Hi Peter,

Sorry to hear that you had to stop taking Pomalidomide. As I said previously it’s a bit of a marmite drug. Hopefully you’ll get along better with the new drug. Is it Farydak you’ll be trying next?

I’m doing ok at the moment thanks. Got a stinking cold at the moment but otherwise ok. We had four nights in the Lakes last week it wore me…[Read more]

Hi Georgie.

Sorry for the long delay in responding to your post as I’m over 50 I don’t regularly check this part of the forum.

As regards your original post regarding running it is generally advised to avoid high impact sports as myeloma weakens and damages bones. I myself was a runner and was training for the London marathon when my first…[Read more]

Hi Peter.

Glad your medic was on the ball and switched you to Pomalidomide before it was deemed to expensive for us meer mortals that rely on the NHS. I hope 2016 sees you and Pomalidomide building a good relationship.

Every day is a gift.

Andy.

Hi Vicki.

I really hope things are starting to get better for you. I can’t imagine how hard it’s been for you. My heart breaks a little more every time I read of an online friend passing. I applaud you for your fundraising though my personal thought is maybe you should take a break from the myeloma world and concentrate on a bit of “me” time.

I…[Read more]

A very merry Xmas to you both.

You really have done v well. An sct is truly major, don’t underestimate the strength this will have taken. I hope that your day 100 bone marrows are clear, and I hope you both have as good a remission as myself, and I hope you both beat my 36 months.

Take things easy, and have a great 2016.

Regards

Mike

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]

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]

You 2 guys doing real well.
Sounds like all the usual side effects and ups and downs of the poison and saving life!

I really like the sound (not the look probably) of man size nappies, I was never offered these but could have done with them on a couple of occasions.

How many days post sct now???, I was out at +19, but did have a bit of an infect…[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]

Hi Tina.

Sorry to read that your PP’s are rising. Hopefully this rise will be very slow and that the Revilimid can hopefully beat them back into submission. You won’t have to have full on treatment till the myeloma starts to effect your health. That could be a long way off.

I’m sure your medics will be working on a plan for you.

Good luck I’ll…[Read more]

Hi Dino and Louishenry,

I think you two are going to be in a race to be the first out of hospital !
You’re both now on “day 1” ie first day after stem cells going back in.
I was hugging the toilet very hard at this point, I always react to high dose chemicals, I remember that high dose Pernod was particularly bad.
Dino I think your doing really…[Read more]