Looking forward to Christmas

Rosalind and I have both been checked out today and are both in good nick. So we can both look forward to a nice long Christmas break.

We both hope that you all have a great holiday - and remember that life is short so make the most of it

Happy and healthy new year to everyone

Roz and I have a clinic with Prof Mufti

Prof says to go ahead with next course AZT, and I am doing very well. He reckons my graphs are a great advert for Azacitadine - 'that is what is supposed to happen.'

The drop in Ferritin is because my red cells are much better and many more in number.

We should carry on with AZT until I have had nine courses (nine months)

I am to go back and see Prof - 27th Feb, just before 9th tranche

After all nine courses, he wants me to have a bone marrow biopsy at Kings, when they may check extra things

Things to watch out for on AZT are

- blasts going back up

- rash getting very bad

- granulocytes going very low

GCSF can be used to get  granulocytes up again

Can reduce dose of AZT by up to half to reduce rash - sometimes does not work

Can delay treatment, after 9 months, to 5 or even (a max) 6 weeks between courses, and / or with reduced dose. It depends on how I am doing, side effects and counts

He is happy to have the odd 5 week between courses in meantime. Eg over Xmas

He is very very pleased with Rosalind's progress. As with other patients we may need to now also address the emotional and other 'in your head' aspects of post transplant recovery for patient and carer. One of his staff is starting a research project into this.

Hereditary aspects

They feel there must be some genetic link but have not found one yet ( other than in 25 specific cases with known faulty genes). They are doing a very complex genetic analysis on a large number of patients, including the two of us anonymously, which will take about another year to complete. They are developing specific genetic tests. He is considering what we, as a family, might need to do. 

The future

I may stay on AZT for a very long time

Possibly with help of GCSF, varying dose and / varying between 4 and max 6 weeks.

There are two new promising drugs being trialled at Kings, one of which was developed at Kings.

Catering for nausea

One of my best friends is undergoing chemo now as well so I thought it might be useful to put a couple of ideas up.

One of the big problems of chemo is nausea. The doctors will give you various anti nausea tablets, tuned to you and your treatment. Some of these have unpleasant side effects, and so you get other tablets to treat the side effects, and so on. Its all a balance.

I found I could  reduce the effects of nausea a bit by eating little and often, and snacking every few minutes with very small things. Things that worked for me were, salted roasted peanuts, crisps, individually packaged plain biscuits, such as the coffee biscuits shown in the photo. Burnt toast is good too - the carbon seems to absorb uggh in my stomach. The other thing is sipping drinks - whatever type works for you. I found Ribena (black currant drink) was the best, or pasteurised / long life fruit drinks through a straw. (I tend to be very nuetropoenic as well, so with no immune system the indiviudaul packaging and pasteurised stuff is important)

If you get constipation as a side effect, then eating prunes and Scots Porridge Oats helped to reduce the need for tablets to sort that out. Basically lots more fibre than you would normally have
And sitting up is important. If you lie down too much you can get refluxes which is not nice and can cause nasty problems to your throat as acids from your stomach are very strong.

Good new. AZT seems to be working, at least for now

Not everybody responds well to azacitadine. I met a lady the other day who had to come off it after 4 tranches, as it did not agree with her or was not working. I am finishing my 5th tranche tomorrow.

AZT certainly has been doing me some good, as my platelets and red cells are now very good. My neutrophils are back down at .4 at the moment - they seem to go down to .4 each time and then build back up to 1 just before I get hit again.

The less than good news
This time, I got a new side effect. This was a skin infection on several parts of my body - it seems to be reacting very well to a special course of antibiotics. I also have rashes all over, which seems to react to E45 cream. Anti-inflammatory tablets have helped, but the Piritin had to be replaced by stronger stuff to give me more relief. The good news was that the new stuff does not cause heavy duty drowsiness - so I can drive again. The net other side effects have not been very pleasant - nausea etc. (Mainly the etc. !!)

The good news
Now the really good news is that I just got an email from my consultant who tells me that my BLASTS are down at 3%. This is back into a normal range - I was at 10+%. before they put me on to AZT. You might remember that that >5% is early warning, over 10% means start treatment and over 20% means you have leukemia as well

I am going up to London on 5th Dec to see the Prof- armed with printouts and results so they can compare with my previous results.

