Hi Vicki,

Sorry to hear this news and I hope the next appointment in 6 weeks brings better news. It is hard to come to terms with the numbers going up when you spent so long waiting for them to go down :-(.

I know from what I have read that light chains are more volatile than pp numbers and they can go up and down depending on infections and…[Read more]

Hi Les and also Janey

They say grief has different stages ,the frustration of not being able to do anything,the anger that the death has caused,and the emotional side of coming to terms with everything that has gone on,some are able to talk about it many are not.

I do not think you can learn these things or get any experience until you go…[Read more]

Dear David,

That is wonderful news, long may the excellent remission continue 🙂

Thank you for sharing as it gives me hope that Phil’s next line of treatment may give him this type of result.

Good luck on the 7th.

Megan

Hi Everyone

I suppose as I have been on here 3 years I am an older now,as some of the people who use to post,there partners or themselves have passed away,

I always use to reply to a new comer even if it was just a welcome,but a lot of general information has changed in three years,so I am out of date with new info.plus it really bugged me,when…[Read more]

Nice to hear from you Princess Fiona

My husband says my daughters are clones of me!!!!but I see them as children I am very proud of,so cannot complain.they hate to hear that they are like there mum. Lol

We had good news today,Slim is coming home tomorrow ,have arranged Slims new appointment at the Marsden,thought I had arranged with consultant…[Read more]

Hi John

Without are lovely Dai it has gone flat,a great loss,.

Hope your still laying cement without to many aches and pains,may it go on for a long time,
Never asked you what part of mersyside do you come from,or are you a wooly back!!!!!
Eve

I was diagnosed with both at the same time. The two do affect each other somewhat. When my RA is bad, my protein goes up as well. But I don’t think one can cause/lead to the other. Rather some people have more than one auto-immune disase as Jane says. Do note that RA often starts very slowly and many don’t know they’ve got it till much later;…[Read more]

Hello Ellen,plus Alice and Wallace

I must admit I am forthright and say it as it is,so what can I say except I am sorry if I offended anyone.

I am a carer and do use the carers section,concerning my own husbands Journey,because I realise that hearing from someone who is on a down wood path,is not good news.
everyone has a point of view and…[Read more]

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 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 Maureen,

I can’t help too much as my husband Phil’s MM is monitored by paraproteins but two months ago his Lambda Light Chains went up to 13.9 which threw the ratio out of normal range. I know these are tiny values but his consultant said it was probably just a blip as Phil actually has Kappa Light Chain Myeloma (although after the first…[Read more]

Hi Sharron,

Welcome to the forum, sorry you have had to join us, especially with such a complicated diagnosis. I know from experience of my husband Phil’s diagnosis of MM how complicated it can be to explain to people so I can only imagine the difficulties you have explaining LCDD.

My husband was diagnosed at the age of 43 and had his SCT at…[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]

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 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]