Breast Cancer Care Forum

Can I ask how it was when they eventually dissolved? Was it very gradual or sudden? Jayne ... View more

Thanks so much for your reply. Mine started in April and my breathing got a lot worse at that point. So far no particular improvement, and I'm told they could take up to 6 months to resolve. Glad to hear that yours improved, it gives me hope as I'm quite down about it at the moment Jayne @asilmcs wrote: I had numerous  blood clots in my lungs after starting Capecitabine and I am too on daily injections. It’s been about 18 months since I was diagnosed with them so they should be all dissolved now I hope, my breathing is greatly improved but it did leave a part of my lung damaged and not repairable. On the whole I don’t feel it affects me greatly now I still get breathless when I exert myself too much ie going up hills.  How long have u had yours? I was told it can take a long time for them to go especially if you have a lot like I did.  Any other questions just ask, I hope this helps xx   ... View more

Hope mine dissolve soon! I’m really breathless because of them, but strangely comforted that it is the clots and not the disease.. On the plus side I’m getting lots of sewing and knitting done! Jayne ... View more

Hi Ramada, Apparently it is a SE- one in a hundred patients Mine comes and goes Jayne ... View more

Anyone else experienced tinnitus on Cape? I have a really buzzy right ear! Jayne   ... View more

Hi Lynnq, Apologies I didn’t see your reply until now! Thank you so much for your response. I’m now home after hospital, complete with chest drain and have been on Cape for 8 days. So far so good. ... View more

A quick update; had my permanent drain fitted today.  Feeling better and breathing easier already. Home this weekend to start my new chemo, I’ve got my positivity hat back on! ... View more

Thank you so much Sarah. Feeling a bit better today and hoping that there will be enough fluid built up tomorrow to site the drain. All this time in hospital doesn’t help, and I had a negative day yesterday. The breathless feeling is awful and frightening when I exert myself even slightly. ... View more

Having a difficult day today. I’ve been on the oncology ward for 4 weeks with s weekend home in the middle- despite pleurodesis the effusion came back and I had to return to be drained again. Now transferred to the general hospital respiratory ward for a permanent drain fitting on the right side. I was supposed to have it done on Monday, but not enough fluid built up yet so might be Friday now.. Impatient to get home and start Cape pills as the Paclitaxel didn’t work. I’m so breathless too. Feeling stranded and harbouring hopeless thoughts today. Anyone got any positivity to share please? ... View more

Thank you Vicky, that’s really helpful. I’m seeing my oncologist tomorrow and want to discuss this with her ... View more

Can anyone tell me if it’s possible to have a drain fitted and have chemo at the same time? They are struggling to control the effusion, despite having pleurodesis last time. Oncologist is swapping me onto Cape tablets, but I feel I’m losing treatment time waiting for the fluid to go. She seems reluctant to give chemo with the drain in situ ... View more

Certainly is Angiepops! I coped really well first time round 6 years ago, but this has steamrollered me. I've read some inspiring stories on this site, and I am very cautious about looking elsewhere, as it's invariably out of date information. I too am very up and down, but I am better than the first dark days before starting treatment. I think that anxiety has given way to sadness now, and I'm starting to dare to look forward a bit. It's awful that your hospital has not been supportive, and I hope you find somewhere else to get what you need. I had some good support from the helpline on this site, very helpful at the beginning when I was all at sea. I'm sure work will be a distraction; I'm really missing my colleagues but not the work! I ... View more

Angiepops- sounds like you and I were diagnosed around the same time. I too have found things very frightening, and Christmas has been difficult. Does your hospital have a wellbeing centre where you might get support.?Your bcn would be able to help you with this? I am having some counselling at my oncology centre, and gradually starting to put things into some perspective (not every day!) I have also started an increased dose of anti depressants and they are helping with my darker thoughts.I'm hoping that the start of 'routine' life after the holidays on Monday will help too; I'm currently off work, but hoping to get into some sort of new routine while I undergo chemo. Sending you my support and positive thoughts. You are not alone, and I guess that it takes everyone a while to come to terms in their own way ... View more

Just joining in for a bit of support. I was admitted onto the oncology ward on Boxing Day with a chest infection; I already had breathlessness which had been exacerbated by the Paclitaxel so not good! I’m having IV antibiotics and steroids and feeling much better, in fact there is some suggestion from the CT that there has been an underlying infection for a while. Not sure if I will be allowed home today as there is talk of a chest drain, despite my consultant saying it wasn’t necessary last time I saw her. Feeling a bit fed up, and trying to convince myself that next Christmas will be better.. ... View more

Thank you for your replies. I hit a wall yesterday when the onc told me I may not be able to tolerate the Paclitaxel; overtired, oversthinking and just plain fed up! Today I have pulled up my Big Girl Pants and decided to look forward to seeing my gorgeous pocket rocket grandson tomorrow! In the meantime I am working to manage my breathing and bought a v shaped pillow to help at night. Part of the problem is that my husband works away Mon to Fri, so the nights alone can be scary. He is now home until New Year. I understand now that there are alternative chemos I can try if this isn’t possible. Thank you all, you are a lifeline. ... View more