MS societies - Why so anti HSCT?

It is a question that has puzzled many HSCT advocates, both inside and outside of the medical and patient community.  To those of us that have understood the process and talked to people who have gone through the procedure and benefitted from it can't understand.  Myself included.

Now I'm not saying that MS societies all around the world should lay out the red carpet to advocates and aimlessly fund every patient and institution in order to carry out procedures at random.  But a distinct lack of support is extremely puzzling.  I would at least expect the MS societies to point people in the right direction and fund some of the bonafide research studies that are happening.

And why should the MS societies point people in the right direction?  The answer is simple.  If a patient decides to ask about the option of HSCT and are rejected for information by what is considered to be the pinnacle patient body on this matter they can take matters into their own hands and might end up being treated by one of the shonky charlatans that sadly are around only to cash in on peoples misfortune.  The very least that could be done is for that body to recommend the places that are doing it right.

They should also fund the research.  I do believe it is a very long bow to draw to expect anyone to blindly believe a little anecdotal evidence and a few patient stories, especially if they are a professional body.  But, anecdotal evidence and a few patient stories cannot be ignored and it is up to these professional bodies to explore and investigate NOT simply dismiss and ignore.  The best way to investigate is by finding and funding doctors and facilities that are prepared to run official clinical trials to prove or disprove the treatment.  So far these societies have failed to do this. MSA the largest MS charity in Australia has a budget of $33million.  Surely they could use a small portion of this to support the trials?

So why have MS societies and organisations been so anti HSCT?  I need to put in a few disclaimers here.  Firstly,  I don't know that all MS organisations are totally anti HSCT.  I apologise to any that support the treatment.  Secondly, the reasons I am about to list are only theories based on hearsay and (my phrase for the day) anecdotal evidence.  One or all of the reasons might be wrong but it still does not change the fact that most MS societies are sadly lacking in their acceptance of HSCT.

Anyway here are my reasons/theories:-

1. They are getting their advice from the wrong source.  Although MS is a disease that has its symptoms manifest in a neurological way, it is a disease rooted in haematology as it is the immune system (which resides in our blood) causing the problem.  MS is a disease that has traditionally been treated by neurologists and as a result most MS societies are guided by neurologists.  Neurologists simply do not understand HSCT.  It's a bit like getting an electrician to do your plumbing.  Neurologists are ill informed about HSCT and we need to start listening to haematologists about this.
2. They are entrenched deep in the pockets of the pharmaceutical companies.  Big pharma loves charitable support groups.  They are a great way for them to tap directly into the patient market and the association gives them and the drugs they are trying to pedal a high degree of credibility. To ensure their support these cashed up pharmaceutical companies give large charitable donations.  Although HSCT does use drugs in quite a high proportion during the procedure these drugs are only used during the procedure and most of them are relatively cheap.  Big pharma like patients who need to pop an expensive pill every day for the rest of their life.  Currently, MS sufferers are a huge cash cow for them.  If an MS charity supports HSCT, big pharma might pull their funding.
3. MS societies are scared.  After all, for many MS and autoimmune patients, HSCT has been the silver bullet that they have been looking for.  Now it has not worked for everyone but HSCT is significant enough to make a massive impact on the MS community.  Much of what they do would be be made redundant.  But isn't that the way it should be?  Service the organisation and patients so well you're no longer needed?  I mean, if you are contracted to build a house you don't just leave it unfinished so you can keep the job forever.  You finish your house and then find a new one to build.  If am MS society "cured" MS, I believe that organisation and its staff would be in massive demand for another cause.
4. Early failures.  Yes, HSCT had been tried early without much success.  For one reason or another they all failed but as Henry Ford said "Failure is only the opportunity to begin again, only this time more wisely".  And some people have.  Dr Burt in Chicago started off with rat studies and by the time I saw him had treated over 400 patients.  We cannot live in the past.  Just as a small sample group with a positive outcome does not prove a successful treatment a small sample group with a negative outcome does not disprove it.  Alas, the memory of these failures may have a long memory.

