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.
Tuesday, February 5, 2013
Wednesday, January 30, 2013
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.
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.
Saturday, January 12, 2013
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.
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.
Monday, December 24, 2012
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!
It will be nice to wake up in my own bed tomorrow morning...it being such a special one.
Sunday, December 23, 2012
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!
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!
Friday, December 14, 2012
Home - Day +100
We got home a week ago today, the trip home was made very easy by Corporate Angels and the chaps on the plane couldn't have been nicer. We arrived in Olathe (20 minutes from home) and Sophie and James ran out on the tarmac and gave me big big hugs - what a welcome!
The next couple of days I got to bed before the kids, I think a combination of being more active with Sophie and James and a virus has meant I'm exhausted all of the time. On Monday I went in to Clinic and had blood work done and Kristy arrived a little later for a doctors visit. It was so nice to see everyone again, I have missed them. Plus they do an awesome job!
I had Adenovirus checked as well as BK virus and all the other usual stuff. All was fine except I have BK again. I called MSK to see when they last checked it which was 10/10. I guess they only treat if I have symptoms. So I'm back on the antibiotic Cipro. This makes me pretty nauseated and eating and drinking are difficult. I'm glad they are on top of things here but I wish I felt better, hopefully soon.
Being at home is great and I am spending a lot of time with the kids, it's crazy to think I was away from them for so long. And as much as I am loving being at home, I do miss my friends at Hope Lodge.
The next couple of days I got to bed before the kids, I think a combination of being more active with Sophie and James and a virus has meant I'm exhausted all of the time. On Monday I went in to Clinic and had blood work done and Kristy arrived a little later for a doctors visit. It was so nice to see everyone again, I have missed them. Plus they do an awesome job!
I had Adenovirus checked as well as BK virus and all the other usual stuff. All was fine except I have BK again. I called MSK to see when they last checked it which was 10/10. I guess they only treat if I have symptoms. So I'm back on the antibiotic Cipro. This makes me pretty nauseated and eating and drinking are difficult. I'm glad they are on top of things here but I wish I felt better, hopefully soon.
Being at home is great and I am spending a lot of time with the kids, it's crazy to think I was away from them for so long. And as much as I am loving being at home, I do miss my friends at Hope Lodge.
Thursday, December 6, 2012
Day +92
We have had a good week so far. Tuesday I went in for my second dose of Cidofovir; it was a long day because of premeds and IV fluids but I was able to get a full dose (1st time I only got half) because my creatinine was only 1.4. I got to clinic at 9am and left on the 7pm shuttle so, as I say it was a long day but Wednesday they checked my creatinine again and it was still 1.4. So all the IV fluids plus what I drank protected my kidneys just fine and hopefully when they next check my adenovirus levels they will be lower or even back to normal.
We also had a meeting with Dr Koehne and he agreed that we could travel home as soon as we can get a flight (I can't fly commercial as I am still open to infections). We have called Corporate Angels, a company that donates flights to cancer patients when they're available.
Dr Koehne felt comfortable in having Dr McGuirk look after me - and we are very happy to have him look after me and to be back in KC. I also had my bone marrow biopsy which was fine, so hopefully those results are good. Two days ago I had my Kappa Light Chain numbers checked (these are cancer markers) and they are undetectable which is great. So all going well we should be able to leave for KC sometime over the next week - here's hoping!
Okay, I have two updates. First I got the latest Adenovirus numbers and just before I had the full dose on Tuesday, the number had dropped from 27,600 to 1,800 which is great and so after Tuesdays dose I should be normal. The other update is that my next Adenoviral test will be done in KC! I got a call from Corporate Angel flights today and they have a flight for tomorrow! So we find ourselves madly packing and saying goodbye to the good friends we have made in Hope Lodge. We fly at 2.40pm tomorrow direct to Olathe (20 minutes from our home), please cross your fingers it all goes to plan.
We also had a meeting with Dr Koehne and he agreed that we could travel home as soon as we can get a flight (I can't fly commercial as I am still open to infections). We have called Corporate Angels, a company that donates flights to cancer patients when they're available.
Dr Koehne felt comfortable in having Dr McGuirk look after me - and we are very happy to have him look after me and to be back in KC. I also had my bone marrow biopsy which was fine, so hopefully those results are good. Two days ago I had my Kappa Light Chain numbers checked (these are cancer markers) and they are undetectable which is great. So all going well we should be able to leave for KC sometime over the next week - here's hoping!
Okay, I have two updates. First I got the latest Adenovirus numbers and just before I had the full dose on Tuesday, the number had dropped from 27,600 to 1,800 which is great and so after Tuesdays dose I should be normal. The other update is that my next Adenoviral test will be done in KC! I got a call from Corporate Angel flights today and they have a flight for tomorrow! So we find ourselves madly packing and saying goodbye to the good friends we have made in Hope Lodge. We fly at 2.40pm tomorrow direct to Olathe (20 minutes from our home), please cross your fingers it all goes to plan.
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