Tenth course seems to be going fine now

The doctors decided to only give me a half dose as my Neutrophils were so low, compared to in recent months. The first three jabs were fine. Four to go next week. Yesterday they checked my Neutrophils, and the good news is that they have now gone up to 1.7. So the numbers went .5, .4, .8, .9 and now 1.7. All a bit wuierd, but in the right direction and back up into the range it was in during courses 6 though 8.

A blip with my Azacitadine

I should have started my tenth course of AZT 10 days ago but my Neutrophils insisted on a trip to the basement, going down to .4 or so. All these results are plus or minus a bit, but a graph shows the trend very well

At this stage of the treatment they would want me on stable minimum of around 1.0

Well today they have got up to .9 so that is near enough. (when I first had it the treatment then .6 was OK - its the average over a period of months). So I had half the dose, so only one injection. I tried gentling ribbing some evening primrose oil over the spot and other other rashes I had - and it reduce the redness and itchiness a lot. (When I had done this before I waited for 12 hours before I did it - a paper I read said do i straight away)

The consultant in Plymouth kindly rang the consultant in Kings, London - probably to discuss both Roz and myself. Between them they have decided to carry on with the 10 th course of AZT, but to halve the amount I get. This is probably because you can get a toxic effect which forces your Neutrophils to go down more than normal, which is a bit odd after 9 months of it. After that I will get another bone marrow aspirate / biopsy so that they can have a good look at the impact.

My last bone marrow biopsy showed that blasts were normal and that the AZT was doing its job. All very weird.

In 12 days I will then go back to Kings for a clinic and will discuss these strange effects and see if their wider experience, when they did several years of trials of AZT, can cast light on it.

At least the AZT seems to work for me, mostly, and for a few of my fellow patients. On the other hand, I also know one patient who could take the treatment and its side effects, but it was not working. And another who kept being violently sick so had to come off it again very quickly.

 Roz seems to be doing fine and is working with a friend all day today doing some ceramics

Topup for Roz and 10th cycle delayed for Richard

Rosalind at Kings 3rd April 2012

Rosalind had blood tests, which were fine, followed by her 5th DLI (top-up of stem cells from her donor). This time they upped the dosage to 132 mls. They said the dose was double the last time to help stabilise the lymphocytes. She may get a graft Vs host reaction from 10 days to 40 days after and has been warned to check for rashes and other symptoms carefully. (Since then she has had rashes on her stomach which look like the reaction expected)

We were lucky to get an impromptu clinic with a new consultant. He has been there since the early Autumn 2011and seems very knowledgeable.    Kings have had a lot of staff changes this year, which you would expect with a teaching hospital that does research.  Kings will check how much stem cells they have left, and if necessary ask for more.

Any further childhood vaccinations will be delayed until Rosalind's system has stabilised to to the required level. She has just had her first lot again - MMR

She is to carry on with all the drugs. She may well stay on the antibiotics for the rest of her life, and the aciclovir for many years. If she wants, she can stop the folic acid.

She should go to Kings on 22 nd May for a bone marrow and a chimerism test, followed by clinic.

We have also dropped a not to Prof mufti to remind him about doing some more hereditary tests.

Richard - should have been starting 10th Cycle of AZT

My bone marrow samples have arrived at Kings, and I have a clinic at Kings on 23rd April.

At my last clinic my neutrophils were going down. My10th course of AZT was delayed 8 days, to today, because of Easter - no pharmacists on over holidays unless for emergencies. Blood tests today showed my neutrophils had plummeted to .5, which means they have to recover before another cycle. We believe I should now have some GCFS to promote neutrophil growth and then start with my next session next Monday. The registrar thinks I should wait to next Monday to make that decision - which puts me at over 6 weeks before cycles which the prof does not like. So we are in negotiation to ensure the right thing is done

Here you can see my neutrophil results over the past 6 cycles. Each dip is when I have treatment. The big jump was an anomaly due to having flu for a few days and neutrophil production went into over drive. If you ignore that jump then I should hit zero next week! Hence my 'negotiation'

Month 9 - another milestone

After my ninth course of azacitadine, just started, I will have a bone marrow test. If that is OK they may be able to lower my dose and / or extend the time between treatments by 1 or 2 weeks. At the moment the consultant is amazed that all my blood counts and other measurable things from blood tests are well into the normal range On the other hand the side effects of the chemo the last couple of days have been a pain in the gut, elbow and across my stomach. But I have been able to do loads of work on the farm, we are lambing, and design and implement a new web site for a neighbour Roz is doing fine. She is waiting for a chimerism test to see how her donor cells are doing on one of her blood types

Some tips about managing Azacitadine

I have been taking AZT for 8 months. I have just completed my last session and it went very well. I am now able to do work outside and do other things even while having the treatment - which is great. There are now another 4 patients are into month one or two having AZT in Plymouth, so there has been much discussion on what can help.

