Hi DXS and lovely David.

I think may be I should have said it’s your right to apply and even appeal a claim.

Except my apologies David. Lol.

This in its self is a difficult subject,on one hand you have all the negative press releases people claiming benefits!!!?, and the other side of the coin many people who need this help who are not…[Read more]

Hi

I do not think the dosage is the same for all patients!!! It is decided on an individual bases,for example my husband had his main chemo at half dose as he had had kidney problems previously,but they had regenerated to a fairly good level.

As for remission, numbers do not mean anything,!!! You have to go into this knowing all the facts and…[Read more]

Hi, in answer to your query ref SCT? My pp level prior to SCT was 44, after SCT it was at 1.9. Stayed that way and has slowly gone up to 2.9. I am not on any medication, and have had one bout of infection since SCT. I am 70 in August, had SCT 18 months ago, feel and look good. Went to USA and Hawaii recently, had several UK holidays! get a bit…[Read more]

Hi Maureen

Velcade takes a little time to get going,so try not to worry,light chains,can vary,we no longer go by light chains,as they did not show a true reading after Thalidomide ,they read normal,but BMB showed it had gone up to 80 percent in bones.
I now tend to go on how Slim feels in himself then wait for BMB results,his has gone down to 10…[Read more]

Hi Sharron

When you are ill and trying to come to terms with everything it’s hard to be told,”sorry you have not got Cancer we cannot help you”. Did you laugh or cry?????

I would go to your local CAB,they have experts who will help you fill in the form,get a letter from the hospital for support to your case,jump over the first hurdle,and appeal…[Read more]

Terry

I did say it takes nothing from you!!!,believe it or not we are on the same roller coaster with the same problems,yes we are old age pensions and you are a young man with a family.

You would be very wrong to sign off from here,because we all understand your position.

I am sorry you find my opinions hard,I was just trying to explain it…[Read more]

Hi Everyone

I felt compelled to give my input on this,and I can tell you it is so annoying trying to get on line,!!!!

Terry let me explain,when you reach 65, you are entitled to very little,everything except attendance allowance,is considered by the amount of money in your bank account,money that you have worked and saved for your old…[Read more]

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]

Oh my Jill, a smile moment, dear friends always create opportunities for coffee and cake.

I haven’t tried to get travel insurance yet so thanks for the information about Columbus. We hope to take a break immediately after next appt in a couple of weeks so really helpful.

Kind regards Karen

Hi Eve

What a terrible time you both have had and I’m so glad to read that he is doing well. Slim is a real fighter and I know you don’t like it said but I’ll say it anyway “he’s lucky to have a feisty woman rooting for him”. Hope he improves quickly so he can continue with treatment at the Marsden, they seem to know what they Re doing

Know what…[Read more]

Hi Helen.
Yeah we’re back from our trip to Greece. Had a good time the weather wasn’t fantastic but it was good enough and not too hot! Already booked for a trip back in September as long as I stay healthy.
I had an appointment at maxo facial before we went and it was confirmed I have osteonacrosis of the jaw. Though all was deemed necessary was…[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 terry,
Know what you mean being 51, a young daughter, unable to work and little chance of increasing my pension pot – assuming of course I make it that far. However we don’t know DXS’s circumstances.

Our stress levels have been pretty high recently but there is a bit of light now that my MM has stabilised. I’m hoping the medics will sign me…[Read more]

Dear Mike

Thank you, you have not alarmed me. At the moment I feel that all information is extremely useful to me. It is hard not to over interrogate every thing I would previously shrugged off.

I have appreciated ( more than I can express) the advice, information and support I have received through this site.

Kind regards

Karen

Hi Terry

There have been some nasty bugs doing the rounds again this year and what you describe is what my husband’s had. He has a stupid cough, and a nose that is constantly manufacturing snotty rubbish.

As I’m the one with MM, I’m hoping it’s not catching!

I hope you get shot of it soon.