Denosumab and chest pain

I went to see my Oncologist this week as a follow up to my new treatment. I was having sharp pains in my chest. I checked my blood pressure and oxygen levels at home and all the readings were fine.

Anyway, he decided I should have an ECG. It was all over the place. The nurse wired it up wrong. It took 3 of them to sort it out. Actually we were laughing as there was no gown to put on or bed sheet to cover me. I’m not vein, it was in a single room and a privacy curtain was drawn across.

So, due to this irregular reading my Oncologist sent me straight to another hospital to see a Cardiologist. This hospital is just two minutes away from my Cancer Centre but it’s old and dirty. There’s lots of Covid patients in there also. I freaked but went.

Firstly I went to A&E that was full of drunks with bleeding heads and groaning homeless (poor souls). Again I freaked. I was told to go next door which I did and that was wrong. I finally got to the correct unit which wasn’t to bad and sort of isolated (I thought) from the main hospital. They had a bed for me and did another ECG, took blood and checked all the normal things. I even saw the Cardiologist who was great. Anyway after 3 hours and me asking the Cardiologist came to see me to say all my bloods were fine, apart from liver function probably due to new meds and he was waiting for the blood results for my heart. I waited five hours and nobody came to see me. A nurse said she would check and never. So, rightly or wrongly I got up and walked out with absolutely nobody around to check me. I was fuming. The Cardiologist said that the Denosumab and my new drugs could cause chest pain and that was most probably the problem and it will go away eventually. Great.

At 23.30 a nurse called.Where are you she said? I told her I was home and asked if there is a problem. She said my results weren’t back. As an urgent case how can it take six hours. I felt fine and told her that. The hospital were going to call and let me know the result. That was Wednesday. It’s now Saturday. Oh well! I understand I’m not the only patient but the NHS must be so short of staff that no one realised I had gone for two hours.

I am grateful for what the staff do and for the treatment I have had so far but lack of attention to detail can cause loss of life. If I was an urgent case what happens to non urgent cases.

HAPPY WEEKEND EVERYONE

[Garden-Lady]

Yes. One of the reasons I declined this medication...

[Hidden in reply to Garden-Lady]

I’m in doubt now. I will have a chat with the medical team when I next see them.

[viennagirl]

I am sad to hear of all the confusion and bad experiences you are having with your medical system. I know all our medical systems are stressed right now but it still makes me mad that someone with your health concerns are left dangling while they take care of people who couldn't be bothered to get vaccinated. Those people are putting all of us at risk. It just boggles the mind that there are people who say they don't believe in COVID but go out and by horse drugs to prevent themselves from getting it or in some cases are trying to treat themselves. I thought that most modern people know that science is why we are all alive. Since vaccines were discovered so many more of us are alive. All of us ladies who are battling with mbc know that we are here because we are benefitting from scientific studies. So it just infuriates me that you have had less than perfect care due to the hospitals filled up with COVID cases. In BC where I live almost all the COVID cases in the hospital now are the unvaccinated people.

I hope you are going to be okay Flowerfairy. All the best Marlene.

[Pachira in reply to viennagirl]

The vaccine was designed to reduce symptoms of the disease. It was not designed to prevent people getting Covid or in fact for transmitting it. I believe I had Covid in December 2019 which might explain my severe reaction to the second dose of Moderna as I already had antibodies In my system. In July this year my son who is also vaccinated and in the military caught something which he passed to me. I eventually went to immediate care and was prescribed a steroid and antibiotic but was not tested. The fatigue made me wonder. Anyway the point is if someone chooses not to vaccinate then their symptoms could be worse than a vaccinated person It’s best not to fear Covid as it’s going to be around fir a long time I’m glad to see Rapid response teams being Set up to take the load off the hospitals. I hope the NHS follow suit. Chris

[Hidden in reply to Pachira]

Yes. It is to help prevent and not cure. Unfortunately in our area it’s mostly under 30’s that are ill with it. We are also in a heavily populated area of students so it causes more widespread. Best wishes and hope you have recovered well.

[Hidden in reply to viennagirl]

I share your frustration. The people taking up critical care beds in the US are overwhelmingly unvaccinated. Today a friend shared how a nurse she knows had to fight with a covid positive, unvaccinated patient to lie on his stomach in order to breathe better. The patient — who was unvaccinated- bitterly argued with the nurse and refused. She left exhausted and sad.

It is appalling that people like him insist on refusing the vaccine because he does not trust modern medicine, but still takes up a bed and won’t follow protocol. If that’s the case, stay locked up at home and do not bother going to a hospital.

