A bit more normallity - scary but gooood

As we are both feeling so much better, we are able to take on a few more things. The current project is to try and get our self catering cottage up to speed. Having had to close both cottages three years ago when we were diagnosed with MDS, we have started marketing just one of them - Swallow Cottage.

In the past three years the Internet has changed a lot. I can do simple blogs and full screen websites. But now I find for modern marketing you have to master Facebook, Twitter, smart phone based web design, and the latest ways of getting Google to notice you. Luckily Roz has been using Facebook for a few months, so she is managing the cottage Facebook site. And I am getting some help from friends on the rest.

Tomorrow we are reloading the names and addresses of previous guests for a mail shot.

Our first guests since we reopened are coming in a week, so we also have some last things to do for that. We had the AA rate the cottage as **** but we were told to put in an LED TV and docking station for smart phones! My, how things have changed.

In addition Roz and her friend are trying to organise some dates to run felt making, jewellery or even ceramics workshops here on the farm.

Getting back to doing more is great, but a little scary at times. We get brought back down to Earth when we have clinics, or I have my 5 weekly bout of chemo. My 18 th bout finished last Tuesday and was the least problematical, touch wood, so hopefully they we will stay like that.

How many people are following this Blog?

I have often been asked how many people are following this Blog?

Well I am not to sure but here are the stats

17 formal followers
12537 views in the past three years
468 in the past month

I am pleased that as well as family and friends, there are lots of patients and carers who have found the Blog useful, some of whom I know personally now. Ros and I always mainly wanted to do this to help others. Please use the comment facility against Blog entries to add further value for the benefit of others.

You can get new post by email by filling in your email address top right of the full site blog

Keep  cheerful and healthy
Richard

18 sessions and counting

Two more days and I will have completed 18 cycles of Azacitadine at 4 or now 5 weekly intervals. I feel well and am working hard each day, except for the 4 or 5 hours after the chemo.

After the 17 th bout I got a rash. They treated it as a fungal issue, but later we tried anti- bacterial treatment which seems to have cleared it up.

Ros is fine physically, and is flat out with the kids etc.

A Happy and Healthy New Year to you all

Getting Insurance when you have MDS or similar

Getting Insurance when you have MDS or similar can be very hard. I asked Sophie via the MDS Patient Support group (http://mdspatientsupport.org.uk) , and she put me on to their Forum on 'travel topics' http://mdspatientsupport.org.uk/forum/

I have just got insurance via Freedom Insurance, Cambridge - for £236 for my wife and I for a week to Estonia - to see our son who lectures in philosophy out there. (Well someone has to )
For just the medical stuff the insurance cover would have been £197 for both of us, but the one we got also covers hotel issues, flight issues, volcanoes the lot: . This is not cheap, but there is no ambiguity of cover on either of us should there be a problem.

My wife was diagnosed with a very very mild heart problem 4 years ago - she has had no treatment, but it has to be declared. So not really a problem.

I was diagnosed with MDS RAEB II originally. My blasts got to over 10, before they put me on Azacitadine. I have been on that for 14 months, and have responded very well. My blasts now are <.5, white cells 4.4, Haemoglobin 15, Platelets 133. I have never had blood transfusions or inpatient stay. So this is a text book response best case for Azacitadine so Prof Mufti says. I am now on half dose Azacitadine, for only 5 days (it was 7), and only every 5 weeks (it was 4 weekly)

The lady in Freedom Insurance seemed very clued in, she asked intelligent questions as well as pulling up the scripted ones. She had to check with a superior about the idea of using chemo to just keep things contained for MDS, which he understood and agreed the cover

Freedom Insurance company seemed a lot more knowledgeable than Columbus, who I tried. Their script did not seem to work for what I have, and the fact that I am in remission did not figure – they declined me any insurance for the MDS aspect.
I tried to get through to World First Travel, but their computer was out of action.