One year milestone

Rosalind
It is now one year to the day that Ros had her stem cell (bone marrow) transplant. She is looking very well and fit and we just heard that her latest chimerism test had showed a major improvement from a couple of months ago.
Most of her red and other cell types are 100% from her donor - which is great
Her CD3 type was down at 24% donor last time and has gone up to 47% - which is really good news. So she does not need another top up - and will be checked out at Kings in January again

Richard
I had a clinic this week and a bone marrow and blood test. My bloods are all excellent except my neutrophils, which are not bad having gone back up over 1 again, as per the pattern. The consultant is very please at how my body is taking it. So I start my next bought of chemo on Monday and hope to go up to Kings at some point to discuss the longer term with Ros and the Prof

So all good news - we are having a party with a few friends and family on Sunday to celebrate  Ros's one year, Barbara's 65 birthday, good harvest, good herd sale, my health, and to formally wish one of my staff good luck in his retirement.

Feeling good

We had to down size our herd and sold ~ 130 animals at an on farm sale. It was very sad saying goodbye to animals that we had brought into the world and showed at County shows, but we made very reasonable prices. We still have a few left, including two that calfed in the past few days. Downsizing was to enebl us to cope, should Ros and / or I need more complex treatment.
We are donating some of the proceedings to the Plymouth hospital to help them create and / or  fit out a new ward which will enable them to offer the ability to do unrelated donor stem cell transplant for the South West. We also got a nice contribution from our Auctioneer, and a person from whom we had bought cattle some years ago. So the total cheque to them will be ~ £1200.

I am in for blood tests, bone marrow tests and clinic on Wednesday

Ros is still waiting for her bone marrow results and whether she should have a top up from ages ago

Fourth lot of of AZT over

Well the chemo is going OK. I met a lady the other day at an MDS support group meeting in Exeter ( which was very good by the way) and she had had come off AZT after four lots, and I have know other who get bad side effects, so I am doing very well.

This time was similar to last, except my skin is very sensitive and I feel like scratching all the time.

I got my blood results back this evening. The are all excellent, except for my neutrophils which have taken a dive, and are back at .4 - highly neutropenic - but the doctor was not too worried. OK then I have to wear surgical gloves around the farm again, and avoid various stuff, but that is not too bad. It will probably bounce back up a bit next week.

I will have a bone marrow test in a few days time to see the underlying effect of it all.
Meantime we held a herd dispersal sale and sold most of our cattle, just to make life a little simpler. It was very sad, we hardly slept the night before or after. The animals looked great and commanded good prices in front of a large audience at the on farm auction. One of my farm hands retired, but we will not take on a replacement.

Rosalind was really annoyed. Not with the medical staff, but her latest bone marrow biopsy has been sent up to Kings twice, two different specimens, and neither got to the doctors there. The 'system' sent them back to Derriford, probably because of funding disputes. This has lost a lot of time, that could be life threatening - we just do not know. The doctors from both hospitals are furious

A bit better

I had blood tests 10 days after my last lot of chemo on Friday and they are pretty good, so I can go out and do stuff. I feel a lot better. Clinic next Wednesday, then start again probably the following Monday.

Rosalind got over her infection and and had a bone marrow and blood test on Wednesday. We need to wait for ten days for results

Its a lovely day so we all hope to have some fun in the sun

Roller Coaster

Rosalind had her neutrophils go down to 1.1 and then got a throat infection. This got worse and her temperature went up to 37.5 C, which was not a problem. Then last night it shot up over 38 C so she had to go into Hospital ASAP to be checked out. This was after 9:00 p.m. So a friend kindly baby sat. At 11:00 p.m. she had not had results of a blood test back so her partner had to go home to take over and Barbara went in. Luckily her neutrophils had gone back up to 2.0 so she could be discharged with normal anti-biotics as opposed to intravenous ones. She is OK now, having a long lie in

Meanwhile my neutrophils have gone down to .6, so I cannot go near Rosalind and have to be more careful again

Rosalind gets another upset, and I finish my third lot of AZT

Good news

Well it's Wednesday. I have had seven(actually 14) lots of AZT this week. No real problems. The usual nausea, constipation from the anti- nausea drugs, horrid red blotches across my stomach, and excessive tiredness.

