Ongoing breathlessness

Hi I was diagnosed with grade 3 TNBC in June 2021.  I had one cycle of EC which was switched to Paxlitacel and carboplatin, but only had one dose before the surgeon assessed that I needed a mastectomy.

I had 15 sessions of radiotherapy and all staging scans were clear.  I started capecitebine in December.  By February I was feeling tired and a little breathless. I mentioned to chemo nurse but we pushed on to the next cycle.

I managed 5 cycles and was seen by a doctor at the next chemo check up in March. My breathlessness was at its worst by then.  I don’t have a temperature, I’m not coughing, I’m not wheezing, there is no tightness of the chest. The only symptom is I’m puffing upon slight exertion (i.e. walking up stairs, hanging washing out). Chemo has been paused to allow me to recover.

They’ve been very through. They x-rayed me (clear), ECG (normal), echocardiogram (normal). The CT showed a small blood clot, for which I’m receiving injections in my tummy on a daily basis.  They also found a 6mm ground glass nodule, which they thought was infection/inflammation.  My CA15-3 count had gone up (29, 33, 36) and my liver tests were high.

I have had Doxycycline antibiotics and prednisolone steroids for any inflammation.  These haven’t helped.

I had a telephone appointment today with the doctor.  They’re a little stumped.  They want me to go in next week.  They’ll repeat my usual blood tests, and test my vitamin D levels (even though I’m already supplementing) and run thyroid tests.  They will also do a further X-ray.  So once again very through.

I’m concerned they’ll not find anything - which is good news but means the problem isn’t fixed.  They’re also considering suspending chemo - which they were giving me as more of recurrence prevention.  So I’m worried what the likelihood of recurrence is if I don’t take the next 3 cycles.

I’m really concerned. Has anyone else had similar problems? What did it turn out to be?  What resolved it?

Thank you x

Hi Snookie 

I’m sorry that I haven’t got an answer for you  
To be honest, I don’t know whether what you’re experiencing is just one of those things that happens to a very very small group …  

I was diagnosed with TBCN in mid Jan ‘22.  My treatment route is different route - 4 x EC + 4 x Paxlitacel , then mastectomy + breast reconstruction, topped off by radiotherapy … However, I’m only in 3 x EC, and have become aware that as you mentioned, slightest exertion is making me breathless :frowning_face: … 

One particular aspect of your post resonated with me - Summer ‘21, I was diagnosed with a severe deficiency of Vitamin D. … this was following blood tests to identify why it took me 3 hours over emptying the washing machine … Anyway since then, GP prescribed weekly 10,000 unit tablet of Colecalciferol which has increased the levels.  Until a couple of weeks ago, I was also topping it up with a daily 1,000 unit tablet to boost the system whilst it’s undergoing a major chemical warfare …maybe that’s the clue for our bodies? 

As I’m due to see my Oncologist next week, it will be the ideal time for me to raise the breathless issue. 
Wishing you a Happy Easter :hatching_chick: and catch up with you soon,  Xx