I hope this helps other patients

No news has been Good News

Roz has been very well and has been running various craft workshops for adults and children. The next one is making all sorts of different Christmas Decorations - I really like these life-like Christmas Puddings

I have been very well and have continued to respond to the 5 weekly treatment. I have to watch out for anything vaguely sinister on my skin, and a consultant will cut out one mole like thing that was not going away when treated with liquid Nitrogen several times.
We got our new bull last week, and had thirty gentlemen around for breakfast on the farm on Saturday - we raised money for the local Church and for the new Cancer Ward in Plymouth

My wife and I are going to Estonia after my next treatment - its a pain having to get insurance when you have Cancer. But the MDS Patient group can help with a list of companies

Progess is good

Roz is well and waiting for her twice monthly results. She is trying to setup a whole series of craft workshops to bring in a bit of dosh and get her slowly back to part time work.

I am very well. I had another two lots of chemo since the wedding. I seem to recover quicker each time, with my blood counts not even going down during. I can even work in the mornings after each jab, but still feel crap in the afternoon and over night. So my local consultant, a lovely lady, has extended the time between treatments from 4 to 5 weeks. So a bit more time for 'a life'.

We went on holiday and have been to various events - see photos below

Helping at the Kingsbridge Show

Slimbridge wildlife center

Gloucester

Docks at Gloucester

Selecting a bull at Adam Hensons Cotswold Farm Park

Costwold wild life park

Harvest, then a wedding, more Azacidadine, then a Holiday

Roz
She got more results which showed her donor had gone back up to 95% so we have all relaxed again. She looks great, feels well, and apart from getting very tired from time to time, she is doing very well

Richard
My recover from the 12th course of Azacitadine was very quick. A few days later I did 12 hour days harvesting hay on a JCB / tractor for 6 days. Yes i was very tired afterwards, but I was delighted as I could not have done that last year, or the year before.
Then we prepared for my son's wedding - the farm looked great, the weather was kind to us and they had a wonderful wedding with 60 + guests staying all weekend. This was an enormous undertaking.  We got lots of help from the family, including Roz. The lesson is - that even if you have severe problems, with a will, and adrenaline, you can do more than you think.

Immediately after the wedding I had my 13 th course, which went well ( just the usual nausea and feeling rubbish for the 12 hours after each injection. )

Now my wife and I are looking forward to 6 days of proper holiday in the Gloucester area in a couple of nice hotels

One year of Azacitadine over. Unrelated donor transplants soon to be available in Plymouth

I have just had my clinic after 12 courses of chemo. My counts are all very good, so I start year two next Monday with a half dose for 5 days. The consultant is very very pleased with my reaction to the treatment. I can now work a pretty normal day. Eg two days ago I drove for 5 hours with a trailer on the back while bringing a borrowed rare breed bull back to the farm for a year. OK I was very tired afterwards! Then I will delay for 5 weeks before my next course, as my son is getting married and I did not want to feel grotty from chemo on his wedding day. Roz is still doing very well, although her 96% donor : her old bone marrow ratio had dropped back to 91%. Naturally these ups and downs make you feel very concerned, although we have to remember that all these tests have a + / - percentage. So the same test taken a few minutes later could give slightly different results. Partly this is due to the sample taken, and part to the type of test. Ratios done from the bone marrow are far more accurate than from blood - but of course far more traumatic to have taken. Good news The Plymouth Hospital has just recived confirmed funding and immediate go ahead to create a state of the art new ward so that they can, for the first time, do unrelated bone marrow transplants. This is fantastic news for patients in Devon and Cornwall who often have to travel hundreds of miles to a suitable facility. The new ward should be open later this year

Its nice to be 'normal' for a while

Roz is doing all sorts of things with the family, teaching felting and providing entertainment at children's party by running short fun art workshops for the children, where they all take what they made home.

I felt so much better last week that I was actually able to do some hard work for many hours on the farm. We were making silage (wrapped grass) and I had to use a digger to level off a large area to stack them one day. Then we baled the silage and I used a JCB telehandler and tractor driven wrapper to wrap and stack the bales. Good fun for the first three hours, then it gets you back. When the sun came out properly just before sunset we were still at it, by which time I had to wear a mask for the dust and my silly hat with 50 block sun protection flaps. But that was no problem.

