Hi all – a little bit of GLOOD NEWS!

Re: Myeloma 11 trial

We saw the specialist yesterday who was really pleased (pp still at 0) and has reduced the revlimid from 25mg to 10mg so I am hoping that some of the side effects reduce. I have lost quite a bit of weight so I am hoping that will stop now and my appetite improve. I don´t have…[Read more]

Hi Dai
We have something on those lines and maybe everyone does. Anyway, we got a folder when we first started treatment which logs all visits and treatments – it also provides a brief intro to chemo,basic glossary etc. To be honest I haven´t really used mine as it was just yet another thing to cart around (and lose on bad days) but I can see…[Read more]

Hi Ivan
Look up Peripheral Neuropathy. if your symptoms are identical to a typical PN speak to your healthcare team at the hospital ASAP. The helpline card you should have for evening use will give you access to a Dr who can ansa the questions you have.
Min

Thank you one and all
He made it, got him home just in time to throw up! Said he had had salad for lunch. Followed by yogurt
Whats all that about then. I thought these SCT patients had to have a neutropenic diet. Doesnt anyone check that men as dopy as my husband should not have this kind of food.
Ah well perhaps it was just excitement at…[Read more]

Hi Cathy,
I believe you should have been given a card by the hospital that is treating your partner with phone numbers to ring in the event of a change in condition, reaction to the drugs or a temperature etc etc.
Now I have no personal knowledge of PN periferal neuropathy as it seems to be THE only thing my husband has not had with this blasted…[Read more]

Hi Cathy,
I am a carer too, never said this before but I have two years experience of it! I know I would rather not be here, but I wish I had dipped my toe in the water earlier so to speak as the isolation of having a husband with one of the rarer cancers is mind numbing.
Our nurse specialist was the only person we could refer to at the outset,…[Read more]

Thanks for the good wishes for tomorrow – we have crossed fingers, toes and everthing else!

If the Specialist thinks it´s wise for me to go so far we are thinking of investing in a horse transporter but my husband would have to drive down to Cataluña where our place is and I would have to fly. I did ask if I could go down with him and help b…[Read more]

Eve
During one of our heart to hearts, Peter asked me if I was ill?
Whilst I am not I am extremely tired and had made an appintment with one of the older female GPs in our practice no appointments unitl 1st week in september !!!!!!!as I am reaching the point where I need some pills to pop so to speak, feeling tearful and dreading the…[Read more]

I went to a leaving do last week. For an old workmate who had met at Training school in 1970
There were equal numbers of old and retired and new and serving colleagues.
Without exception all the 'old' people asked how Peter was, One young person asked too and another said Im sorry MIn Im frightened to ask how peter is in case it upsets you or…[Read more]

Got to have my two penorth as Peter has Kappa light chain too
This is getting complicated but I may be able to shed some light on the figures.
Only because I dug out some results form the time Peter was 1st diagnosed. and was awaiting his transplant and They are from Birmingham University too.
1column Kappa MG/L…[Read more]

Hi Eve
Peter did 5 or 6 cycles of Velcade. Getting two DVT s as a result after the second injection.
Once he was on Tinsaparin. (clot buster) he was in no danger from the velcade as the drug is taken for 6months as a prophylactic to prevent any further clots that the velcade caused. His lungs were never checked again other than with a…[Read more]

the day certainly ended better than it began at 2am.
He is esconsed in his single room with en suite so Score 1 point
He is responding to the iv anti biotics Score 2 points
He had a long talk and cry with the lead nurse Score 3 points
She is arranging for a professional to talk to him about his concerns more points
He…[Read more]

As it happens events overtook us, Peter started with a temp at 2 am and at 4 he would not let me ring the hospital. at 6am it was 39.3 and we had a blazing row, followed by me walking the dog.During which I rang the ward came back gave him paracetamol.
We attended early for his appointment and he was told he was staying in had a hissy fit but…[Read more]

Hello Sarah,
Its so nice to hear from you, I know its the DS who will do the work but I just felt I needed the Macmillan to stick the boot in and make it happen.
They seem to have so much clout and can shout and be heard where we would go round the houses and get nowhere.
She was excellent at getting what we wanted 2 years ago when Peter…[Read more]

Dear Julie
Thank you so much for your promt an informative reply.

I do understand how difficult it is to compare the two lifestyles as our house in Spain is also mainly on one level but rather big. Basically I can do what I want when I want there and my husband is proposing that we take our horses on holiday with us as we have facilities for…[Read more]

Hi Bridget
So very sorry to read of your rotten news. You are most certainly allowed a good long rant because I know having read your posts over recent months that the minute your short lived (by my standards) rant is over you will brace up, buckle down or whatever expression suits and once again face whatever you have to with determination and…[Read more]

Thank you Dai – perfect.
Do you think it would be good to hear from people who are enjoying some of the ·good new· times or perhaps setting themselves a goal, big or small and how they get on? It would certainly help keep me motivated in trying to achieve my own little ·daily/weekly etc. goals. It can´t be all doom and gloom or this stupid ill…[Read more]

Hi Sally
As usual all the lovely people on this site have given you some excellent advice but I just wanted to say a quick hello. All I can say is that I thought I appreciated my husband before I started treatment last year but having got through the transplant and a slow recovery I have felt so sad for anyone who has no one to support them…[Read more]