Richard having to have a Bone Marrow Transplant goes from 50% to 80% likelihood

At a meeting with the Prof in Kings yesterday, he reviewed what my Plymouth Consultant and I had decided and fully agreed with going full dose straight away. This was after my bone marrow results had shown the blasts go from 3% to 7%, showing that the MDS had 'progressed' again. (Progressed means gets worse !)

 

We spent a lot of time discussing a possible bone marrow / stem cell transplant, which has to be from an unrelated donor. This will be my decision - but he thinks that the time is nearly on us to make the decision. He said only a handful of people have gone beyond where I am with the Azacitadine, that I have had two years with good quality of life and that even on a higher dose I might not last more that 12 to 24 months on Azacitidine alone.

He has recommended full dose for 7 days at 4 weekly intervals for two tranches, followed by a bone marrow test, and then clinic with Prof on 19th August - probably decision day if a donor has been found

Out of interest the longest anyone has been kept going on Azacitidine is 8 1/2 years and the vice chairman of the UK MDS group (a professor of medicine himself) has been on it for 5 years now. 

Prof Mufti said I was in great shape physically for a transplant, and wholly agreed with expediting possible donors. Statistically there is a basic 38 % chance of me surviving two years from a transplant, but I have the attitude, physical condition and this great new ward in Plymouth all of which increase my chances of success. He is comfortable having the transplant in either Plymouth or Kings.

If we go ahead he would probably use Azacitidine and heavy duty chemo for pre-conditioning.

The Prof has offered to help Plymouth if I have the transplant there

A. Plymouth can send someone up for special training, which they do give often

B. And hands on support by telephone, email and Skype when needed.

He said King's protocols have some nuances compared to other centres for MDS, e.g. filtering T cells out of the donor transplant. Plus they have some special things they do post transplant, and can even now use Azacitidine afterwards! He is happy to share everything with Plymouth.

 

He was happy with the blood results from yesterday, as an indication the drug is still working. He expects the figures to look better 10 days from now.

So Hey Ho - I have never had a transplant and now I have a chance. It beats doing nothing!
Meanwhile I will get even fitter and plan how to manage things around the farm if I have to go through this several month trauma. The good side is, it is potentially a cure.

Meanwhile over the weekend staying with my son and his wife. We saw their new house which is part way through construction. We all then had a lovely time meeting up with old friends from London, went for a boat trip down the Thames, and all sorts of things in lovely weather. 

My last personal assistant who lives in San Francisco managed to meet up with us for 30 minutes while we past in Paddington Train Station - seen here in the photo I took 2 minutes before she got off the Heathrow Express.

 

Remember to take your tablets

A bit of a boo boo 

I had my last injections of azacitidine today. Beforehand I had bloods taken, and I said to Barbara 'Do not forget to remind me to take my anti- sickness tablet'

Well we both forgot. And the nurse is supposed to ask me - but I had never forgotten before 

So a few hours after, Barbara served me a nice meal - which I just couldn't face. A few minutes later I was very sick

That will teach me to forget

Afterwards I took a tablet, two cups of weak tea, a two pieces of slightly burnt toast ( carbon absorbs grot)

I am feeling much better now

Plan A and B in action

What a shame to have to go into hospital on such a beautiful day.

Roz is doing well, having been running a ceramics project all day Monday at a local school.

I am on plan A - which is basically up the Azacitadine back to full dose each day this week and hope that gets the MDS / blasts in my bone marrow back under control. Certainly I can feel the extra effect of the chemo, as I have had to rest more than on half dose.

I also have a clinic booked for a week on Monday to see the Professor personally, at his request.

Plan B is also in action.  Today they took an extra lot of blood to enable the Anthony Nolan Trust to find a stem cell donor match, in case I need it for a bone marrow transplant.

If you want to donate stem cells it is very easy these days. Go to the Anthony Nolan website to find out how.

 http://www.anthonynolan.org/What-you-can-do/save-a-life.aspx 

Devon County Show success

We had a good day at the Devon County Show - the first show in the country

We only showed 4 sheep - two Manx and two Hebrideans

We got a second in the young rams, a second in the young ewes, and a first in the senior rams with Apollo. He then went on to beat the other males in the run off, and then to beat the top female to win Champion in our Rare Primitive breed class. He won last year as well as a one year old.

 

Apollo seen here with me and my silly sun hat

The weather was ideal - not too hot and not too cool

The die is cast for the next few weeks

I had a clinic today, and Roz came along to keep me company as short term big decision were needed, and Barbara was not feeling well.