A couple of weeks ago the hat again came in handy when we showed sheep at the Devon County Show. We were pleased to win champion in our class, and be judged by Adam Henson. (last year I was too ill to show)

I am on the right with the champion sheep called Apollo. My friend Susana is with Hilary's top ewe, which was reserve champion. A close contest. Both are rare primitive horned sheep called Manx Loaghtan.

Adam chatting before he judged our group

We also celebrated the Jubilee at varous local events.
We both feel that we are much better at coping if we do as much as we can, without over doing it.

11th Azacitadine dose complete OK

That was much better - half dose is a lot easier on me. And for only 5 days instead of 7 is nice.
I have even been able to do some outdoor physical work on the mornings of treatment.
The nurses got extra training on how to give the drug, and told me to make sure that was how it was done in future
Basically

• Mix this very thick drug for several minutes
• Apply at 45 degrees to the skin - normally the stomach
• And take 60 seconds plus to put it in
• If it does not go - it can sorta clog up - use another needle and try again elsewhere 

I have switched from the anti sickness pill called Ondansatron to another which has less side effects. I can do that as my body has really got used to the Azazitadine .

I have been very lucky with side effects. Fellow patients some times get bad nausea, need extra blood, saline mix if they cannot drink enough or other treatment. But they all keep their spirits up - which helps a lot.

Roz gets some great news

She went to Kings to see the post transplant consultant and was told that her results are now very very good. She still has a lowish CDM percentage, but everything else is excellent. In particular her overall percentage of blood that comes from her donor has risen to 96% - which is time to relax a bit. It has gradually been creeping up over the past six months

She had a bone marrow biopsy and aspiate, and will have that checked out in a few weeks.

But they now expect her to just switch to a monitoring phase

She was thrilled

Azacitadine dose gets reduced to half

Dr Kulasekararaj at Kings has written up about new research on MDS

The Prof and another consultant were very pleased with my results and the trends, I am responding very very well so far. The particularly liked the fact that I had not had to be supported by GCSF (besides once at the beginning of my first AZT course to stimulate my white cells which had gone very low, which is normal).

Normally they would wait for 12 courses (over a year) before changing the dose / frequency, but they want to reduce it now as I am doing so well.

The options the consultant gave were:

·         Full dose with 6 week intervals

·         Half dose with 4 week intervals

But the Prof came in and said go for a

·         Half dose, for 5 days only  (instead of 7), at 4 week intervals - which is great

And it's ok to slip a week every so often for holidays etc if I am very well.

They detected no blasts from my last bone marrow and checked with us that Plymouth are happy with the trephine. So, no more bone marrow tests unless blood levels suggest one is needed - which is great.

I mentioned that I get bad constipation from the Ondansetron anti sickness tablets used with the chemo, even at only one a day. He suggested I switched to metochlopramide or domperidone for less sever anti sickness control

They thought the Nuetrophil dip last time was a blip as the N are so good now, even though just after treatment. They have seen this sort of unexplained occasional blip happen with other people.

No-one has ever come off AZT unless it was causing problems! The best they get down to is half dose, every 6 weeks. (which they were tempted to put me on) There are new treatments that are being trialled now that look promising, including a combination of Azacitadine with another product. Again see the link at the top.

I understand that there are all sorts of reasons to come off AZT including - if there are no benefits to the bone marrow or blood, severe rashes, after a while it stops working, and lots of other potential side effects.

He looked at the rash on my elbow and suggested I see a dermatologist ASAP, who could also zap my mole again. Just to make sure it is not something nasty.

Hereditary stuff

They will do a special new genetic test of the ~20 to 30 genes that are thought to be suspect for MDS from Richard's and Roz's previous samples. And possibly later an even more through series of tests that they can now do with new technology

Things can change, obviously, but this is good news for a while

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.