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

A quick check up before I start

I popped into Derriford for a consultation and check up. My blood tests were fine, ferritin down to 141 - which is great. They took another pint of blood, which will be the last for a long time, so it will probably bring the level down to around 100 to enable me to have blood transfusions if I need them.

As far as we know I start treatment on Monday - they have just to make sure that the drug that was ordered has actually arrived.

During treatment if I get a fever they will have me in hospital like a shot

My list to take in is:

Thermometer

Antibiotics

Cod liver oil tablets

Pyjamas

Slip on shoes

Change of clothes / day clothes

Laptop + Charger + Vodaphone roving Internet modem

Iphone + Charger + connector

Electric Shaver + Charger (wet shaving not a good idea in case you cut your self)

Wash kit

Toothbrush / paste (Not electric one, as they could cause bleeding)

Wipes and gel

Books

Pad / pens

Playing Cards

Money

Sweets

Lucozade

Moisturiser
Music and videos on iphone

Photo Magazines – I can spend time editing photographs on my PC and improving our family photo album

Pillow

Fruit

I had an extra blood test on Monday that was sent to the Anthony Nolan Trust t see if there might be an unrelated donor available.

Rosalind hits another milestone, and Richard prepares for treatment

Rosalind went to see her consultant in Plymouth today. She was not only told she was doing really well, but they also went on to discuss things like:

• She can go on a plane!
• She can go swimming!
• Having her childhood vaccinations again (Yep- you don't really think about them do you?)
• And even dying her hair - which us lads might not understand but ...

All her tests came back well, but she has to wait for her chimerism test which shows how well the top-ups have worked.

Richard (me) is preparing for his first course of Azacitidine. This will be the first use of Azacitidine in Devon and probably the South West for treating MDS. So there is :

• Having normal blood tests and one last venesection
• Special bood test (again) to send to Anthony Nolan to check for potential unrelated donor
• Getting teeth checked and cleaned (to stop minor infection becoming a threat and because he will not be able to go to the dentist again for a long time)
• Getting new glasses so he can work, read and watch day-time TV (What a thought)
• Preparing very clean rooms away from the 'farming' side of their home
• Starting to stock up on super neurtopoenic food and drink eg pasteurised yogurts, Bottled mineral water with gas, long life orange juice
  
• And getting fitter by walking around the farm
• And keeping motivated and positive
  

Meanwhile we are down sizing the farm, selling animals etc to make recovery manageable.

Richard and Barbara had a great holiday in Iceland and came back relaxed. A few more photos below

The Small Geyser in Southern Iceland

The third largest Waterfall we saw

Hot springs in the evening sun

Stuck in the fog off near the Arctic Circle looking for whales

Holiday before treatment

It looks like I am going to start with Azacitidine on 4th July at Plymouth - still a few loose ends to sort out. So its nice to get away for a few days. On our first full day in Iceland we went up to the top of this fabulous church and took some photos. We wandered around the port of Reykjavik and then had dinner with my son Simon and Sari - who live here. Barbara and I must have walked about 8 or 9 miles - its good to get fit before the treatment starts.

Things move on at a pace

Rosalind went for a check up at Derriford and is fine. They do not want to see her again for 5 weeks, however she will go to Kings in three weeks to see how the top-up is working and possibly have more.

My situation is clarifying fast.

Kings have decided to  start me on azacitidine very soon - probably towards the end of the month. This may be partly done in Kings and / or at Derriford. Its all outpatient stuff - basically a week of daily treatment, then no treatment for three weeks. Repeated for months or even years if it works.

They are also going to start a search for a donor for a potential transplant. This is doubly good news as it means that they think I am fit enough and have the right attitude (critical) to get through a transplant, and if the azacitidine does not work it is my next option.

