Post Xmas Update – Happy New Year

Sorry it’s been a while – things have been pretty hectic. We had a lovely Xmas and also celebrated my 60th at the end of November with an afternoon party/drop in which was lovely. My next target is 65!!

Progress on Velcade has been mixed. My levels were coming down nicely and had reached something like 220s on my light chains from over 1000. But round four results showed a slightly higher result. There is often a plateau reached and I am on a lower dose than ideal because of the peripheral neuropathy. I am in my 6th round atm and will get my fifth round results in about 10 days so we shall see.

We are comtemplating a mini allo (donor) transplant. This means that not all my immune system is completely blitzed as in a full transplant. The nearest centre is Leicester, about an hour away. They have an excellent reputation, but the logistics would be harder than using our local hospital and ALL treatment for at least a year would be in Leicester as they don’t trust a normal hospital to pick up eg graft problems straight away or to treat the inevitable infections properly. This gives them a good risk of death rate for the procedure of around 10% which can be much higher elsewhere and is not too much higher than the risks with auto transplants (own cells).

We spoke to the lovely but very forthright main consultant at length and she made all the issues plain, especially the graft versus host issues that can be very severe and turn into chronic issues etc. But she is obliged to paint worst case scenarios. The thought is pretty daunting, but I am young enough to do this and I am quite resistant to the drug regimes, so now is the time. I could hold on and try the new drugs but this may give me some remission at a time when I am strong enough to do it.

We have made no decision yet – I have had blood tests sent off and I think they have started the process of looking for a donor as my brothers are not matches. We are meeting again in early Jan to see where we are. If I decide to go ahead the actual transplant will not take place until at least April.

So looking at my current treatment I really need to get my levels down further. I had an entertaining bone marrow biopsy just before Xmas so we could assess whether I needed more rounds of Velcade. As last time, it was impossible to get fluid out. The nursing assistant was on her first day on haem and had to go out as she felt faint, so I just braced against the wall instead of her. We tried two entry points and eventually got a nice core, but I managed to bend the needle!! I am quite lucky as although it is a bit painful I don’t find it too bad and don’t need gas and air which they now offer – makes me very queasy anyway. But my hip was pretty tender for a day or so.

I am also getting my tooth extracted soon despite the ONJ (jaw disease) risks, but it’s being done at the hospital with antibiotics before and after. I have been off Zometa (bone hardening meds which can contribute to ONJ) for 6 months so am crossing my fingers I will be OK.

So all go. It is a bit unsettling and Bob and I are having to think of the practicalities as he works full time and will have to take leave somehow if I go ahead, which has financial implications etc. He will be ferrying me too and fro for a year, although I could use one of the voluntary services to supplement that.

The consultant said it will be the hardest work we have ever done. But I think we can go for it. I will update on the situation after we have next spoken to her and maybe will go through some of the ins and outs for the benefit of other myeloma patients. We recorded what she said last time, so I can list some of the issues.

In the meantime, here’s hoping all readers whether myeloma patients, carers or friends, have had a lovely Xmas and that 2014 is a a positive year for you all.