SATURDAY, AUGUST 23, 2008 02:26 PM, CDT
After the good news on Thursday things continued to go well for me. I was told that the first infusion of Campath is the one with the worst side effects. After a night without fevers, chills, or any pain, I would have to agree. The only problem staying overnight at the hospital was being woken every hour when the nurses took vital signs.
Friday was another long day at the hospital. In addition to finishing up the Campath and getting hooked up to my EPOCH bag, I had two other tests. I had a Pulmonary Functioning Test and an Echocardiogram. The techs told me after each test that my lung and my heart were looking good. Thats great news looking forward to the Bone Marrow Transplant.
After those two tests I met up with Kate at the hospital. She and I got an opportunity to speak with the transplant doctor for about a half hour. He let us know that there were 600 potential donors from the search, and that it gave us an 80 percent chance of finding a match. That was pretty good to hear. He also went into detail about the three different types of transplants that are done for lymphoma patients.
The lead research doctor told us 3 weeks ago that an autologus transplant, which uses a patients own stem cells to replace the decimated bone marrow, would be unlikely to provide a long term cure. The transplant doctor said that he thinks all 3 transplant options would be good for me, but was less enthusiastic about this option because of how quickly I relapsed after going into complete remission.
The other two transplant options are called allogeneic transplants. They require taking bone marrow from a donor. The traditional way of doing this is called a myelooblative transplant. Myelooblative, also called a high intensity transplant, requires radiation and high dose chemotherapy to virtually remove all of the bone marrow in my body before the transplant. The good news about this transplant is that it has the best results in terms of complete remission. However, it also has the highest mortality rates...about 20-30%. The transplant doctor said if I were a 15-17 year old, that he would definitely reccomend this option. His thinking is that younger patients are just able to handle the high dosage of chemotherapy without complications. He stated that at my age I am in the middle ground but leaning towards the younger side. So this wouldn't be a bad option in his opinion.
The more recent development in stem cell transplants is the non-myelooblative transplant, also known as low intensity. The thought behind this procedure is that a complete elimination of the recipient's bone marrow isn't necessary, and that an allogeneic transplant could be done with smaller doses of chemotherapy. The difference between the myelooblative and non-myeloblative transplants is a reduction in half in both mortality rates and successful remission. The mortality rate for his treatment is 10%, however the percent of those achieving complete remission is between 25-75%. Thats a pretty big range in my opinion. However, the 1 in 10 chance of mortality sounds a lot better than 20-30% to me.
The doctor shared that to be eligible for a low intensity transplant, that a person's tumor has to be viewed as chemo sensitive. The number needed to be chemo sensitive is 50% improvement. Since I received an 80-90% improvement on just 1 cycle of EPOCH-C, I am already seen as a good match for this treatment. The doctor stated that the best predictor of success in these transplants is cancer sensitivity. Because of my positive results so far, he feels that I would be a great candidate for a non-myelooblative transplant.
OK...so thats a lot of information and I imagine it could be quite complicated for people. At this point I feel like going forward with the non-myelooblative transplant. I feel like the chemo works well on my cancer, and that I will likely be in remission again like I was back in January. That would give me a great chance of long term remission with this treatment, and I could avoid the higher potential mortality rates that the full intensity treatment has. NIH also offers the low intensity transplant, which would allow us to stay local with my treatment. Having to go to another city to have the transplant would be worthwhile if there was a better option. However, I feel comfortable with the program at NIH, and I trust that my doctor's are learning how to treat my cancer. As the transplant doctor said, "Its not like you have even 100 patients with your type of disease to give us an idea of what should be done." Other hospitals just might not have a good idea of what to do with my diagnosis.
Staying at NIH will also allow my family to visit easily without the stresses of travel. Kate will have a lot on her hands with a sick husband at the hospital and a 2 year old to watch at home. So the family support will be very important during this ordeal. So things are looking good for my continued treatment at NIH. The doctor just reccomended that I continue to eat healthy, exercise, and stay in as best shape as possible. Assuming the chemotherapy continues to go well, things are looking up. Unfortunately it will be a long process. The doctor stated that it takes about a year's committment after this procedure. However, he said that once I leave the hospital I should be able to endure most activities that I normally do. The one thing he did state was that yard work would not be reccomended. Oh well...there goes one of the things I like to do, but it could be worse!
