Hi Maureen

Last time we were at consultants she got an X-ray of his chest. No,point in going to our doctor he is dead slow and stop. We are seeing consultant today week so hope to get everything sorted. Thanks for your reply

Hope Ian is doing well

Jean x

Hi Laura,

Welcome to the forum, I am glad to read that you are recovering well from your SCT. My husband Phil was diagnosed with MM at the age of 43 in May 2012. His first line of treatment was on the PADIMAC trial which was to see if the use of Velcade could delay the need for a SCT. In Phil’s case his response to Velcade was not good enough…[Read more]

Hi JoJo and Jane

Thanks for your replys. Frank was given acoclovir. The pain relief he was prescribed was not helping him. Our pharmacist advised him the take ibrofrem our son brought it to him tonight and it’s the first time he’s had some relief. Hr told me that this morning the pain was horrendous he thought his body was on fire. He seems to be…[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]

Hi Maureen

I too am delighted that you and Ian got away. Especially after such a bad year. Isn’t it good to feel ” normal ” again!

Here’s to your futures!!

Love

Mavis x

Hi.

Just to confirm what Eve has said about Zometa. I have been on it for well over two years and was on tablet Bisophonates for a year before that. Like Slim I have no symptoms except a flue like fever the first time I had an infusion. They only used to give them for two years but have decided they are worth while continuing with as they do…[Read more]

Hi Jane

How good to hear your story I am sure it will encourage those facing SCTs especially those deciding whether to go for a second.

My story is encouraging too although nor so dramatic. I was first diagnosed three and a half years ago and am currently in full remission following CDT.

MM isn’t a good disease to have, but there is hope for…[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 sorry to hear that your husband has MM. My husband was diagnosed in 2006 with smouldering MM. He had SCT In March last year. In the 8 years that he’s smouldered he’s had Zometa on and off. He started it again after SCT but had to stop,as his potassium was low. He has never had a any side affects ( potassium low because of SCT). He has sailed…[Read more]