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Bone mets - please join in

Community Champion

Re: Bone mets - please join in

Hi Bon and other Denosumab ladies

I think when they introduced Denosumab in 2013(?) that the intention was that the GP surgeries would take it on and at the time the practice nurses would give it rather than chemo units at hospitals. However I understand that this wasn’t rolled out partly due to costs as the GP units have a different budget to the hospitals and the drug costs would come out of their budget and, at the time as it was a new drug, the costs per dose were quite high. So, it remained with the hospitals and the practice nurses weren’t trained in how to administer it. I had hoped it would be given at my local GPs and had asked on several occasions but once I went back onto IV treatments I was at the hospital anyway so didn’t mind going up there as my Denosumab cycles were changed to fit in with my treatment cycles. It is a concern that if it moves now to the GP units that the necessary blood tests aren’t organised but assuming you are taking calcium tablets there shouldn’t be a necessity each time (I’m told you only need one every 3 months and it’s to check your calcium levels as Denosumab can affect that). The actual safety net we have with regular blood tests and knowing what the results are of other things being checked that we all like to know about and the contact with the chemo unit are things that no doubt the GPs and hospitals don’t take account for! I will wait with baited breath to find out if our local hospital is changing its procedures or if it’s just an isolated area.

Nicky x

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Hi Bon, that’s really worrying! There is no way I could do the injection myself, not good with needles, no massive phobia but i never look when they do my denosumab and zoladex. Like you i find it reassuring to visit my Christie unit every six weeks.
It’s a shame as it looks like more cut backs on the NHS of which I am very grateful we have!
Hugs Janette xx
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Hi dear bon,

 

I need to wait 8 weeks from my lasr Denosumab shot, both before & after...danger of jaw necrosis...really does not bear thinking about.....many thx for asking.....xx

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Silver, good luck with your tooth extraction. Do you know when it will be?

Bon xxx

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Hi Silver,

 

Makes you wonder why they were ever doing them in the first place! Sounds like they’re doing all the checks regarding your extraction...Kate x

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Hi dear kate,

 

Its all systems go with my tooth extraction. I mentioned to my GP that my monthly blood tests would end and her comment was that really does not matter! So my concern continues.....

silver..x

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Hi Bon, I can understand your concerns about this, did they say what they plan to do about your bloods? When I didn’t have Denosumab for eight months I ended up contacting the chemo unit to ask about what I did regarding my bloods etc., reply ‘was why are you contacting us?’ I explained and was told to get in touch with my GP practice who happily obliged and did a full screen on me, but the chemo unit couldn’t or wouldn’t accept my concerns that at that point I was still taking Letrozole and nobody was checking anything whatsoever, yet I’d previously been checked every month. While I understood that was in part due to actually giving the Denosumab, they were assuring me it was still effective in my system. As it happened my Oncologist sorted things out but do think they’re trying to put more onto GP’s  As said I understand your concerns but can’t say I’m surprised as that experience made me feel it really wasn’t a priority, if you know what I mean. Overall I consider my unit a good one and as I’ve said here before really like my Oncologist and would be devastated if I had to change, but did feel let down on that occasion. Kate x

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hello dear bon,

 

Gosh!!! I'm really shocked on your behalf. I'm also on monthly Denosumab injections. Whatever is the NHS world coming to?? I find it all a bit frightening.

 

I thought my once yearly CT sans were bad. I brought it up with my GP & she said that'll be for the whole of the S.E.

 

Hoping you find another way...I'd not trust myself....hugs

 

silver x

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Just had a call from my chemo unit to say they are looking towards patients doing their own denosumab injections to take pressure off the ward. I was quite upset. It's just another step down the NHS's slippery slope. I asked if the GP practice could do it, she said no, they are not licensed. But i am apparently! I'm sure i read on here somewhere that a member of the forum was getting it at their GP. It was quite reassuring seeing someone once a month. You feel really isolated with this disease as you go from one unsatisfactory onc appointment to the next.Man Sad

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I did forget to say. Manicures can also put us at risk._ _As they push down on the cuticle hence bugs can get in at the nailbed...again all advice from my nurses

 

the LSN. have lists of therapists whocan offer,manual  lymphatic drainage which you’d have to pay for

 

best of luck

 

Moijan

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Thanks Moijan....all that information is extremely useful. I'll get in touch with my local breast cancer unit. What a great place this forum is for sharing useful information.

