My HSCT update

When I started this journey I was posting everyday.  Then it turned to every week, then every other week and now I honestly think it is not worth keeping it going unless there is something significant to blog about.  Don't worry, I will still be blogging just not about my HSCT.  This will be the last one for a while.

So yada yada yada, cut a long story short, feeling fine, blood work good, things are getting back to normal and the procedure is working great!  In case you didn't see my video you can check it out right here:

http://shakesandstones.blogspot.com.au/2012/07/my-hsct-story.html

I guess the biggest thing that has happened is I am experiencing a whole new type of soreness.  Funnily enough it is a good pain. Muscles that have laid dormant to wither and atrophy for the last ten years have started to reawaken, hence why I am able to run again.  But with the exercise comes soreness and stiffness that I haven't experienced in many years.  My physio has had to change his approach with me as my body readjusts to the new nerve connections.

But that is great.  It means I am getting better and I will take that any day.  Until next time, stay well:)

Myeloablative vs Non-Myeloablative

Myeloablative (MB) vs Non-Myeloablative (NMB)?  If you are considering HSCT this is a question you will probably end up contemplating.  There are supporters of both.  Dr Richard Burt from North Western Hospital prefers the NMB protocol whereas others like HSCT recipient George Goss advocate for the MB.

The question is who is right and why?  Personally I believe that there is a room for both.  And here is why.  To start I would just like to add that the theories and points I'm laying out in this post are my own and have not been ratified by any research or medically qualified people.  But it does make sense.  Well to me anyway.

The MB procedure is where the entire bone marrow is attacked by the chemotherapy regime.  This destroys all blood producing cells.  The NMB targets the white cells and does not completely destroy the bone marrow.  The theory being that the fault with the immune system lies in the white cells and destroying them will destroy the immune problem too.  The MB in destroying the bone marrow also destroys the white blood cells and the immune system.

To begin with I'm going to do a short list of the pros and cons of each procedure.

MB Pros

• Destroying the bone marrow will completely destroy the immune system.  It is much more thorough.
• It has been successful in treating auto immune diseases.

MB Cons

• The chemo treatment is much more severe and intense
• There is an increased risk of complications
• Recovery is longer

NMB Pros

• It is less invasive than the MB protocol
• It has been successful in treating auto immune diseases.

NMB Cons

• It is not as successful as the MB

I will give you two examples.  First, my favourite subject, Me!  I had the NMB and it worked for me really well and I'm not the only one.  But when you look at diseases such as multiple sclerosis, the selection criteria is much more strict for the North Western NMB protocol.  It is their understanding that once your EDSS score (A score out of 10 to that measures degree of disability) is greater than 6, HSCT is ineffective.

That brings me onto my second example.  Carmel Turner had MS and her EDSS was 7 which would have rendered her ineligible for the North Western trial.  She had the MB HSCT using the BEAM protocol and just like mine worked for me, hers worked for her.

That brings me onto attempting to answer the question of which protocol for you if you are considering HSCT for an autoimmune disease.  Now bear with me here, this is the point where I'm creating my own hypotheses.  I have no scientific data to back these up.  But I believe there are a number of factors that one should consider:

• Severity of disease.  If your disease is severely debilitating a stronger approach may be considered.
• Longevity of disease.  The longer you have had a disease the more entrenched it will become in your body and the stronger the treatment may need to be.
• Type of disease.  I believe that if the disease is predominantly inflammatory in nature then the NMB protocol will work.  If the diseases has progressed beyond an inflammatory stage a stronger regime will probably be required

I would love to see a medical researcher test these hypotheses to see if I'm right and if I'm not, are there any discernible patterns?  Believe me the NMB was bad enough.  You wouldn't want to go through the MB protocol unless you had to.  Well, I hope that this does inspire some educated discussion.  Until next time, stay well:)

How did I do it?

First I just want to say that the amount of positive feedback I got on my last video post was amazing.  Among all the feedback was a question about how did I do it?  It is a great question because it is not nearly as simple as filling out a form and sending it in.  The whole process from learning about the treatment to my transplant date was about nine months.

Firstly, I think it is important to acknowledge the work of Dr Burt and his team.  Without his 20+ years of research this treatment probably wouldn't be available for patients with CIDP.  Fortunately for me it is, and I benefitted significantly from this and also all the people who went through the procedure before  me.

But where did I start?  I first learnt about the procedure on an online forum for CIDP in July 2011.  I was extremely enthusiastic about the treatment, but at the same time very cautious.  In a way I was almost sceptical.  I think this is a great attitude to have because there are many people selling nothing more than hope in empty barrels, especially when using a buzz word like 'stem cells'.

