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My stem cell transplant

A

adrian mcdonnell

Hi Everyone,
I have just started the pre-tests to start the Stem cell transplant. Yesterday I had a Dexa scan, lung function test and dental scan and then they took lots and lots of blood for various tests. That night I stayed in the hospital hotel at Nottingham City for an early start in the morning for (you guessed it)... more test, which were a barium follow through so they can look at my bowel and take X-rays whilst the barium goes from one end to the other and then after that i had a Cardiac Echo, thankfully all were painless and the nurse who took me around the hospital for the tests was lovely and making me feel more at ease.

Next week I have an appointment for a Colonoscopy and an Endoscopy then hopefully if all is well I will start the mobilization stage the week after next.

Hope everyone is well and i will keep you informed of my progress.
 
Nica

Nica

Good Luck with your stem cell transplant. I will be watching for your posts as I think I will eventually be heading that route.
 
DustyKat

DustyKat

Super Moderator
Wow adrian! I hope all goes well with the tests. I look forward to reading your updates and I wish you all the luck in the world with your transplant...........

:goodluck::goodluck::goodluck:

Take care, :)
Dusty
 
A

adrian mcdonnell

Thank you for all your support i really appreciate it.

I have had my colonoscopy and endoscopy and the results are fine, unfortunatly my hickmen lining insertion has been postponed until Jan 7th. Then i will have to go back the following Wednesday to start the first lot of chemo. To be honest i can't wait because at the moment i am suffering with serious pain and vomiting. Trying to stay positive, i will keep you posted.
 
bry33

bry33

keep up the good work i wish that is an option in the US it would make a lot of things easier for everyone stay positive the result will be life changing
 
A

adrian mcdonnell

The criteria for getting on the trial is that you must have tried all drugs that are available without any success or side effects and had Crohn's for a minimum of 5 years.

I have had my Hickmen Insertion and tomorrow i will have my first high dose of Chemo. I have requested that i would like some anti nausea medication if possible which the nurse agreed too. I will have 2 high doses of Chemo and some other drugs of the next 10 days and then i will be put on a Stem Cell Recovery machine to take my cells and freeze them.

Feeling a little anxious but i am feeling very positive about the outcome as i have heard of some fantastic results. Have purchased lots of fantasy novels to read and a usb dongle so i can connect to the internet whilst in hospital so i can keep you all updated with my progress.
 
Ian

Ian

Location
London, UK
Good luck Adrian, really hope it goes well for you!

Don't ask me why because I'm currently having lots of success with medication, but I find it reassuring that this treatment is available not just in the UK but so close to where I live! (assuming there's no red tape around being treated at a different hospital etc). I was diagnosed just over 5 years ago and have never had any adverse reactions to drugs, so if medication ever stops working for me I guess I'd be a potential candidate? Although hopefully if/when that happens it will be a long while from now and this treatment will be widely available anyway, like the once new and experimental 'Remicade' is now :)

Do you have to have tried surgery first to be eligible?

After reading Ziggy's amazing story I'm really excited to hear this is happening just a couple of counties away from me! Sounds like a real breakthrough. Best of luck!
 
S

Sue-2009

Yeah! Keeping fingers crossed for you....Good luck...Thank you & everyone doing the stem cell thing...It gives me hope & strength to grab on to! :) SUe
 
A

adrian mcdonnell

Hi Everyone,
I am now on my second day of Chemo and Mezna, since i arrived i have been constantly hooked up to 2 drips ( 1 for Chemo and 1 for Mezna and fluids). First day was not to bad just a lack of sleep due to constantly going to the toilet because of the fluids, averaging every 30 mins. Second day not so good, been vomiting constantly even though i have been given anti nausea injections. So today feeling very fatigued and a bit low but trying to stay positive.

This is my last day of chemo and then i will go on to the stem cell harvesting machine to collect my cells.

Adrian
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Having watched Zig's journey from the beginning, I am thankful you are sharing this experience with us as well. I'm looking forward to your successes!! Good luck Adrian!!
 
A

adrian mcdonnell

Hi Everyone,

Sorry for the late response but was feeling a bit fatigued, anyway i have finished my chemo and i went Neutropenic 5 days after finishing the chemo. This is where you have no white blood cells left in your body therefore no immune system. At this point you will feel fatigued and you will spike a temperature as i and everyone else who has had this treatment.

Once you have the temperature they will give you antibiotics through your hickmen line and usually within a day or 2 your temperature will go back to normal.For some reason it took 3 days before my temp came down.

After you are confirmed being Neutropenic you start ATG injections which help increase/produce your stemcells ready for harvesting, the injection is once a day for 6 days which is given in your belly area. They inform you that you may get bone pain due to the bone marrow trying to create more stemcells but after all my injections i did not experience any pain.


So, yesterday i went on the stemcell machine which is the same size as an oven and makes a lot of noise. The nurse connected me via my hickmen line and within 5 minutes i was reading my book and relaxing and after 3 hours was told that they had enough cells (piece of cake). I went back to my room and was told that i could go home tomorrow which is today. As i am writing this i am packing my baggs Yipppppppy! I can go home and see my son Christopher even while writing i am building up with tears in my eyes of the thought of seeing him as he is not allowed to visit.

The doctor has informed me that i will be told whether i am on a late or early transplant next week. This means that if early i will be back in 4 weeks if not then 50 weeks.


Take care everyone and just to let you know for the first time in 9 months i have solid stool. Thank you for all your support and thoughts.xx

Adrian
 
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spingirl

spingirl

My jaw is dropped. I didn't know they even did this...or that it works...and I agree wholeheartedly with Ian, it is a good feeling to know there is more hope out there. If you live elsewhere...is it easier to be treated this way? Or do you still have to have tried everything else? I have had this since 1985...but only just had bad flare after 15-20 years...I would love to just do this and be done. Is it our insurance companies holding us back? Is this a cure for some? Oh...I have to keep reading. Good luck to you Adrian...I am praying for you and look forward to reading all of your posts!
 
E

e13 boy

Ian said:
Do you have to have tried surgery first to be eligible?
Click to expand...
Hi Ian

I did some reading on this approach 2 years ago.In the criteria i found online it stated that a patient who had previous surgery for CD was not eligible.I stopped reading about because i've had many operations.I'm sure a couple of months ago somebody in the US had posted on this forum they had gone ahead with this treatment despite having previous operations(i can't recall his name - sorry).
Hopefully somebody on here can give more information for you.
 
E

e13 boy

That looks very similar & it was a Dr in nottingham that i read about.
It states on your link 'must not have D due to short small or large bowel'
ie; no previous operations.
 
K

Kers

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. :)
 
Rob.G

Rob.G

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.
 
A

adrian mcdonnell

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.
 
Keona

Keona

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
 
Slandur

Slandur

Why do you have to wait so long Adrian? Why is it either like 6 weeks or 50 weeks? Why was Ziggys much quicker?
 
A

adrian mcdonnell

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
 
A

adrian mcdonnell

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
 
DustyKat

DustyKat

Super Moderator
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, :hug:
Dusty. xxxxxxxx
 
M

Mr. Izzy

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.
 
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A

adrian mcdonnell

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.
 
xJillx

xJillx

Your Story Forum Monitor
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.
 
KWud

KWud

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
x
 
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