Well lots of things have happened since New York and I have been slow to write them down for a variety of reasons. I managed to write an update last week but also managed to delete it somehow as well!
So, I got the DLI and I'm also taking Revlimid, they have changed the dose twice so now I take 10mg per day. I will also be getting DLI's every 3 months.
I had a PET scan and they found myeloma in lots of bones including both humorus's, left scapula and ribs. They also did a head MRI and found some myeloma at the top of my spine/bottom of my skull, the specific area is called the Clivus. The lesions are I believe small to medium and too scattered to radiate however the Clivus is in an important place so today I am consulting the radiology oncology dept to see if it's a good idea to use radiation to stop any further damage there.
At their highest my kappa light chains were 57.75 and last Tuesday March 25th they came down to 44. That was 4 weeks post DLI and 2 weeks after starting Revlimid. On April 1st KLC was 35 so it is headed in the right direction!
I have been breaking/damaging ribs at quite a rate, three in the last few months. I also managed to get pneumonia in both lungs, because coughing with a broken rib hurt! But right now I feel fine other than a few bumps.
I had my CD4 count (measurement of my immune system) checked 4/1 and it had gone up from 170's to 254 which is great and means I can stop one of my most disgusting meds Mepron. It also means the last DLI worked and will help me catch less viruses.
So my next step is to hopefully get the KLC back down to normal. I have always been 100% donor which is kind of confusing (even though the reasons have been explained to me) and the last BMB (bone marrow biopsy) was clear. So hopefully my marrow stays clean for long enough for me to reduce the KLC to normal.
I noticed last night neuropathy is back, just in my feet - but I hadn't missed it. I guess it means the drugs are working.
Friday, April 4, 2014
Wednesday, February 5, 2014
Well, here we are again...
So I have a few health updates.. Six to eight weeks ago I was working out and damaged/broke a rib. Not sure if it actually broke then as I could still run and continued my 4 mile runs a couple of times a week. Then I got a cough and cold and so the rib hurt a bit more. I had it X-rayed and it was fractured...I guess the cough may have finished it off. Since it hurt to cough, I tried not to, but with a viral infection already underway it led to pneumonia. I think they caught that early and after 4 days of IV antibiotics I felt better. I followed this with 7 days of oral antibiotics. A couple of days after finishing them of course I got thrush... the down side to antibiotics...
So all that said these are problems that I can sort out with some R&R, except last Friday I managed to tweak my rib again... Heyhoo.
Three weeks ago I had an abnormal blood reading, it showed my Kappa Light Chain (KLC) number was up, this means cancer is back. My doc retested then did full skeleton survey, bone marrow biopsy and chest CT. The rib fracture didn't show signs of myeloma and the preliminary BMB results didn't show any abnormality. The CT is when they found pneumonia. So the plan was to check KLC in two weeks to see if the numbers trended up or down. My doctor thought the fracture and pneumonia could be giving a false reading. So two weeks later the numbers had gone up from 7 to 17 which confirmed the bad news.
Having spoken to Dr Koehne in NY, I moved my appt with him forward and will be getting a DLI next week. Following that the plan at the moment is to go back on the oral chemo Revlimid. This drug stopped working before but being that I had an allo transplant, it's effectiveness may be back.
Another patient on the trial has been put back in full remission following a DLI so that would be a long shot hope I think.
We have a lot of questions for Koehne and hopefully will have a much better grasp of what the future holds after our meeting with him. So I guess I'm still getting my head around the fact that 'round three' is on.
So all that said these are problems that I can sort out with some R&R, except last Friday I managed to tweak my rib again... Heyhoo.
Three weeks ago I had an abnormal blood reading, it showed my Kappa Light Chain (KLC) number was up, this means cancer is back. My doc retested then did full skeleton survey, bone marrow biopsy and chest CT. The rib fracture didn't show signs of myeloma and the preliminary BMB results didn't show any abnormality. The CT is when they found pneumonia. So the plan was to check KLC in two weeks to see if the numbers trended up or down. My doctor thought the fracture and pneumonia could be giving a false reading. So two weeks later the numbers had gone up from 7 to 17 which confirmed the bad news.
Having spoken to Dr Koehne in NY, I moved my appt with him forward and will be getting a DLI next week. Following that the plan at the moment is to go back on the oral chemo Revlimid. This drug stopped working before but being that I had an allo transplant, it's effectiveness may be back.
Another patient on the trial has been put back in full remission following a DLI so that would be a long shot hope I think.
We have a lot of questions for Koehne and hopefully will have a much better grasp of what the future holds after our meeting with him. So I guess I'm still getting my head around the fact that 'round three' is on.
Wednesday, November 27, 2013
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!
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!
Wednesday, September 4, 2013
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.
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.
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.
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| Dr. Koehne giving me the DLI |
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| Recovering after the events...still have the non-rebreather mask on |
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.
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| Times Square |
Monday, June 3, 2013
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.
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.
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.
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| 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.
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| Bryant Park with Maralyn & Astrid |
Thursday, March 14, 2013
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...
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...
Tuesday, February 5, 2013
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.
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.
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