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]

Hi Susie.

I had trouble with my mouth it’s due to the chemo. The chemo works by killing fast growing cells and your mouth unfortunately is full of them. Good oral hygiene is essential. I used Nystatin and Difflan mouthwash though I was told to stop the mouthwash by my dental consultant due to it’s alcohol content and use warm water and salt…[Read more]

Hi Susie.

I had trouble with my mouth it’s due to the chemo. The chemo works by killing fast growing cells and your mouth unfortunately is full of them. Good oral hygiene is essential. I used Nystatin and Difflan mouthwash though I was told to stop the mouthwash by my dental consultant due to it’s alcohol content and use warm water and salt…[Read more]

Evening Helen.

It’s my Dex night and my forum catch up.

Glad to read you’ve had a good response to Pomalidomide. Hopefully the Cancer Drug Fund won’t remove it from its list of available drugs.

You still have some control in your course of treatment Helen which is good. I don’t know what I’d do even though I have thought a lot about what I’d…[Read more]

It’s happened again my posts been cut of in it’s prime!

Now then how did it go.

Do you have stem cells stored for a second SCT? I think if it was me I’d delay the SCT whilst I was doing and feeling ok especially in light of the experience you had with the first SCT though I guess no two SCTs are the same. Quality of life for me is the most…[Read more]

Hi Helen.

I just reread my last post and it seems to of been cut short.

I’m tired a lot of the time but I put that down to my sleepless nights due to the Dex effects. It’s a worry I have wondering how long my bone marrow can last with all the battering it’s taken with over three years of drugs. Though Pomalidomide seems to be a bit more gentle…[Read more]

Hi Vicki & Colin.

it seems a lot of people are having second SCT’s or getting ready for a second SCT at the moment. I know what you mean about it being a dilemma now with talk of a possible SCT for me I’m not even sure I would go for it. My reason being that it takes so long to get over a SCT that I wouldn’t want to spoil the quality of life I…[Read more]

Hi James.

Your right I got it wrong apparently different patients show their myeloma in different readings. Some can only have their myeloma measured by bone marrow biopsy. I do know they don’t take any reading in isolation. Some have high paraprotein levels and aren’t treated immediately others have low paraprotein levels and get treated…[Read more]

Hi James.

Your right I got it wrong apparently different patients show their in different readings. Some can only have their myeloma measured by bone marrow biopsy. I do know they don’t take any reading in isolation. Some have high paraprotein levels and aren’t treated immediately others have low paraprotein levels and get treated straight away…[Read more]

Hi Susie.

No advice really. I took my cyclophosomide on Sundays so I could be off colour Mon, Tue, Wed, and sometimes Thursday so I could enjoy the weekend when Steph was off. That only happened weeks 2 & 3 of each cycle due to the Dex effect week one. I took my Cyclo with lots of water but even though I was on Cyclophosamide over two years I…[Read more]

Hi Jean.

They seem very strict criteria for Mikes PPs. Though I think I achieved it and I’ve just started my 12th cycle I guess it depends on the criteria by which you qualify for Pomalidomide. Is Mike on a trial?

My wife still works and is sneezing all the time but remarkably I’m doing ok.

I hope everything goes well.

Every day is a…[Read more]

Hi Helen.

It’s my steroid night as you may of found it’s taken weekly every week with Pomalidomide or at least I am. Pomalidomide seems to have a good response track record so hopefully it’ll get you to SCT. You didn’t have a great time after your last SCT but I guess time is what we want. It was two years ago the Prof. was looking at an Allo for…[Read more]

Hi Jeff.

I was on anticoagulants, I still am, before my kyphoplasty and my consultant and surgeon had differing views on it. In the end I think my consultant “won” because I was only off my tinzaparin for 24 hours pre-op. Though they did check my blood for clotting before going ahead.

Hi Vicki and Colin.

I think it’s just a remote possibility…[Read more]

Hi James.

I was diagnosed at the beginning of October 2011 and Revilimid got my readings the lowest they had been till then though not spectacularly low. We measure paraproteins here but I think it’s the same as your immunoglobulina Gg reading. Mine was 11.7 I don’t get a reading for much else I just ask my specialist nurse if my are ok and if…[Read more]

Hi Susie.

It’s Tuesday night time for my usual Dex fueled ramblings.

I thought about you today as I got cramp in my feet and legs. It wasn’t too bad and it was expected as I’d taken my last Pomalidomide tablet Monday and it’s a regular end of cycle occurrence as it was when I was on Revilimid. I also got cramp in my fingers, how that happens…[Read more]

Hiive Helen.

No need to apologise life does continue outside the myeloma bubble sometimes it’s good other times it’s not so good and the forum takes a backseat for a time. I’m sorry to hear about your dad. Never an easy time. Steph’s dad died last month so we have some idea of what you’ve been through. I got officially finished from work in June…[Read more]