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

I think too many take the NHS for granted and have too high a level of expectation from it. It was always meant to be health care free at source but so many forget it has to be paid for somehow. As some on this site have bemoaned NICE and the restriction on available drugs, your post Kim should help remind them that things elsewhere are not always…[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]

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]

What dosage of Dex are you having?

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,

I believe MRI scanners are hideously expensive to buy and run, MRT are even more. With hospitals in Germany being commercial businesses they tend to buy them because they know they will make a return, although not every hospital has them. I believe it would help you and Iain understand the extent of his MM, I had an MRT in November…[Read more]

Just a point about MRI /MRT scans. We attended the 10th anniversary do of the local self help group and they invited some of the top medics to attend and give lectures. One of the things that came out is that an MRT is more accurate at determining the level and positions of MM in the body. My German is a bit poor but the gist was that with MRT…[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 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 Ang,

Really good news then. The high temp I think everyone gets but certainly combined with Flu would have been scary for anyone. Let’s hope everything continues to improve. I’m afraid I’ve had a few days of Diarrhea and sickness which the MM nurses put down to either an infection or the stomach being damaged by the Mephalan. The medics don’t…[Read more]

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]

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]