NYC trip - 9 months post transplant check up

We arrived home Saturday a little tired but very happy to see the kids. Our visit with Dr Koehne went well, on Wednesday we met with him and I had bloodwork done. For some reason I thought I was having a bone marrow biopsy but they are only done 3, 6 and 12 months post transplant unless they are concerned. So no BMB was a nice surprise.
He seemed very happy with me and said we could go ahead with the donor lymphocyte infusion (DLI) tomorrow as the cells were flying in that day.

Friends from London Maralyn and Astrid came to visit!

The only concern he had was that I had stopped one of the medications that I had been taking since transplant - Mepron and substituted it with a monthly Pentamidine treatment which guards against a certain type of pneumonia which can happen post transplant. The other thing Mepron does is guard against Toxoplasmosis (you can become positive for this by having a cat) which my donor tested positive for, it is unlikely to be an issue but Dr Koehne will look at my immune system numbers (CD4 count) and decide whether or not to put me back on Mepron. The reason for stopping it was it was causing a lot of nausea and therefore stopping me from eating and drinking enough. Anti nausea drugs didn't help very much.
The DLI was fine, no side effects. They put an IV in and it is just a 10ml syringe that Dr Koehne slowly pushes in. Through conversation with Dr Koehne I found out my donor is in Germany! So the 41 year old American male donor information I had was incorrect. After one year I believe I can find out more and maybe meet him.
Other things I know about the clinical trial I'm on are that after 4 years the first 4 patients are still alive and 3 are in full remission. So I have a 75% chance of being in remission in 4 years! That is pretty amazing! One of the patients (there are 50 in all in the trial so far, and it finishes in 2014) was given a DLI after 3 years which caused him to go into full remission, this is very interesting.
My Creatinine continues to stay above 2 (2.1) which is annoying but probably due to the drug Cidofovir which I took for BK virus. I'm hoping it will slowly get a little better.
I should get the rest of the blood work results over the next week or so but so far so good and Kappa light chain (cancer marker) numbers looked a little lower. The ratio between Lambda and Kappa is 1.11 and in the normal range.
So we'll see what the rest of the results tell us.

Bryant Park with Maralyn & Astrid

Staying well..

Well it has been a while since I last updated things here. Lots has happened of course but the 'meat and potatoes' of it are...
We went to NY for my 6 months tests and they show I am still in complete remission, still 100% donor cells which is great news! My immune system is still not up to much, but that will come... slowly.
I feel pretty good, I am on the bike trainer and lifting some weights to remind my body it used to do more than just sit, stand and walk! It isn't sure about all the extra stuff yet...

Another day, another virus..

I'm in clinic at the moment getting my weekly Cidofovir so I'm here for a few hours. I had a wonderfully busy morning helping get the kids ready for school then dropping both off on my way to clinic. It feels good to do 'Dad' things again.

The kids got colds last week and then Kristy and I developed a cough... we have done so well so far but I guess it had to happen sometime. Thankfully what I have is Coronavirus which is not a bad one, so hopefully it will not last long.

I have been having headaches and nausea on and off (who knows why...I guess I'm just lucky) but generally things are getting better. I have more energy for sure which is great. I have probably put on 10lbs in the last few weeks as my appetite is back, now I just need to 'distribute' it.

End of January 2013

January 29: Well I'm in clinic today for a couple of infusions, IVIG to help boost my immune system and Cidofovir to fight the BK virus in my blood. I should say that since my last blog update the headache has gone and most of the nausea as well. The last count on the BK virus in my blood had come down from 250k to 54k and seems to have been the difference between feeling rough and feeling human. My appetite has returned and I seem to be eating constantly. So today they will check the BK level again and hopefully it is headed to zero, but I feel good so hopefully that's a good indicator.

I have been meaning to update my blog for a while but really didn't look forward to doing it. The reason is because I seemed to be treading water for a while and nothing was getting very much better - not a good excuse for not writing but it is the reason.

January 30: So here we are then... and I am feeling a bit better. I got some more Cidofovir yesterday as well as some IVIG, so the double whammy seems to have made a difference. Today I had my first coffee in quite a while, some marmite and also cleared a space in my basement and put my bike on its trainer. Three of my favourite things that I have not done in 6 months (I have tried coffee a few times but only today it tasted like coffee). Also, I had a Guinness the other night for the first time and really enjoyed it!

So hopefully this trend continues, I need to actually get on the bike of course and see if my sorry excuses for limbs can propel me forward (I have had a fair amount of muscle loss). I have also found the more active I am the more I realize the neuropathy in my feet is worse than I thought. I hope this doesn't become too big a problem.