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Siver

 

i have lymphoedema. My hosp has a department which 1/confirms wether it is lymphoedema, 2/. Measures it

regularly on a special machine, 3/shows you how to self manage, so you don’t get infections. 4/prescribes compression garments.

 

practically, what I’ve learned is, not to lift  with that arm.wash it am and pm moisturise as bugs can get in through dry skin if minute cracks. Appear, have my own towels and soap just for me. Protect hand when gardening.

 

mine has worsened over the years and cellulitis is now more frequent even with all those in place.

 

i hope this helps and maybe ( hopefully) it’s not permanent.

 

Moijan

 

 

 

 

Lymphoedema Support Network - LSN
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Welcome to the Lymphoedema Support Network website. If you have developed lymphoedema, you are not alone; recent research suggests that lymphoedema affects at least 240,000 men, women and children in the UK. Although lymphoedema is a long term condition, with the right information, support and treatment there is much that can be done to improve both swelling and other symptoms. 

The LSN is a registered charity run by people who live with lymphoedema and is the largest information provider about the condition in the UK. This website forms part of our work and contains information for patients about the condition and the experience of living with lymphoedema as well as information for health care professionals looking to support patients with lymphoedema. Should you not find what you are looking for here then please do not hesitate to contact us.

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Re: Bone mets - please join in

To one & all,

 

On Thursday, my G.P. confirmed lymphoedema in my upper arm. She didn't say any more. Do I ignore it?. I'm not sure what to do....some numbness in my hand, too.....

With many thx & kind regards,

silver...x

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Ff thank you 

 

vinorelbine was easy but didn’t work for mexx

 

loads of love,

 

moijan

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Thank you Sarah...

iwas avoi ding a port for years, then decided to plump for one...ff and others all told me how it helped...had one put In. In About feb.....never looked back..once in no more soaking arms in sinks etc!

 

not every hosp here uses them tho so a+E trips are still veins and trauma.

they often will put in a central line or a picc...last would limit my activities a bit so opted for port...all under skin so can swim if allowed, but I don’t 

 

have a think and ask to see a couplexxx

 

Moijanxx

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No moijan never had any hospital admissions or issues with high temperature whilst on carbo. I did have anaemia but had injections to boost red blood cells so avoided a blood transfusion.
Ff at my hospital they use iv unless you are having lots of chemo and views collapsing. If I have more iv chemo I would definitely need a Porto cath as my viens are pretty knackered now!! I wanted to try and avoid Porto cath as that corbited with chest drain would make it very difficult for me to get holiday insurance I would imagine? However far easier to have iv chemo than the struggle to find views! X
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I have a question ladies. I saw cannulas being mentioned and traveling. Why do they give you cannulas vs. a portacath. I haven't seen a cannula in use at my cancer center in many years. Even in 1995 with my primary they wanted to place a portacath. I refused it back then bc I was only having 4 treatments of chemo. Then surgery. After surgery they would decide if I needed more chemo. I told them if I needed a lot more then I would get one. For those 4 treatments they just did an IV each time. Why aren't you getting protracted? Mine has been in for over 12 years. They flush mine every 3 months when not in use. I love having it! I would hate a cannula! FF

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Sarahlew and Moijan, Another chemo in tablet form in vinorelbine (navelbine). At least I was told UK as tablet form. We don't have it here. I haven't heard anyone talking about this chemo for awhile. Years ago I saw it on here as treatment. It was the easiest of treatments for me and worked 5 years. I started with 3 weeks on and then one off.Then I saw a few people doing it every other week. I talked to my onc and he agreed to it. It wasn't so bad every other week.

 

FF

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Let us know how you get onxx

 

M

ooh and were you ever admitted to a+e on carbowith high temp?

last time iwas the nurses bunged up teicoplanin, another nephrotoxic before asking me or chatting to the doctor. I was on Paclitaxel then tho not carbo..not sure wether kidneys can  cope with both..,theytailor the drug dose to your kidney function...At my hosp.