In spite of that I have managed to do quite a lot around the farm this week - mainly moving, checking and sorting out sheep to go into different lots for sale.  It has been very nice working my sheep dogs, especially Josh. His mother Whisper is still willing, but getting on a bit. Last weekend we had folks coming to buy sheep, and we really enjoyed sorting them out 33 lovely Hebridean pedigree sheep

Less than good news
Meanwhile Rosalind has had another upset to her recovery. Her latest Chimerism test has shown that her original bone marrow is still taking up too high a percentage of her total number of cells. It is the so-called CD3 cells where her donor cells only represent 25% of them. Only a full marrow marrow biopsy will tell them exactly what the issue is and what to do next. It could, for example, require her to have low dose chem followed by another top-up - but we just do not know yet.
Her bone marrow test will be on Monday, and then we have to wait 10 days or so for both Kings and Derriford to analyse it.

Tranche three of Azacitadine starts Monday

I had some tests today which confirmed that I will start with AZT again on Monday. Same again - each day next week, then Monday and Tuesday the next week. After several days of feeling much better and full of beans, I have felt more tired the last three or four days. My blood results showed this, in particular that the neurtrophils had come back down from 2.0 back to being neutropenic at .9 Mind you that is not bad - I could live with the restriction of .5 to .9 indefintlty if I had to So once more into the breach It's not bad - just a pain in the stomach I am gutted that I am not up to going to the funeral of a dear friend whose funeral is a long journey away. So this MDS like many other deseaes does mess with your life.

MDS Patient Support Group

MDS Patient Support Group website

    

If you are an MDS patient of carer in the UK and need help or advice I recommend you contact the MDS Patient Support Group. My wife and I found it very valuable to go along to one of their meetings. They have half day events from time to time and shorter regional ones.

MDS UK Patient Support Group

Tel  +44 20 7733 7558

If you are an MDS patient in Devon, this meeting might be a great one to get to know others and to share experiences.  Ros and I will be going

MDS Patient and Family Regional Meeting in EXETER

Tuesday 11^th October, 2011

Guest speakers:

Dr Hannah Hunter, Haematologist in Plymouth and Sophie Wintrich from the MDS UK Patient Support Group.

Location: Royal Devon & Exeter Hospital

Reception of Yarty Ward, Barrack Road - Exeter EX2 5DW

Starting 6.00pm - Finishing 8.00pm

Refreshments will be served.

  

This meeting is free of charge and open to MDS patients and their guests.  Patients, their families and friends will have the opportunity to participate in an informal discussion regarding their quality-of-life issues living with MDS.  New therapies and treatment options will be discussed.

MDS patients and guests from Plymouth and North Devon will be joining the Exeter group as well.

For registration and more information, please call:

Tania Davidson at the RD&E Hospital on Tel: 01392 402879

Getting out and doing some work

For the past 4 days I have felt a lot better and stronger. It's probably because my Neutrophils have increased from nearly zero up to an outstanding 2.0 !!! I have managed to do lots more around the farm and today we have taken three sheep to the local Kingsbridge Show. I am still being very careful about dust, hay and other ways of catching things. Its also nice being able to have the odd drink and go to the shops - small things that one comes to not even think about can now become something you really look forward to. I have another clinic on Wednesday, and all being well will strait another lot of treatment the following Monday. I have not heard if I have a donor for a transplant yet. Ros is doing very we'll and had a lovely few days holiday in Wales and Bristol. Being so much better has lowered the stress in the family quite a bit.

Second tranche of Azacitadine seems to be very successful

I finished my jabs. The ones on Thursday were not nice as we hit blood vessels and nerves - so it took four goes and left bruises and highly inflamed areas across my stomach. However the evening primrose oil reduced the irritation and redness very nicely. You have to be very philosophical about jabs.

They took my bloods, and my neutrophils were 1.6, which is great. So I was able to go out for a meal with Barbara last night, I can eat salads again, go to the shops, etc.

The other big advantage of the 1.6 reading was that I could come off the daily antibiotics and anti-fungal treatment I have been on while my neutrophils were so low. The anti-fungal stuff tastes horrid and makes you feel nauseous all the time - so I feel a lot better.

