Don't Always Believe what you Read on the Internet

To get a better idea about this post, may I suggest you read a post I wrote called "Damn Mesna".  To cut a long story short, during the chemotherapy they wanted to give me a drug called Mesna.  I found an article that said Mesna increases cystine output in the urine, cystine being the key culprit of my kidney disorder.  I had already taken the drug once during the mobilisation process and they wanted me to take it again during the chemo prior to the transplant.

This had worried me a bit so I decided to do a little more investigation.  My first step was to talk to the doctors here in Chicago about it and they came up with the idea of having a catheter and regular bladder washes during the chemo.  I still had that niggling feeling in the back of my mind and as I had already taken the drug once I wanted to check that there were no long term problems so I investigated further.

My next stop was to contact a New York based nephrologist by the name of Dr David Goldfarb.  I'll digress for a minute just to say that Dr Goldfarb is one of the most inspirational doctors I know and one of the leading authorities on cystinuria in the world.  He has never formally treated me so the fact that he will give me an aster to my question is greatly appreciated.  And he doesn't just do it for me he will do it for anyone who suffers from cystinuria.

So I put my concerns to him in writing and it turns out that Mesna has actually been used in a very few cases to treat cystinuria.  Yes there is evidence out there to suggest that mesna can actually decrease cystine levels in the urine.  He even sent me an article to support this.  So their is one thing left for me to do.  Do I believe Dr Goldfarb and the original unsolicited internet article I originally read?

Yeah, it's a no brainer for me.  I'm really glad I dug a little deeper.  It was really nice to get to the bottom of it and put my mind at rest.   I do believe that the internet is a great source of information and as patients it is a great place to start.  But, the information you get from it should be corroborated and scrutinised.  At the very least, you should run anything you find out past your doctor or health care provider before you make any decisions.  It is also a good reminder that you can't always believe what you read on the internet.  Stay well:)

Damn Mesna

Ha ha ha.  It's all fun and games until someone gets a catheter.  And when I say catheter I don't mean veinous catheter, I mean urinary catheter.  And by someone I mean me.

When I went in for chemo mobilisation they gave me a bunch of drugs.  It did annoy me a little because I like to know exactly what I am going to be taking so I can research it properly.  And I do remember asking before days before the procedure what they would be giving me.  They told me the chemo agent, the lasix and a bunch of maybe medications, but they did not tell me about the mesna.

Mesna is a drug they give you during chemotherapy to protect your bladder from damage.  I think that they forgot to mention it because the drug is normally very well tolerated and has few side effects and is so routine it hardly justifies a mention.  Never the less, they didn't tell me about the drug and after it had been administered I started my research.

I found out what it was for, how it works, side effects etc.  And they I hit a problem.  Under mechanism of action on the wikipedia page it stated that 'drug also increases the output of urinary cystine'.  Now, for most people that wouldn't mean anything.  For my fellow cystinurics that read my blog you know exactly what I was thinking.  My heart skipped a beat.  I felt like I had cut the blue wire when I should have cut the red.  And if I was aware of the administration of this drug I could have raised my concerns with my doctors well ahead of time.

Just to clarify, my kidney disorder, cystinuria, leads to an abnormally high concentration of cystine in the urine which causes kidney stones.  The last thing one with cystinuria would want to do is take a drug that increased urinary cystine.

Fortunately, during the whole mobilisation process they gave me plenty of fluids so the extra cystine should have been washed out and the effects of the mesna are temporary.  Still, it added an element of stress that I didn't need.

However, they wanted to give me more mesna when I go back to have my stem cells transplanted back to me so I raised the issue with my medical team.  The good news is that I don't have to have the mesna.  The bad news is I have to have a urinary catheter and bladder washes whilst I have the chemotherapy.  Oh well, it is a small price to pay I guess.  On the plus side, with all the fluids and lasix they will give me the bladder will be in overdrive.  A catheter will negate the regular five minute trip to the toilet.

On another note I am pleased to say that I have managed to harvest the required 2 million stem cells.  I am not sure what the final count is yet, but they were expecting 20 million and my mid count was 8.7 million.  So all there is now is hopefully my very last IVIG which is tomorrow, and they I get two weeks off until the main event.  Until then, 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:)