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.

A happy day

On 19th of March the family all met up at the house and then went off to dinner at a local restaurant. I had become and 'old age pensioner' (65 years old a few days earlier) so it was a nice time to relax on a lovely day in South Devon

The kids had a lovely time running around the grounds

all very confusing

At Kings they did not, in the end, do a top up stem cell infusion for Rosalind.
They had found that her white cells were increasing very well, and on detailed examination were from her new bone marrow - which is very good.

Her red cells are still low, and they seem to be mainly from her old bone marrow - rejuvenated a bit. They also have a high iron (ferritin) level much higher than mine - 2000. This high level will be OK for a while, after which they can get it down with the normal well trained leeches!


So they have taken more tests, lowered the use of certain drugs that could be inhibiting the new bone marrow and red cell production a bit and will see again in tow weeks

So overall it is good news

Ros and her mum then spent a few hours in London before coming home. It was nice as they met up with Ros's brother Simon and girl friend Sari and all came back down on the train together

Perecentage of Donor Bone Marrow

A few weeks after her transplant Roz's new bone marrow was 58% of the whole. The second bone marrow test showed it had gone down to 52%, so ten days ago King's did a special blood test that showed the % was now done to 20%.

As a result Kings will do a bone marrow top up from the original donor next Wednesday. Kings have enough on ice to do up to 6 top ups, and seemingly it is quite common.

It is just like having a blood transfusion and only take an hour or so as an outpatient.

So Barbara will take Ros down next week

Barbara and I went to a funeral of a good friend who died at 48years old after 7 years fighting a brain tumour - which came back. He leaves a wife and son aged 17.

Apart from that we are all feeling fine and realively up beat

What a bugger

Well the bad news is that my (Richard's) MDS has progressed - which is the technical term for got worse. My blasts have gone from normal (2%) to 8%. Between 5% and 10% is called RAEB-1 (refractory anaemia with excess blasts-1). This is what Ros had originally over a year ago - it then progressed to RAEB 2 which is between 10% and 20%. If it goes >20%, then you have leukaemia as well)

The situation for me is therefore to have bone marrow tests more frequently and monitor that and my blood tests more carefully - watch and wait
In addition as my iron level (ferritin level) is in the 400 region, which they had stabilised me at deliberately, they will now try and get it down closer to 50 (proper normal). The reason for this is that any drugs, chemo, transplant or other treatment they might give me in the future may well involve a series of blood transfusions. Each transfusion would automatically give me iron from someone else. Many MDS and leukaemia patients have an excess iron problem purely from too many transfusion - a ferritin level over 1500 or so can effect your heart, lungs or other major organs. So they immediately whisked me off for more blood letting. We are going to ask them if there is another way of getting my ferritin level down, as although this way is easy it does put extra strain on my poorly bone marrow as it repalces the blood - and just maybe that is what has triggered the 'blast'-ed problem.

The good news for me is that my iron level is good and since I had an infected tooth removed my blood results have got better, and I feel a lot better - less fatigue etc. Weird ain't it? Anyway I shall move forward with this new situation with a postive attitude.

Roz

The good news for Roz is that she is eating really well and they think things are going well, and they have the balance of treatment fine. Her blood results are good. They have taken a set of special blood tests to check how well her new bone marrow is doing - results in a couple of weeks

Ros was discharged and spent the weekend at the farm

A nice quiet weekend. She was eating better, drinking normally and all symptoms seemed to have gone away - other than being very weak.

Frogspawn in the moat

Starting to make some progress again

Six days after she went in the Doctors from Kings and Derriford think they know what is wrong. It is not any form of infection (extensive tests, and repeats, being negative), but they believe it is a side effect of some mild rejection of the bone marrow transplant (graft Vs host desease). This is to be expected and 'a but of it is good' as it proves things are working well.

She also has her bone marrow biopsy test results which where emailed from Kings. A month ago they showed that her new bone marrow was 58% of all the marrow (the rest being her old stuff coming back) They had hoped that the new stuff would have risen to the mid 80% by now, instead it has gone down a tad to 52%. So she will go with me to Kings on Tuesday / Wednesday and they will probably give her a top up of the transplant - this will only take an hour and not require chemo etc.