Now the real answer may not lie here but I have faith in people and I believe that the people involved with MS charities sincerely are trying to do the right thing so I'm putting my faith in points 1 and 4.  There are ways we can do this.  The new organisation I am involved in is called Reset Australia.  Our main aim at the moment is to raise the money to fund the stage 3 trials for all autoimmune diseases.  If you want to do so you can here:-

http://www.gofundme.com/72o5z0

Until next time, stay well:)

What to expect when you're expecting........ HSCT

Now if you have the time and the inclination you could pretty much get all the information you need from reading my previous posts from last year.  But given that most people are time poor and don't want to plough through the best part of a hundred posts I thought I'd condense it into one little post for you all to read.

Before I start I just want to add that what I am relating to here is all my own personal experience with HSCT.  It is by no means generic and don't think that if you have HSCT your experience will be exactly the same.  Everyone is different and just because you have the same disorder as me and are treated at the same facility I was with the same protocol your experience might be completely different.

So where do I start.  Well the beginning would be logical.  I contracted CIDP in 2000.  It was a long struggle since then with current PBS approved treatments only slowing the progress of my disease.  I never saw improvement and the fact that all these treatments were designed to either suppress or effect my immune system in some way most of the time I felt ordinary.

It affected every single facet of my life and was probably the main reason that in 2006 I was diagnosed with depression.  It is really important to make note of this because it is very easy to look at me and say "OK, so he uses a walking stick and can't run any more but he is still the same old bloke."  There was a blanket over my condition and on the outside it was all smiles and jokes but on the inside I was hurting.  Really really badly.

Luckily after my diagnosis with depression I eventually received some effective treatment which in all honesty probably saved my life.  This gave me the strength to pick myself up off the carpet and restart looking for effective treatments for all my disorders.  It was a turning point and in 2010 I had brain surgery to arrest my tremor which was extremely successful.  However, I always new 2006 was my low point and it still hung over me like the sword of Damocles.  I still had CIDP and I still had cystinuria.

I ploughed myself head first into researching my illnesses and learning as much about them as possible. Eventually I stumbled on to a blog written by someone with Crohn's disease who was having HSCT in Chicago under Dr Burt.  In his blog he wrote that Crohn's disease was an autoimmune disease.  I got to thinking, "If this treatment (HSCT) is to treat inflammatory autoimmune disease why can't it treat CIDP?"  After all, CIDP is an inflammatory autoimmune disease too.

And what do you know, Dr Burt had a trial for CIDP too.  I researched to see if any other facilities around the world were doing HSCT for CIDP and found North Western Memorial Hospital in Chicago to be the only one.  I looked into having it done at home in Australia and decided there was too much red tape and hoops to jump through.  In hindsight if I had waited for an Australian option I would probably still be waiting and since I learnt about it I wanted it.

Now people have called me mad, stupid, brave and strong to have had this done.  I disagree with all of it.  I honestly thought I didn't have a choice.  Without the treatment my future didn't hold much for me.  A wheel chair? palliative care? Loss of bowel and bladder control? Death?  And living half a life in-between?  I did not feel brave or strong I felt like I was left with only one option.  Mad and stupid too?  I did my research.  I read the published studies and I talked to the transplant recipients who had gone before me.  Everything made sense.  If you had asked me I think I would have been mad not to have had it done.

So off I went to Chicago.  Even though based on all the information I had sent them from Australia there was still the nagging thought that I might not be accepted into the trial.  Fortunately I was.  The other worrying thought I had was what if it didn't work.  I eventually reconciled this by telling myself that if I tried it and failed at least I would know.  If I did nothing I would be kept in the nightmarish purgatory style of limbo I had been in for the last twelve years.  Just slowly watching myself get worse.

Strangely enough I knew that the procedure was going to be tough but that didn't bother me.  I was focussed on the goal and that kept me going.  I had researched mortality rates and morbidity rates of the procedure and side effects of all the drugs and the entire procedure itself.  I did know what I was getting myself in to.

My Chicago trip was really in two halves.  The first half was all testing and appointments in the morning and the rest of the day to do as I pleased.  I can't lie, it was fun although I did miss my family.  I even managed to squeeze a trip into Washington DC to see some friends which was great fun.  But the second half was the serious side.

I survived the mobilisation process quite well.  The first round of chemo didn't hit me too hard.  I was slightly off my food but I did not feel nauseous.  However I did have a craving for chocolate milkshakes but others might just say that was normal for me.  The neupogen shots didn't effect me that much either but the harvesting did leave me quite lethargic.

