Hi Katy

I’m aged 58 years and currently going through treatment again for my relapsed myeloma. However my first CDT treatment followed by stem cell gave me five years of drug free remission. I think one of the hardest parts of accepting the treatment for your mom is when she is feeling so feel so well. But as others have said above, the…[Read more]

Hi Sandra

Sorry to hear your light chains are rising again. What sort of level were they last time and what level are they now? Presumably you provided a urine test at your last consultant’s visit? Could you phone up after Xmas and ask for your results before you decide about your visit abroad? When I was diagnosed with myeloma in 2010, my…[Read more]

Hiya Dawn.

Great news that your feeling well I would guess that’s a good indication that things are going well. I hope you get a great late Christmas present and go into the New Year and start a long drug free period.

Every day is a gift.

Andy xxx

Hi Helen,

My lungs are now functioning well. When I went for my Previgen? infusion last week and had my obs done my O2 reading was 99% so that’s good. Physically I’m coming along a bit slower though everyone seems surprised by how quickly I’ve progressed. I’m still doing my exercises and a few more as I’m aiming to build up my fitness as much as…[Read more]

Hi Helen,

My lungs are now functioning well. When I went for my Previgen? infusion last week and had my obs done my O2 reading was 99% so that’s good. Physically I’m coming along a bit slower though everyone seems surprised by how quickly I’ve progressed. I’m still doing my exercises and a few more as I’m aiming to build up my fitness as much as…[Read more]

Hi Leslie,

Welcome to the forum. Taking each day at a time is definitely the way to go. Live in the present because you can’t change yesterday and worrying about tomorrow spoils today. Saw that quote somewhere and it’s very true.

I was like you at diagnosis at last I knew what was going on. It was a relief to know and devastating at the same…[Read more]

Hiya.

Six inches is a lot of height to lose. I remember getting my height measured before one of the many scans I’ve had and I was five inches off my pre myeloma height though it was later in the day and I do get shorter as the day goes on.

Has your partners kidneys recovered? I had an ultra sound on my bladder last week and they also did my…[Read more]

Welcome to the forum Ed.

I’ve been a member since I was diagnosed in October 2011 and found the forum very helpful. I learnt a lot from the more experienced myeloma patients and carers and received lots of support.

No two journeys are the same with this bloody awful disease but if you have any questions or advice to give fire away. Even if you…[Read more]

Hi Helen

You are awake late this evening? It’s good to hear from you, but I’m so sorry to hear your light chains are increasing which must be so concerning for you. What are your current numbers? Can your current medication be increased or modified? I see panobinostat has just been approved by NICE to be used with velcade and dex for patients…[Read more]

Hi Helen

You are awake late this evening? It’s good to hear from you, but I’m so sorry to hear your light chains are increasing which must be so concerning for you. What are your current numbers? Can your current medication be increased or modified? I see panobinostat has just been approved by NICE to be used with velcade and dex for patients…[Read more]

Hi All, I am now 107 days post SCT. You are so right Bernard, it was an ordeal but is so worth it. The care I have received has been first class from everyone I came into contact with as an in patient and an out patient.
I was told this week “no free light chains, complete remission” so I am hopeful of a decent period MM free.

I guess the effects…[Read more]

I am over 107 post SCT, I continue to use hand gel all the time. Carry it in my handbag and apply after Supermarket etc. Nurses said to take temperature at least twice a day. The dietary info I was given was quite comprehensive, no mayonnaise, runny eggs, reheated food, shellfish etc. A bit like the diet for pregnancy I thought.
Other advice was…[Read more]

Evening/Morning ( it’s 00:40) Richard,

It sounds like you’re doing okay I think small improvements are better than a big changes because rightly or wrongly I think if your condition improves rapidly it could go the other way rapidly too. Working and exercising will do you a world of good. The fitter you are the better you overcome the hurdles the…[Read more]

Hi Helen,

Sounds like you had a great time in Austria and it sounds like my type of place. We missed our Belgium Christmas markets trip this year so that’s three breaks away my pneumonia put paid too!

I try to do my Christmas shopping online with the aid of alcohol I hate shopping. Just got my credit card statement it’s eye watering. I blame the…[Read more]

Hi Helen
No sorry I don,t have patten,but you could treat the bulge as a finger,get the patten off a glove pattern .

I am out on my lonesome for Christmas,I don,t want my girls to start thinking who,s going to have mum,they have threatened me with forcing me to have a micro chip,so they can keep track of me..
Laying ghost to rest!!! Cannot go to…[Read more]

Morning Andy,

Things are ticking along here quite nicely. My IgG is far lower than post SCT so the medics are looking at reducing Rev to 15mg and Dexy to 20mg. I’m waiting on the results of the latest blood test. I still have to provide a urine sample and did have a MRT last month. The scan showed no increase to the bone lesions so my consultant…[Read more]

Hi Scott.

Vision problems are a common side effect of some treatments and Dexamethasone can cause cataracts. Though seeing your not on it may not be myeloma related.

Every day is a gift.

Andy.

Hi Georgie.

Just a little titbit Dex can dehydrate you which will cause headaches. Is your father keeping up his fluid intake.

As to not responding to his first treatment that is not uncommon. Everyone has a different journey with myeloma and reaction to the drugs be it side effects or responding treatment wise can be very different.

I myself…[Read more]

Hi everyone.

It’s another no sleep annoying steriod night! Though it is the start of cycle 25.

Hi Annlynn I’m being treated at Stockton North Tees Hospital as my main hospital I’ve been around various others as treatment has demanded.

Hi Richard how are you getting along. I don’t get on here much and may of missed your posts – sorry.

As to my…[Read more]