Even though my blasts had gone up a lot, Kings had recommended no change to the amount or frequency of the chemo. My local consultant and I were not happy with this. Last time the blast got to this level they went critical a few weeks later

The dilemma 

1. Was the chemo causing the problem with the blasts? And I need to come off it!

2. Or was the dose of chemo too low now? And I need more!

Both have happened with other patients

After discussion and reviewing my previous tolerance to the chemo we have gone for a plan A.

Plan A is double the dose back to the maximum next week, for 5 days, and then monitor the effect. At some time soon I will then have another bone marrow test to monitor the blast which cannot be directly monitored by blood tests. In fact my blood test today were pretty good! Much better than a couple of weeks ago.

And then we thought " what happens if it does not work? "

There are few options for my type of MDS. There are some new experimental drugs - but we do not live near a research centre, and the NHS would not now pay for me to have that done in Kings, and Kings do not seem to take private patients from this country.

So a "plan B" would be an unrelated bone marrow transplant in Plymouth!

So we have decided to approach Anthony Nolan etc and see if there is a match stem cell / bone marrow match. This might takes weeks or months, or maybe there is no match. But if I need it we had better start looking soon, said my consultant.

The good news is that she obviously thinks that my body is capable of taking it. That having a transplant close to home and friends improves your chances of success. And Plymouth has just opened a start of the art new transplant ward, and the staff are up to speed on these more complex transplants. The downside is the lack of experience, relatively, on unrelated donor transplants with MDS - but we have a plan to gain that experience and reduce the risk. 

At the end of the day, given the amazing facilities and access to world leading protocols, surviving a transplant is mainly to do with

Not catching an infection

And not having a rejection

So we hope and expect plan A to work, but are covering ourselves with plan B.

The discussion with Kings will probably happen in a couple of weeks, to confirm, refine or change our plans

A few lessons

Do not wholly trust blood counts to monitor the affect of this specific chemo

Do have a bone marrow test regularly to get the real picture

Trust your instincts - if you feel a bit worse, it is probably because you are

Open, informed a frank discussions really pay dividends.

I am very happy with this direction, and can now get back to winning my small section of the Devon County Show sheep section. I delivered the animals this evening, set most things up and our competition starts at 2:30 tomorrow. Wish me luck.

A little progress

My consultant in Plymouth is trying to contact the Prof in Kings - but he is very busy this week.

Meanwhile she and I agreed to bring forward my next course of Azacitidine from 5 weeks gap to 4 weeks, subject to a blood test on Wednesday.

So on Monday after the Devon County Agricultural Show this Thurs / Fri and Sat ( do come if around) I will get my half dose chemo.

We will be showing two Manx and two Hebridean rare sheep. Apollo our top ram, is our best chance of winning.

Photo is of similar Manx young ewes

Bone Marrow results not brilliant

I got my results this afternoon. They showed my Blasts had gone back up to 7% diagnosed as RAEB I again, which is not good. If you remember it was when they went over 10% that i had to start treatment. So the good news is that it is not RAEB II.

The consultant in Kings recommended carrying on as before, but i will ask my local consultant if we should increase the dose a tad, reduce the time between treatments

Otherwise i have a throat virus, temperature and cold - so feeling a bit rubbish really.

We are training up two rams and shearling ewes to take to the Devon County Show next week

Bone Marrow test and Clinic at Kings

Last Monday I went to Kings for a bone marrow test. This was more interesting than normal as the Dr took two extra lots of aspirate - the liquid inside your bone marrow, and then an extra chip or two of the actual bone. This was done all under local anaesthetic - which he topped up a couple of times as the process took around 45 minutes, rather than the normal 20 minutes. It does feel strange having the aspirate sucked out.

Bone marrow test samples

I will not get the results from the bone marrow test for a couple of weeks. One extra sample will be for some special genetic tests, to see if they can identify any genes that might be causing a hereditary problem. The rest is for a research project - so loads of forms to sign.

I had a blood test, which showed my Platelets had improved and Neutrophils dropped a bit - but no worries. At the clinic they gave the go ahead for the next course of Azacitadine, which I started yesterday. They confirmed the frequency and dose is OK, but will review my results in a few days time with the Plymouth consultant.

MDS Support Group

I was in Kings last Monday and luckily bumped into Sophie who runs the group for Prof Mufti

If you have MDS and you are caring for someone who has it in the UK and have not joined the MDS Support group I would advise you to give Sophie a ring.
Their website is http://www.mdspatientsupport.org.uk/ 

Richard and Sophie

Sophie and I are hoping to run a series of articles about the opening of a New Heamotology ward in Plymouth - enebling the first un-related donor transplants in that part of the South West. Brilliant!

We met the prof briefly, who asked after me and Roz.