Meanwhile Derriford are keen to do the outpatient work, and possibly a subsequent transplant, as they are a long way through becoming certified to do so.
Derriford have already taken a blood sample and have just got back from the labs all my tissue type details with which they can check for a match. This will be sent to Kings in the next few days. Its great to see the two Hospitals working closely together. I might finish up being one of the first patients at Derriford to have azacitidine and later even a non-related donor transplant if that all works out. They are also a very good team and I would trust them to do a great job (as well as the team at Kings - which is excellent)

Today I had a blood test and my neutrophils have gone back up to .7, which is great. So Barbara and I can go to Iceland for a ten day holiday starting next week. With our son Simon and Sari who live there, we hope to see the sights, go whale watching and not get caught in a volcanic plume.

Derriford also took another venesection (blood letting) to get my iron content down. It had not come down as much as I expected - but then I did indulge in a nice piece of our beef recently and a leg of out delicious rare breed lamb, with red wine. The consultant said I could indulge a bit, but I guess its back to the safe pork, fish, chicken and vegetarian style regimes.

Meanwhile we are downsizing our flock of sheep from ~ 400 to say 40. So if you know anyone that could give a few a good home let me know. We are also downsizing the herd of pedigree Angus and removing a few other distractions that we do not need while we get through all this.

Ros is now well enough to be helping me, much as we helped her prior to her treatment. This is great for me, and actually is helping her recovery by giving her a real focus. Robert and Simon and the rest of the family are also being very supportive and helpful on planning how we deal with this. Not to mention loads of friends both her and in the States who keep my enthusiasm going.

Richard's MDS progresses

Rosalind and I both went to Kings for blood tests and for the results of our recent bone marrow tests. Barbara came along for moral support, and to help with some shopping later.

Rosalind is fine, they are very pleased with her progress. Good results. However some of her white cells are only 8% being produced from her new donor bone marrow, so they gave her a 77 ml top up of her donor's stem cells. She may have to have that a couple of times more.

I was less lucky. My Neutrophils that had gone up over 1 (ie not neutropenic) have gone back down to .53 - which is not good. And my blasts which had gone up to 8% have now gone up to 10% - which is not good. This means that I will probably have to start some form of treatment in a few weeks.

The options are

• Azacitadine - which can give full remission to some patients, or prepare them for  a transplant
• Another chemotherapy drug - which they would use to knock the blasts down every few months until it did not work
• Or a close match bone marrow transplant

So we are looking at all options - there are high risk with all of them. So I am basically at the same point that Rosalind was about a year ago, with the added two issues of being much older and having haemochromotosis (and I will have to get my iron level down even more before treatments of other kinds in case I need blood transfusions - which would add further iron into my system)

So watch this space.

Meanwhile we are looking at options of where the treatment could happen, how to run the farm when neither of us is there, etc. I will also improve my fitness, keep my (poor) sense of humour and carry on doing as much as I can.

Blood result trends

Both of us are being treated in both London and Plymouth hospitals. So one thing I find useful is to record and plot my blood results. That way if I go for an appointment and they do not know my recent trends, I can just show them

So the three most important trends I have are
1. Blasts from bone marrow biopsy - these have been below 4 and the last time were 8 - which is not good - not enough to grpah yet (And I would like a straight line at 8, or even going back to 4 :-) )
2. Ferritin- iron levels
3. Neurophils
So here they are - click on it to see the image bigger

The good things are my ferritin level is coming back down to normal following lots of blood letting, and my I have gone above 1.0 on Neutrophils, so can relax a little about catching things for a while. I even had some Stilton Cheese the other day, which is not recommended if you are neutropenic

Double Haircut

We both had bone marrow biopsies on Wednesday – results in three weeks. Our blood tests were fine, and mine showed a big (for me) improvement in Neutrophils as I am no longer neutropenic for a while – I have gone above 1.0 to 1.36 – which is great. My red cells are taking a bit of a hammer, due to relatively frequent Venesections to get my ferritin low enough to enable me to have blood transfusion if I need them. So it’s basically getting rid of my iron filled blood, so I can have someone else’s later!