They let her out of Derriford Hospital yesterday for a few hours - change of scenery, bath, see the kids and a meal. She went back in at 9:00 p.m. Today they have done the same thing - which is nice for her. It also means that she has to do some exercise walking to the car, which she needs as she is very weak from not eating and losing too much from the other end

She is looking a lot better than earlier in the week, eating and drinking better, and was feeling 'locked in' where she was. We take her back in later this evening.
The kids are not getting much of a week - their half term. But this morning Barbara and I took some school children around the farm, seeing chickens, goats, cattle, sheep, a hare, a buzzard, lots of things we grow, and then we cooked some potatoes and meat for their lunch. The children came with them and had a lovely time. They both got a new computer game a couple of days ago - so all was not too bad

Ros is still not well

She came in on Saturday, and they still have not found out what is wrong with her. They have taken loads of tests. She is not eating, drinking a bit, is having hydration through a drip, and is being sick and having diarrhoea
The worrying thing is that last night, after days of multiple antibiotics intravenously, she got a temperature of 38.9C - which is not good.
We are going to ask them to liaise with Kings, in case they have any ideas

Picture Taken Sunday when on Oxygen

Her blood test results seem fine though. She was only on oxygen for half a day earlier in the week. Yesterday she was a lot better in her self - drinking a lot more, including high energy drinks. She should have the results of her bone marrow test, taken three weeks ago, by next Tuesday when we were both due to go up by train to Kings. I think that will be post phoned or done by video link if they can do their end

It would be nice if she could come out of isolation and go and see the new art display in the hospital

Roz is back in hospital

Roz is now over 100 days after transplant and was doing really well. She came down with a low grade tummy upset, then sickness and diahorria and eventually with a high temperature.
So last night she was admitted, and put on intravenous antibiotics, rehydration, ... , and now oxygen

She expects to be in for two or three days, all being well.
The kids are on half term, so they will probably come back to the farm until Roz feels very much better - she could not cope at home with Steve working


I had to have a tooth out this week, and thought I might be admitted. The simple extract turned out to be 1 1/2 hour ordeal with two dentists, followed by a £100 parking fine for over running my ticket. Luckily the heavy duty antibiotics they gave me before and after seem to stop infection

Done frommy Iphone

Day 98 - The Hickman line comes out

Last week Roz and I had our bone marrow tests. Afterwards we did some shopping in London and had lunch and afternoon tea in John Lewis. That is the first time Roz has been able to have a meal out - given the smell of which had been making her nauseous. It was a very long and tiring day, as we had reserved 4 hours in case she needed any treatment - which she did not need

Yesterday Roz went to the consultant in Plymouth and she said that Roz need only come to clinics every two weeks, instead of every week.


She still needs regular blood tests just in case the  CMV comes back and to monitor rejection

Both hospitals agree that the Hickman line can come out - so that is coming out today. Another major milestone, which will remove another potential source of infection. It does however mean that blood tests etc will need a needle in her, like normal folk.

Our friends from the States left today after we all had had a great time - even though the weather was awful. We took them to see Roz and the family at the weekend. We had a lovely lunch in Tavistock, and then after a bit of shopping had afternoon tea in the Bedford hotel. Lois had to check out the 'Candy shop' for her daughter back in the States - seen her getting help from Isabel. Then we played with the kids and chatted back home.

Roz still needs a lot of help, so Steve's mum has been down all week - which is a big help


Roz's son has met the Doctor and has a blood test - waiting results. He seems a lot happier.

I am still much the same - except I keep getting Gout, which is very painful, and the painkillers that deal with it inhibit white blood cell production !! I also broke a tooth which needs extraction - but the doctors think I can manage that, even with neutrophils at .6.

A major milestone for Rosalind

Last week was a major milestone. Roz was going anemic and the doctors thought she needed a blood transfusion, but they took a considered view and did not give her it. The reason was that last week was when Roz came off the anti-rejection drugs. These suppress the Bone Marrow production. She has also gone to a much reduced level of the anti-viral tablets - which also suppress the bone marrow. So the thought was that her new bone marrow should be given a chance.

It has done well, and she has not needed the transfusion - and is looking well.

However, this is a time to be very wary, as host Vs graft (or vice versa) disease can appear and need to be managed. So yesterday and today when she got a mild dose of diarrhoea she immediately rang both hospitals to check - they both agreed to not worry and test her tomorrow - Wednesday

So tomorrow Roz and I both have scheduled bone marrow biopsies, blood tests, and Roz meets the consultant at Kings. We arrived at Robert and Jessica's a couple of hours ago, had a nice meal and chat. They got engaged at Christmas - the whole family is delighted.