Finally conditioning came around.  After five days of chemo it was safe to say I felt awful.  Nausea, vomiting, lethargy, dizziness rash and a little disorientation were some of the side effects I had.  Even with all the anti nausea drugs I still felt terrible.  This link to one of my posts will give you a snapshot of just how bad I felt.

http://shakesandstones.blogspot.com.au/2012/04/day-7_18.html

Anyway, 9 days after transplant I was discharged from hospital and 5 days after that I flew home.  It was a really hard flight.  Even in business I felt restless and unwell.  If I did the trip by myself I don't think I would have made it but I leant on my wife heavily and she was fantastic.  When I arrived back in Melbourne I could barely walk I was so tired.

After a month of rest and recuperation I started to feel like myself again.  Since then the progress has been slow and steady but undeniable.  In hindsight I am so glad I did it.  Finally I not only found a treatment that halted disease progression completely but sent it back the other way.  Since then I have been able to run, play cricket and go skiing.  But the best part is the little things.  I used to have to crawl to the bathroom in the middle of the night when I needed to go.  I couldn't walk down stairs without two hands on the handrail and nothing hurts when I sleep now.

To anyone considering the treatment I couldn't recommend it enough for any autoimmune disease.  As for me now, I have my life back.  I can look forward with confidence, not worry.  The glass used to be half empty, now it is half full.  Don't believe me check out my video.

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

Stay well:)

Marijuana Man

Marijuana.  As soon as you mention it, images of a bunch of stoner uni students sitting around in a share house with the play station fired up smoking bongs is conjured.  But I am not talking about the recreational use of the drug.  I am talking about the medicinal purpose of the drug. I am talking about Marinol.

Now if you had asked me my to give my opinion on medical marijuana (MMJ) three months ago I would simply told you that I believe if it did have a genuine medical benefit there is no reason why it shouldn't be used but I would also counter it by saying that I have never researched it so my opinion would not be extremely valid and it has never been a viable treatment option for me.  Or has it?

Personally I think my opinion on the subject of MMJ has become a lot more valid in the last four weeks.  Why?  Because I was treated with marinol during my stem cell transplant and it worked great.  I was given a plethora of anti-nausea meds during my hospitalisation and although they did work, the only thing that would allow me to tolerate any food what so ever was marinol.  And during the procedure it is important to eat to maintain your energy levels.

So my question is if it worked so well why has it never been offered to me as a viable option in Australia?  I understand it would need strict regulation but we prescribe far more addictive drugs for far less all the time.  In hospitals narcotic based analgesia is the go to medication for anyone with pain and addictive anti-depressants are being shelled out like M and M's.  However, I have been in hospital in Australia and suffering severe nausea and although this drug would most likely have helped I was not offered it.  I don't even know if it is available over here

But MMJ has such a negative spin.  People always think of pot smoking hippies when you think of marijuana but just because you take the drug medicinally does not mean you'll turn into a pot smoking hippy, just like morphine for pain will not turn you into a heroine junkie.

Now I had the marinol for one reason.  Post chemotherapy nausea.  There are many reported medicinal benefits of MMJ.  We could prescribe it, monitor it, control it and make sure that the product is used safely and for its maximum benefit.  Or we could simply let patients suffer or force them to illegally purchase an uncontrolled substance that is not regulated for quality.

At the end of the day it comes down to patient welfare.  If it can help don't we have a responsibility to prescribe it responsibly as we do with any prescription drug.  Society needs to let go of the stigma associated with marijuana and start thinking about medical benefits.  Then we can start using it for improvement of the lives and easing the suffering of the people that need it.  Until next time, stay well:)

Day -3

It's getting eerily close now, only three days until my new birthday.  Luckily, so far I have not felt that bad, and today I managed to get my morning routine out the way before they started all the premeds.  I also managed to get the first round of lasix out the way early so that when the ativan, benadryl and chemotherapy came to the party I was ready for nothing but a nice little nap.  And that I did.  I felt a little bit bad for my mother who was there to keep me company and all I did was sleep.

But it hasn't all been plain sailing today.  To start with I have found it much harder to sleep at the right times.  I was getting into a routine of sleeping when the sedating meds were in force, and then being awake when they were off.  Now, no matter how much steroids they give me I still feel tired.  I think I will be hitting a period of 16 - 18 hours of sleep per day.

