Looking forward

Happy Thanksgiving! I am thankful for the time I have with my kids, for my family and friends, for all my experiences both good and not so good.
Well I thought I'd give an up date, normally no news is good news and this is still true, things are going well. This time last year I was still in NY and hoping to be home for Christmas, I managed that but was pretty slow on my feet. It is so lovely that this year is very different. Over the past few months I have been able to run and cycle again and on a Thursday morning join Keith, Jennifer and who ever else is crazy enough to get up at 5am to run 4 miles. My need to walk up hills (because my HR gets a little too high) has dropped from 3 to 1, so I feel real progress. I am running 3-4 miles 3 times a week and averaging under 10 minute miles now so am happy things are feeling like they did before I was diagnosed. Cycling is a little too cool at the moment (it's 18f/-8C) outside and I'm a little tired of the trainer, so running it is then. My next hurdle physically is getting back to yoga...

My Dad is visiting at the moment which is nice, we have both been a little 'under the weather' over the last year (he had a triple bypass last Feb.) so it's nice to see him. He is playing golf again and feeling like his old self more.

I've been spending a lot of time looking after the kids these days as Kristy is up to her eyes in college work and clinicals. They are great kids (most of the time...) and I really enjoy my time with them.

I've had more than my fair share of colds this year and got flu the first time I went back to church but have been able to get rid of them all although it takes me a little longer than it used to. So I am still trying to minimize my time with big crowds.

We had a 1 year post transplant/ full remission/100% donor party on October 12th to thank everyone for their help in getting me and Kristy and the kids through the last 13 months or so. It was the best time! Thank you to the people who made it and thank you to those couldn't be there but helped us be able to get through the last year and celebrate!

Check ups are every 6 months now so next visit to NY is in Feburuary, when I might get another DLI.  And in 2014 the trial I was on ends and we get to see data on how we all did. Which will be interesting!

I don't feel like a 1 year old...

But tomorrow is the one year anniversary of my stem cell transplant or as it is officially called my T-cell depleted allogeneic stem cell transplant from a matched unrelated donor (MUD), whom we found out is actually from Germany - not America like we previously thought! It has been an interesting year, four months of it spent in Manhattan NY and most of the rest at home, with a few short stays at KU hospital.

Kristy and I travelled up to Sloan Kettering a couple of weeks ago for my 1 year work up. It was run of the mill stuff, arrive at 7.30am for bloodwork, then a meeting with Dr Koehne to discuss plans for the future and some questions we had. Then bone marrow biopsy which was very quick, I think he is in and out in about 5 minutes! Next was my DLI (donor lymphocyte infusion), this was my second one. The last one (in May) was 'fresh', meaning the T-cells arrived the day before I got them. They were then separated into smaller amounts for infusions and the one I got this time was the first one that had been frozen and preserved in an agent called DMSO. This turned out to be an issue...

I had an IV in order for the T-cells to be infused. They were about 10 to 20 ml and Dr Koehne did the honors which only took about 2 minutes. He was just about to leave and I said that I was feeling a bit weird, I laid down and within a minute was very flushed and having chest pain and trouble breathing, my blood pressure dropped to 80/40 and my heart rate went from 122 down to 44 within a few minutes. I was pretty uncomfortable and was having trouble following commands and opening my eyes. To counteract this hypersensitivity reaction (similar to anaphylactic shock) they gave me IV steroids and Benadryl. Dr Koehne called a rapid response so there were a few people milling about. I was put on a non-rebreather oxygen mask and needed maximum O2 for a while as my oxygen saturation went down to 86%. I was on that for a while and they also did an EKG. It's interesting that through all the different chemos I've had I've hardly vomited and during this reaction I 'let rip' a few times.


Dr. Koehne giving me the DLI

Recovering after the events...still have the non-rebreather mask on

I was planning on 30 minutes of observation but because of the reaction they kept me for 3.5 hours.
So needless to say, we are pretty sure I react to DMSO! Next DLI, if there is a next time, they can wash the lymphocytes (AKA T-cells) and then premed me with similar drugs I got post infusion.
A lot more excitement than we were planning for sure. We left the hospital just after 5pm having had a full skeletal survey, went out for a relaxing dinner, and later went up the top of the Rockefeller Center to get a birdseye view of Manhattan at night...a nice end to a busy day.

I have most of the results already and all my bones are stable and my blood work is fine apart from my CD4 count (immune system) is low - this is likely due to another virus I had and should recover just fine. Preliminary bone marrow results show I'm still in full remission. The only thing I'm waiting for is the percentage of donor cells in my bone marrow. I'm hoping for 100% donor again.

One year out I feel really good, I am getting on the bike a little and things are getting easier. It has been a slow road back to 'normal' but I am looking forward to being 100% again.

The best part of our journey and by far the most humbling has been the amazing help we have got from our family, friends and even new friends. People have gone out of their way to help, and truthfully we could not have done this without all of you. Thank you again for your help.

Times Square

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.