One of the reasons I was having so much nausea is because I have developed some GVHD which happens in only about 10% of T-Cell depleted stem cell transplants. It is good and bad I guess. The good part is that it means my body is growing T cells from the stem cells that were transplanted into me and therefore my immune system will start functioning better and better, and start being able to fight off viruses and bacteria on my own. Also, it probably means that I won't need my first T cell infusion (but I still have to go to NYC for my 6 month checkup). The bad news is that acute GVHD can lead to chronic GVHD and therefore I could potentially be battling nausea (among other things) forever. But there are also cases where acute GVHD resolves with medication management and never shows up again.  Only time will tell how things will go for me, but for now the pill I'm on has completely relieved all of my symptoms and I feel great.

Tests, tests, and more tests

I've been waiting for some good news to write an update, but have been feeling pretty under the weather lately.  The good news is the results from my 100 day workup in NY finally arrived (about a month after it was done...) - my bone marrow still shows 100% donor cells and the goal was >90%, so this is great!  Also, my kappa light chains are still 0, so there is no detectable cancer in my blood, urine, or bone marrow!!

So the reason for being under the weather has been my BK virus, which is still persisting in my blood, although it's now going down. One of the tests during my last hospital stay was a lumbar puncture (aka "spinal tap"), which seems to have given me a "spinal headache" now for the past 3 weeks. Needless to say, this has been no fun at all and has caused a lot of nausea along with the headaches. The nausea made it difficult to eat and drink very much, which has caused my creatinine to go up, which has made the BMT docs have to hold my Cidofovir (the antiviral treatment for BK)...it's a bloody vicious circle. So they admitted me to hospital again yesterday to try to figure out what is going on. So this morning I had an MRI of my head and another lumbar puncture (they want to make sure they aren't missing anything by assuming this is all related to a spinal headache), but this time they did a blood patch which means that they took some of my blood out of my arm and injected into my spinal fluid to help the puncture sites clot and heal. The rest of the day I've spent lying on my back, as I'm very sore and now having back spasms. It seems that every test and procedure lead to another problem.

Tomorrow is my "day off", so all I have to do is rest and relax.  Then on Monday morning I have the joy of having an upper and lower endoscopy (EGD and colonoscopy) to test my bowels for viruses and GVHD. Both Dr. McGuirk here at KU and Dr. Koehne at MSK think that it's most likely viral and the risk of GVHD is low, so that's good. At least I get some good sedation for that procedure! I'm looking forward to a nice nap :)

Sorry again for not blogging for so long...I've just felt pretty bad and was waiting for some good news to write about.

Christmas Eve at home listening Christmas music..

I made it home today. All my counts are presentable: Wbc 4.6 Hgb 9.2 Plts 116 and Creatinine 1.7.  As usual it was the creatinine we were watching, it was 1.96 yesterday so if it went down and I didn't have a fever I could go! A three day stint in hospital wasn't that bad. I have to say I felt pretty sick while I was there and slept most of it.
It will be nice to wake up in my own bed tomorrow morning...it being such a special one.

Happy Christmas everyone!

BK update

This is Kristy writing again with an update...unfortunately Brian is in the hospital again.  The BK virus has gone from his urine to his blood and was causing a few symptoms that they wanted to monitor closely - headaches, slight confusion, fevers, and rash are the main ones.  Because these symptoms can be signs of serious things going on he has had to have several tests, some of which are not very pleasant - skin biopsies, a catscan of his head, and a lumbar puncture.  We should find out the results of the skin biopsy today (Sunday) and some of the lumbar puncture results too.  The catscan was normal which is great.  They're giving him cidofovir again in hopes to bring the viral load down, but they had to stop the Cipro because of the rash (it is one of the possible causes for the rash).  His creatinine is elevated at 1.9, but it's hanging in there and hasn't gone too crazy.

In the big scheme of things this is a setback but not a major one - BK can cause damage to kidneys but is mostly just annoying and uncomfortable.  There are many more serious viruses out there that could cause major setbacks and complications, so we're trying to keep a clear perspective of what we're dealing with.  The biggest bummer is that he may not be home for Christmas.  Yesterday he had a fever of 101, so he needs to be fever-free in order to be discharged.  I'm not exactly sure what else they want to see, but hopefully we'll know a little more today.  I'll post another update later tonight or tomorrow with any updates.  Thanks for taking the time to read and stay updated - we appreciate you all immensely!