Tuesday 20 August 2013

And then there was Plan C

So I met up with the Professor who had my latest bone marrow results

Last time my blasts had gone up to 7% - which is not good

So the idea was to give me Azacitidine three times and get the blast to below 5%
Plan A - if less than 5% - they straight for a transplant
Plan B - if greater than 5% then have heavy duty pre-conditioning chemo, a rest for two weeks for body to recover and then have transplant

So all very clear. Well perhaps not

The problem was that my blasts had only come down to 6% - which is better but not good enough
And my cellularity is only 15%, which means that it would be quite risky to go for plan B

So Plan C it is!!



He has therefore specified the following firm process After this week's full Azacitidine is finished on Wednesday have three more full doses starting 9th Sept, 7th Oct and finally 4th Nov 

Then a bone marrow test on 26th or 27th Nov

He expects the blasts to be on or below 5% and cellularity much the same as it is now
(but cellularity will not now be critical - see below)

Have all the tests to ensure heart, liver etc are OK

Then 4 to 6 weeks after the bone marrow test, start a transplant with 4 days of special chemo (rather than 2 days which folk normally have on Plan A) immediately prior to giving me the stem cells.

Ie transplant late Dec or early Jan

These bodies we have are very complex and it requires real judgement a lot of the time.

Luckily the message got to Plymouth just before they ordered the stem cells.

The good news is that the extra time will enable me to get fitter, get over the bruising and sprained ankle from the mad cow, do dental work etc

Wednesday 14 August 2013

Stem cells ordered

I am on my fourth day of full strength azacitidine tomorrow. Its going well but it does make you tired and all the other symptoms mentioned in earlier Blogs - but you get used to it and just carry on.

The Transplant Coordinator  came and had a chat with me this afternoon when I was waiting for my jabs. As we are all sure the transplant will go ahead, unless something very weird happens when I get my bone marrow results, she has decided to go ahead and order the stem cells (bone marrow) from my preferred donor. All I know is that he or she lives in this country and is a 100% match. The logic is that if the transplant goes ahead quickly; say end of September; then we might just be able to tie in with the donor's timescales. If not it is relatively easy to change the date. Meanwhile the donor will be confirmed, checked out medically and a tentative date set.

She also booked me in on the Sept 2nd to have my pre-transplant medical - heart, lungs, kidney, bloods, etc

So if we go down the line of no pre-conditioning chemo, then I might be admitted last week in Sept for a transplant the week after. This would give me time to get fitter, have dental treatment and anything else needed. My rendition of 'When the Saints' on the clarinet is nearly good enough for listeners to approach within say half a mile. Well, at least with ear defenders on! It does give you a great work out for the lungs. And walking up 4 floors at the hospital each day helps heart and lungs

So the next step is bone marrow results on Monday, after which the dates might well change. But its more progress

Thursday 8 August 2013

A Leg up

Yesterday I had an ex marine health expert aged 70, examine my lumps over the bruises with a scanner. He then used mechanical massage and gentle electric currents to try and break up the scar tissue. This let the blood get in and repair the damage. Using ice causes the blood capilleries to close and reopen, again stimulating repair by my blood. Obviously I had to wait until my blood counts were good enough to respond to this stimulation

He also used shock wave technology to stimulate repair of my sprained ankle and ligaments. 

Today I had a medium deep leg massage on my legs to promote the same reaction

I have also taken up speed walking, using large ball based exercises, co trolled deep breathing, gentle push-ups and light weights to get my heart and lungs fitter. For the speed walking I go 1/2 mile up hill to a field with sheep in, give my sheep dogs some training and then come back. And tonight Roz is bring a couple of wind instruments over so that i can try and play one of the clarinets to exercise my lungs 

After the massage, I was told to drink lots of water and would feel tired. So I had the drinks and went out wrapping silage bales with a JCB telehandler

Tuesday 6 August 2013

Next step in the process to my transplant

Yesterday I had bloods and a bone marrow test. The results will be in two weeks, when I see the Prof again. Then we will decide how and when to go ahead with the transplant.

Meanwhile the consultant at Kings wants me to continue with the Azacitidine, starting another session next week. It's the 'if its down (the blasts or Cancer if you like) then let's keep it down' strategy

Meanwhile my biggest issues are trying to fully recover from the mad cow problems

My sprained ankle is a lot better, but a ways to go yet. The bruises are still very swollen. I am seeing a sports expert on such things tomorrow and getting a special massage on Thursday
And then it's down to getting fit, losing a bit of weight and getting my heart and lungs tone improved

I thought I might try playing the saxophone to help my lungs, so my granddaughter is going to teach me
As for the heart - exercise - possibly hitting  old bags - punch bags that is

And I am trying to get my teeth in top shape. The cow knocked half of one tooth off ( now capped) and hair lined cracked two others. So today they were X rayed. Before the transplant the dentist may need to do root work on them, and get my teeth very clean and gum disease free. Luckily they are in otherwise quite good shape

When your immune system is zapped the biggest danger of infection is yourself

Roz is doing well and helping me as I used to do to her before meet transplant