We both went to clinic

Rosalind went up to Kings for a clinic, now 266 days after her bone marrow transplant. She had a quick blood test and then a chat with a senior post transplant consultant that we know well. He is slightly worried about some dysplastic (funny shaped) cells but overall was very very pleased with her progress. They gave her another top-up of special stem cells which they have on-ice from her donor. These are filtered to target the area where her donor cells are not at 100% yet and he believes these new cells will take on and deal with the dysplastic ones. He has also taken her off one of the few remaining drugs she has been taking every day, which will have the added virtue of encouraging her new bone marrow to do an even better job. She expects to get regular top-ups every two months for some time - just to make sure. So a pretty good position to be in, especially after the scare of a few weeks ago.


I had a clinic in Plymouth at the same time, and the consultant thought I had managed the first tranche of azacitadine very well. Most of my blood counts did the expected and hoped for dip and then recovery. My nuetrophils had dipped and have now bottomed out, but not yet recovered. She expects them to do so by Monday. So the plan is to have another test on Monday, and if it is no worse or better, then go ahead with the next ten days of treatment - starting that afternoon. And I am also feeling very well.

Checking stock when neutropoenic

Our stockman could not come in at the last minute on Sunday as he had a nasty eye infection which kept him off work for two days. We needed to get some photographs of the cattle, as we are having to sell most of the them to simplify the work to a half manageable level - given that I am likely to have a unrelated bone marrow transplant at the end of the year or early next - which will have to be done in London and Ros is still having treatment.

So we decided to just go ahead and check all 500 or so animals on the farm, once in the morning and once in the afternoon. Morning took about 2 1/2 hours as many had to be fed - the afternoon took 90 minutes - some of which was taking photos

Now the Consultant on Friday had told me to be very careful, not to go to the shops etc. So what we did was I put on clean clothes as usual, then clean overalls, then a hat, mask and surgical gloves, with a spare pair in my pocket. Photo taken by Barbara with my iPhone.

I did look  a bit of an idiot - but it was lovely to get out on a nice day, and meet up with the animals. We also made lists of minor repairs around the farm. After the morning I showered with anti-bacterial gel, changed, washed the overalls and repeated the precautions in the afternoon.

So - where there is a will there is a way.
It was a lovely day and I got my photos - some shown below

Day 19 after Azacitadine treatment started

Well, in the  last few days my counts have really dropped. These graphs show what has happened. The idea is that they should bottom out about now and then go up to what they were. We do not think the Neutrophils will bottom out for a few more days - the platelets already seem to have done so - which is sorta what was expected. The peak in my neutrophils was when I had an eye infection prior to treatment.

You need Neutrophils to stop you catching things - normal readings are from 2.1 to 6.3. The doctors recommend various measure to reduce the risk of catching something when your Neutrophils are below 1. Below .5 the list is a lot longer. If they go too low, then you go into hospital in transplant room, with barrier nursing.

Platelets are needed to stop you bleeding if you cut yourself - normal readings are from 150 to 450. If they get very low, you get a platelet transfusion.

So I have been instructed to be very careful the next few days - no shopping,  use gloves when stroking the dogs, peel tomatoes, etc

A couple of days ago I went in to be checked out because one of my legs had swelled up a bit and I had cut myself while doing my teeth. The bleeding was because I had 'flossed' them very very carefully - but I had just touched a gum, and it immediately created a cut - seemingly some parts of your skin can get cut more easily while going through all this - so now it is soft toothbrushes only.
The swelling was due to extra fluid retention because I have to drink a lot to stop nausea - and the swelling tends to go to a weakness in my case where I had had blood clots 15 years ago. All very interesting, and nothing to worry about.

My Azacitidine is working and Rosalind is to have another topup

A couple of bits of good news

My Azacitidine was supposed to hit my blood count values hard about now to be doing its job properly - well it seems to have done so - lowering my platelets, neutrophil and other counts. This is basically hitting the components that are producing bad cells. It means I have to avoid crowds for a while, but that is no problem. My other side effects, besides fatigue, have all gone away. I am however managing to get quite a lot done, in between tranches of work having to sit down for 45 minutes or so. After another 10 days or so, the counts should improve again, hopefully with better cells

Rosalind heard from Kings that she is to go up there for a stem cell (bone marrow) top-up - which is what we hoped would be the next step. Then she and the family hope to get a week off on holiday

What a change can happen in a week - a bit of a roller coaster. Now that is a good idea for a holiday!

Rash with Azacitadine - how to treat

You can get a large pink reaction to each of the Azacitadine injections.  This can be very itchy and cause discomfort - especially as you might have 14 of them across your stomach, all the size of a mans watch. The doctor offered anti-histamine tablets, but I heard about using evening primrose oil from Sophie at the MDS Patent Support Group in Kings www.mdspatientsupport.org.uk 

She had heard about it from a German article where they had done some research on it - see link to Evening Primrose Oil on this page 

What I did was to buy some tablets and then drill a small hole in a tablet such that I could put one drip onto each of the 14 rashes. I then rubbed it in gently once a day. This seemed to help me a lot.

If you want to try this, I suggest that you check it out with your doctor or specialist nurse.

Rosalind's Chimerism tests look better

To cut a long story short we think that the last results Rosalind had 20 days ago were the wrong way around - ie the % or bloods that were attributed to her donor and any residual old bone marrow were shown the wrong way. So there was quite naturally a panic.

