Hi Ali,

My husband had a plasmacytoma last year on his C6/C7 vertebrae. It caused the vertebrae to collapse and compressed his spinal cord. Surgery was the first step (twice – front and back), to stabilise the spine. The surgeon said he “scooped out lots of gunk” but at the time we didn’t know what it was. He was even referred to a tropical…[Read more]

Hi Poppy,

I’m so sorry to hear how unwell your gran is. It must be a very worrying and stressful time for you. Do you have a contact number for the nurses who are coming out to your gran? It might be worth trying to talk to one of them to see what they think about you travelling home in 8 days. They won’t be able to give you any exact information…[Read more]

I’m really sorry to hear about your loss. I hope you have good friends and family you can talk to. It’s very tough losing a parent, however old you are.

Do try to find someone to talk to if that would help you.

Sarah

So sorry to hear what a tough time you are both having. I don’t have experience of SCT yet. Hopefully my husband will get to that stage later this year. However, I do have experiemce of him being confused and disorientated (and much more besides). In his case it was psychosis caused by steroids – namely dexamethasone, which is a recognised…[Read more]

That is good news!

I hope you both can catch up on some rest now. You must be exhausted as well as Michael, Jean.

Sarah

So far so good. M had his chemo on Friday and took 20mg of dex on Fri and Sat. He slept really well on both nights, has had a few hiccups, which he controls with breathing exercises, and has seemed quite “normal” (he’s a bit quirky at the best of times :-)).

I know the side-effects of some drugs build up over time, but is this the case with…[Read more]

Thanks all.

We’re going in tomorrow morning for the first lot of dex to go with the start of the 5th cycle of Velcade and Cyclophosphamide. I will be constantly checking for side-effects I’m sure, although I have to go to a conference all day Saturday, which will cause me to worry in other ways. We will both try to keep calm about it as anxiety…[Read more]

Thanks Maureen,

It is so encouraging to hear of Ian’s progress. I’m really pleased to hear he is coping with the chemo. M has been having physio. He was referred after his second spinal op in order to strengthen his neck muscles enough to stop him needing to wear the neck brace. His neck is doing really well and he gave up wearing the brace just…[Read more]

Thank you Eve, Maureen, Helen and Keith,

Your responses helped me to have a preparatory discussion with my husband before his appointment today, which , I think, helped him to make his decisions today. Unfortunately the PP has not shifted after 3 cycles. The light chains are down a bit but not as much as the consultant expected/hoped. We had a…[Read more]

Thanks for your reply, Eve,

The dex waa given last year before M was diagnosed. He had spinal cord compression and it was the first thing the spinal surgeons started him on before his first major surgery. The plasmacytoma that had caused the compression and destruction of a vertebra in his neck wasn’t diagnosed till he was in hospital with the…[Read more]

Wishing you all the best for your SCT, John.

I hope all goes as well as possible and that you can look beyond it to a time of recovery when there are nice long days and better weather.

Best wishes,

Sarah

Hi Dick,

My husband has been awarded payments under the PIP. We think he had a relatively easy time of it compared with other stories we have heard. One thing I would strongly recommend is talking it through, or even maybe completing it, with a Macmillan benefits advisor – you can speak to them on the phone, it doesn’t have to be in person. If…[Read more]

Bit of an “oops” for us too this weekend. M takes his temperature every evening and records it in his TEAMM trial book. Yesterday evening it was 37.6. An hour later it was 37.7. Hospital instructions are to phone if it is over 37.5, so we did, and M was booked in for the night.  They’ve given him intravenous antibiotics and antivirals and he’s in…[Read more]

Hello Frances,

That sounds horrible. I would definitely get it checked out thoroughly if you haven’t already. My husband had dreadful muscle spasms over Christmas and further investigation revealed multiple spinal lesions and a fracture. Getting out of bed was really difficult as every movement brought on more spasms. If you have had scans etc…[Read more]

Hi Terry,

I  don’t know if this helps, but my husband is having prednisolone with Velcade and cyclophosphamide as he had severe psychotic side-effects when he was on Dex last year (for spinal cord compression, before myeloma diagnosis). He is on his 3 rd cycle now and there have been no serious side-effects. I don’t know whether another steroid…[Read more]

Well done on getting away, Maureen. It sounds lovely. It is so important to have experiences that take you away from the daily routine and give you good things to think about. Sounds like good timing too.

Enjoy the weekend and I hope Monday’s appointment is positive.

Sarah

Hello. So sorry to hear your news. Your story is so similar to ours. My husband was diagnosed after spinal cord compression and a plasmacytoma tumour. He has a lot of damage to his spine and the full myeloma diagnosis was given in January. He just started his 3rd cycle of VCP today. He is 44.

One of the really big changes in our lives is that it…[Read more]