The photo below was taken a few days ago in Roz's local town of Tavistock, when we all went to do a few hours shopping

Tomorrow is also a good day, as very old (in the sense of know them a long time ) and dear friends of ours from San Francisco are coming to stay with us for 10 days or so. Our first visitors besides immediate family for a year - and we hope to get a few days off as holiday

Tip of the day

Yesterday and today were a bit weird, as Ros went into Derriford yesterday morning for a blood test and I went in after lunch to get formally put on their books.

As you might expect I took all my blood and bone marrow test results in to help speed them up. They decided to give me a venesection - blood letting again, which did not happen for 4 1/2 hours - at which time the male nurse, who was getting tired as they were short staffed, failed to get any blood out twice - which is very painful.
Today I had to come back in before lunch and try again - a female nurse, as it happened, had a go at the venesection which worked first time. The male nurse was stood next to us. We figured out what the problem was - during the whole 4 1/2 hours I was in yesterday, I had not had a drink, my veins would contract, they would be hard to find, no blood, …
So the tip from the lady nurse was:
 

• 'If you are having blood taken for any reason, have a lot to drink during the couple of hours before. Say a big bottle of squash or something
• That way your veins pop up and it’s much easy, and less painful.

Then Ros was in during the afternoon to see the consultant - her haemoglobin is down, and she is on the border line of being neutropenic so may need a blood transfusion next week. The trouble is, if you give too much blood, the bone marrow gets lazy and does not do its job. She was able to reduce one of the nastier tablets again today - so that will help.

Ros's son is worried that he might have something wrong with him - so a strategy was devised where the GP can put his mind at rest, or even take a blood test to show him that he is OK. He is a smart lad and heard about hereditary problems and put 2 and 2 together.

We are both feeling fine, other than the tiredness you get with these issues, and after all that we did not even meet up for a coffee.

Day 67 - Things are getting better

On Saturday Roz drove her mini for the first time since she had her Hickman line put in some months ago. She was then able to drive herself to the Hospital on Monday where they took more tests and had no need to do any changes - which was good.

Today she went back in, met up with Hanna a senior consultant who said that her CMV had been negative the past two blood tests, so they could reduce the 'pink' tablets - these are very very strong anti-virals that combat the CVM, but also dramatically slow down the bone marrow.
Today she also had been told to further reduce her tablets that counter rejection of the transplant. Both of these are great steps forward, although it might bring on a form of host Vs graft (or vice versa) side effects, which the Doctors want a bit of for some reason.

So a very good day. She sounded very bright and cheerful. Steve's mum is down to help, and its Ros' birthday tomorrow - so we hope to all go over for dinner at her place

The only down side to the day is that Josh, my lovely sheep dog who was run over before Christmas and has already had two operations to put his hip bone back in its socket, was X-Rayed and showed that he has to have it put back in and wired in for a third time tomorrow - he is not a happy dog, and lots of general anesthetics are no good for dogs.

(The photo is a library shot of the hospital)

Transplant reunion

Dad and I spent the whole day in Kings College hospital yesterday. It was packed.

You must make the effort to talk to people in the waiting rooms. Everyone sits there looking gloomy. We always try to chat to anyone and everyone. Lots of patient have good news to tell, and by sharing it amongst the Outpatient  'family' (other patients, nurses. admin, doctors that you have all met lots of time) it can help pass the time, lift your spirits, and make you feel that it is not just you. We all become too self aware, and pre-occupied with ourselves. There is real hope out there and the team does its best to make you feel at ease and be positive.

It can be much harder for the younger patients,  as they always seem more upset, nervous etc. This is understandable as they should have a long life to look forward to and diseases like ours can change this potential. And in fact they have far better chances of recovery than older people. So do spend extra time with them.

I am doing really really well. That is what the Doctors and nurses who know me say. I am starting to come off some of the horrid tablets. I am able to do more each day and I am generally feeling more and more normal but I am aware I still have a long way to go.

Even with the Hickman line in, I think I will have a go at driving the Mini soon. Yesterday we sat in a cab in London with the strap over it and it felt fine.

I had a bone marrow biopsy, blood tests, and two lots of blood that took all day, so in the afternoon we watched a movie on Dad's computer with earphones on.

Dad is doing well too - no worsening off his figures. We watched another film on the train back home. We were both really tired by the time we got picked up from the train but very positive.

A tip on taking tablets or liquid medicines that taste horrid. The Doctor suggested a sip or two of Coke. I tried a bit of juicy strawberry, which worked well too!

Love

Roz