No more treatment for three weeks, other than blood tests every Friday

Oh Mr Porter

I went in for an azacitadine jab on Tuesday afternoon. When I logged in with Outpatients I was told that the time had been put back from 2:00 p.m. until 4:00 p.m. Seemingly one of the nurses had rung me, but I did not get the message on my mobile phone until after I was at the hospital. We decided to wait.

All went well when I had the jab. I asked why it had been delayed.
The answer was that a hospital porter had brought it up to the ward, and had left it on a shelf without getting it signed for. The drug must be kept in a fridge, so when it was found some time later it had to be destroyed and a new batch made up. So the cost of that mistake was

• Two hour waste of my time and Barbara's
• Waste of hospital staff time - making it all up again
• Probably several hundred pounds - AZT is not cheap

The last couple of days I have felt very icky, but feel a bit better today

GCSF does its job

Well the good news is that the jab of GCSF did its job and my Neutrophils shot up to .6, which has been my 'norm' for the last 12 months. This means that I restart AZT treatment his afternoon. So I will get azacitadine jabs Thursday, Friday, and Monday through Friday next week.

So back on course, after a delay of 10 days, which is not too bad I guess
You can see on the graphs how the different blood counts varied after the first lot of AZT - shown be the vertical line around 5th August. You can also see the effect of the GCSF on the 9th August on my neutrophils. Click on the graph to zoom in

We had the blood tests down in the outpatient department on floor 6 today, which was very quick. As we had to wait, Barbara and I had a very nice bacon BAP for second breakfast.. (Guess what I have just finished reading again)

OK lets try some GCSF

Given my .neutrophils are at .1 and they need to be at least at .3 before my AZT can restart, what can be done?

Well the Consultants at Derriford and Kings had a chat and decided to give me some GCFS. This is by way of an subcutaneous injection - guess where? Well in the dartboard I used to call a stomach, which is used for all the AZT jabs. I actually do not mind too much as long as I can tell them where to do it.
 
Granulocyte colony-stimulating factor, GCSF stimulates the survival, proliferation,  and function of new neutrophils and mature ones. G-CSF stimulates the bone marrow to release granulocytes and stem cells into the blood, and hopefully up my counts

Ros had GCSF after her stem cell transplant to accelerate the production of her donor cells

If this works, by Thursday, after a blood test, I will have my next lot of AZT - for two days,  a weekend break and then five more days. If not they might try another GCFS jab on Friday and test again on Monday.

Well the good thing is I get to meet lost of nice people in the waiting area and Barbara and I play lots of Scramble (no time limit version) - a word game on the I-Phone

A second week of delays before I can have my second tranche of AZT

Well this is a pain. All my blood counts were fine except my Neutrophils again. They have halved since last week - which is a bit like saying they had gone from nearly zero, to even nearer.

If you look at the graph, then you might expect them negative next week !

So it is wait another week. Have another test. If it goes to .3 then I can start treatment again. I checked with the MDS Specialist nurse in Kings who has done loads of AZT treatments, and she says this often happens, and not to worry.

Meanwhile as I virtually have no immunity the hospital has given my anti-fungal and anti-biotics to take twice a day to stop anything I catch having an adverse effect.

Rosalind gets to Transplant day + 9 months

Ros is feeling fine, and has gone off for a holiday in Dorset for a week. They managed to get a last minute booking (i.e. they booked on Wednesday for the Saturday !)

It turns out that they are the first guests in this lovely cottage, with a swimming pool and tennis court - so they 'fell on their feet' as they say. (Who ever 'they' is)

I do expect a stick of rock when they get back

Next tranche of Azacitadine is delayed a week

I went in to Plymouth Hospital early today for a blood test, and then as long as my nuetrophils were .3 or better I was to have my next tranche of Azacitadine.

Unfortunately they were lower at .2, so I have to be even more careful and wait a week. The Consultant said I had very few Neutrophils, and what I had were not much cop! (I para-phrase slightly)

I also have a nasty rash around my neck due to being out for three hours on Sunday, in cloudy conditions. He thinks it is both a reaction to the Sun through the clouds and to the sun cream (factor 50) that I had put on. I wore a hat for the last hour. This is one of the side effects of Haemochromotosis and other things. So I am monitoring the effect of different creams - what a pain.
So the net effect is

• Go no where with crowds
• Keep out of the sun - or protect with better sun blocking clothes
• Get better sun cream
• Wait a week

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.