A little bit of hope. : apple.news... - My Breast Cancer ...

My Breast Cancer Community

3,528 members1,719 posts

A little bit of hope.

sotolol profile image
3 Replies

apple.news/AkNcoVNGIQwK6veq...

3 Replies
DJK99 profile image
DJK99

Thanks so much for publishing this sotolol.

I wondered if it could be taken without the hormone inhibitors, as, like so many, I had dreadful side effect issues on Tamoxifen (wasn't a life), and am teetering on brink of osteoporosis said the DEXA scan, plus very fatigued with a load of other health stuff so decided against. I am still looking, but what I did find was this on the Cancer Research UK website. It gives the common side affects, one of which is reduction in white blood cells which leads to higher risk of infection. I have neutropenia as part of a couple of autoimmune diseases (lupus and sjogrens) and so this would be a potential no-no. There are a lot of other rather nasty side effects too, but if you can handle them, and don't have related comorbidities, the stats on reduction in recurrence look good.

cancerresearchuk.org/about-...

Thanks again and hoping you are doing OK. D x

sotolol profile image
sotolol in reply to DJK99

Hi DJK99 I'm OK thank you. Just out of hospital after another AF EPISODE. Change in drugs again anyway long story. I'm on Alendronic Acid as Anastrozole makes your bones weaker. It seems you get one problem and the meds give you something else. So its a round about we are on. I hope you are coping well and work around your ailments trying to find out what suits you best.

Take care.

DJK99 profile image
DJK99 in reply to sotolol

So sorry to hear that sotolol. Have you got support at home or nearby? I used to be on sotolol btw, with my AF... but the ablation worked kinda, must be 5-6yrs ago now - after 6mths anyway... not sure why took so long. So no longer on it or aspirin. I take it ablation didn't work for you? Do you have cardioversion when it stays out of sinus? My brother used to have that a lot. He has an aortic pig valve that is nearly 20yrs old and still going strong! Sadly he has Parkinson's and Lewey Bodies and has been in a nursing home for 2.5yrs - he's one 62. Yes, I said no to Letrozole due to the v near osteoporosis (0-.5 off it saId the DEXA) and I'm already in so much pain all over with inflammatory arthritis and all sorts of nasty "bone remodelling" and tendon sheath issues + +. I struggle as it is getting out of chairs and up and down stairs, the hill, and using my hands etc and didn't fancy fractures etc.My Gp didn't suggest the Alendronic Acid even though I'm so nearly having osteoporosis - I'm impressed they put you on it. Who prescribed it?

I'm not having any treatment actually for the cancer... I declined the radiotherapy a month ago, as it would be very injurious to me short and long term they said as have quite active connective tissue diseases... lupus and sjogrens.. plus aortic regurgitation and it's on the left boob so right over it... and they wanted to do a 9inch by 5inch area (had radical mastectomy last sept) post third recurrence lumpectomy two months ago.. I just wouldnt be able to manage as live on my own and don't have a partner... so, made a choice... which I know is probably a bit odd.. but quality of life etc is paramount - not being stuck in bed or cared for because the radiotherapy or medication has messed me up. I just can't face any more after quite a bit of surgery for the cancer and all sorts over last 5 or more years. I'm totally worn down by it and am trying to live for now! If Covid would let us! Oh to go to a gig...... and on an airplane to somewhere exotic... I can do that of course...but am petrified of the consequences... All my friends have had it now - on way back from france, gong to gigs and other gatherings. I had my 5th jab yesterday and had nasty reaction... last night and this morning was awful but am now drugged up on dehydrocodiene and para's plus tons of water. so it's been 32hrs now but still struggling... but out of the loo where I spent much of last night!

Yes, the heady cocktail of medication and treatment.... It's like a machine once you get in it eh? Thankfully my cocktail isn't too bad for me... but I only take things that don't knock me for six.

I do hope you are OK, and wishing you all the best on your journey to better health.

Take care too, D