I am so done with that attitude.

[Hidden in reply to Hidden]

Me to. They are taking beds away from poor souls that really need them. Medical staff never judge though. They are there to help all and credit to them that is what they do. So many selfish people but again they feel it’s the right to decide what they put into their bodies. Can’t win. Take care xx

[Hidden in reply to viennagirl]

So well put Marlene. I haven’t heard of anybody here trying to treat themselves but guess it does go on. Our friend was double vaccinated but she still contracted the variant. She is a retired A&E ward Sister. She is a fitness fanatic and teaches keep fit and goes to the gym everyday. She was so sure that once vaccinated she would be ok. How wrong can you be. It is very frustrating for us all right now. My heart goes out to the staff in the NHS here. They work hard we know but there’s mistakes that are being made that can cost lives. As a country we certainly need to plough more money into our health system and train more staff as we have lost so many. Take care x

[Hidden]

Don’t they realise that time is short and we can die waiting 😆. That sounded like a very frustrating day. They should have kept checking on you, and goodness knows why the results took so long. Doesn’t sound like a very good system there. They will probably send the results to your Gp (if they don’t phone you), but that could take an age as well. If you can remember the Cardiologists name you can phone his Secretary.Enjoy the rest of your weekend

Clare x

[Hidden in reply to Hidden]

Hi Clare, will answer message later. I don’t know who the Cardiologist was. He was a Junior Doctor. My Oncologist said he would call me Friday. That’s if he remembers. He makes a lot of boo boos. I’m at the hospital for Treatment Wednesday so I may be able to find out something then. It’s only the treatment centre with Cancer Nurses so I’m not sure they can access those sort of details on screen. We shall see. I did a four hour slow walk the weekend and felt ok. Fingers crossed it’s the medication working it’s way through. 👍🙏🏼

[Hidden in reply to Hidden]

Very impressed with your walk.Hope your results are clear and you can enjoy the Lakes

Clare x

[Hidden in reply to Hidden]

Went for treatment Wednesday Clare and heart blood results still weren’t on screen…..grrrrr…… crazy aye?

[Hidden in reply to Hidden]

WHAAAT?? You must have been so frustrated Cheryl, and I’m not sure those results are actually ever going to find their way onto the screen now. They have really ballsed it up.Hope you are feeling well though, that’s the main thing

Clare x

[Hidden in reply to Hidden]

Are you going to the Lakes, or did I dream that?

[Hidden in reply to Hidden]

Hi Clare, so pleased you enjoyed the break away and Bella is repaired. No you didn’t dream it, we are off to the Lakes 8th Oct for a week. Just hope the weather stays bright. With PM you now you are back. Hope the sore bottom heals 👍🤔

[Hidden in reply to Hidden]

Ahh October is it? Beginning of Oct is usually still nice weather wise. I will keep my fingers crossed. Some of the trees are already starting to change colour so it will be pretty even if it is chucking it down!!I’m back home now

Clare x

[Eliactida1955]

Hello! I went through this recently and thought it was my heart because of the sometimes pounding I would feel in my chest . It was like a thumping or pulsating feeling that would happen for 6-8 times then stop. They sent me to a cardiologist and ekg was abnormal. I went for a c t of the chest and it was found I had a pulmonary embolism -small clot in left lung. I’m on Eliquis until it’s disolved so we will see. Ibrance cause s pulmonary embolism and Covid does too. They also thought it was my recent airplane trip maybe a D V T. Hope all goes well🙏🌹

[Hidden in reply to Eliactida1955]

Hope you are ok now. I will follow up on my tests Friday. X

[Eliactida1955 in reply to Eliactida1955]

Wish you well. I finally go to M D Anderson on the 23. It’s now been three years since diagnosis- Never did surgery or chemo or radiation just Ibrance and letrozole. Let’s see what they say..

[Hidden in reply to Eliactida1955]

Really hope it’s good news. Take care x

[MaryCos]

I am so sorry that you are going through this. Hope you are okay and that they have more answers for you soon. xo

[stardust1965]

Cheryl I too am grateful for the NHS and I’m so sorry you’ve been through all that. Please do chase up your test results.

My home is in the South East of England and the situation is even more acute at the moment. My recent personal experience is that the NHS is under real pressure.

I had a medical emergency a few weeks ago and couldn’t get hold of anyone, even my GP (if you’re lucky enough to get to talk to a receptionist the appointments for that day are usually already taken and there are no advance appointments available anymore). So I ended up calling 111 which I’ve never done before. They have a back route to GP’s and arranged a call back from mine within an hour or two. So I eventually got the help I needed.