 

moijan🤗😘

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Yes I had insomnia think it was more the steroids though (still don't sleep great! ). Took zolpidem which did help 10mgs I think it was. Yes the trial he mentioned is at my local hospital I did say I was prepared to travel if he knew of any other trials I could access.x
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Have just had third of first cycle it’s made me a bit miserable, but the premeds always fix that,,,,not sleeping well.thanks for askingxx

 

Yes, I almost said ask about the trial first as that will maybe give you some extra months/years as well, they take liquid biopsies (blood)and look for markers in them, I had fulvestrant looked for too...no markers for the trial youmention but yes for fulvestrant...but didn’t work for me.  ,, do they do that trial where you are..I know marsden do ..you might neeed to consider with your onc whether to be referred to another hosp. Or wether to 

plodd on...again your choice, has to be, know it’s hard xxx

 

Moijanxx😘😘😘

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Re: Bone mets - please join in

Yes feel happier guided by the experts. I have recently changed oncs as my last one left and I have more faith with my new one and did appreciate him phoning so we could discuss it further. He's going to find out more about a trial using palbocillib and fulvesterant first then start next week ( the trial is not up and running yet so unsure of criteria didn't want to start e/e until establish if it's prior use is permitted prior to trial. I was dis appointed last year to miss getting access to palbociclib and letrozole as by the time my onc referred me I was too unwell to take part in the trial.
How many sessions of carboplatin have u had and how are u finding it x
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Hi Bon,

 

‘’I was chatting to a friend yesterday about. Our meet up in 2016

we both recal lthat get together with fondness.....and the Tea we had in John lewis

 

Ah well, maybe again one day xxxx

 

Moijanxxx

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Ps sounds a good oncxx

 

i can always reach mine via his pa and get email replies, but never phone calls. He sounds very good at communication xxx

 

mx

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Are you happier now, that he has stepped in? Helpsa bit doesn’t it xx

 

iidont know, but I think they are tablets...which might be travelable, it might be good to see how you feel on then.i know some people have had side effects xx

 

very very best of luck...when do you Start? Would love to hear how it goesxx

m🤗

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How fantastic you have been to Oz! . Yes had insurance with mia in march to vegas cost 800.00 as I also have a chest drain but was only on letrozole then - but was worth every penny😊. Would really love to go to Asia so will see . Onc rang this morning to say bloods ok apart from raised tumour markers up from 69 to 150 so he advised may be worth trying e/e combo first x
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Hi bon,

 

Many thx for your kind wishes. Are u still in the Orkneys? What a treat to be living in Devon. I've never been but heard all good things.

 

The heat seems to be building up again. My poor postman looked like he was melting!! I keep hearing the witch's wail in Wizard of Oz....'I'm meeeeelting'....

 

When are u setting off home?

xx

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No...I wanted to go back to Oz again, I emigrated there in my 20s.

 

but I’m afraid, I was latterly doing one of my projects...an hnd in fine art and delayed going, then cape failed me, was tied to a cannula....ever since really

 

if you have travel plans...I’d chat to onc, and if he’s happy, scout around..,there are good companies who will insure us...they alway asked me’how Many times a year do you see your doctor....well, have other doctors for other things so sometimes the answer puts them off, or they will cover anything non cancer related..which as you know.’ Is a bag of kittens’ but we can get insurance..I never skip it, because if I were to become ill in transit, the plane would stop and may put me down in Asia or other - then needing to be medivacced home..,which they do by giving you a plane to yourseef witt doctors and nurses..

.that can cost in the £40, 000  range...apols if you knew thatxxx

 

Last time I went back to oz....just before I became metastatic, a company asked me for two year printout from my gp and insurance cost me £1060 !  But I went because I really wanted to go.

 

good luck whatever you choose 🦋🤗

 

moijan

 

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Thanks nicky that's reassuring to know love my travels😊. Hope our lovely summer contines so you can have some trips here in between treatment. X
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Hi Sarahlew.

I too took Cape for about 20 months and tavelled frequently - Majorca, Canaries and even Las Vegas. I got insuance thru a company called InsuranceWith. I have lots of mets and take blood thinners and morphine so always got referred to the underwriter but eventually get a decent quote. In common with a lot of the specialist insurers they will only quote within 2 months of travel.

On IV chemo with a PICC line now so can't travel and really miss it. If your condition is stable and you're on oral chemo and you ONC approves I would say go for it.

xx

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Hi Silver
Hope your steroid shot is effective and s/es subside.
Back to the heat for us tomorrow. A friend has been watering my pots. Fingers crossed. Butterflies seem to like this weather
Bon x

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Thank you for the cap link moijan - did u travel whilst on this and manage to get insurance? X
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Nicky, thank you so much for the info, a very interesting read!
Hi, to all, hope everyone is keeping well and this warm weather isn’t too much for you!
Take care, hugs Janette xx
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Nicky, thank you so much for that info.....what a gem you arexx

 

Moijanxx

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Thank you so much nicky, ff and moijan for your thoughts and replies. Yes will ring oncologist tomorrow to try and get some clarity
Sarah x
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Hi Kate, DLM & funnyface,

 

Whew! Had my steroid shot for my inflammatory arthritis which is making silver feel pretty rotten....10 days till it works...all digits crossed....