Secondly,  as I had expected, my appetite has diminished somewhat.  I have had a little nausea but no vomiting.  Realistically I feel quite lucky.  After reading about the experiences of others who have had chemotherapy for the same reason and for others, nausea and vomitting is one thing that they have not been able to control no matter what the medications they have used.

As I said before, expect the worst but hope for the best.  So far I admit it has been no picnic, but it has been way better than I thought it would be.  Realistically I always assumed it would be somewhere in the middle, but I am currently batting well above average.  Touch wood, I will stay that way.

The last side effect that has been bestowed upon me, and it is really not that big a problem is the hiccups.  Yes, after each meal or a big drink I seem to have an uncontrollable bout of hiccups.  But come on, is it really that bad?  Everyone has had the hiccups from time to time and they always seem to pass after about five or ten minutes.

So that is it for my day.  Right now I am just waiting for the rabbit ATG to run out and one more dose of lasix and then I'lll be done.  Just one more day of chemo left, two more ATG's followed by stem cell infusion.  It's all getting eerily close.  Stay well:)

Day -4

Day -4 has been very similar to Day -5.   The main difference being that today I was foiled by my own procrastination.   My PCT came in bright and early and wrapped my arm up ready for a shower.   I then proceeded to lie in bed for another half an hour because I was feeling extremely lethargic.   Just as I was about to make the giant leap from bed to bathroom a nurse came in to administer my pre-medications.   Unfortunately this meant that I had to postpone my shower again.  

So I decided to remove the cling wrap around my PICC line as the pre-medications were slowly infused.   At this time, my breakfast also arrived which fortunately I managed quite easily.    At this point the combination of Benadryl and Ativan had kicked in quite nicely and I slept through until lunchtime.   After lunch, which also went down quite easily, I had the pre-meds for the Rabbit ATG, which again made me feel sleepy.    Unfortunately, at this point, they also gave me Lasix so, instead of sleeping, I was up every ten minutes to relieve my bladder.   During this time I watched a movie called The In-Betweeners.   It was very funny but I would not recommend it for children or the morally sensitive.

It was at this point things took a small turn for the worse as I started to get a stomach ache and I felt a little nauseous.   Instead of taking more Zofran I decided to take some Composine as I am only allowed one more dose of Zofran between now and midnight.

At this point  I went to the toilet and had diarrhoea.    The nurses were really good and helped me back to bed as I was also feeling a little lightheaded.   They have also put a "hat" over the toilet seat to collect a sample from my next deposit.

Right now the Rabbit ATG is still running and it will be for another 6 hours but I think it is the Cytoxan that is really knocking me around.   And the best part is I get to do it all again tomorrow.   In all honesty I have always said that I have hoped for the best but prepared for the worst, well mentally anyway.   So far the process has not been the best but it has been far from the worst I had expected.

The nurses have been absolutely excellent and extremely diligent about listening to all my complaints and given me all the options associated with them.   I believe one of the best things about North Western Hospital is that they don't use any agency nurses like they do in Australia and, although some of the agency nurses are good, there is always a clear difference between the full and part time hospital nurses and the agency nurses.

Right now, I am starting to feel to better.   I seem to be going in a cyclical up and down pattern and I think  I am heading up at the moment.   Thanks to my mother who is diligently typing this post as I dictate her on my hospital bed.    Until next time, stay well :)

Day -5

Today was my first day of chemotherapy.  In all honesty I really expected it to be similar to what I experienced with the mobilisation and for the most part I was right, but there were a few differences.

First, there were a lot more drugs today.  The chemo was supposed to start at 9.00am, which was kind of annoying because I wanted to get my morning routine out of the way before I started, but there were a few snags along the way.  There were a number of premeds and they wanted to start them from about 8.00, the same time I had ordered my breakfast.

I really wanted to have my shower before they re-hooked my PICC line to the drugs and fluid which was started at 7.00am and staggered through until 9.00.  I was under the impression that these would start about 8.45, but I guess that was my bad as I really should have asked for more clarity and it was no biggy, but I did want to get my morning shower in before I was hooked up  to the IV just for the sake of convenience.  The other thing that threw the proverbial spanner in the works was that my breakfast was twenty minutes late.  It was supposed to come at 8.00am, so by the time it finished it was late.  I had to run through the shower to make it back to bed treatment.