I also had a terrible experience in A&E just after I was diagnosed with MBC. It is not a place anyone wants to be especially overnight when there is a skeleton staff on who quite often are alone and learning on the job. A Registrar on duty had taken my husband aside and, to paraphrase, told him it was unlikely I would be going home as I had sepsis and did he understand how ill I was. In the morning a second doctor looked at me and my tests results and said the best place for me was to be at home as I was just suffering from a fever from my first Zometa infusion. I was not dying that day after all!! It was more harrowing for my poor husband. I contacted PALS a few days later so that lessons could be learnt from my experience.

I hope you do settle in to the new meds which I’ve also just started taking. Vicki

[Hidden in reply to stardust1965]

What a terrible mix up,and worrying time for you. We can’t get appointments either.mIts video or telephone calls. On the,other hand I have a designated nurse from our surgery and she calls every month. If I need a doctors help,she gets straight onto them and they phone within an hour. That’s I am grateful for.My husband went into shock as well. He couldn’t be with me and didn’t know what was happening. It’s just so worrying when they can’t be with you although we understand why.

It puzzles me how many mistakes are made these days.mI just don’t know how a diagnosis can me made over the phone. A&E are overwhelmed and I understand that. So many NHS staff have now left due to pressure or Brexit (won’t go into that).

A mistake was certainly made in your case and I really hope you are ok now xx

[stardust1965 in reply to Hidden]

Don’t worry, the A&E fiasco was two and a half years ago. And I’m feeling okay now, except for my hip which is slowing me down a bit. When my new treatment kicks in perhaps I’ll be running marathons. I didn’t before but who knows 😁 That’s good that at least you’ve got a dedicated nurse at your GP’s.

Brexit 🙄 I am currently working out how to keep my U.K. mobile number without incurring daily roaming charges from January. All the providers are reneging on this! Along with lots of other broken promises. 🙄 But of course a very real impact of Brexit on Brits is now not having access to European healthcare. This will particular impact those with MBC. The cost of travel insurance to Europe will hurt pockets once we start travelling again. ✈️

[Hidden in reply to stardust1965]

Glad you are ok.

Running a marathon aye? Let me know?😏😊🤔. Like me, never done it in my life although my sons did.

Strange you should mention travel insurance. We were looking at taking a short cruise next May for our 25th wedding anniversary. I haven’t looked at any insurance quotes yet. It could put pay to the trip if it’s to expensive. You can never get a signal when cruising but I shall use my WhatsApp when I contact anyone. Can only try. The joys of this. Whoever voted leave, and everyone is entitled to their opinion, must look back and think twice about the implications of it all.Wishing you all the best

Cheryl

[stardust1965 in reply to Hidden]

It’s always good to have something to look forward to Cheryl. I was in NZ in Feb/March 2020 (yep, just got under the wire) and used InsuranceWith but it’s a different world now for travel insurance. You’ll probably find if you go on-line the “computer says no” (because of the MBC diagnosis) so you will need to phone them up. You have to be prepared for a lengthy phone call and to discuss every medical detail. It can be quite intrusive so don’t do it on a day where you are feeling a little wobbly (or is it just me who has those days?). Macmillan and Maggie’s centres could probably provide an up-to-date list of possible insurers. Hope you have some success 🤞

[Hidden in reply to stardust1965]

Hi, tried them and they are not taking new quotes at the moment. Think this is going to be a task on its own……🤬

[RLN-overcomer]

WOW Sister/warrior GOD knows these hospitals may be over taxed with Covid patients. I do hope/pray your results will come back okay.😇🙏

[Hidden]

What a mess! Good luck with all this!

The US insurance based health care system has its problems, including poor coverage or none at all. I’m grateful we have good health insurance via my husband’s employer.

It is so frustrating reading how many folks — even with NIH coverage - don’t get the proper care they deserve. I’m sending a healing hug your way.

[Hidden]

Sandra I am so grateful for your detailed answers. I understand everything you say. I have respect for all these poor souls that seem to go to A&E so often but I found it so overwhelming. I was in shock from even having to go there. There was no mask wearing or distancing. That’s in the past now.My Oncologist is calling Friday as a follow up so I will find out my results then as both hospitals are connected. I did a four hour easy walk the weekend and was fine. I’m just hoping it was the new drugs working their way around my system.

Thanks for replying and the info.

Best wishes

Cheryl