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

Dear Maureen
Good to see you and Ian have managed to get away at last, hope this is the first of many trips.

And Eva how good to see you are responding to treatment, I was wondering how you were getting on. As Eve says b&b can’t be much fun though. Will you have second SCT in London?
Love Helen

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]

Well done on getting away, Maureen. It sounds lovely. It is so important to have experiences that take you away from the daily routine and give you good things to think about. Sounds like good timing too.

Enjoy the weekend and I hope Monday’s appointment is positive.

Sarah

Hello. So sorry to hear your news. Your story is so similar to ours. My husband was diagnosed after spinal cord compression and a plasmacytoma tumour. He has a lot of damage to his spine and the full myeloma diagnosis was given in January. He just started his 3rd cycle of VCP today. He is 44.

One of the really big changes in our lives is that it…[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]

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]

Hi All
I’ve just been quoted £92 for single trip insurance to Europe with World First, I declared my warts and all! Husband was £38 with mild asthma I was £54 with MM! This is with stable disease following relapse and chemo within last 6 months, peripheral neuropathy and recent shingles. I also carry a £200 excess should I need treatment. I thi…[Read more]

Haha, stop telling people about my warts David? 😉 And actually I’ve just remembered you may have an SA connection, hence the vasbyte?

A family tree sounds a great idea! I meanwhile am meant to be fast asleep so will keep this very short by my usual long standards – thanks for clarifying that it is still worth doing as long as I take those two…[Read more]

Thanks so much David for taking the time to reply.

It’s very helpful to know about the first point, contacting your doctor, and that if anything (even irrelevant) is not declared the whole thing may be void. I had not fully understood – but had worried about that. I remember reading about someone whose life insurance policy would not pay out as…[Read more]

Hi Vicki and Colin and everyone,

It’s a real pain, isn’t it? Here’s my experience with AllClear, for what it’s worth: I got an annual multi-trip Europe policy with them last May. It cost me something like £250-350 but I can’t remember exactly – didn’t seem too horrific for a full year, bearing in mind the myeloma. At this point I was in…[Read more]

Hi Andy
I am back to work! 4 weeks now, gradual return and I’m tired but ok really. The shingles rash site is uncomfortable but getting less.
Love Helen