 

What plans for your w/ends??

 

Its heating up again...boo hoo!!

 

Take care..all...

silver..xxHeart

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Sarahnew , thank you so much for sharing about Carbo, I am hoping now for similar resultsxx whereas was feeling quite low...as nothing has worked for me for a year and my liver mets are creeeping along

 

of course you are feeling overwhelmed.   Xx And of course you will have to choose/make up your mind...and it’s difficult...your onc has given you a lot of choices.... do they have fulvestrant at your hosp? 

 

i was on Cape at the outset and it worked for Me for about 22 months.,,it depends on the individual....there is an excellent Cape thread where you will find a lot of users to discuss Cape with... I thought great- tablets, can travel and that was for me personally a freedom which I miss.

 

Could you pop back and chat with onc about success rates, maybe for these options.? He sound very on the ball, but I agree with you...needs careful thought.

 

 

very best of luck with your decisions

 

 

 
https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Xeloda-Capecitabine-Your-Top-...

 

 

hugs, Moijan

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Sarahlew, In the beginning of my treatments they tried controlling my cancer by shutting down my ovaries with lupron injections. It didn't work. My oncologist felt hormonals would never work for me and said he wouldn't give them to me again. I went for a second opinion. That oncologist felt that the Lupton injections weren't enough and that the first guy went to easy. He said he would have given me somethin g else to shut diwn my adrenal glands too. He said if I ever wanted to try hormonal and if my oncologist refused to com e back. He did say that he felt it was time for chemo to try and kick the tumors down in size. He said then maybe hormonal a again.  I think I would ask what the oncologist thinks might be best. Letrozole as a single agent might not be enough. You might need a double agent (combo). I think this is what your  oncologist might be thinking bc of him suggesting e& e or palbociclib & fulversant. I would ask a few more questions and see where his thinking is. Do remember you can try any of the choices at anytime and the choice is yours! Good luck! FF

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Optimissy, Thanks! We both did good. Neither smoking of overeating  habits are easy to break.  It took me 1 1/2 years to do it. I've been wanting for the last 6 months to lose 10 to 12 more. I have maintained my weight. Now, it's to cut back a little more or decide if I will stay at this weight. I'm happy where I'm at. I find it easy to maintain it, but my heart still wants that last bit of weight. I'm probably goin g to try cutting back just a its bit more to sed if I can accomplish it. I don't know why but in the past when I tried to lose weight it always seemed like such a difficult thing with me stomping my feet. I actually think it's bc I didn't follow any programs this time. In the past I went to weight watchers. Many years ago with there program you had to have so many chicken meals, one lived meal, all goodies were considered illegal. Over the years they loosened up their programs. I found that I couldn't stand going there anymore. I  couldn't sit their and listen to these people every week saying I have a wedding, reunion or etc. to attend, how am I going to handle it? What if the food comes with gravy, how can I walk past the dessert table? I found I just couldn't listen to this. I found it way easier doing it by myself! I did portion control and limitation control (you can't have goodies everyday and sometimes you must say no thank you!) Portion control was easier for me than saying no thank you! I did no second helpings unless it was veggies! I think finding what worked for me was the hardest part. 

 

One of my favorite things is being able to cross my legs! Shopping in regular sizes is awesome, bc there is more choices of stores and sales. I'm not as short of breath. I can kayak! Lol, now I need my own kayak! 

 

Keep staying on track! FF

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Hi ladies

Ivd not been on here for a few days but have seen the few comments about heart failure/heart problems caused since having SBC. There was an article in yesterday’s Daily Telegraph about this which may make interesting reading:

 

https://www.telegraph.co.uk/news/2018/07/31/breast-cancer-treatment-can-double-heart-risks/

 

Hioefully the link works. I have first hand experience of this as I developed severe heart failure over a few years after having FEC chemo in 2008.  The ‘E’ part is Epirubicin which is one of the anthracycline based drugs that they mention in the article. I just wanted to say that there are ways to help us cancer patients and you should speak with your oncologist or GP about this. I eventually had a referral to a cardio-oncology unit in London, set up for this very reason that cancer treatments cause heart problems in many patients especially as a lot seem to be living longer. If you want or need any further info please PM me, I won’t fill this thread with more information but safe to say I’ve been one of their complete success stories and have been on Radio 4 and in the Daily Mail to speak about the fantastic work they do. Most oncologists don’t seem to know about the research and most cardiologists don’t either!

