Pulmonary embolism

Hi

Goodness, you've been going through it. I'm really replying to bump you back up the list, but I do know there have been other people here who have had a PE while on treatment - hopefully they'll come along soon.

Sending virtual hugs and hoping you're doing OK

R

Welcome back , sorry to hear about the PE. Like ronstar I remember other posts re this and will tag if I can remember who.... but in the meantime a big welcome back hug! HFxx

Thank you ronstarand HappyFeet1it is much appreciated. I haven't come across anyone as yet who had a PE  but you have reassured me. I have had every side effect possible throughout but I remain positive as there are others that are worse than me. Sure I have bad days like all of us and it's nice to talk to others who are also going through the treatment. I do hope you are both doing ok and everyone else on here. 

X xxx

Thank you ronstarand HappyFeet1it is much appreciated. I haven't come across anyone as yet who had a PE  but you have reassured me. I have had every side effect possible throughout but I remain positive as there are others that are worse than me. Sure I have bad days like all of us and it's nice to talk to others who are also going through the treatment. I do hope you are both doing ok and everyone else on here. 

X xxx

Hi , thanks, I’m 2 years on from ‘active’ treatment (rads done in Jan 2019) and have 3 or probably more years of hormone therapy to keep the beast at bay! 
I did a quick search on PE in the group and Kacang popped up in a thread. I’m sure she’s been around a wee bit relatively recently so have tagged her. She had said in the thread that it was one of her side effects that had nearly gone unnoticed. If you read her profile you’ll see that she’s doing well. Hopefully she still comes on site and will respond, I just can’t remember when I last saw her here. You can search the group on a topic by going to the top of this page and clicking the magnifying glass icon. Then type in PE (in full!) and also click Breast Cancer Group. That’s how it appears on my phone, anyway. HFxxx

Thank you I will have a look and let you know xxx

My gosh Kacanghas gone through the mill. Bless her. Thank you for letting me know. I hope she continues to do well. All these drugs that are pumped into us hopefully will work it's a shame there are side effects nd make us feel poorly for quite some time. Thinking positive goes along way xxxxx

Hi @Beastiebeast 

I did indeed have a PE (multiple actually). I was very unwell - 2 weeks in ICU and another 2 weeks on the ward. The docs essentially said it was caused by irregular heartbeat (atrial fibrillation) which was in turn caused by chemo. While I was in hospital they discovered that I have a congenital deficiency in so-called Protein C which means I tend to clot more than normal. Because of that, I'm on Warfarin for the rest of my life. I don't mind though as it lessens the stroke risk. 

The atrial fibrillation got fixed and I continued on with chemo and herceptin (perjeta wasn't around then) and then radiation. That all happened in September-October 2015 so here I am more than 5 years from diagnosis and doing fine. It did take me a while to rehab and was hard work. My lungs are still slightly compromised - my oxygen saturation is around 93% which is in the normal range but low. Because of this I'm petrified of Covid but fortunately I live in Australia in a covid-free city. And i will be a priority for vaccination lol. 

So the takeout for you is that it's not the end of the world. Just make sure you exercise as much as you can for the rest of your treatment. 

PS Happy to (try to) answer any questions you have

Thank you Kacangmuch appreciated. I am back on herceptin and have to inject twice daily for clots. Hopefully I won't have any more. Very scary experience I have to say. You really did suffer and came through it which is an inspiration. Covid is frightening and hopefully we will all receive the vaccine soon. 

Take care and thank you

Xxxx