Well, you all seem to know much more than I do. Ive been diagnosed during lockdown, and have had a few trips for scans and blood tests, but all my diagnosises have been by telephone. Then followed by the stark reality in a copy of the letter sent to my doctor. I've just completed one month of letrozole and palbociclin, with no side effects yet. In fact I feel better than I have for months and the dreadful hip pain I had has diminished. I'm making the most of improved wellbeing and just getting on with what I can under the restrictions of lock down. Am trying not to think how this might change my life when the world around me moves on. 26 years ago I fought tooth and nail to beat cancer, and filled all those years with significant achievements , to show my gratitude for being alive. This time I feel a kind of acceptance. I do wonder how it will proceed but I am a positive person!
Knowledge about the condition - SHARE Metastatic ...
Knowledge about the condition
Hi Beryl,
You have come to the right place for support. Even with lockdown going on, we can still thrive. Did you hear the Prime Minister’s plans for “social bubbles” last night? Those living alone will be able to move in with family, or stay overnight without having to social distance. So if you are living alone, but have family, that may be an option for you so that you do not feel isolated.
I hope you will feel able to come here for advice or support. We can learn a lot from each other.
Take care,
Sophie
Thank you , but he said it didn't apply to those sheilding.
In the nice weather I had some individual garden get togethers which was lovely. And I have a special friend and sister I am prepared to break the rules for. Life's too short....as we know.
You’re welcome, Beryl. I didn’t hear the bit about those who are shielding and how the social bubble experiment doesn’t apply to them.
Sophie
An update for those shielding in England , as to the current rules ! But check for Scotland ,Wales, N. Ireland , as they have their own rules .
At present those shielding are not advised to ‘form a bubble’ , so the relaxation of the rules don’t yet apply to shielders, but the PM did say :-
‘more would be said for those shielding next week , about arrangements that will be in place for shielders beyond the end of June .’
So we will have to wait for that !
For the past couple of weeks , in England , the rules relaxed slightly for shielders and “shielders can go outside once a day with their household, or if they live alone , can meet one other person at a two metre distance . Shielders at present should not go out to work, to shop or visit friends in their homes”.
I personally think you have to apply common sense and just be ultra cautious . I have been cycling in the countryside near my home for the past 3 months , but in isolation ! And it has helped mentally too !
But the rules are changing frequently now , so hopefully better news for the ‘shielders ‘! Take care ! x
Hi Teddie,
That's good information. I haven't been shielding during this time, so I haven't really swatted up too much on what shielders can and can't do during lockdown. But that's useful to know for those who are in that situation.
But I agree that common sense is needed. I just stopped by the garage to collect my husband's car after its MoT and there was a clear sign on the door saying only one customer is allowed in at a time. When another lady tried to come in, I pointed to the sign and she seemed a bit put out! This is all part of our "new normal" for the time being.
Take care,
Sophie x
Yes , shielding applies to those of us on the governments ‘extremely vulnerable ‘ list , who are on treatments that are classed as immunosuppressants , eg.,Ibrance (palbociclib).
I fall into the government’s ‘shielding’ category based on this , but although I am cautious , I always decide what is appropriate for myself , as we all differ and have different circumstances eg location of our homes , our current health etc . But I do believe we should follow the strict social distancing rules ! eg ‘ one customer allowed in at a time! ‘
I read an article a few days ago , ‘Covid 19 - the impact on breast cancer ‘ by Professor Ian Smith at The Royal Marsden hospital , London, and he advised those on Ibrance (Palbociclib), or other CD4/6 inhibitors , to be cautious, but to get out. For any ladies , who are affected/ interested, this is what he said :-
“These are new drugs and we are still studying whether they might increase the risk from Covid , but so far there is no strong evidence that they do . So my current advice for patients on a CD4/6 inhibitor is similar to that for those in remission .
I do not think you need to lock yourself away . Get out of the house , enjoy a walk or a cycle , but remain very cautious and stick closely like everyone else to current guidelines .”
He did add that ,”this applies to those who are otherwise healthy and do not have any of the co-morbidities which predispose serious Covid complications “.
Take care ! Awful wet weather last couple of days here , so catching up on here ! x
Hi Teddie,
Thanks for explaining that. I'm not in that category, as I am not on chemotherapy or targeted therapy. So I think I am at less risk.
Sophie x
That's interesting because I was told yo be very careful and stick to shielding guidance.
It has relaxed for us ‘shielders’ a little in the last couple of weeks , and we are officially allowed out now , but still need to take all precautions... hand washing , sanitising, 2m distancing , masks if feel needed , and avoiding groups of people, shops etc x
Yes, I have been able to see some people. My local hospice have been helping with advice, they said be careful but do what you are comfortable with. So at the moment it's tea in the garden with friends.