Prof Mufti

Quick update

Rosalind had a chimerism test done last week, and got her results yesterday - they were very good being approx the same as last time. Overall her donor cells represent 99% - which is very acceptable. We expect that she will now leave the monthly transplant clinic and go to a less frequent monitoring clinic. Mind you she has had a bad cold all week. I guess we need some warm weather.

I had an extra blood test yesterday, and it showed that my immune system had come back up to a more acceptable level. My platelets have gradually gone down a bit over the last few weeks so I will mention that at Kings when I go for a bone marrow biopsy in a few weeks - they can check such details much better from this analysis.

I also saw a dermatologist, who has prescribed a more focussed steroid cream which is already working well on the rash on my elbow.

On the down side Barbara and I spent most of the day doing accounts! Roll on Easter and lambing.

Minor glitch

When I got my blood results i found a few minor issues
1. I am neutropenic again, only just, but a pain. This is the first time for 8 or 9 months
2. My platelets have gone down by a lot in the past 4 weeks - so my blood will not clot as well - so no cutting my arm with a chainsaw
3. The rash I have had for three months has spread and has been getting worse.
4. And I have felt a bit more tired this last week than normal
So another blood test in few days to see how things are going

The good news is that
I have been working hard
A new steroid cream seems to be getting to grips with the rash
I feel OK in myself
Lambing for real starts at the end of the week
The new bio-mass boiler should start working at the end of this week or start of next
I will be having a bone marrow biopsy in 4 weeks at Kings, which is the definitive test

Meanwhile, lots to do

Roz is doing well. She ran a very successful felt training day at a local school last week

Regards to all our followers

Another week of chemo passed OK

Today was a bit different at the Hospital. I arrived early for blood tests, dropped the samples off in the lab, and went for a cup of tea. Within minutes the fire alarm went off and fire wardens scurried around keeping us all behind quickly erected barriers, the fire brigade arrived, ...

And of course all the patients and visitors were offering useful advice.

40 minutes later the all clear was given and I could go for my final injection.

In general it has been a good week. Most of the new biomass boiler is installed
The Tarmac experts redid the trench we had dug out for the pipes, and we jit managed to be ready for holiday guests - and all in the pouring rain

And our cattle passed their TB test

Clinic again

Roz and I are having adjacent clinics tommorow so will each buddy for the other. I then expect to start my 20th chemo round next week

Roz is running a felt craft workshop at our place on Saturday.

We have started lambing, have just passed our organic annual inspection and are half way through installing a bio mass boiler for the barn complex and farm house

I find I can do a lot more physical work before I need a rest now - I think pushing myself is really helping

Next time I will hit the magic 20

I had my 19th lot of Azacitadine a couple of weeks ago. I had to go back to Ondansotron as an anti-sickness tablet again as the others were making me physically sick. No worries, other than I am 67 tomorrow! But then I was not sure I was going to live this long two or three years ago.

Still one day at a time, but now with a sneaky bit of planning a few months ahead.

I am feeling well. I can do a 10 hour day, as long as only part is physical. I have been on the digger repairing fields damaged by flooding and idiots driving on them in the wet and creating deep ruts. Our new bio-mass wood burner gets installed this coming week - which is exciting. I have developed a new 'fluid' version of a web site for friends in a Farm Holiday Cooperative - this works on large screens right down to phones . Try resizing the browser window down to very narrow, or using on a phone. It was fun doing some computing again. I have my main website to do next, but am waiting for some new clever fluid indexing software that can manage the scale of my website.

Portlands - with lovely wool

We are about to start lambing in a few days. Three of our new rare Portland sheep should be first, then 76 Manx and Heb sheep, then the last Portland. They have all scanned 'in lamb' .

Easter egg cosies

Lovely vases

And Roz is doing very well - working hard. She has setup a whole lot of Felt Workshops both at our place and hers, and has some teaching work and other bits. She is also cleaning the holiday cottage for us - now that is an achievement given her lack of immune system18 months ago.

A bit more normallity - scary but gooood

As we are both feeling so much better, we are able to take on a few more things. The current project is to try and get our self catering cottage up to speed. Having had to close both cottages three years ago when we were diagnosed with MDS, we have started marketing just one of them - Swallow Cottage.

In the past three years the Internet has changed a lot. I can do simple blogs and full screen websites. But now I find for modern marketing you have to master Facebook, Twitter, smart phone based web design, and the latest ways of getting Google to notice you. Luckily Roz has been using Facebook for a few months, so she is managing the cottage Facebook site. And I am getting some help from friends on the rest.

Tomorrow we are reloading the names and addresses of previous guests for a mail shot.