Showing posts with label bone marrow donors. Show all posts
Showing posts with label bone marrow donors. Show all posts
Saturday, August 23, 2008
Feeling Better
FRIDAY, AUGUST 15, 2008 11:02 PM, CDT
Today was a very good day. Unfortunately Isaiah woke up at 7 and instead of playing quietly in his room, he decided to make a lot of noise and force me up. So I was up much earlier than I have been used to lately. However, I felt great all day and didn't need a nap to get through it. Thats the first time in weeks I've been able to go through a day without passing out once or twice. So I had a great day spending time with Isaiah and Kate.
After my blood tests from Monday revealed my white blood cell count was down to 800, I received a call that my blood count yesterday was at 7800. I needed a blood count of over 5000 in order to stop my neupogen shots, so it is great that I rebounded that much. I think my renewed energy is a sign of that.
I also got a call from the doctor who leads my research team. It was interesting that I talked to him, because its usually a nurse who makes calls. He passed on that the search for bone marrow donors was complete. His words were that there were a lot of potential donors, and it was highly likely that they would find a match. So thats great news. It was expected, but it was great to hear nevertheless.
There have been a lot of people, whether through my wife, my parents, or I, who have expressed an interest in becoming a bone marrow donor. I would hope that anybody who had that urge would follow through with that. It appears that I will be blessed enough to have a donor match, but it would be amazing if more people could make themselves eligible as donors so that other people who find themselves in a similar situation as mine will have better opportunities.
Today was a very good day. Unfortunately Isaiah woke up at 7 and instead of playing quietly in his room, he decided to make a lot of noise and force me up. So I was up much earlier than I have been used to lately. However, I felt great all day and didn't need a nap to get through it. Thats the first time in weeks I've been able to go through a day without passing out once or twice. So I had a great day spending time with Isaiah and Kate.
After my blood tests from Monday revealed my white blood cell count was down to 800, I received a call that my blood count yesterday was at 7800. I needed a blood count of over 5000 in order to stop my neupogen shots, so it is great that I rebounded that much. I think my renewed energy is a sign of that.
I also got a call from the doctor who leads my research team. It was interesting that I talked to him, because its usually a nurse who makes calls. He passed on that the search for bone marrow donors was complete. His words were that there were a lot of potential donors, and it was highly likely that they would find a match. So thats great news. It was expected, but it was great to hear nevertheless.
There have been a lot of people, whether through my wife, my parents, or I, who have expressed an interest in becoming a bone marrow donor. I would hope that anybody who had that urge would follow through with that. It appears that I will be blessed enough to have a donor match, but it would be amazing if more people could make themselves eligible as donors so that other people who find themselves in a similar situation as mine will have better opportunities.
Disappointg news and a change of plans
FRIDAY, AUGUST 01, 2008 10:48 PM, CDT
Finally back at home after a very long day and a half. My day started on Thursday with a Pet Scan before my meeting with my treatment team. It was a pain in the ass, having to remain motionless with my arms above my head for 40 minutes. However, it was done with and I just had time to kill for a few hours. It wasn't so bad wasting time at the hospital. It was still early in the day and I was feeling well.
At 1:30 my Dad and Kate met up with me for my appointment. Things started off well, but again the team took a bit longer than expected to come back in. Kate began to feel nervous again about their news.
When they came back in, her thoughts were correct. The results of the Pet Scan showed signs of cancer on a right rib and at the bottom of my left lung. This was a change from what the doctors were expecting and what I went through the first time around with treatment. It was explained that my treatment plan needed to change now that the cancer was not isolated to the mediastinum. If the cancer was isolated to one spot, it would be easy to treat with radiation to eliminate it. Their is no connection between the lymphatic system and the bones, so it was explained that the cancer had to have spread through the blood. Even if the chemotherapy gets rid of the cancer activity in the rib and lung areas, it is presumed that ther could be small traces of cancer cells anywhere in the body at this point. Therefore the radiation process will be of no use, and the secondary intervention after the chemotherapy will be a bone marrow transplant.