 

Welcome back Rosie53/Janette, don’t leave us 😊

Sorry Sarahlew that I cant help, I’ve not had e/e offered to me or been in you particular position, although have had 2 liver biopsies if you want more info about those.

Sending hugs to Carolyn, look after yourself my dear 😘

Hi to everyone else, hope you are coping with the next heatwave! It was nice for a few days when we had some rain (hooray, no watering the garden every night) and cooler days (hooray I actually went out and did some things!)

Nicky xx

 

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Hi all
Not sure where to post this but looking for others thoughts....
Scan results yday show some progression in liver - I had carboplatin last year which zapped 2 liver tumours completely for a year (was on letrozole only after carboplatin ). The oncologist has now given the following options:-
1) Change hormone to exemestane and everolimus
2) Chemotherapy - epirilicin capecitabine or carboplatin
3) Aurora trial where they biopsy liver and I can then accessend palbocillib with fulvesterant
4) Liver biopsy to check hormone status (also have pleural effusion which showed er+4)
Feeling a bit overwhelmed but I'm leaning towards e/e would value others thoughts thanks
Sarah x
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Thanks Moijan - good to hear from you. X. Yeah, it is a toughie, I've been a bit of a miserable bu**er at times during this process but coming out the other side now.  There may be other folk on here who are smokers and struggling with stopping who may be afraid to come out of the smokers' closet on this forum for fear of judgement (as I was, which is why I posted originally on the CC's private thread last year.) If I can be of any help to them with this I am happy to be private messaged - it would be good if my experiences were able to support others as they quit and to know that it CAN be done and there is a better life without cigs even if it seems impossible at the start.

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Bl**dy hell FF, that is some fantastic achievement, especially as that sort of outcome does not come overnight so requires huge perseverence over months and years. Whew! You must be so pleased with yourself for doing this - a lot of people wouldn't manage to do half of it. Good on you gal. X

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Optimissy, I'm not down to 140. I've lost 140!

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Hi Bon,

 

glad you you are enjoying  your breakxx

 

I too love Devon, have a few relatives down that way, so hopefully, might get there for a weekend soon xx

 

best wishes, Moijanxx

 

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Hi Optimissy,

 

lovely to hear from you xxx

 

so impressed, you managed to give up the ciggies...always a toughiexx

 

hugs and best wishes, Moijanxx

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That's great FF. Getting down to140 pounds is a fantastic achievement and must make a huge difference to your mobility and back problems that you had before. I need to lose weight too, having put a lot on after stopping the cigs - everyone does- but i'll get there. xx

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Optimissy, Great to see you posting. Thanks for the kind remarks of appreciation. That is awesome that you quit smoking and have kept it up. I kept at my weight loss and I'm down 140 lbs. I have a little more to go but have been kind of stuck. I'm going to have to cut back a little more to finish up. 

 

Silver, It's not a major concern. They feel all these lovely meds caused it over the years. Just keeping an eye on it. ! The styes were uncomfortable. I did read about the ring method! I will be trying it if they come back. Today they are almost gone.

 

FF

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Hi F-f,

 

So much of our globe is far too h-o-t-t-t currently. In my neck of the words, its a simply perfect day...and the bumble bees & butterflies are decorating my wee garden! There is a light breeze.....Ahhh

 

Oh.....is the congestive heart failure a big concern? I developed high b.p. from the middle of nowhere 4 months ago. I asked my G.P. why and she just said some do & some don't!! I take Amlodipine now. Like us all, I'm rattling with tablets....he, he, he

 

poor u with the styes. they are ever so sore & annoying...not sure why we get them. My dear Mum used to rub her wedding ring on mine!

 

Best of luck with your job scouting......hugs...take care...

silver..xx

 

 

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Carolyn52

I have just spotted your post on the bone mets thread, (not one i often read as it does not relate to me), and I'm not a regular visitor to this forum these days, but I just wanted to say how sorry I am to read your news and how much I appreciated your supportive and non-judgemental stance last year when i took the plunge to stop smoking (you too, Funnyface- much appreciated. Hope,you are well).  In your pms you said just what I needed to hear, and I am still off the cigs after 11 months, even though it's difficult at times.  You have been so supportive to others too, and I hope you have maximum support both virtual and concretely in the times ahead.

 

I tried  to send you a pm to say this but I think this facility is not available now, so hope you get this. xx xx