Teddie that made good reading for me. It’s been so confusing. I have been to a couple of shops that have been empty as it’s early in the morning and I live in Liverpool City Centre. I’ve also been to our allotment a few times a week. Lovely fresh air and open space. I wear my mask and gloves although there is mixed feeling about them. I sanitise all the time (a bit paranoid) and went to the hospital for my CT scan Wednesday. I felt safe there as so many precautions were taken. Think we have to do what is best for us. My Oncologist was pleased I had been out. I won’t take chances though. I may not go,to the shops now the non essential shops are open. There will be more people about. Thanks for the info. It’s helped me. I’m on Pablociclib and Letrozole.
Cheryl
Hi again ! The rules are changing again for us ‘shielders’ in England , so here’s an update !
From 6 July we ‘shielders’ can meet up with a maximum of 6 people outside of our homes , social distancing of course ! (And there are other new rules for those living alone, who will be able to form a social bubble )
Then from 1st August the government is ‘pausing’ the advice to shield , but still require social distancing.
Shielders will then be able to go back to work ( if their company have made themselves covid- safe !) , shielders will be able to go back to shopping in supermarkets/ shops , if they wish , and to go to places of worship . Those who have had their medicines delivered by volunteers during the pandemic , this will stop , and those who ‘opted in ‘ for free food parcel deliveries , these will stop too .
I am glad that the supermarket weekly priority delivery schemes , eg with Sainsbury’s , will still continue though ( as I plan to continue using this) .
Since I am on an immunosuppressant ,( Ibrance) , and therefore on the government’s list of 2.2 million people , who are regarded as extremely vulnerable to severe complications if we were to contract covid-19, I have just received an update letter this week , dated 22nd June, outlining these changes and the help on offer .
However , the changes are ‘reversible ‘ so could change if the need arises. The latest change is reducing the 2 m rule in England to 1 metre plus on 4th July (if it is not possible to meet the 2metre rule ).
I’m glad that you are getting out to your allotment and to places that are quiet .... I have been to my local garden centre ( mostly in the open air) and to my local farm shop , as well as for bike rides in the countryside . I too choose to wear a snood - type mask in shops etc ... but it is compulsory on buses or public transport ( which I don’t need to use ) . I always carry sanitizer too, but no disposable gloves . Do get out , just be extra cautious ... but there is nothing better for our mental health than the great outdoors ! Take care ! 🤗
Whereabouts are you in the UK ? I’m in England . (Yorkshire) x
West Sussex. I love Yorkshire, have a friend who lives there and had hoped to visit this year but plans all now changed!
Hi Beryl
Welcome!
I find this such a good place to come to for help and support.
I’ve been on letrozole, palbociclib for nearly two years and have suffered hardly any side effects, just a little bit of tiredness here and there.
I wish you all the very best. Take care and stay safe.
Jo
Thank you .
Welcome Beryl
My first breast cancer was 1994 and I’ve had metastatic breast cancer for two years now so like you it’s now 26 years since my mastectomy ...what a terrible shock it is after so long
I’m now on my third treatment and still wake up some mornings absolutely devastated to realise what has happened to me....then sometimes I feel ok and just carry on as normal
That is why this forum is so amazing....when you hit a bad patch or if you have a good scan...you can share on here and always find support or invaluable advice
All the best
Barb xx
Thank you, yes it came out of the blue, all my niggles I attributed to too vigorous exercise, old age or overdoing it. I'd been told to keep checking my breasts and even had a clear mammogram two weeks before my MBC diagnosis. Noone told me of anything else to look out for!
I've since read that if you had chemo, they' re pretty sure it's in your system and MBC is likely to occur. I'm glad I didn't know that!
I didn’t know anything much either
I had a mastectomy that’s all and after a local recurrence had some zoladex injections....that was it...I assumed I was cured
Like you...my back pain I assumed was due to my job (dentist) and riding horses all my life...nobody suggested a scan even though my GP knew my past medical history...I reckon I’ve had mbc for years and in hindsight ( a wonderful thing) I wish I’d investigated further but it never occurred to me...not after 24 years fgs
Anyway here we are...I’m still riding my horse and do regular yoga classes (online atm) and try to be as normal as possible but it’s very hard and the pain is hideous from the fractured vertebrae ( how I found out about my mbc) but I’m stubborn and just increase the codeine...who cares if I end up an addict!!
