Hi Jo,
Saw the consultant today even though I was feeling pretty s**t and the specialist nurse whisked me off and did my obs just in case. They were Ok, I think I am still coming back from the infection and suffering terribly with swollen feet at the moment which while not painful in themselves, do give all sorts of weird pains up the legs. I…[Read more]

Thanks for that advice Eve. It really helps. I find it so confusing, as even though I had the fracture prior to being diagnosed with Amyloids, I had never had the pain like this last week. I am a bit confused with the next set of Velcade as well. Am taking oral antibiotics now for 10 days but they seem to think I will be starting the next cycle in…[Read more]

Hi Vicki, any small bit of laughter helps enormously I find but have found it hard to come by this last week. Been in hospital with a chest infection that I never thought could make you feel so ill! I knew I wasn't right on Sunday afternoon but took paracetamol and thought that would do it. Admitted on Monday with a soaring temp and such a low…[Read more]

Oh Tom, you never fail to encourage – you deserve a medal.

Hi Eve, I have followed your posts on here and know that Slim and you have not had an easy ride. It does help to share though and although not everybody gets everything, someone surely has and can reassure you.
I am finally feeling better 24 hours after in which I have slept a lot,…[Read more]

Routing for you all the way Jo 🙂 🙂

Hi Pia,

So sorry to hear about your MiL. I know from reading on here that everyone reacts to the drugs differently and hope that she tolerates Velcade as well as I am at the moment. I had the second injection today and must say that unlike Tuesday, I had to have a little sleep when I got home and I do feel a bit 'weird', but have just put some…[Read more]

Oh Jo, what a shame:-( My kidneys are affected too, but are so far holding their own. What are they going to do about it?
Love
Pat xx

Hi Jo,
Nice to speak to someome with the same attitude towards this stupid age thing as myself. It made me laugh when you said about wearing bright pink – guess what I bought today? A bright pink fleecy top to cheer me up now it is getting a bit cooler and pair of purple jeans. Let's hear it for the never get olds 😀
I don't have Myeloma,…[Read more]

Hi Megan,
It's encouraging to hear that Phil is also getting very few side effects. I echo your thoughts on the long may it continue 😀
Pat

Hi Michele,
Thanks for your comments. I have just spent the first part of this morning getting jumbo portions of a good hearty stew going in one slow cooker and a similar amount of savoury mince type mixture in the other. Will freeze them down later today because as much as my other half is wonderful and has taken on so much more just lately, we…[Read more]

Flippin eck Peggy! Do you know if this happens to everyone on VCD? I start treatment on Tuesday for AL Amyloidosis and was hoping I would keep my hair this time. I had breast cancer in 2003 and lost my hair then. Not insurmountable, but we are coming into winter and it will be a bit cold to say the least.
As for the dry, brittle hair Faith and…[Read more]

Thanks Michele/Tom. Yes it is like MM and so is the treatment. Nasties in the bone marrow produce proteins which attach to and impair the function of various organs. Until I go to Royal Free and have this special scan they are not sure exactly which organs are affected, but so far it seems to be the kidneys and the heart and possibly the spleen.…[Read more]

Asolutely! That's just what I was telling my other half when the MRI appt. came through this morning. He is getting all worked up about it, but that's pointless and such wasted energy. The more information they have, the better they will know how and what to treat I say. But yes, I am a bit fed up with all the tests and secretly a little bit…[Read more]

That's really great Michelle. My NHS GP was great in spotting it from the blood tests I had for something else and although she referred me on a 2 week cancer referal, by the time the hospital contacted me within the 2 weeks, it was another 2 weeks before I saw a specialist who ordered all the tests. So far I have had ECG, kidney scan, kidney…[Read more]

Thanks to you all for your positive comments. I saw the blood docs yesterday and the whole gamut of tests have now got under way which is a positive move. However, the consultant is of the opinion that it is more likely to be Amyloidosis than Myeloma. I had to go and look this up when I got home as I had never heard of it before and the…[Read more]