Breathless forever!

[27-359]

Further to my search for a cure to my breathlessness, it appears there isn't one. I found out that I have persistent macrobiotic anaemia, but this is not the same as anaemia, as my haemoglobin is fine.

The hospice rang me yesterday, and the nurse explained that the change in my blood cells is due to my last lot of chemo. (Carbo/Caelyx) . She is going to send me exercises to help while I am experiencing shortness of breath and getting a prescription is Oramorph, which is to be taken in a small amount if the condition becomes really distressing. I hope it doesn't come to that! Just another unwanted side effect from a cancer diagnosis and treatment!

Jenny

S

[Lovedogs41]

Hi thereSorry to hear this it must be awful for you.Something I use and might be worth you looking into trying is colloidal silver,you drink it and nebulise it so it gets into your lungs.It is great for so many things,maybe worth a try! Take care xx

[27-359 in reply to Lovedogs41]

My lungs are fine. This is all due to a change in my blood cells. Thanks for the suggestion though. My daughter is a great fan of colloidal silver.

Jenny

[Suds0812]

Hi Jenny..

To put it frankly it's a bummer.. on a positive well for me .. your post sounds like we might be on the same path.. i became slightly breathless after the debulking , and just thought well thats it but having just read your story about the carboplatin/ caelyx ... its made me realise that my breathing has become more shallow and short... my last scan shows lungs are clear..

Can i ask how did they diagnose the persistent macrobiotic anaemia... was it via blood tests ? And if so did you have to request this... as my consultant doesn't seem at all interested in my breathing and its really debilitating and frustrating that you cant do the things you enjoy.. as if the this bugger of a journey hasn't taken enough already...

I would be really interested in seeing the breathing exercises you have been given.. which at least then you feel you are actively doing something to try and relieve some of the discomfort..

I wish you well in your fight and hope that your journey eases for you.. x

Sadie

[27-359]

As I am now on Rucaparib, I have a blood test every month. This particular condition is indicated by fewer but larger blood cells. It's nothing to do with the Rubraca, as it I had the breathlessness before I started it.

Jenny

[bamboo89]

Can I just check, do you mean macrobiotic anaemia or macrocytic anaemia? Or even microcytic anaemia? I ask because I'm already breathless, and now they want to give me Carbo/Caelyx, so I'm a bit concerned, because I do know my red blood cells are larger than they ought to be, but no one's mentioned that being a possible issue or connected with my breathlessness. I really don't want to make it worse than it currently is by having more chemo if its connected with my previous chemo last year, life won't be worth living, frankly.

I'd also be interested in the exercises you're given too...

Miriam

[27-359]

Sorry, I think spell check must have changed it. Should say macrocytic, and it definitely came on as I was finishing the Carbo/Caelyx regime.I haven't received the exercises yet, but will try to share when I get them. (Not sure how!)

Jenny