Hi Alison
Kids are lovely,I could use a few sayings to describe Slim at the moment,but I do not think it would go down well on site plus,I do not think people (except Tom ) get my sense of humour,what I found very funny is my 2 granddaughters came to see Slim,and on the way out,asked there mum could they kiss him,they are 14 and 10??.I thought it…[Read more]

Hi Everyone

Looking back at Slims time on Dex during ctd and velcade,he started with 40 reduced to 20 after pneumonia and blood clots on the lungs.

Dex 40,hell to live with,played tricks with his mind plus hid how ill he was!!!
Dex 20,I had my Slim back,would have liked him with more energy and the will to eat!!!
Keith 4 days on 40 of Dex…[Read more]

Hi Everyone

Well all this is thought provoking,even in the middle of the night or in my case early in the morning:-P
I think you have two different levels of people with Myeloma here!!!!
Dia can I put you in the latter group of a very limited life span!!!{ no offence is intended}:-)
Then Helen who has taken CRD as first line…[Read more]

Hi Everyone
Well I for one am glad that this subject is being openly talked about.
First may i say Amelia on Myeloma Trials which you should find info on this site,after SCT you are randomly picked for maintenance or no maintenance,Helen was luck to be picked.
Helen we need more people like you to get on your soap box,because with it comes…[Read more]

Hi Mari ad Ali
Watching and waiting is very hard, I do hope you make it to holiday Mari.

Ali, is your mum back on Clexane now? If she thinks there is another clot she shouldn't really hang about, get her to ring the hospital for advice.
I shaved my own hair off, I caught sight of my thinning locks in the mirror and the clippers were in the…[Read more]

Hi Eve and Keith and Amelie
I have been only treated with revlimid, cyclophosphamide and dexamethasone as primary induction, part of the myeloma xi trial which is comparing current best treatment with new ones. I spent 5 days deciding which would be my best option in that raw stage between diagnosis and treatment start. I cried a lot, it was a…[Read more]

Hi Mari and Ali
I hope you do manage to get away,will do you both the world of good,school brakes up soon,so that will be a rest for you Mari.

I agree Ali your mum is very brave,must be holding a lot of those emotions in,SCT is not only body draining it takes you in to another world of emotions,so your mum is holding her own,by taking control…[Read more]

Hi Dai
Well I would agree,and can see what you mean concerning damage to the skeleton,as you are aware Slims skeleton damage is extensive,but at least no compression,so the ability to put one leg in front of the other is there,even if there is pain.

My concern is you attend the hospital,bloods show no markers of illness,but as a carer I see a…[Read more]

Hi Helen
Well to some extent I would agree with your outlook concerning second cancer,but I also think it depends on what second cancers are rearing there ugly head,for example percentage wise are they blood cancers,they must have some dater on it ??????
If for example it was causing (PCL) using that as an example!!! as we know of at least one…[Read more]

Hello Dai
I like the old saying ( you are as old as you feel ),I think this should apply to health, (you are as good as you feel )
Your bug or what ever just might have been that, a bug,that even without the MM might have knocked you off your feet anyway.I have just had the same with all the symptoms you mentioned.
As a carer I look at…[Read more]

Hi Amelie
The Revlimid marketing application has been pulled from Europe as the Authorities asked for " more mature data " to be presented before a decision could be made on its safety. Ergo more research needs to be done. As part of the myeloma xi trial, revlimid is used as primary treatment and as maintenance, this is still the only way it…[Read more]

Hi Ian

Yes there has been discussions about curcumin on the forum maybe a year or so ago and I know some did and do take it and If I remember rightly there was a blogg I think it was called Margaret's blogg and if I remember she was a great advocate of it. Somone else with a better memory will be able to tell you more. If you do a search on…[Read more]

Hi Mari
I know110 for Platelets is low,but Slims have never been above 50,so I have given in worrying when he walks into a door or knocks himself,apart from wrapping him in cotton wool,I cannot do any more,and my attitude is if internal bleeding is the danger,why is no one very concerned.!!!!

I would agree they need to be very stubborn just to…[Read more]

Hi Etta,
I am sorry about your sister,I know a few on here who have had the same thing going on in there lives Jean lost her brother,I lost my Grandson,so we do understand how you feel,myeloma is hard enough without a death of a loved one.So you are entitled to feel low,we can only off sympathy,and a realisation that we do know how you feel Love Eve

Dear Etta

I am so very sorry for the passing of your sister. Life can deal us some terrible blows but this is a brilliant place to rant as much as you like. My sympathies are with you and your family. Please take care of yourself

Love Jean x

Dear Etta
As Mari says, ramble away, I'm one of 4 girls and all my sisters are all close, I'd be devastated if anything happened to any of them, so you have every right to feel right down in the dumps, not least because of the stage you are in your treatment also. Life is so unfair sometimes.
I had a whinge and moan yesterday for no real reason…[Read more]

Hi Trish
All conflicting info, I suggest you ask your consultant as there are probably different local rules.

I'm told that if you have auto SCT, the cells put back include lots of our other white cells including antibodies from previous vaccinations, which still carry the blueprint of our previous immunity, therefore there is no need to…[Read more]

Hi Mike

Well as you know,the patient does not get much choice,it,s either trials or treatment as laid down by NICE and all of this is still a post code lottery, If you are lucky and can find a Haemotologist that has a special interest in Myeloma and also has some perspective about the awful damage and pain it causes,physically and…[Read more]

Hi Amelie
Well i hope John has a good recovery,and starts to feel better,I do not envy you a winter in Denmark,but I suppose as we are use to wet weather you are use to the snow and cold,my husband spent many a winter in Denmark,one of his hobbies,was blowing wholes in the ice and diving,use to be in the Marines!!

I was interested in your…[Read more]

Hi Andy

Good luck with the Radiotherapy,
As to the catheter,well the question must be why did they put it in????loss of control or your condition at the time it was put in?????.
There seems to be grey area,s with your low back,chemo works on any form of cells,they know chemo has not worked to reduce your cells,so why have they not given you…[Read more]