All the best to you
Barb xx
Welcome on here Beryl ! What an awful time to be diagnosed with mets during the pandemic, but I hope you get lots of support and advice from all the lovely ladies on here.
I too was diagnosed with bone mets to the hip area , but the Ibrance has kept me stable for two and a half years and I hope it works well for you too . Make sure you keep moving and drink lots of water , as it eases the side effects somewhat . Keep positive ! x
Thank you. Yes I'm still walking but missing swimming with everything being closed. But I've found a online dance class.
They told me to drink lots of water. And I bought a filter to reduce the chemicals.
If you are interested in different online classes for exercise or relaxation , have a look at the Haven BC site .x
Thank you. I have done meditation for a long time and recently have started an online healing skills course. I use a hypnotherapy tape too which all help.
This forum is so supportive and let’s us know that we are not alone with our illness and thoughts. I have found the lovely folks on here so helpful and check every day for news. We also realise there is more to life than wallowing in self pity. It’s great you are a positive person. Good vibes help us all. Best wishes
Cheryl
Thank you for you lovely message.
Hi Beryl
Welcome.
Wowzers what a strange time to receive such a diagnosis. I found my diagnosis, just over a year ago, all encompassing, and filled my thoughts every waking hour. It’s much better now and I have settled back into my normal way of life, which I hope you will be able to do soon.
I was raised in West Sussex, but now live on Anglesey.
Clare x
Well I've thrown myself into mask making and finding online ways to raise funds for my Nicaraguan Charity. Their needs take my mind off mine! Giving is the best way to heal yourself.
Welcome Beryl you are in the right place. As far as social bubble goes I would do what feels right and safe for you, especially if you are joining someone else who is shielding. I’m not taking anything Boris says seriously but using my own judgement. If Cummings can go for a 50 mile eye test, I can have a chat with a shielding friend. I also feel better on Letrozole and Ibrance so fingers crossed it will continue to be the same for you.
I’m sorry you are going through this again but this is a great site for getting support. Lots of expertise here (although we would all rather be experts in anything else but MBC). Don’t hesitate to ask questions.
Thank you.
I love your attitude and welcome you to this wonderful site.
Thank you for sharing your story and your very inspiring words! May you have a successful trip Again this time on “the journey”.
Beryl,
Welcome to the site (but as we always say, sorry you need to be here!). I think you'll find great info and support...I know I have!
The Letrozole + Ibrance combo worked very well for me for several years (4 months just Letrozole, followed by 40 months with Ibrance, which had just been approved). My side-effects were minimal and I wish you the same!
Be well,
Lynn
Beryl,
Welcome to the board. Covid-19 has thrown all of our worlds upside down. I am so sorry you were not able to learn of your change in status in person. You will find this a wonderful helpful group of women. Best wishes. Blessings, Hannah
If your first bc diagnosis was 26 years before the mets showed up, that is a very positive sign that the cancer is not aggressive/fast growing. Plus treatment options are so much better now! Feeling better after a month of treatment is a positive, too. I've found that my body "tells me" how I am doing and when I've had progression, that has not been a surprise at all. Some of us with estrogen receptor positive cancer and a good response to treatment live a very long time. I hit 16 years with bone mets in March of this year. Hope you will do as well.
Hello Beryl: I am late chiming in on your post. Haven't had much chance to join in here. I was so sorry to hear you got the report on the phone. That is devastating for sure. I live in Canada so I don't know how your system works in England. Here I always have the option of a phone consultation or an in person visit with the doctor. Would that be an option for you?
I know they want to limit the visits to hospital, however, sometimes an in person visit is warranted. Just to discuss the treatment plan would be comforting to me.
I know when my oncologist wanted to move my visits and injections from two months to three months. I said no. I felt he was my lifeline and I wasn't ready to cut the cord. So we continued and then I decided when to move to three months.
Glad you have found us and I know you will find lots of good information and help here.
Cheers, June S.
Thank you. I had a lovely long trip right across Canada last Autumn. I'm hoping with this diagnosis it's not the end of my travelling.
It is because of Covid they want to limit trips to the hospital at the moment but my lovely oncologist delivered my second batch of pills to my house, so at least I've met her. I'm sure I will have chance for a face to face in future.
What a lovely experience, a trip across Canada. I have visited most provinces but never got to Saskatchewan or Manitoba. I am sure you will get to do more travelling.
As to the hospital visits, our are limited also. However, if it is important, a visit with the oncologist is allowable. That was so nice that your oncologist came to your house with the meds. Good that you are a positive person. I am also. That will help somewhat on your journey through MBC.
Cheers, June S.
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