Our first guests since we reopened are coming in a week, so we also have some last things to do for that. We had the AA rate the cottage as **** but we were told to put in an LED TV and docking station for smart phones! My, how things have changed.

In addition Roz and her friend are trying to organise some dates to run felt making, jewellery or even ceramics workshops here on the farm.

Getting back to doing more is great, but a little scary at times. We get brought back down to Earth when we have clinics, or I have my 5 weekly bout of chemo. My 18 th bout finished last Tuesday and was the least problematical, touch wood, so hopefully they we will stay like that.

How many people are following this Blog?

I have often been asked how many people are following this Blog?

Well I am not to sure but here are the stats

17 formal followers
12537 views in the past three years
468 in the past month

I am pleased that as well as family and friends, there are lots of patients and carers who have found the Blog useful, some of whom I know personally now. Ros and I always mainly wanted to do this to help others. Please use the comment facility against Blog entries to add further value for the benefit of others.

You can get new post by email by filling in your email address top right of the full site blog

Keep  cheerful and healthy
Richard

18 sessions and counting

Two more days and I will have completed 18 cycles of Azacitadine at 4 or now 5 weekly intervals. I feel well and am working hard each day, except for the 4 or 5 hours after the chemo.

After the 17 th bout I got a rash. They treated it as a fungal issue, but later we tried anti- bacterial treatment which seems to have cleared it up.

Ros is fine physically, and is flat out with the kids etc.

A Happy and Healthy New Year to you all

Getting Insurance when you have MDS or similar

Getting Insurance when you have MDS or similar can be very hard. I asked Sophie via the MDS Patient Support group (http://mdspatientsupport.org.uk) , and she put me on to their Forum on 'travel topics' http://mdspatientsupport.org.uk/forum/

I have just got insurance via Freedom Insurance, Cambridge - for £236 for my wife and I for a week to Estonia - to see our son who lectures in philosophy out there. (Well someone has to )
For just the medical stuff the insurance cover would have been £197 for both of us, but the one we got also covers hotel issues, flight issues, volcanoes the lot: . This is not cheap, but there is no ambiguity of cover on either of us should there be a problem.

My wife was diagnosed with a very very mild heart problem 4 years ago - she has had no treatment, but it has to be declared. So not really a problem.

I was diagnosed with MDS RAEB II originally. My blasts got to over 10, before they put me on Azacitadine. I have been on that for 14 months, and have responded very well. My blasts now are <.5, white cells 4.4, Haemoglobin 15, Platelets 133. I have never had blood transfusions or inpatient stay. So this is a text book response best case for Azacitadine so Prof Mufti says. I am now on half dose Azacitadine, for only 5 days (it was 7), and only every 5 weeks (it was 4 weekly)

The lady in Freedom Insurance seemed very clued in, she asked intelligent questions as well as pulling up the scripted ones. She had to check with a superior about the idea of using chemo to just keep things contained for MDS, which he understood and agreed the cover

Freedom Insurance company seemed a lot more knowledgeable than Columbus, who I tried. Their script did not seem to work for what I have, and the fact that I am in remission did not figure – they declined me any insurance for the MDS aspect.
I tried to get through to World First Travel, but their computer was out of action.

I hope this helps other patients

No news has been Good News

Roz has been very well and has been running various craft workshops for adults and children. The next one is making all sorts of different Christmas Decorations - I really like these life-like Christmas Puddings

I have been very well and have continued to respond to the 5 weekly treatment. I have to watch out for anything vaguely sinister on my skin, and a consultant will cut out one mole like thing that was not going away when treated with liquid Nitrogen several times.
We got our new bull last week, and had thirty gentlemen around for breakfast on the farm on Saturday - we raised money for the local Church and for the new Cancer Ward in Plymouth

My wife and I are going to Estonia after my next treatment - its a pain having to get insurance when you have Cancer. But the MDS Patient group can help with a list of companies

Progess is good

Roz is well and waiting for her twice monthly results. She is trying to setup a whole series of craft workshops to bring in a bit of dosh and get her slowly back to part time work.

I am very well. I had another two lots of chemo since the wedding. I seem to recover quicker each time, with my blood counts not even going down during. I can even work in the mornings after each jab, but still feel crap in the afternoon and over night. So my local consultant, a lovely lady, has extended the time between treatments from 4 to 5 weeks. So a bit more time for 'a life'.

We went on holiday and have been to various events - see photos below

Helping at the Kingsbridge Show

Slimbridge wildlife center

Gloucester

Docks at Gloucester

Selecting a bull at Adam Hensons Cotswold Farm Park

Costwold wild life park