Hi Susie.

At the moment there’s nothing definite about maintenance therapy they are still running trials to see if there’s an advantage and the optimum doses. I guess it comes down to the old chestnut about quality of life. If you go along with the maintenance route and you find it impacting upon your well being you can always stop it.

I have no…[Read more]

Hi Ron.

If I have ANY problems I go straight to the haematology day unit or ring them for advice. I wouldn’t go to my GP or A&E. I’ve done this for over three years now and it’s what I was told to do by my consultant. We can’t afford to hang around waiting for treatment it can be fatal.

Every day is a gift.

Andy.

Hi Vicki.

You’re right. Allo is donor cells and auto own cells.

How’s Colin getting on with the Bendamustine?

Get some trips planned.

Every day is a gift.

Andy xx

Hi Helen.

I find it hard to fill my day. Somethings I can only do for short periods of time due to my back problems. I get bored sometimes though at the end of the day I wonder how it passed so fast with me achieving so little.

When the prof. suggested the Allo route it seemed like it was the final roll of the dice to us. I know you had a bad…[Read more]

Hi Helen.

Tuesday is my DEX night too though sometimes I do get to sleep.

I’ve found Pomalidomide to be kind to me though I guess everything is relative so I’ll quantify it a bit. I’ve found Pomalidomide to be a lot kinder to me than Revlamid, Cyclophosomide and Dex.

I have just started cycle fifteen of Pomalidomide, Gideon Osborne must love…[Read more]

Hi Helen.

Flights to Greece are booked. Middle of May all being well.

I’m off to read your post now so I will keep my questions and observations for there.

Every day is a gift.

Andy xx

Hi All.

Guess I got a bit over confident lol. Last week spent 3 nights in hospital with a high temperature due to an infection somewhere. I had a cold and a cough luckily it didn’t go onto my chest. Anyway I’m home again feeling ok still got a few more days on oral antibiotics. Guess I should stay away from ill people or people in general! Nah…[Read more]

Hi Susie.

Don’t get hung up on the the numbers too much it can spoil what you have.

PPs can still drop after treatment stops. PPs are a measure of myeloma activity but must be taken with the rest of your blood results. You will be still monitored as you need blood tests prior to your Zometa infusions.

SCTs are offered to patients who are fit…[Read more]

Hi Vicki and Colin.

Sorry I’m a bit slow with my response but I had a little holiday curtesy of the NHS! so had no wifi and my phone reception was totally rubbish.

I have been told that Bendamustine could be my next drug of choice when Pomalidomide starts to fail. Although it’s an old drug, I was told it’s derived from mustard gas!, it’s new to…[Read more]

Hi Noel.

I had the same dilemma in October 2012. I was told at the time an Allo was my only way forward, only chance really because none of the treatments worked well enough for an autosct and my marrow was that hammered by the drugs they wouldn’t produce enough stem cells. I was told all the stats 20% mortality rate etc etc but said I’d go for…[Read more]

Hi Graeme.

I second Maureens suggestion. We’ve been using nowicantravel.com for the last couple of years and found them very good. We only travel to Greece for a week at a time and pay less than £70 for both of per trip. We always deal wth them over the phone. I’m on treatment all the time and have been since diagnosis in oct 2011 and I’ve never…[Read more]

Hi.

Welcome to the forum.

I’ve not come across Lupus or Cryoglobulins on here before. So I did a little research and found out about Lupus here – http://www.lupusuk.org.uk and saw some of the same drugs are used in it’s treatment as are used in treating myeloma. When I read up on Cryoglobulins I noticed Multiple Myeloma was mentioned. Like I…[Read more]

Hi.

Welcome to the forum. There’s a lot that will be taken into account by the medics as to how they manage your dads treatment if they do treat him at all. They have a set criteria they work to and if your dad doesn’t fall into this category they will just monitor him. However if there is a need for treatment then your dads current fitness and…[Read more]

Hi all – thanks for your good wishes..

Linda – lucky, myeloma and me don’t seem to happen together in the same sentence let’s hope that changes.

Susie – it’s taken a while to get where I am at the moment. I only hope that turn doesn’t turn back on itself too soon.

Finn – I like your theory. If I do get to SCT I will try and prove it.

Maureen -…[Read more]

Hi Vicki.

I have been referred to Prof. Jackson at Newcastle Freeman hospital to see if an Auto SCT is now an option. I’m not counting on it but will wait and see what the Prof. says. A SCT could buy me more time for new treatments to come along since I’m nearly at the end of the drugs list. I’m not sure if my bone marrow has recovered enough to…[Read more]

Hi Vicki.

Velcade never worked for me. I was on PAD and it never worked but there again nothing worked for me till I was put on Revilimid and that only seemed to work once Cyclophosomide was added. I had 22 cycles all together before I was switched to Pomalidomide which I’ve just started my 14th cycle of. My PPs were 6.4 at my last blood…[Read more]

Hi Vicki.

Velcade never worked for me. I was on PAD and it never worked but there again nothing worked for me till I was put on Revilimid and that only seemed to work once Cyclophosomide was added. I had 22 cycles all together before I was switched to Pomalidomide which I’ve just started my 14th cycle of. My PPs were 6.4 at my last blood…[Read more]

Hi Susie.

It’s important you let your dentist know your on Zometa the next time you visit. Tooth extractions would only be done as a last resort and hopefully after a minimum of three month break from Zometa. The problem occurs due to exposed bone and has to be avoided as it can lead to osteonacrosis of the jaw. Which is another little problem I…[Read more]

Hi Richard.

Just caught up with your post and agree with everything you say.

Every day is a gift.

Andy x