Pulmonary Embolism

[Neona]

Has anyone else had a pulmonary embolism please and how was it treated and how long did it take to clear up? Mine came in hospital after my surgery and I am on injections . I feel uncomfortable and scared.

[ricky23]

Had a blood clot after first ever chemo.... Taxol/Carboplatin. Had to go into hospital and was given Fragmin injections ...then had to do them myself at home. Just covered in bruises at the time !!

[Neona in reply to ricky23]

How long did it take to recover and did they give you further scans to see if the clots had gone?

[ricky23 in reply to Neona]

I had to stop Taxol & Carboplatin. Yes had further scans . Now on Carboplatin but had to stop due to white cells being too low. Hope to restart January with G-CSF ? injections. I havnt had anymore Fragmin injections since Spring. So feeling more positive .

[Hidden]

I have just started 6 months worth of daily injections, small clot on the lung!, I've had 2 before, one at my first scan before starting chemo, then second after my surgery, don't know where this one has come from. Not nice, but needs to be done. I have finished my second line chemo and am on Avastin for maintenance. Hope they go OK for you, If you can't give them to yourself, maybe someone else can do it for you, Good luck xxxxx Jeanette

[Neona in reply to Hidden]

yes am injecting myself and it is horrible.

[meboo]

Mum had one picked up on routine scan, just 4 days before she was due to go on hols to Majorca. She was told to inject fragmin for 6 months, but was cleared for flying as planned. Once you are on the blood thinners you are mitigating against any risk of further clots developing. Mum's team were pretty laid back about hers, though she did have chest pain for a couple of weeks

[Neona in reply to meboo]

6 months does seem a long time.

[Choski]

No personal experience however my mother had a PE a few years ago, she was in hospital and they sorted her out with injections etc then she was on warfarin pills. May not be the same treatment though but it was sorted and all ok quite quickly although scary at the time as I'm sure it was for you. Thinking of you, take care and virtual hug for you too

Clare xx

[Neona in reply to Choski]

Thanks for your reply. I am on injections but I think this is going to be reviewed for pills later.

[GBIRVMIC]

I had a blood clot on my right lung found 2 days after OC surgery. I've been on Fragmin since 1st Jan self-injecting every day. Finished chemo & Avastin in June now on just Avastin until Feb and staying on Fragmin. My thighs are so bruised and sore. I'm hoping when I finish Avastin I can stop them however Warfarin has been mentioned for 6 months but I don't want to have that. I'll discuss with the Onc in Feb. Love Michelle xx💐

[Neona in reply to GBIRVMIC]

oh no this seems a very long time for it to clear up. Do they check with a scan to see if it is still there?

[GBIRVMIC in reply to Neona]

I was supposed to have a CT scan after chemo but my Onc said to wait until after I'd finished the 18 rounds of Avastin. It's also to err on the side of caution whilst on Avastin... but I have had enough of them. I have 4 more Avastin to go.. and counting!! xx

[RonLitBer]

I had several clots show up after a scan for elevated lipase. I was told the clots were from cancer and/or chemo. Told I had to be on blood thinner injections for at least 6 months. I asked about pills as a blood thinner substitute but was told that I could not go on pills and it had to be the shots. My partner is giving them to me. Sore and bruised. Am getting them on my upper thighs. I was asked to be part of a clinical trial that was judging a pill compared to the shots. There is a desire by the provincial government to be able to have people take pills rather than shots for several reasons; one is ease of administration and the other is cost.

[GoldenGourd]

Hi yes I had 2 PEs detected with a CT scan when I went to A and E because I couldn't breathe properly. I had just had my second lot of chemo. They said these form either because of the chemo, or because of the cancer or both(!?) So I have been giving myself the injections since end of August 16. The PEs slowly disappeared and were gone after about eight weeks, but I need to keep taking the anticoagulant injections to make sure none recur. You get used to the injections, and the nurse helped me find other places to inject after the op I had. The way to look at it is as another weapon or tool to help you fight whatever this ?!£& disease chooses to try and bother you with.

I hope you get used to it and find it less of a scary thing. Take care.

Netti x

[Neona in reply to GoldenGourd]

Thank you

[Cropcrop]

Hi neona, I was diagnosed with a PE at the same time I was diagnosed with my cancer, I was also diagnosed with hypercalcaemia at the same time. Don't do things by halves me 😳

The PE was relatively easy to deal with, I self injected heparin in my tum each day. (fragmin is a form of heparin I believe?) and I felt I was actually doing something to help myself. I injected for 8 months, initial prescription was for 6 months but my oncology prof advised to continue to the end of my chemo as the heparin protects the veins a little from the chemo. I had some spectacular nosebleeds and had to be extra careful as bruising easily is a bit of a problem. The hardest bit was remembering which side to inject in as my chemo brain made me forget 😂.

I know it hurts (I called it nettle belly because of the stinging feel after the actual injection) but a small injection each day isn't too bad really in the whole scheme of things.

You'll be fine I'm sure, have a lovely Christmas and new year ❤️Xx🎄Jane

[Neona in reply to Cropcrop]

Thank you for your kind words but what a long time!

[Cropcrop in reply to Neona]

I know it seems like it but it soon passes, honestly. Xxx

[Shrimp49]

I had clots & an embolism but not until a month or so after chemo finished.I had to inject Fragmin for several months then was taken off but 5 days later I had another clot! I am now on Rivaroxaban tablets probably for the rest of my life!

I refused warfarin & asked specifically for rivaroxaban ( I knew about it as I used to work in a pharmacy) it is a lot more expensive than warfarin but the dose doesn't have to keep being adjusted.

[annielawrie]

Been on Clexane over three years since being diagnosed. Clots have gone but I've been told I'll be on Clexane for life. Blood clots seem to run in my family. It must be the blood type. I just get on with it,yes at times it does hurt I'm a mess of bruises.But I'm glad to be here. xx

[Neona in reply to annielawrie]

Thank you for your reply and your strong attitude to the injections. I dread doing it all day.

[Heathpod]

Hi! I had a massive PE 2 months ago and am on rivaroxaban. I had fragmin, and found it hurts less if you keep it in the fridge.

The recovery process seems slow and I feel tired and weak, but the worst is the anxiety that im having another clot. Still waiting for follow up.

I hope you are doing ok. Ask doc why you can't have tablets. It's probably cost.

Good luck!

[Neona57 in reply to Heathpod]

Apparently the pills interfere with chemo. I had severe breathing problems half way through my chemo and both my GP and oncologist said it was very unlikely to be another clot while I was on fragmin. I was given a scan and the original PE was gone and there were no others. Have now finished chemo and stopped tje injections-such a relief-wish I had thought of putting them in the fridge!