Just so you know, at 7.00am they started on the fluids, which will be administered for the next four days until I am finally done with the chemo.  They are running it at 150mls per hour.  That is 3.6 litres of fluid a day, so as well as the standard fluids I drink ordinarily, that it a lot of fluid.  At the same time (7.00am) I also had a dose of dexamethasone, another steroid and mesna.  After all the hoopla the pharmacy people here agreed with Dr Goldfarb and concurred that the mesna posed no threat to my cystinuria.  Just before 9.00am I rushed out of the shower just in time to get the last couple of premed drugs, zofran for nausea and ativan, a light sedative, which also made me feel a little drowsy.

After about half an hour it hit me again.  The dreaded wasabi nose.  My nose started twitching, my sinuses started burning and my eyes started watering.  So they gave me some benadryl and slowed the rate which the infusion which seemed to do the job.  Tomorrow I thing we will engage these tactics prophylactically.

After the cytoxan had run through it was back to the rabbit ATG for another ten hour infusion.  It sounds long, but with a permanent infusion of fluids it really doesn't matter.  I am here anyway whether I have 100 different things being pumped into me or just one.  With the ATG came more premeds.  Another 1000mgs of solumedrol, more benadryl and tylenol.

It was a long day.  I did have some side effects, mainly the sleep highs and lows due to the Benadryl, ativan and steroids.  But there was too some nausea, but I had that one dealt with very quickly with some more zofran.  I have had other problems too.  The lasix that they give me sends my kidneys into high gear so I'm in a constant state of urination and that leads to pain.  With all the many kidney surgeries that I have had I have a great deal of scar tissue inside the good old waste filters.  These coupled together are quite painful so I have had to take some Norco too.

I have to say that right now I probably feel slightly worse than I did when I had the mobilisation chemotherapy, but that is probably because of the ATG and Rituxan I have already taken.  Oh well, one day down and three to go.  And I always said I am not doing this because it is easy, I am doing it because it is worth it.  I also couldn't finish my dinner tonight.  Alas, the chocolate brownies I ordered for dessert had to be returned to the kitchen uneaten.  I hope the chef was not offended.

On a lighter note I have had a couple of extra visitors over the last two days.  Aside from my mother who's presence has been sorely welcome, yesterday Abby, the sister of the friend I stayed with in DC came to visit me.  It is amazing what the presence of a friend can make.  I also have to say that Abby has been really amazing since I have been in Chicago, making sure that I have had people I have felt welcome.  In fact I have to sat that everyone in her family and her friends that I have met have been really great and I thank them all for their hospitality.

THe other visitor I had today was Bob Boen.  Bob is a fellow CIDPer and another loverly person, I just don't know whether to call him Bob or Robert?  WHen I met him for the very first time he was wearing a shirt that said "My friends call me Bob, but you can call me Robert."  The question is am I his friend and should I call him Bob?  And is the comment related to others?  Or does every bodies friend status get demoted when in the presence of the shirt?  Maybe I should call him Rob or Bobert;)

Now I have had my little laugh I will go on to say Bob conveys to me the kind of guy that inspires me.  He always has a smile on his face, is genuinely interested in talking to anyone and refuses to let his disease beat him.  He also gave me my own CIDP jumper that is really kind of him.  I will take some pictures of it when I can get the opportunity to.

Well, that is about it for today.  If my post today has seemed a little disjointed I apologise.  I have 1001 different drugs swimming around in my system and I'm not quite feeling myself.  Until next time, stay well:)

When you're up you're up

Yes, just like the Grand Old Duke of aYork, "When they were up they were up" but on the same token "when they were down they were down".  And at the moment, aside from losing my hair I feel really great.  And honestly, I don't care about that.  More than half the guys I know are experiencing some form of baldness as we all descend into middle age.  So realistically I just feel like one of the lads.  To the women I know that are going through (or have been through) this process I really admire the courage you have all displayed.  I understand how much harder this must be for you all.

OK, so you probably want to know why I titled this post the way I have.  Simply, right now I'm up.  After chemo mobilisation I was down, but certainly not down and out.  But while I'm up I am going to make the most of it.  Right now I feel really great and with both my cystinuria and CIDP under control I feel like I need to get out there and live a little.  After all, even though most people with cystinuria or CIDP (like me) have to organise their schedule around their doctors appointments etc... I still firmly believe that life is for living and while I am "up" I am going to make the most of it.