These results had been showing the original trend of most of her blood types being100% from her donor - which is great. One particular type of white blood cell had been hit hard by some drugs she was taking and the donor percentage had gone from 20% up to 50% and then back down again, which is why she had some 'donor stem cell top-ups'.  These had been making a gradual recovery until 10 days ago. And the results from last week confirm that and show a healthy improvement.

So the doctors think the test results were wrong from 20 days ago as mentioned

They are rechecking the latest results, to double confirm that. They had spotted a couple of minor cell deformations on the last test - which may or may not happen often as they rarely do that test unless they are worried about something else

We graphed her results assuming that the 20 day ago tests were attributed incorrectly, and it shows a regular trend in the right direction.

So the outcome appears that the panic is over

Our guess is that she will then get a couple of more top-ups to push the recovery along faster

As soon as she was told she perked up enormously - these things put a great weight on you. So within minutes she was 'organising' us again :-)

Azacitidine - end of first bought

I have got through the first 7day bought of Azacitidine reasonably well. My kidneys got hit a bit for a couple of days – but are back to normal. I also got very bad constipation and felt awful for 36 hours – even though I was eating prunes and figs – but some Senna tablets soon sorted that out. Strangely my neutrophils went up a bit – possibly in reaction to having a bit of a cold on Sunday, and my other counts are fine.

So now I am feeling OK – a bit nauseous and tired. I suspect the main effect will be in a couple of days. My stomach looks like a pin cushion with 14 large red areas all the way across.

So I have a blood test every week, another bought of Azacitidine every 4 weeks until October or so, and check-ups with my Consultant when I need them – assuming all goes to plan.

Rosalind is going in to see the Consultant this afternoon - so we are hoping the news from Kings will have come, and be good. 

Azacitadine day 4

The treatments have got faster. It actually only takes about 5 minutes.
I am starting to get side effects. Constipation - they offered tablets but I will manage with prunes and other fruit. Slight temperature variations, and tiredness. And nausea. Rosalind told me to eat a little and often to deal with nausea and it does seem to work. I take nibbles to eat three or four times in the middle of the night, along with a drink. I am mainly drinking squash made up with bottled water, which is safer than still or tap water when you are neutropeonic. The other thing that helps is sleeping at around 30^ angle ( three pillows do it)

Azacitadine treament for Richard's MDS - day one and two

Well yesterday I had my first injections of azacitadine. In many senses it was a lot less trouble than I had built my self up to deal with. After a normal one hour wait in outpatients two nurses who had not used the drug before got me sat down ready. A registrar came around and checked that I was in good health and gave me a 30 page document to read on what it is for, and a long list of possible side effects and risks - fun reading I can tell you. Barbara also went through it.

The actual injection is very easy, but just before they give you a tablet for anti-nausea - a common side effect. I have to take those twice a day until the 7 day course is finished. They also gave me tablets, one a day, to stop me catching gout. Now I normally get gout once or twice a year and it is very painful - I treat it with heavy duty special pain killers. This tablet, however, stops the crystallisation in your toes and you do not get the pain - I am told.

The actual injection was in 3.4 mls of azacitadine in two places a few cms apart, It took a few seconds and was no problem. I hung around for 30 minutes to ensure I was OK and then left.

Later in the evening I found I had two rashes had developed, The upper picture shows one of them that evening and the lower one this morning. It is about 3.5 cms  high by 4.5 cms across.

When I went back for another injection today, one of the consultants who had used the drug before said that the reaction was the classic rash that you get. So I thought it might be useful for others to see what it looks like, With me it was a bit itchy for a while but otherwise seems to be no problem. By this evening it has started to fade. Five hours after this afternoon's injections I have had no new rashes - which is great

By mid next week I expect my blood counts to have plummeted and I shall have to be even more careful for a few weeks. The lounge at home will become a mini-office as well as that beloved day time television. I shall still take the dogs out around the farm to keep me fit both physically and mentally. I also have to eat little and often, drink a lot of fluids, check my temperature in case of fever, monitors for nausea and loads more possible side effects

The really weird thing that Rosalind felt as well is that you go into hospital and basically agree for the staff to poison you, when you actually feel very well. And you know you are going to feel like shit a few days later, and there is a chance of more serious risks. Its very scary. And all this is down to trust between you and the hospital staff that their tests are correct and that things you cannot see or feel have to be treated ASAP. The other thing is that you do not have much time to agree the treatment. MDS can progress very quickly, as Ros found out, so starting treatment and getting a donor lined up quickly is life critical. One way of helping this is to have supportive carers and a very positive attitude.

Meanwhile, while all this was going on Ros joined me in hospital to have a whole series of tests done, She had normal blood tests, a blood chimerism test - which can figure out what % of each type of cells is coming from her donor. She also had a bone marrow tests, which is necessary to determine the underlying status, and a special bone marrow chimerism test - similar in objective to the blood chimerism test.

So poor Barbara was taking it in turns to sit with one of us then the other. At one time they moved patients around a bit so that Ros and I could sit together and keep each other cheerful. Very surreal. Very weird. Two of us in one family with a very rare disease yet again being treated together.

Rosalind has some poor news

Her latest chimersim test has shown:
The good news
The parts of her blood that had been from her old bone marrow (which is not good) as opposed to her donor's had got a lot better
The bad news
That parts of her blood that had been correctly from her donor, had reverted to being from her original bone marrow - not good.

So on Monday she has to have a bone marrow biopsy to check it out properly

Meanwhile it has been confirmed that I start my azacitadine on Monday at 2:00 p.m., with Ros having her test an hour or so later

What a pain