I understand that around 30% of people that have it react well to it, and others cannot get on with it. Normal side effects are rashes which can be awful I am told, itches, can effect your liver etc. It is like many other chemos in that respect. The other side effects are to the Ondonsatron  anti-sickness tablets you can get - which can cause things like intense constipation, and to the anti-histamine tablets you might need to keep the rashes down - which cause you to feel very tired.

The first two months I felt pretty awful with it, but I recovered just before my next bought. Since then it has been easier each time. I guess my body is getting used to it.

OK lets look at the rashes. My Professor told me if you can put up with it then the benefits can be very good. I have met a patient that had to give up having AZT as the rashes were just too much for her.

What I have learned is that there are lots of things that may help but you have to keep trying different ones as sometimes they work, and sometimes they do not - weird.

Antihistamine tablets - the one a day ones - are good for me. There are several that you can be given - try them about and see which works for you under direction from your Doctor (which applies to all of these)

Steroids. In really sever cases they can prescribe steroid cream - but my Doctors advised me to keep off them if at all possible, as you might more easily catch a skin infection, which is not good. I had one, and was on antibiotics and anti fungals for 10 days.

Creams and potions

To soothe

Evening primrose oil - pierce the capsules and rub on gently. (I have stopped using them for the moment)

To hydrate the skin and reducing the itchiness

E45 - I also use this on areas like legs to re-hydrate before it gets rashes

Calamine lotion

Witch Hazel - advised by a fellow patient - I have not tried it

If you are worried about getting skin infections try using

Allergenics non steroidal cream

Sudacream antiseptic 

Germoline

And tell your doctor anyway ASAP

General Cleanliness

Antibacterial hand wash with hydrating components, stops your skin getting too dry.

Other things

The Ondonsatron anti sickness tablets were prescribed twice a day. I now only take them once a day before the AZT injections, and this has dramatically reduced the side effects of this medication.

I try and get exercise every day - sufficient to push my heart. I am sure that helps. So take the stairs instead of the lifts, is a good start. Dogs need walking. Hills need climbing. ...

Not every thing will work for every body. These are just my findings.

Double Good News

An update on Rosalind
As mentioned before Roz's transplant was a success and she is now well over one year afterwards. She has had one prolonged issue - all but one type of blood cell has been 100% from her donor - which is great. The other type, CD3 lymphocytes, has been up and down. This has now had several chimerism blood tests in a row which has shown the percentage of donor cells taking over - and has gone from ~20% to 47% and now up to 69% donor. We are still waiting for the results of her latest bone marrow tests.
What this means is that the likelihood of having to have a bout of chemo and another top-up is very very low..
All being well she has been told that she may not need another topup.

In addition, Roz has just got some adult teaching work nearby for adult art work - felting initially. So she is very pleased.

An update on Richard
I have recovered better from my chemo than this time than all previous 6 bouts. For example I have a blood test on the Friday following the Tuesday of the last injection. In the past my nutrophils are then typically well below .5 - i.e. very nutroponic. This then means I have to be especially careful about catching things for another week or so when the count has gone back over 1. This time the nutrophil count was already over 1. I also feel a lot better and with more energy - so I have been doing a lot more work on the farm and other things. I even passed my mini digger test - I passed originally over 5 years ago and this was a retest. I use the digger on the farm to keep tracks clear, dig drainage channels, prepare before fencing contractors put posts up, cast up after hedge laying etc. Its one of the jobs I can still do, as it does not involve hay and straw dust, and can be done from the cab in damp weather that keeps normal dust levels down

A Happy and Healthy year to you all

We had a lovely Christmas break. The whole family came to our place, and Roz and I were in good enough state to have a great time, eat lots and even have a few drinks - although niether of us can drink very much these days. So the trick is to drink a little of something VERY nice.

Then Roz had us and a few of her close friends around for New Year, when there was much sillyness on the WII - and again much food, drink and laughter

I had clinic last week, and got the go ahead for another course starting today.

It was very amusing. Roz had to go in for a bone marrow biopsy and chemerism blood test, and I had to start my AZT chemo after another blood test - as this week they will carefully monitor my liver, which can be hit hard by AZT. We were two out of the total number of five patients they had in the ward during the whole afternoon - it is normally heaving, with long delays. Several of the NHS staff had not realised this father / daughter link, and being treated simultaneously for the same thing is very weird even for these hardened (but lovely) professionals

On the bad side - we found out today from her mum that a young patient that we got to know very well is losing her battle. Roz and I have a lot to be grateful for.

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