Hi Everyone

Thanks for your best Wishers ,we will make the best of what ever time we have,consultant from Haematology has not been near us,although he was in on Thursday and Friday,his off ice is across the corridor from the ward Slim is in. I was told decisions would be made at a meeting and they would come and see us,I waited all Thursday and…[Read more]

Hi Dusk

Well you have that right sceptical,but that’s my right too,it’s nothing personal!

I am aware it might of happened anyway,but even with a 30 delay,I have had a personal conversation with the doctor who was shocked. I told him I should have had a bet with him,I also consider it’s my fault as I new what it was,instead I said we will soon…[Read more]

Hi Sharon

It does sound like a very rare condition,and you do need to find people who have the same condition,for support and how they cope with it,do ring Ellen if there is some one else with related conditions she might be able to put you in touch with them,plus if you are going to have a SCT you have to the right site for info.
I would also…[Read more]

Hi Jean

Glad to see things have improved,make the most of this period and have a lovely time Eve

Hi S

Light chain deposition disease???

I must say it’s a new one for me,so I can understand why you feel so isolated,seems to be a mixture of Bence a Jones light chains plus amyloids .
I know from my husband his IGg bence jones light chains,show no protein,but it effected his kidneys.with Amyloids there are only 600 cases a year and only…[Read more]

Hi David

Why is attendance allowance not an option??????
My husband gets AA he is 69 had it for three years,it’s not based on how much money you have,it’s your right,day AA is about 38 pounds,full AA is 78 pounds,if you have a carer who does not earn any money you can arrange a carers allowance,I do not get it as I have a pension.

I would…[Read more]

Hi Keith

Well done you 🙂 and you can be forgiven about memory loss after what you have gone through

Stay well my fiend its all Onwards and Upwards now

Tom Onwards and Upwards x

Hi Clover

well I think its all ben covered by the great posts above.

Its a roller coaster of a ride for your Dad am sorry to say but he will get through it, you all will, you dont say how old your Dad is ? nor how old you are ?

Good Luck to your Dad on his road to remission.

Tom Onwards and Upwards xx

Congratulations to you Both am well chuffed for you both.

its what we all aim for,I hope Graham is now drug free for many a years its a great feeling I had four years drug free remission, we went and done what we wanted to do with no restrictions.

Get out their now and enjoy Life, once again well done and have a great time.

Love Tom Onwards and…[Read more]

Hi Dick

After 3 years plus on this roller coaster and learning an awful lot on the way,plus hospitals have very different ideas about when treatment should begin plus how test are interpreted !!!
We have come to the conclusion ,when you have your BMB have bloods taken before hand if you need any bloods or platelets have an infusion ,then they can…[Read more]

Hi David

Thats great  to hear ist finished but as I said when you started it ” No Rush to Use It” al keep checking and see

Take care David and stay well

Tom Onwards and upwards “Vasbyte” x

WoW Sarah

What a photo well done you its a great one I can tell you.

Good Luck to M now its on the go, its tiring in hospital as it is let alone the regime that M is going through  and am sure you all know I wish him luck and few side effects on his road to remission

Love Tom Onwards and upwards xx

Morning Rebecca

Not sure who will be doing the BMB Dr J did the last one and it was Ok ? Helen done two on me and I had one done in castle hill and that was the worse one .

As for the PN so far its not a problem ? I feel something but nowt to talk or write home about it was worse on my CDT just got rid of it for the darn MM to kick back in again…[Read more]

Hi Sarah

Am sorry i have no knowledge of the regime your Hubby has been put on just wanted to wish you both well on the road to remission.

Tom Onwards and Upwards  xx

Hi June

Sory to hear about your relapse,

had my CTD and Stem Transplant in 2009, but it kicked back in last december.#

I just had my Velcade (Cycle four week three)  I have Velcade, Dex and Zometa.

I am doing great with it albeit tired a lot but I listen to my body and when it tells me to sleep I sleep Ha ha.

I asked my Consultant Dr Jalihal…[Read more]

Hi Graeme

Not a problem, I found out that it had come back after having my regular bloods done, but in reality am sure my wife and i had known as i had lost weight again and that for us was an early indicator.

Bearing in Mind all MM patients  differ in how they cope from one to another even when on the same treatment that said I had to go on…[Read more]

|Well Good Folk, my tip for the dreaded Hiccups  is as follows :::

Fill mouth with water, put fingers in your ears (so you cant hear) and then swallow slowly SLOWLY.

Good Luck it works for me when i get them on Steroids and even the my family and friends everytime

Tom Onwards and upwards xxxx

Hi Lois

I have one or two

Hiccups My Cure when you get them ::: fill your mouth with water, place fingers in ears to block them, then swallow slowly till all water has gone, (works for me every time)

surround yourself with nice people.

be honest with Family and friends with how you feel, honest it helps you and them cope better

Listen to your…[Read more]

Hi Susie

Sorry in my late reply and am sorry I cant help as so far i have a little bit of back pain but its (or so am told) arthritis ???   am sure your bloods will tell your Consultant if the Myeloma has kicked in and my advice would be to talk to him or his secretary and ask for more bloods to be taken and let them have a look.

Good Luck and…[Read more]