So I started research.  I looked at the process and the theory behind the procedure.  To me it made perfect sense so I moved onto checking the study to make sure it had been approved by the proper health authorities and ethics committees and complied with safety guidelines.  Lastly, I checked the hospital, Dr Burt and the division of immunotherapy (DIAD).  On all counts I was thoroughly impressed so I now had a bee in my bonnet. I wanted this done!  I encourage everyone to do their own research.  This is a super critical point that I believe everyone should do to benefit themselves.  You are not doing it for anyone else, so you have to be comfortable about what you are signing up for.  I really think that this is such an important step.  I read the results received from other autoimmune diseases and spoke to other CIDPers who had been through the process.  I plan to devote a section of my book to this topic when I finally have it finished it.

My next step was to contact DIAD to see if I would qualify for the trial.  They had a list of requests as long as your arm which was fair enough.  Medical history, CIDP history, medications etc...  To get all this I had to talk to my doctor who was not nearly as enthusiastic so getting all this info would be tricky, so I got my GP to request all the files and then I sent them to Chicago.  I was annoyed at the very cold reply from my neurologist because I had done my research, I had talked to a lot of people about it and nothing was going to stop me from being the master of my own destiny.

DIAD website

When they received the data they had two more requests.  First, they wanted me to get some tests done and second, they wanted to know I could pay.  All up the cost was about $135,000, not including travel, accommodation and other living expenses.  There are a variety of options to get the money.  US residents can orally get insurance to pay for a large portion of it, but living OS I had to front up 100% of the cash.  Luckily for me I was able to do that.

After they received my results the asked me to come to Chicago for more tests and hopefully a transplant.  I was booked in and given a timeline.  I had to arrange all my own transport, accommodation etc, but it was worth it.  Until next time, stay well:)

My video

Thanks everyone who has watched or commented on my video.  I really appreciate it.  Some have asked if they could use it on their website or in social media.  Please be my guest.  It is there to share:)  If it makes it any easier you can view it directly on youtube:

http://www.youtube.com/watch?v=18-HW1A_18g&feature=plcp

I hope that people can gain hope and inspiration from this and others with autoimmune diseases can look at what I did as a realistic treatment option.  In fact, if it going to help people, I encourage you all to share it.  Stay well:)

Ps.  If you want to buy Cory Smallegan's cover of 'Closer', it is available from the iTunes store.

My HSCT story

Stay well:)

Week 12 and 13

Yes, I know I haven't written for a while.  But that isn't quite true.  My big news is that I have decided to write a book.  It is about health and I have started so stay tuned.  I will divulge more later but as most of my readers are people with health issues I would like to call on your help.  Not yet, but soon I will be graciously calling on you all to help.

It has also been school holidays so I have been busy with the kids but these are just excuses as I decided recently to dust off my Nintendo 64 and fired up Zelda: Ocarina of time, which is my favourite game ever (and probably the main reason for my lack of writing) but in the interests of professionalism I'm going with the first two excuses.

So, how am I doing?  Really well actually.  Everything seems to be on track.  My blood work was fine with the exception of my kidney function which was elevated.  The haematologist I am seeing here was concerned but seeing as I have a kidney problem too I also have a nephrologist who we consulted over this issue.

So what caused this elevation?  During my HSCT I had really low blood pressure so the doctors at North Western decided I should stop taking Captopril, a drug I take for kidney stone prevention.  I started taking the drug a couple of weeks ago and this is the reason for the elevated creatinine.  Apparently it does not damage the kidneys, just slows them up a little.

As my neurologist was not overly concerned, neither am I.  But one think that remains in the question of whether the treatment worked?  Stay tuned, I will blog about that later this week.  Until then, stay well:)

Thank You

Many people have sent me their congratulations about the treatment that I received in Chicago and also told me how strong and tenacious I've been.  Personally I appreciate the accolades but I don't see it.  I feel I have just done what I had to do to beat my disease.  Because, let's face it, it's much easier to live without a disease than with it.  So that being said maybe I took the easier option?

Anyway, whatever you want to call it, the truth is I could not have done it alone.  So I have decided to give everyone who helped a long overdue thank you.  There are many people so the question is where do I start?  I will also apologise now if I forget anyone.  So here goes.....

First, my medical team here in Australia that assisted me in getting everything ready to take to Chicago. There was a lot of preparatory work to do and I could not have done it all by myself.

My friends and family here in Australia who supported me before I left and helped keep my affairs in order and look after the kids while I was away.  Especially the in-laws.

To all my friends in Chicago and the US (both old and new) who made my trip not just a little less lonely, but a lot less lonely.

The medical team in Chicago.  From doctor Burt all the way down to the PCP's on the 19th floor.  The care was fantastic.

To all my online friends that have wished me well and followed my blog, I have to say I have gained a world of strength knowing I have had so many in my corner.

Bob, Wendy and Cory who went through the process at the same time I did.  Although I would not wish CIDP on anyone or see them need a stem cell transplant, it is nice to know you're not alone.

To my parents, without who's financial assistance none of this would have been possible.

My mother, who also spent a good deal of time with me whilst I was in hospital.

Lastly to my wife who also spent a good deal of time with me in Chicago and also put up with me during my recovery.

Stay well:)