And I had a splendid day.

I am not telling you all this to gloat or be nasty.  When you have a chronic disease you have to make the most of every good day you have and that is precisely what I intended.  So in the morning I went to theArt Institute of Chicago.  Where as most museums I have been to I have managed to crawl myself through at a snails pace the Art Institute not so.

I think of a scene in the movie "Pretty Woman", when Richard Gere is talking about opera where he basically says you love it or you don't.  If you don't love it, you can grow to have a wonderful appreciation of it but you cannot ever love it.

Now, don't get me wrong I certainly enjoy art, and I truly appreciate the work and the meaning behind each piece.  But if it doesn't tell me a story or I don't get it straight away I am not interested.  To me each piece has to have meaning or tell me something I didn't already know.  I guess that is why I love museums.  To quote Spock from Star Trek, they are "fascinating".  So although I breezed through the place much quicker than I expected I really did appreciate and enjoy it although I did not love it.  My favourite exhibits would have been the indigenous American history artwork and the Picasso's they had on display.

After that I walked through Millennium Park which was right next door.  I saw some street performance and the Silver Bean.  Which is actually called Cloud Gate but all the native Chicago folk call it the Silver Bean.  I do have pictures, but I can't be bothered to download them right now so I will share them with you next time.  In the evening I went to the Ice Hockey to see the Black Hawks play.  Unfortunately, the got hammered by the Nashville Predators 6 -1.  But it was still fun and I had a good time, which brings me to now.

I do understand that my fun in Chicago will soon be coming to an end as I will be going in to North Western Hospital for my stem cell transplant in just over a week.  But I don't live for my disease, I live for me and in the meantime I'm going to make every good day count.  Stay well:)

Baldness and Bruising

I know some people bruise easy.  I have seen pictures some people have been kind enough to put on medical forums where people have had a simple IV insertion and the remnant has been a bruise the size of a tennis ball.  I am not one of them.  Most times I do not bruise from an IV and when I have it has just been a small purpley mark no more than a centimetre.  Others can get bruises of all shapes, sizes and colours.

The intravenous catheter was different.  I don't know why, but it was dark, big and painful.  It was the first time I had had an intravenous catheter, and it did make me consider the merits over the simple two IV placements I had when ever I had been hooked up to the apherises machine.  But that is another post for another time.  I feel my comparison of the two methods could be beneficial to others that might be confronted with the choice in the future.  But that is a post for another time.  A picture of my bruise is here:-

The bruise was biggest on day two post harvest, this picture was taken on day four.  It is now seven days since harvest and the bruise is still there although not nearly as prominent.

The other thing that has started to happen is that I have started to bald.  Now either I have a huge case of rapid onset male pattern baldness or the chemo has started to have its very common yet unwanted side effect.  They said it normally kicked in around ten days after chemotherapy if it was going to.  I thought I'd got away with it because I was up to day seventeen post mobilisation chemo and it only just started.

I woke up this morning and my pillow was covered in hair.  I tried taking a picture of it but it didn't come out very well.  After my shower I noticed my towel attracted a lot of hair too but that picture didn't work either.  So I shook my head over the sink and lots of hair came out and I got a picture of that:-

I think the worst part is it itches over my shoulders and behind my neck, but that is a small price to pay.  Until next time, stay well:)

I can't sleep.....

With all the drugs they have given me over the last 24 hours I can't sleep.  I'll start with where I left off last post.  I am now pretty much all the way through now so I should be able to give you a fairly accurate account of what happened.

The first thing that they started was the fluids.  150mm per hour of saline for 24 hours.  That is 3.6 litres of fluid over the entire day plus all the water and other fluids I ingest.  After that the fun stuff starts.  The first drug they give you (and for me that started at 3.00pm) was a drug called Mesna.  Mesna is a drug they use to alleviate the symptoms of the chemotherapy drugs.  How it works I am not quite sure.  When I came in yesterday I didn't know it was on the cocktail menu so I haven't had time to research it yet.