Rosalind's hair has grown back so well that she decided to have it cut. It is not long, but bits were different lengths, etc. so a trim was called for.

I had mine done at the same time – and decided to get used to short hair, as I may need treatment this year and will probably lose my hair then.

Precautions in everyday things

Things that have become second nature now include careful selection of food that we eat, very frequent washing of hands, cleaning anything we do not trust with antibiotic wipes - e.g. handles on supermarket trolleys.

Rosalind and the family had a lovely few days holiday including going to the zoo near their hotel in Hampshire. We really think the short hair suits her.

Lambing has poised some new challenges this year for Barbara and me. With a low neutrophil count I have to be very careful with dust, straw, fluids from animals, animals with diseases, etc. This means a few things I just do not do at all if others are around. Otherwise I do them with protective clothing, and the rest I just get on with and strip wash and wash my clothes later (in that order). At the end of  the day if a ewe needs to be lambed at 3:00 a.m. and the weak lambing needs care and attention then I just get on with it.

I remember when I first met Prof Mufti and he said 'You know we do treat farmers as well!'  At this time of the year we are like a very busy maternity ward.

Oh and we started calving a few days ago.

And we had a School Party around a couple od days ago to show them all about 'where their food comes from' and help with lambing

We are both going through a period of being quite well

I am busy lambing on the farm, which is 7 x 24, so I do need the odd extra lie down

Ros is even planning a weekend away with her family, and can face meals in restaurants - which if you have read about the problems of eating after chemo or a transplant you will fully understand

We both have bone marrow tests at the start of May - so fingers crossed that Ros's marrow is more of her donors and that I have not progressed further

How you can help patients with MDS or Leukaemia

As you know from reading this blog, Richard and his daughter both have a rare disease called Myelodysplastic Syndrome MDS.Rosalind has had two bouts of chemo in hospital and an unrelated donor transplant of bone marrow, and is doing OK. Richard has that to come if he can get a donor.

The only cure for this blood disorder and often for leukaemia is to have a bone marrow transplant. To have a transplant you need:

• A donor of matching bone marrow, also called stem cells
• Matching blood for transfusions
• Matching platelets - a special type of blood cell which is critical for clotting blood
• A lot of care, drugs and luck

Can you and your friends and family help? In most cases you can by being a donor. 

Giving blood and platelets can normally be organised easily at a hospital near you - ask you GP.

The Anthony Nolan Trust can advise you on whether you can be a bone marrow (stem cell) donor and how to go about it. The Anthony Nolan trust can send you a small container, you 'spit' into it, and send it back - this can be used to see if you match someone to be a potential bone marrow donor - nothing could be easier. Giving the bone marrow is done these days by filtering your blood - so is not as intrusive as it used to be.

In the USE try the National Marrow Donor Program

Please click here to save a life. It may not be ours, but ...

The MDS UK Patient Support group is excellent. To help the UK MDS support group click here If you live in the USA and want the MDS Foundation there  click here
 
To give funds to the MDS charity without it costing you a penny while you are shopping online, click here, set up an account and nominate MDS UK Patient Forum as your charity of choice. How it works etc is shown on this web site.  Or you could support your own favorite Cancer charity through this facility

Rosalind has a top up

This week I took Rosalind up to Kings in London. After tests and review by a couple of consultants they decided to give Ros the long awaited 'bone marrow top up'. This is more stem cells from the original donor, which had been kept on ice.
At the duly appointed hour a huge liquid nitrogen container arrived in outpatients. Ros had two injections up her temporary line to guard against infections and rejections. Then the transplant was removed from the liquid nitrogen, warned up in a special bath and then this 'transfusion' was given her. What was amazing was that it was only 10 mls - it hardly went half way down the tube! The nurse had to put a lot of saline mixture in afterwards to force it in.

Yes that is all of it in the picture!!. We met a lady who had a had a transplant a few days before Ros, and she had happily had two 'top-ups'.

We soon finished and wandered around John Lewis for a while, buying birthday presents for Isabel.