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 all,

I have not been on for a while, been busy feeling a bit sorry for myself, as my November check up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by this…[Read more]

Hi all,

I have not been on for a while, been busy feeling a bit sorry for myself, as my November checked up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by…[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

Hi Jean.

Infections can effect the results of blood tests and to only give Pomalidomide two cycles and expect a fifty percent reduction seems a bit harsh. Having said that I only had two cycles of Velcade for similar reasons! When I was on Revilimid my PPs didn’t show a reduction for four cycles till they added Cyclophosamide to the mix. I ended…[Read more]

Hi Valerie.

There’s not much I can add to what Richard has said. Everything you describe is pretty much typical of a myeloma journey. Dexamethasone is a demon but essential drug. I know as I’ve been on it for over three years now and tonight is my DEX sleepless night. As to how long will his agony last I’m afraid no one can answer that some get…[Read more]

Hi Suzi.

As Ellen says non-secretory myeloma is rare. I’ve been on this forum since 2011, I think, and can only recall one other case.

My knowledge is even though paraprotein monitoring is important the whole blood analysis is important and a good indication of myeloma activities.

Some can live with high PPs and smoulder whilst others have low…[Read more]

Hi Susie.

Since your on Revilimid it could be a side effect of the drug. I used to get intestinal cramps quite regularly at the end of cycles when I was on Revlimid. I also had cramps in my legs and hands.

I wouldn’t advise using a probiotic though it does really depends on your neutrophil level. When I was diagnosed the advice I was given was…[Read more]

Hi Linda

I was diagnosed in October 2011. Due to my myeloma not responding to the normal early treatments I’ve never got to SCT. I’ve been through nearly all of the drugs in the myeloma medicine cabinet and I’m currently on Pomalidomide (Imnovid) . Only Revilimid (Lenalidomide) and Pomalidomide have had any significant effect on my myeloma.

The…[Read more]