Pre Transplant activities

Its been a very busy week. Buying things to take in with me, sorting things out for when I am away etc. Its a bit like going away on holiday for a long time and have to get everything in order and actions placed on staff - and knowing that when I get back there will be more things to sort out.

A tip for your teeth.
It is very important to minimise the chance of getting mouth infections during a transplant. I went to the dentist to complete a root canal treatment and get a final cleaning. For many weeks I will not be able to use hard toothbrushes, nor floss as my immune system will be low and I will cut easily (your skin, lips, gums etc become very fragile). They will give me strong mouth wash 3 or 4 times a day - Cordasyl I believe. The dentist suddenly remembered that the same company do a gel and more importantly a tooth paste with the same formula, and gave me a few sample tubes.

Heart and lungs
I have been doing 4000 to 7000 steps every day, climbing stairs, going up hills on my farm and anything else I can to keep my heart, lungs and body fit. My sheep dogs really like it when I get them to work - they will not enjoy the next 3 or 4 months of relative inactivity. When can next work around the farm again, they will be thrilled. I have also have full body massage and reflexology - which help with stress and general well being.

For boredom in hospital
When I am not feeling absolutely rubbish, if it is anything like when Roz was in, you need lost to do - otherwise it is numbing by daytime TV. So I have a few compelling books to read, including the Hobbit and the Lord of the rings. I bought new hard back copies so that the letters would be large enough to read easily, and because my existing well worn and much loved copy is a health risk!!
I will be furnished with a variety of DVDs. On my iPhone I have a lot of favourite music. The isolation ward is very well equipped - including a smart TV and free wifi. I will be taking my laptop with several website that are in need of a major overhaul - I am web-master for our own website, one for Roz and several local organisations such as the Rare Breeds Survival Trust. My intention is to smarten up their image and make them all work on smart phones, pads as well as PCs and Macs.

Loss of hair
I am bound to lose my hair so I have had it cut short to get used to it. My wife has also kindly knitted me several different hats to wear - from very soft up to ones for out door use.

Ros is still doing very well, and had one of her infrequent chemerism tests which confirmed that her donor cells are very much in charge. I look forward to letting you know the same about mine in the future.

The date is set - and its soon!

I went in for my pre-transplant clinic, expecting to hear that the date had not been finalised, or set for the end of October / or November

Instead it had all moved on.

I had my meeting, where they told me I would have my transplant in about 2 weeks! I then went through the whole process, side effects, how they would be mitigated against, and % risks in each major stage. As we had been through this before we understood it all, albeit needing some refreshing of memory - and there were a few differences as technology and drugs have moved on.

Seemingly my heart, kidneys and lungs and anything else they tested for are in top notch condition, and I am feeling very fit

I then had a bone marrow aspirate by Dave, who did a brilliant job - I hardly felt it. They will check that on Monday or Tuesday, and only if my blasts have rocketed would they deviate from the plan below. (If it had gone up badly, I would be whipped in for heavy duty extra chem inpatient stay)

So the schedule is
7th Oct - blood tests
8th Oct - have a line put in my chest so that all tests, intravenous medicines, transfusions etc can be done by that, which is great as it save having 10s of jabs a day
9th Oct - admitted to a Transplant isolation ward.
14th Oct High dose chem to wipe out my entire bone marrow, and mess with a few other things probably
16th Oct Stem cell transplant - which is just an infusion a bit like being given blood
Then for two week I will be given blood and platelets as needed, as the new bone marrow needs time to activate. During this period I am at risk of infection due to no white cells.
After 5 weeks or so I will be let out when my counts have come up - particular the white cells

Meanwhile they monitor carefully and pump me full of all manner of stuff to preempt problems or fix them

A delightful morning out

Pete and I are fellow MDS sufferers at Derriford Hospital. Pete is also on azacitidine , being just over a year behind me on the number of treatments. 

While waiting for treatment we have 'shot the breeze' about many things and given each other great support for over a year now.

Yesterday Pete very kindly picked me up in his lovely Aston Martin sports car, seem here between us with my Jaguar behind. We went to Buckfastliegh where the renovated railway track and rolling stock has its main station and sidings.

There we had coffee and 'put the world to rights'. It turned out that he was in the Sea Scouts while I was in the Air Scouts

He has very kindly offered to keep me company in hospital when Family cannot make it. 

Heart, lung and kidney tests

This is basically to make sure my main bodily functions are up to having a bone marrow transplant

Check out my heart

I stripped to the waist and then was hooked up to a series of machines by three heart monitors - which measured my pulse and then presumably super imposed the trace along side the ultra sound traces that followed

The nurse examined my heart and major veins from three different directions taking images and short video clips as my heart beat. She showed me some results. My heart and all valves seemed to be just fine. It was really interesting when she showed me a main vein - vena cava - as I breathed in deeply the vein closed up completely and as I carried on breathing the vein filled up again. Good job really !

