The Future Plans

I had a long meeting and day at the hospital yesterday.

I was there for 9:30am and left at 4pm. In between I had my bloods taken, two cross matches, my Pentamidine a bag of platelets and a meeting with the Doctor.

I’m back again for another long day today and may even blog from the the Hospital today as well as I’m having two units of blood at Liverpool.

As you  have guessed my blood counts have dropped over the Christmas period. I’d started to come out in bruises, which is always a sign of low platelets for me. My platelets yesterday were 18 and my HB was 7.9. I normally start to feel tired when it get below the 8 and so I’m being topped up again before the New Year period.

After this I’m back in on Tuesday and then again next Friday.

I’m going to have another bone marrow biopsy done on the Friday as they want to find out a bit more about what’s going on. Is it the Myeloma that’s making my counts drop or the transplant or maybe it’s just the drugs. The biopsy should give them that information. You will recall though if you’ve been reading the blog from the start, that these biopsies in the past have been very (and I mean VERY) painful for me. This will be the first time that I have had one done in Liverpool and it’s going to be done by the the Transplant coordinator herself, so the challenge is on to see how painful it will be, if at all, here’s hoping it wont be.

The doctors have lowered my Cyclosporine to only 25mg now as he want’s me to come off them suppressants quite soon. The Lenalidomide treatment is still on the plans and just going to see what the marrow is up to before progressing with that.

I wanted to know about future plans as well – e.g. if it does work what are the plans long term, when I say long term I mean in six to twelve months if I survive that long or even longer hopefully. There were  few options including what is called a DLI, which is a mini transplant using the Siblings (Nigels) stem cells again that we may even consider as a sort of top up. That may even ben in just a matter of months. Lenalidomide is still the best option on the cards that we would want to try first though to see how I respond.

I also asked about the trials and the new drugs that are being tested in America and how long they would take before they would get over here. Being realistic it would take a couple of year, but it could be sooner or much longer. No guarantees there. Pomalidomide and Carfilzomib are the two that look promising at the moment and at least I know how long I need to hang on in here until they start to come through the main stream. There would even be a possibility of getting onto the trails here or getting hold of it or similar in some kind of compassionate (trail) format, again depending on how things go and my situation.

I left the hospital yesterday, feeling quite optimistic, knowing at least what my goals are over the next few months etc. I always like to know what the next step is so I can deal with and know what to expect, good or bad.

I should be in the Hospital today for at least 6 hours, so I will catch up on some reading and blog a little. I may even get a bit of sleep as I am having the blood on the transplant unit on in one of the rooms they currently aren’t using. Charito is coming with, but she will probably nod off as well in the chair. We are taking our gadgets, netbook, tablet and kindle, so I will be able to keep busy.

blog to you all soon.

Nearly another year gone.