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Posted: 21 Jun 2015 23:41
I have thought long and hard about who to make this post as I don't want to pass on negativity regarding this treatment (but I decided that it's important to share experiences from the other side as to what I have read on here).
We were always told that this wasn't a cure but a life prolonging and life quality improving option as a other treatment options were to risky.
My mother started a 6 cycle course of this after being diagnosed with bone marrow failiure last autumn.
The treatment seemed to be achieving what the consultants hoped - an improvement in quality of life and a decreasing reliability on blood transfusions (she moved from weekly transfusions to needing two in 6 months)
During the treatment she was hospitalised twice due to severe infection.
She recently had the 6th cycle (the treatment was delayed due to the infections).
The Dr's did a bone marrow aspersion to see how's things were going before approving a 2 nd course of treatment.
Unfortunately the results were as bad as they could be, the treatment has failed and to quote the consultant "had absolutely no effect". Her condition has progressed straight to AML and there is nothing more they can do (it also seems that her prognosis is even worse as it started as essential thrombosis and myelodysplasia) at least that what I have understood them to say.
We have now entered the final leg of the journey and whilst we knew it would come, it has come a lot quicker than we thought.
Posted: 20 Jul 2015 01:41
I was so sorry to read this and forgive late response but family commitments have kept me away from the forum for a while.
We know Azacitidine does not work for everyone and even when it does work it can stop working. It also has the effect of lowering white cells and platelets so even with improvements in transfusion dependency,there can be side effects of infections , or bruising. They are getting a lot better about knowing which people have certain genetic mutations which will mean that drugs or treatments such as stem cell transplants are unlikely to be successful- but there is still some way to go. Whilst we all want the hope a treatment may bring I'm sure none of us would want to endure nasty side effects if there is little chance of success.
Once again, my thoughts are with you and my hopes that your mother is being well cared for and comfortable.
Posted: 21 Jul 2015 06:36
I am being treated with a Azacitidine, I start my cycle number 8 next week.
I am fortunate that it appears to be working for me, but it causes me a great deal of anxiety that my medication is produced offsite.
I attend the Cathedral Unit at the Kent and Canterbury hospital and the Azacitidine is made up in Bath in Somerset.
It has been very close to expiry when I am treated and on one occasion it had expired before I was due to be treated, one time the van broke down too. On both occasions I had to return to the hospital for another day.
Not surprisingly I approach each cycle with increasing stress wondering if I am going to get my medication in time.
I am aware that this drug was made onsite up to a year ago but it was decided by the powers that be to outsource production.
When you consider that Azacitidine has a very short shelf life it is ludicrous to have it transported from a manufacturer a 5 hour drive away, and that's assuming there are no breakdowns or heavy traffic.
I have complained to the Aseptic Dept at the hospital, so has another patient with the same experiences as mine.
I have informed Sophie Wintrich at MDS Patient support of my experiences and she is investigating a course of action which will hopefully improve the situation.
I am very pleased to have been given medication to extend my years but if the supply is so erratic it may not have the desired effect.
I might add that the medical staff are fantastic, no fault lies with them. I did hear it mentioned that a lot of medication was discarded as it was out of date!!
Diagnosed November 2014 with RAEB intermediate stage
Posted: 21 Jul 2015 13:07
Interesting and disturbing to read of your experiences. When you consider how close we in the MDS community have been to NICE refusing to fund this medication because of the expense, it seems downright daft, immoral , unethical and wasteful for hideously expensive medication to be discarded out-of-date because of the logistics. I think there is probably huge waste in the NHS which we don't know about!! Surely there must be somewhere nearer to you where they have supplies and expertise to make up this drug? Maybe this is what Sophie is looking into on your behalf? I can see how it would make you anxious wondering if the drug will reach you in time. Hope it can be resolved soon.
Posted: 28 Jul 2015 05:15
After complaining to the Aseptic and Pharmacy depts and the Chief Executive at the hospital I attend my Azacitidine is now made onsite as it was over a year ago. I also wrote to my MP.
I cannot take all of the credit for this as another patient made the same complaint in depth some time ago and he started the ball rolling.
Yesterday the first day of my cycle 8 I was treated with the onsite made Azacitidine.
You have no idea what a relief it was for me to be free of the enormous anxiety this issue has given me these past months..
I was listening to Stuart Rose M&S boss on radio 4 yesterday talking about the NHS and one of the things he said was there was no management coordination across the whole structure and therein lies the cause of the many problems In the service.
He is the sort of person who should be running the show.
I'm pretty sure the problems I have had are being repeated across the country, not just in the hospital that I attend.
Posted: 28 Jul 2015 11:32
Well done to you and the other MDS patient who kicked up a fuss to make this happen! It must be such a relief for you.
Yes, I am sure that many of the NHS problems are organisational with each separate Trust living in its own financial bubble and nobody looking at the bigger, joined-up picture - though that surely should be the role of Central Government?!! Same thing with the privatisation of the railways, Utilities Companiies and the chaos of the new Clinical Commissioning Groups - again breaking down into smaller units than the former Regional Health Authorities and all fighting their own small corners instead of taking in the bigger picture!! So many services within the NHS are slowly and insidiously being carved up and parcelled out to private companies. Don't get me started!!
Posted: 28 Jul 2015 17:17
I agree with everything you say including your beef about the utility companies and the railways, chaos seems the order of the day.
Frightenly it can only get even worse.
Posted: 18 Aug 2015 15:06
Being extremely aware of the danger of infection to all of us who are unfortunate to have MDS I have taken all the precautions ie avoiding crowds and maintaining strict levels of hygiene in the home and avoiding anyone with coughs and coldsI still managed to contract three infections in the space of twelve days
1 I was awake with a hacking cough and a very sore throat most of the night, as instructed previously if any thing like this should occur I was told to go to the Critical Care Unit ant my local hospital.
This I did and was thoroughly examined, blood and urine tests, ECG and chest X-ray. It was found that I had a viral infection much to my relief.
2 The following weekend I started running a temperature and on the Monday morning I was coughing up blood. That scared the living day lights out of me. As an ex smoker of many years and my father dying of lung cancer I feared the worst.
I had a weeks supply of antibiotics that I had been prescribed to control frequent sinus infections which had lead to my diagnosis of MDS.
At my last visit with the haematologist I was told to now stop taking them and if it reoccurred to resume taking them.
When I first started running a temperature I automatically assumed it was my sinus problem back again, it had happened like that in the past.
I was again referred to the CCU and was put through the same test as the week before. The senior registrar on my discharge said I had a chest infection and to continue with the antibiotics until the end of the week and that would clear it up, and so it did. Maybe the viral infection had progressed to a chest infection.?
3 At the end of the week late afternoon on Friday I started getting a foul discharge from my nose( the sinus infection had returned)
I managed to get an emergency appointment with my GP and explained my predicament and prescribed further antibiotics to get the infection under control, enough to last until I see the haematologist next month.
After only for days of treatment there is a vast improvement and I feel quite well again. I was having this problem for two years before it was discovered I had MDS, and that's only because I saw an ENT consultant on a private basis.
It is possible I need to be on antibiotics to act as a prophylactic in the future in regard to my sinus problems. I will await the haematologists opinion on this.
I start cycle 9 of Azacitidine on 24/8
I intend to fight this to the bitter end and survive the dreadful dreadful disease as long as possible.
To quote the great man if I may " we will never surrender"
Anthony Abel RAEB intermediate