people who care to go along in them, and no legal requirement for ventilation or enhanced/upgraded aircon has been forthcoming. Which means I won't be sitting in a cafe or pub after the 19th....
On the other hand, as cases of the Delta variant are increasing exponentially, one might assume that, after some weeks, those people who had it and recovered are now virtually immune and therefore cannot infect others. Reinfection in people who have had the infection is pretty rare, likely rarer than it is in vaccinated people if my son is anything to go by - he had Covid end of August last year, has since been re exposed to Covid on 4 occasions that he was definitely aware of, the last exposure to the Delta variant, and has remained well, and negative on testing. A bigger risk with no restrictions and high infection rates is more new variants arising, and the worst scenario of all is that might lead to a vaccine escape variant... which would put not just us but the world back to square one, but since I believe we should only worry about the things we can change, not those we can't, then there's no point worrying about it, the government has made their decision and seems impervious to the idea of changing course, irrespective of what the science says...
If its any comfort, the Covid mortality rate two weeks ago in the double vaccinated was 1.5% out of 3546 cases in hospital and most were over 50 - in the unvaccinated, it was 3.9% out of 976 people in hospital - detailed breakdown of the exact age and state of health of those who did die in the double vaccinated cohort is not readily available, or I can't find it anywhere myself. This is a relatively low mortality rate in the double vaccinated.
It seems unlikely the government will change course, no matter how much protest they receive in respect of masks, so I guess we are all going to have to think carefully about where we go and when... and what type of masks we wear. But yes, it does seem to close our lives down when distancing and masking go... for a while at least, while this Delta variant is rampaging...
Miriam
Thanks for such a detailed reply. perhaps I will have to bite the bullet and shell out for the FFP3 masks, but I am annoyed that people in our situation haven't been considered.I
Jenny
Well, sadly, people like us are around half a million - set that against 64m in the population, and we are very much a small minority I'm afraid.
M
There is a Petition you can sign requesting the mask mandate to be maintained in enclosed spaces, link below
petition.parliament.uk/peti...
There's also a John Snow memorandum you can sign in support of the 122 doctors and scientists requesting that some other restrictions be kept in place too.
Good afternoon all
Thank you Jenny for your post raising concerns around the easing of pandemic related restrictions. I can see that there have been lots of informative and supportive responses across the forum community but I wanted to highlight that Ovacome is aware of the anxieties that many of you are facing in reaction to these changes.
Our Policy and Health Inequalities team are working to draw attention to the issues faced by clinically extremely vulnerable people as restrictions reduce. We are continuing to gather information and are thankful for your perspectives which are helpful when highlighting these concerns through our policy networks.
Our support team are available to discuss any of these concerns further. Specific questions relating to your treatment regime can be passed to members of our expert advisory panel if requested. Our Support Team can be contacted on the Support Line on 0800 008 7054 or 07503 682311, by email at support@ovacome.org.uk, via the Instant Chat function on our website or pre-booked for an individual video call. All our services are available Monday – Friday, 10am – 5pm.
The government website does offer some guidance for clinically extremely vulnerable people from 19 July onwards which may be of interest: gov.uk/government/publicati....
There is also some information available on our website which I hope may be useful for you: ovacome.org.uk/Pages/Catego....
We emphasise the importance of liaising with your own individual healthcare teams who will be able to identify any unique risks in relation to the easing of restrictions and your own personalised treatment plan.
Best wishes
Annie
Support Services
Thank you all for your replies, do look at having the shingles vaccination
Rucaparib and a \"normal\" life!
Remission lasted 8 weeks only - anyone else experience this?
All clear after first-line treatment :)
Has anyone been on Niraparib twice?