Kidney test using Nuclear Medicine

This was very easy. A nurse gave me a low dose of some radioactive tracer, which then has to be dealt with by the kidneys. Then at 2 hours, 3 hours and 4 hours to the minute if possible, I had blood tests that were all sent for analysis. Presumably they also monitored my other normal blood counts at the same time. This is then a good test of kidney function

Lung function test in the chest clinic

The tests were much more thorough than I remember from years ago. They hook you up to a lung monitoring machine, through a disposable sterile mouth piece - mine was blue. Then I did three tests, and repeated each until they had consistent results. They all involved  normal breathing, very deep inhaling, very deep exhaling,very fast and slow, and lastly after a fast inhale all the way; I had to hold my breath for 8 seconds. I felt perfectly fine during all of it - no problem.

Hopefully all the hard work the past few months trying to get fit should show dividends. Everyone says that the fitter your body functions are the better. This is not getting fit in the sense of loads of extra muscle - although muscle tone of the heart and lungs is important

I will get results on Friday.

We could have just sat there and read all day, but in the bigger time gaps between things we walked around, had snacks, and found a local nature reserve which we walked around for 45 minutes. Barbara and I both have the 'Pacer' App on our iPhones so were able to record how many steps we have taken during the day. So I had done over 5000 steps by lunch time.

 

Pre Transplant Procedures commence

Well here we go

I finished my last dose of Azacitadine yesterday (probably :-) ). I have managed the effects of these last two courses quite well, even though they knock me out for several hours given the full strength nature. I suspect that my fast recover from the chemo is in part due to diet, a lot of walking, climbing stairs and hills quickly, and doing controlled deep breathing for a few minutes each day.

I just got details of my next steps
The transplant is not a 'go' until I pass various tests and have a pre-transplant special meeting with my great consultant.  This mainly to go through the procedure and the risks and what can be done about them. So the tests start on Monday with:

09.00hrs-ECHO(Heart test) Cardiology

10.00hrs-Nuclear Medicine for Kidney tests

A series of blood tests taken at 12.00/13.00/14.00 in the venepunture suite

12.30-Lung function test- Chest clinic 

Special pre-transplant clinic on Friday

Bone marrow test and other things to follow

During all of this we are waiting for the preferred donor to be checked out and confirm a mutually acceptably date - hopefully mid to late Oct

So this is good. A transplant is the only opportunity for a cure, so even though it is scary I will go forward to it with all my will power and strength. I can count on a great team at the hospital, and the constant support of my wife and Roz and help of other family and friends when they can make it. 

All prayers gratefully received.

Day 5 of this bout of chemo

I am feeling very well, having kept as active as I could all week

However the Azacitidine is hitting me quite hard this week, lowering my Neutrophils to .2, that is hardly any immune system

So no musli, uncooked fruit or veg, no nice cheese, no pepper, etc and only pasteurised fruit juice, yoghurt etc

The rashes I get after the injections are longer lasting and worse this week, so I have to keep an eye out for possible infections

I am now getting very impatient about the transplant. Most people at this stage 'just want to get on with it'. I keep being told 'be patient ' but I have always been one to want all my ducks in a row, and see a plan executed. So I might have been. Good in the 'A Team'

Anyway, so far so good

Roz is very well and very active

Keep well

Richard

October it is for my Transplant

In the end we have gone with plan D!!

The Prof at Kings and my local super consultant had a chat, assessed risks and benefits and decided to go for a transplant in Oct, all being well. I am very happy with this solution and was going to ask if I could do that anyway instead of waiting 4 months - as it is less time to catch something nasty, less time to worry about it and frankly you get to a stage when you just want to get on with things (while at the same timing thinking this is scary)

So the process is

• Request the stem cells and schedule the donor
• Next week I have my last round of Azacitidine at full strength for 7 days - which should carry on the process of knocking down the blasts
• Have a pre-transplant formal planning and risk assessment meeting
• After a while to get over the chemo - have a series of tests to ensure I am medically fit enough - heart, lungs etc.
• Have a bone marrow test, when my local consultant will check the blast level herself on the same or next day

This whole process is part of the seven stages as outlined in a book  - click on the link if you want to read it.

Meanwhile continue getting fit and sort out other bits and pieces

• Clarinet to help my lungs
• 6000 to 10000 steps per day to get my heart and lungs going (often vigorous)
• Various minor exercises
• Massage and Osteopath to tone up muscles
• Make sure my teeth are in good nick - I still have two damaged teeth which should be removed or have root canal treatment, neither of which should be done given my status - negotiations ongoing
• etc

 And of course to try and keep stress levels down. We had a smashing holiday last week which helped a lot in this respect

Where my extended family stayed in South Derbyshire

The pub / restaurant in Bamford where my wife and I had our wedding reception many many years ago

Dovedale - a beautiful restful valley in mid Derbyshire

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

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

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

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

Possibly last dose of Azacitadine

The transplant nurse told me I have a choice of two donors, both with 100% match. One is in late twenties and the other early forties.  So this is great news, if a bit scary that I have no real choice but to go through such a risky process. 

I am on Azacitidine for 7 days, which might be the last dose I have if the bone marrow tests shows very low blasts and if the transplant can be arranged for early Sept. But it is possible they might give me one more dose, just to keep the blasts down if scheduled for later. Or, I might have preconditioning chemo. The Prof and my consultant will decide in a few weeks

Meanwhile my bruises and sprained ankle from the cow episode are getting better - but I have three or four large areas of  swelling on my legs which might take 4 weeks to be re-absorbed.