Hi Everyone

I do not usually look at newcomers postings,mainly because after 3 years being a carer of someone with Myeloma,things have advanced so much concerning treatment,but just reading this post made my realise that the emotional side never changes,but I do think after going through the emotions of shock grief,plus usual problems,things do…[Read more]

Hi Terry and David

Thank you both for the information,it’s worth making a note of!!,because of the fact of it only lasting 24 hrs in the body,so it,s important that it is taken everyday at the same time,you assume there is no build up of the drug in the body.
Why should it be ok with Velcade but not Revilimid ?????
I also think people assume if…[Read more]

HELLO JEAN
I had shingles a couple of years ago it was the most painful thing I have had it was right across my back the doctor should have given him some aciclover not sure how to spell it I was given that but the best relief I had was putting organic cider vinegar on it this really dulled the pain smelt like a chip shop but it worked how are…[Read more]

Hi Terry

Well you have answered my question!!!!

Slim was on CDR,when he was prescribed RIVAROXABAN ,he only had it for 2 months,and 2 cycles each time not being able to complete the cycle because,of sepsis and very low blood readings,platelets and neuts hit rock bottom.( looking back an awful time ).
He had to stop chemo completely,and after 2…[Read more]

You can vary the Dex ,take half dose or even taper off it slowly. There are other things you can take in the steroid department if it just Dex that does not agree with you,and I am surprised this has not been suggested by consultant !!!

As for alcohol !!!! Well need I say more,odd wine or beer yes,spirits,never.Eve

Hi Terry

My husband has been on Claxane off and on for a number of years,and seeing the consultant after he had a blockage in the artery,and had to up had to up his dose from 40 to 100,he made a remark about being fed up being a pin cushion!!!
The consultant said he could have RIVAROXABAN but had to make sure he took it daily as it worked only…[Read more]

Hi myelomaminx

When you had your growth injections did you get pain in ribs/back and or hips ? Because when I had mine done in 2009 I had bad Iain for three days/nights just prior to the day of collection.

Just wondered, and good luck with the next time

Tom onwards and upwards xx

Hi Maureen

We will not know for some time if treatment is working,but in general is bloods and health are a lot better,plus he has just had a chest infection,but held his own with antibiotics ,so to me that is a measure of how his immune system is a lot better. His pain levels are better,you can tell just by his body movements,so I do think he is…[Read more]

Hi Maureen

Make sure you get away for a holiday before Ian starts treatment??

I often wonder about haematology consultants,how much they keep up with things,I suppose we are lucky to have Myeloma UK because I get a lot of information from the news letters that they post also follow them on face book,so it saves me often looking for info,and we…[Read more]

hello Maureen
so glad to see you have managed a break it must have done you both good
regards jo

HI GRAHAM
you are really unlucky I have CRF caused by MM but both the clinics I go to give me full information every time I thought this would be standard
Regards Jo

Hi myelomaminx (love the name ha ha)

So sorry you never got any let alone enough, I am sure some one on thus site was the same as you and it all worked out well.

Good luck with ur and hope next time is better

Tom onwards and upwards xx

Hi Maureen

Glad to See you managed not just a break,but a posh one lol.

Glad to see you posting again Eva,you must feel down not being in your own home,B&B plus hospital,is no joke,I suppose it’s the only way forward,will you go straight into another SCT from treatment!!!!,which hospital are you at in London!!!

I hope you both Ian and Eva find…[Read more]

Hi

My husband has been on Zometa for 3 years plus Ad Cal ,I can only tell you,he has no side effects at all,he did need a tooth removed,so had it removed. In hospital,as dentist prefer hospitals to deal with it,no problems at all,there are a small percentage of people who have problems,but you have to look at the bigger picture,Myeloma does…[Read more]

Hi Dusk

Can I ask you a nice straight forward question????

Have you started treatment yet??????

You have one thing wrong about me dusk,I am a desperate vulnerable woman,who feels like screaming at the moon,often drive along the road with tears streaming down,for things I’ve loved and lost,just like most people feel on here,that’s how we have…[Read more]

Hi Graham

I would be lost without having my husbands blood results,they give so much information to his general condition,and show improvements or any condition that needs to be watched.!!!
I also have results from any scans that have been done,I think personally it saves the consultants time,and you can ask questions on things you do not…[Read more]

Hi Gill

Lovely to hear from you,I know you are coping!!,you made me laugh about your adventures to France,even if we do not like it life goes on,people seem to think it should get better after a short time,the first year is a challenge,the second year reality sets in,but saying that you seem to be facing it all head on,my admiration of how well…[Read more]

Hi Dick

Try to think of it as major blood surgery!!! Give yourself three months,then think the next three months will see you responding well,3 weeks!!! What the hell do you expect!!! Lol.

Seriously some people take a long time others don,t.i think guts and bowels are the last to improve,you have age on your side,so don,t despair make the most…[Read more]

Hi Dusk

I knew you would come in on this one. Lol

May I suggest you go into the Myeloma Beacon and read opinions a man called Arnie who is a MD with Myeloma,who is nearing the end of his roller coaster ride,well worth a read,he puts the emphasis on what treatment that is available,plus gives his opinion on trials,it’s about drugs and not him,

I…[Read more]

Hi David

Slims platelets never reached dizzy heights after his SCT,then the myeloma came back after 6 months ,so he went on CDR,,at the time no choice part of NICE controls with drugs,I was against this at the time because Revilimid is a cousin of thalidomide and during his 6 cycles on thalidomide his Myeloma increased to 80 percent in bones plus…[Read more]