After that they ran through a dose of zofran for a prophylactic anti nausea, they also ran through a shot of  dexamethazone for the same reason.  This was weird they said that it could make your arse feel like it was on fire.  I wouldn't say it felt like my arse was on fire, but I did feel rather intense pins and needles all over my anus.  Delightful hey.  Luckily, It only lasted a couple of minutes and then it was over.

Next, the main event.  The chemotherapy.  They give just a single dose of a drug called Cytoxan in order to kill off a few blood cells.  The resulting outcome is the body goes into stem cell overdrive in order to replace what has been lost, so in ten days when harvesting starts their are plenty of little stemmies to collect.  The cytoxan was run for about two hours.  But there was a problem.

I starter getting a side effect to the cytoxan called wasabi nose, because you get a burning sensation in your nose.  Seriously I felt like I had been sniffing chilli powder and I was twitching my nose like a rabbit on steroids.  In order to get past this the infusion rate of the cytoxan was reduced and gave me some benadryl which made me feel drowsy.

In order to make sure that I wasn't retaining all the water that they had given me they also gave me a drug called lasix which is designed to make you go to the toilet.  So if it wasn't enough to chuck 3.6 litres of fluid through my system I needed something to make me go even more.  Over the night I had three courses and on the first one I passed over a litre of urine in 45 minutes.  That level of urine output made my kidneys hurt more, so to combat this they gave me some Norco and Fiorcet, which were both analgesia to arrest the pain, and this seemed to work fine.

The other problem I had was that after I ate my evening meal of lasagne and mac and cheese I started to feel a little nauseas.  I decided to tell the nurse as I thought it best to nip this one in the bud, which I think was the right thing to do as they gave me more zofran and I felt fine.  Courtesy of the benadryl I then slept for four hours where I woke up at two and couldn't go back to sleep.  So I polished of the remaining of season two of Supernatural.  After breakfast I fell asleep again and woke up around 12.30, just in time for lunch.

So how do I feel.  Honestly, for those that are following me through the SCT process, there is nothing to fear from mobilisation (so far).  Apparently my WBC will hit rock bottom in about five days so I might not be over the fun part yet.  Also, hair falls out about the five day mark so I will keep you informed of any follicle displacement.  So right now, all is good.  I have lots of reading to do and I still need instruction on what to do with the prophylactic medications they want me to take at home and the neupogen shots.

I will keep you posted.  Until next time, stay well:)

Stem Cell Transplant

I have had a fair few questions about my stem cell transplant recently.  And rightly so.  A stem cell transplant can mean a number of things from deriving a small amount of stem cells from fat tissues purely for cosmetic purposes all the way up to a total bone marrow transplant.  Here are the details of what I will hopefully be going through.

The full name of my procedure is an autologous hematopoietic stem cell transplantation.  Definitions are as follows:-

Autologous:- Derived or transferred from the same individuals body*

Hematopoietic:- The formation of blood or blood cells in the body*

Stem Cell:-  An unspecialised cell that gives rise to a specialised cell, such as a blood cell*

Transplant:- To transfer (tissue or organ) from one body or body part to another*

*Definitions from www.thefreedictionary.com

So, in short, the procedure is the donation of blood stem cell from myself to myself.  But it is a fraction more complicated than that.  The following diagram gives a brief explanation of the process:

The hard part comes in three sections.  There is the first round of chemotherapy that is used to stimulate the growth of stem cells so they can harvest as many they can.  Also have to have Neupogen injections for one week to assist in this endeavor.  Both the chemo and neupogen are not without their side effects, which is the fun part.

Second, is the intensive round of chemotherapy.  We all know someone who has had cancer and the difficulty that they have had.  Aside from me not having cancer it really is not much different.  The iidea of this round of chemo is to completely destroy all white blood cells, so when the stem cell are reintroduced they create a brand new immune system and there is nothing left to copy.  If I simply re-grew a copy of my old immune system I would still have the antibodies that were attacking my nervous system.

Third, after the second round of chemo I'll be completely neutropenic.  Meaning I will have no immune system and unable to fight off infection.  Even a common cold could be life threatening, so I have to be really careful for the next few months to make sure I don't catch anything.  Even though they have a timeline for when they think you should reach certain milestones, what really dictates when you reach those milestones is your white blood count as that is the best indication of the strength of your immune system.

Next time I will post my transplant schedule, so all going to plan, you will be able to know when I will be facing each stage.  Until then, stay well:)