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Crohn's Disease Forum » Treatment » My stem cell transplant


 
04-05-2011, 09:06 AM   #31
Kers
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Just wondering how Adrian is getting on? I'm being referred to Edinburgh to have this treatment and I'm interested to know how it's going for him.

Kers.
04-06-2011, 03:40 PM   #32
Rob.G
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I would also like to know how you are getting on Adrian, I should be hearing back from Nottingham about my Funding for this very soon.
04-26-2011, 04:06 AM   #33
adrian mcdonnell
 
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Hi Everyone,

Please except my apologies for not getting back sooner but so much has been going on with me and my family. To give you a better understanding on whether the treatment has been a success so far or not I will explain how I was feeling before the treatment. I have had Chrohn’s for 14 years and tried pretty much all the available treatments to no prevail and over the last 18 months my condition rapidly got worse. I started vomiting approx 8 to 10 times a day, going to the toilet approx 18 to 25 times a day and taking Cocodamol, liquid morphine for the pain. I had lost 4 stone in 3 months and life was becoming unbearable. I have only had part of the treatment which is called the “Mobilisation” part as I am on a late transplant which means that I will go back for a stronger doze of Chemo and then have my Stem cells put back in through my Hickman line in January 2012.

After I was discharged I was very fatigued and spent most of my time in bed (approx 2 weeks) then I started to go for short walks with my wife. The pain had subsided and I was no longer vomiting which was a relief. I was starting to put back on weight and I was visiting the toilet much less frequently. It is now 8 weeks since I had the treatment and still no vomiting and pain but I have had a flare for the last 3 weeks and started to visit the toilet more frequently approx 8 to 10 a day. I am back at work and whilst there I where adult conti-pads just in case I can get to the toilet in time. I went to see Professor Chris hawky and he has advised me to go back on Humira until my transplant in January. Personally, I do feel so much better and feeling quite positive about the treatment and look forward to start my transplant and see if I can go into full remission. Whilst I was at the hospital having my routine check up with professor Hawkey I was speaking to a young man called Tristen, he is 23 years old and was one off the first people to start the Astic Trial 3 years ago. Chris Hawkey told me that he was a great success having been in full remission since having the treatment. They think he was such a high success due to only having being diagnosed with Crohn’s 2 years prior to his treatment.

I do think this is the way forward for anyone suffering with severe Chrohn’s and would like to avoid having surgery. I thank you all for all your support and if anyone has any questions then please feel free to ask. I promise I will keep updating this thread and keep you all informed of my progress especially when I start the transplant.

Love to you all!
Adrian.
04-26-2011, 04:30 AM   #34
Keona
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wow Adrian
I am just chiming in now and I have to say you are quite an inspiration! Thank-you for sharing your experience and I am sooo glad it has been a success.. The best part was that you were reunited with Christopher...I have to admit, that almost had me in tears.
all I can say is WOW!

Take care and I wish you and your family the best
Wendy
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04-26-2011, 05:41 AM   #35
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Thanks Adrian! Please do keep us posted!!
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04-26-2011, 10:13 AM   #36
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Why do you have to wait so long Adrian? Why is it either like 6 weeks or 50 weeks? Why was Ziggys much quicker?
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04-26-2011, 11:42 AM   #37
adrian mcdonnell
 
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I think the reason why Ziggy had his treatment so quickly was that he went privately through his insurance company. Here in the UK it is not available privately and you have to get funding from your local health authorities. The trial is set out in 2 ways, there is an early transplant which is 4 weeks after mobilization or a late which is 50 weeks after. Possibly Ziggy was on an early and that is why his treatment was quicker, this is completely randomised so you do not get to choose. The reason why the are doing an early and late is because as part of the trial they are not completely sure if that just having the “Mobilization” stage is enough to put the Chrohn’s in to remission and the other reason is that they would like to see if the treatment is more effective after waiting awhile before re-administering your stem cells. Hope this answers your question.

Adrian
07-01-2011, 10:37 AM   #38
adrian mcdonnell
 
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Hi Everyone,
Thought i should give everyone an update on my stem cell transplant. As you are aware i have only had the mobilization stage of the treatment but unfortunately after being in remission for 6 weeks my chrohn's has come back with a vengeance. I started to go to the toilet approx 8 times a day and then up to 26 times, with the normal bleeding, mucus and vomiting all over again. i am currently in Derby royal Hospital having lots of steroids and Humira. My consultant has contacted the QMC in Nottingham where the Atsic trial is carried out to see if they are prepared to bring my appointment forward which is not unitl January next year. If not then it looks like a can't avoid surgery anymore and will be joining the Stoma club on this site. Hopefully though they will give me an earlier appointment so i can have the 2nd part of the treatment and fingers crossed it works like it has for so many other chronies, especially Ziggy! Hope is all well Ziggy and to all the chrohns suffers.

Adrian
07-01-2011, 03:03 PM   #39
DustyKat
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Oh Adrian, I'm so sorry to hear this...

I so hope the consultant has success in getting your appointment moved up. Fingers, toes and everything crossed mate! Keep us posted!

Thinking of you,
Dusty. xxxxxxxx
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07-01-2011, 03:20 PM   #40
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Good luck Adrian! Sorry for the setback.
07-10-2011, 09:06 AM   #41
Mr. Izzy
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Good luck Adrian, just hang in there!

Btw it is very upsetting to see them set you back for this reason. Docs in the US have already confired that the long transplants have no benifit over the short term ones. Doing the mobilization early is the standard procedure here for a reason. It's already been tested and tried here. I wish Hawkey would collaborate with the leading docs in the US. Maybe you can bring this to his attention Adrian? A very long shot, but maybe if he confirms this, he can bump you foward. I know what im saying to be true, maybe hawkey has not seen the results over here..? I would try and get him to talk to that dr burt in us.

Last edited by Mr. Izzy; 07-10-2011 at 06:29 PM.
07-10-2011, 04:26 PM   #42
David
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Fingers crossed for you! All the best to you and thank you for your continuing updates

*hugs*
08-07-2011, 12:08 PM   #43
adrian mcdonnell
 
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Hi Everyone,
Unfortunately i have had to have surgery, my condition rapidly deteriorated and was informed that my intestine was almost perforated and that i would not be allowed any further chemo hence the surgery. Now i have an ilestomy and to be honest i feel so much better, no vomiting, no pain and no frequent trips to the toilet.
08-07-2011, 03:42 PM   #44
xJillx
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I am so sorry to hear this, but it sounds like it has worked out for you. It's wonderful news that you feel so much better already. I hope you continue to improve.
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08-07-2011, 03:55 PM   #45
KWud
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Hey Adrian

I've just picked your thread up. God you've had a rough time huni. I'm pleased you're feeling much better after all that. Sending lots of hugs to you Stay well

Paula
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03-01-2012, 04:03 AM   #46
Helper
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Has there been any update on the ASTIC trials?
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