What a lovely little boy, congratulations to you all. I also had good news on Saturday. My daughter and her wife in Canada signed the adoption papers for baby Beatrix born 19th December 2012. She is tiny weighing 2lbs 12oz at the moment but is breathing on her own (still has extra oxygen though) and is feeding well. This is my first grandchild…[Read more]

Hi Tebebe,
So sorry you have had to join this forum. I am sure we will be able to help in all sorts of ways.
I have AL Amyloidosis and was diagnosed in August 2012. I have been having Velcade, Cyclophosphamine and Dexamethasone as treatment. Frequency and dose have had to be altered as the initial regimen didn't suit my body at all. I am coping…[Read more]

Bears are good Jo. I am more like a stick insect at the moment! Going to get a couple of pairs of jeans in a smaller size today. Fed up with the ones I have at the moment hanging off my bum. Hope the velcade gets better love. You don't need any more things to put up with. Thought I would start on Xmas yesterday and made some sausage rolls. Big…[Read more]

Hi Jo,
Sorry to hear about your transfusions. Hope that improves for you. All good news from NAC in that my bloods show I am responding well to treatment. The scan shows that the amyloids are centered in my kidneys (already knew that with function at 51%),also liver and spleen with no adverse effects to the last two organs yet. The follow up is…[Read more]

Hi Jo, hope the MM conference goes well today. I live in Loughborough so quite a long way from you. Had a cardiac MRI yesterday and a very weird reaction to follow. Thought I was going to end up in hospital but managed to ride it out. Let us know how the conference went.
Love and hugs
Pat xx

Hi Jo, I can't remember how much cylco(Just thrown the box away) but I have to take 8 tablets on days 1/8/15, that's following three out of the four subcut injections that make up each cycle. Dex has been reduced to 10 mg for two days after each velcade. Consultant said that if I was managing OK on this dose she was going to increase the dex for…[Read more]

Hi Jo, Had no 3 of 4 today and since the dose of both velcade and dex has been reduced I am coping much better. Hope you do too and if I can help with anything I will be only too glad. Got my purple jeans on today – they do help to lift your spirits!
Keep well
Love and hugs
Pat xx

Hi Peter, It was so encouraging to hear about your side effects and realise that these are 'normal'. It makes it easier to deal with when you know that. I wish you well with SCT in January. I know from reading on here that it is not an easy journey, but oh so worth while. Tom's 'Onwards and Upwards' keeps me going so many times – maybe I should…[Read more]

Thanks Mavis. As you say it is the little things that tip you over and make it feel like a real uphill battle. Silly really, but that's human nature isn't it? I read your good news in another post and I am so pleased for you. Long may it continue.
Love and hugs
Pat
xxx

Thanks for your reply Ali. It does sound similar to your Mum I must say. Once you know someone else is experiencing the same things as you, you relax a little and realise that this is your 'norm'. It is just finding out what that is for you and can be quite unsettling.:-S I do feel better today thank goodness-just in time for velcade again…[Read more]

Hi Clara, Thanks for your reply. Unfortunately I was being very optomistic and I have had every bloomin' side effect in the book since then! I also got a chest infection and spent a week in hospital then last week spent a day in hospital rehydrating as the tabs given to reduce the swelling in my feet and legs were taking too much fluid out and…[Read more]

Hi Gayle, thanks so much for your advice. I did contact the local council and the lady I spoke to there was really very helpful. She is sending the form through and told me which sections to complete. She even offered to go through it with me should I need her to. I am not eligible for an allowance as working for Loughborough University I am…[Read more]

Hi Eve,I think we may have finally got to the bottom of the pain. The consultant reckoned it was nerve pain from the PN and also the swelling in my feet/legs. Mind, I think the e-mail I sent her at 4 o'clock in the morning may have brought it home and spurred some action. She is good though in that she asked for the GP number (which the surgery…[Read more]

Thanks to everyone for their advice. I spoke to the local council today and apparently the one sheet claim form is no longer available. They were very helpful though and are sending me the forms. I really hope I am successful as it will make such a difference.

Keep well
Pat
xx

Thanks Tom. I already have my bus pass as I am perhaps just a 'little' more senior than you ha ha.
Pat
x

Thanks Sarah, will get in touch with them and see what they say.