Clots on both lungs now - anyone else had this?

Hi

I'm sorry to read about the blood clots that your partner has recently had but pleased to hear how brilliant you thought the staff at the hospital were.

I don't have the experience you're after but I noticed that your post hadn't had any replies yet. This is probably because this is such an active group your post has slipped off the first page before someone with the right experience has seen it. By replying it will 'bump' it back to the top of the discussion list where it'll be more easily spotted.

x

That's kind,

Thank you

x

Hi there Pencil , so sorry to hear but glad that he’s getting treatment . Is SRT short for radiotherapy?? The reason I ask is mum finished her radiotherapy in early June for NSCLC and she is absolute exhausted . She’s also been started on iron tablets because radiotherapy can cause low haemoglobin too . She not really any better after 3 weeks snd after I read your post , now wondering if she has any clots ! Did your partner have any other symptoms apart from being tired? Any shortness of breath or pale skin ?or coughing up blood ?  No one has really seen mum and we have a consultant review on Tuesday but it’s on the phone ! 
it’s a minefield… just constant worry isn’t it ? 
take care and thank you , Fiona x

Hi Fiona,

SRT is the Stereo tactic radiotherapy that they treated his secondary cancer sites in the head with.

It's been tricky to see what causes what because as soon as he was diagnosed he was put on a high dose of steroids to reduce the inflammation in the head. They immediately ruined his sleep pattern.

One side effect we were expecting from the SRT was 'extreme tiredness so sort of wondered if it was that when he suddenly could barely stay awake, it was 2 weeks after the treatment so it all fitted...

On the Monday when we went to A&E it was more because of these dreadful cramps...he was pale and pasty looking which the previous day he wasn't, he just looked really tired.

I asked a couple of times over the few days if he was ok because I thought his breathing was just not quite right, it was nothing anyone else would notice, he said it was just being tired and then he would be breathing normally again.

He has not had the coughing up blood, did it maybe twice and only a spot, it happened again after the lung biopsy,  not really had any signs of lung cancer to be honest!

One thing I have always loved is that he is a cut above the normal, now I am finding it difficult because he doesn't have normal signs or symptoms or reactions. I am hoping that will be a positive when we start the chemo and immunotherapy in just over a week.

I think that you should impress this concern about your Mum to someone.

But also the consultant told us it can happen but it is not common in lung cancer to get clots.

It was because of a Macmillan Nurse saying that I should take him to A&E that we went. I can't help but think it could have been a bit different if we hadn't. He is now getting the clots sorted. He is also on reducing steroids prior to the chemo etc and is tired again but we have got the blood pressure monitor out and are keeping an eye on it.

When things coincide it's so hard to tell what is what.

I totally agree about the minefield and also it's really different from person to person. That's why I think it needs someone who really knows the patient to be around and to be listened to. 

Patients also often don't want to be a bother or are too tired to fuss etc.

Might be worth a call to discuss before Tuesday, even if it just gives you a bit of a chance of a better night's sleep yourself!

Fingers crossed for you and your Mum

X

Thank you so much for taking the time to reply. It means the world when you feel alone with all the troubles on your shoulders. Yes it’s hard to know what is causing what , also how long things would expect to last ( tiredness, because everyone is different !) and when to start asking further questions. You are also right about patients not wanting to fuss or be bothered with the hassle , that is certainly my mum.!! 
you take care and I hope all goes well with the chemo . 
love Fi x