This is the first time that a bone marrow transplant has been brougt up, so its not something I know a lot about yet. There are two general types of transplants that are used...autologus and allogeneic. My lead physician met with us and explained that while my current tumor looks like Hodgkins disease, he would not treat it like that. A HD relapse would usually be treated with an autologus transplant, which uses my own stem cells. His belief after watching how my tumor has attacked my body is that this treatment would not work.
So an allogeneic transplant, of which there are two options, is being pursued. I had my blood drawn last night to be used to find a match. With these type of bone marrow transplants, there is about a 25 percent chance that a sibling would be a match. 1 in 4 ain't bad...however, I have 4 siblings who because of adoption will not be matches. My dad helped me get papers in today to the courts to contact my birth mother. From the history I know about, it seems unlikely that my birth-parents would have had another child together. My doctor was not optimistic that a half sibling would have any better a chance of matching than anybody else in the general bone marrow donor pool. My brother Mike, people at my dad's workplace, and Kate's dad have already asked about getting tested to be a donor. Its unlikely that anybody who signs up now would a match for me, but I'll probably be relying on somebody who signed up for another person. So I'd encourage anybody who feels the desire to help anybody with this type of condition to become a potential bone marrow donor.
What I was told is that although the transplant takes just a few hours like a simple blood transfusion, the hospital stay will likely last from two weeks to forty days. Thats a hell of a lot of time to spend away from home. I spent 3 nights in the hospital back in January, and I felt like I was losing my mind then. So I can't imagine being away from home and Isaiah that long. However, its what I'll have to do. Kate and I will manage, however, I know it will be hard on her to not have me around.
The good news from yesterday is that I was able to get started on chemo. The change of plans from radiation to bone marrow transplant means an increase from two rounds of chemo to probably four. It is supposed to take three months for the transplant to fall in line, so the doctors want me to remain in treatment up until that point. Hopefully the EPOCH-C treatment will do in this tumor like the EPOCH-R did the first one. I took the Campath last night and had chills and a fever. My temperature went over 102 at one point, but came down fairly quickly over the next few hours. I didn't sleep for a few hours despite being exhausted. However, knowing how the chemo makes me feel I have no worries about sleeping a lot over the next few days. The doctors felt that my response to the Campath was pretty normal. Some people get a really bad rash as well with the infusion, but I seem to have avoided that. I was also told by my research nurse that the side effects don't always come back with the other rounds of Campath infusion. So if last night was as bad as it gets with this treatment, then I'll be much pleased.
After the Campath I got hooked up to the EPOCH. The EPOCH treatment is outpatient, which allows me to be at home with a daily bag refill every 24 hours for the next four days. It felt great to be home and see Isaiah tonight and to have dinner with Kate and my parents on the deck. It beats sitting in a small, uncomfortable hospital bed and eating the same food over and over again. So I'm back to taking one day at a time. The long term plan has changed, but I still have to take one day at a time and get through this with a great attitude. Thanks for all of the support from everybody who has read and commented. All of the prayers and well wishes definitely help the family and I out.
Finally back at home after a very long day and a half. My day started on Thursday with a Pet Scan before my meeting with my treatment team. It was a pain in the ass, having to remain motionless with my arms above my head for 40 minutes. However, it was done with and I just had time to kill for a few hours. It wasn't so bad wasting time at the hospital. It was still early in the day and I was feeling well.
At 1:30 my Dad and Kate met up with me for my appointment. Things started off well, but again the team took a bit longer than expected to come back in. Kate began to feel nervous again about their news.
When they came back in, her thoughts were correct. The results of the Pet Scan showed signs of cancer on a right rib and at the bottom of my left lung. This was a change from what the doctors were expecting and what I went through the first time around with treatment. It was explained that my treatment plan needed to change now that the cancer was not isolated to the mediastinum. If the cancer was isolated to one spot, it would be easy to treat with radiation to eliminate it. Their is no connection between the lymphatic system and the bones, so it was explained that the cancer had to have spread through the blood. Even if the chemotherapy gets rid of the cancer activity in the rib and lung areas, it is presumed that ther could be small traces of cancer cells anywhere in the body at this point. Therefore the radiation process will be of no use, and the secondary intervention after the chemotherapy will be a bone marrow transplant.
This is the first time that a bone marrow transplant has been brougt up, so its not something I know a lot about yet. There are two general types of transplants that are used...autologus and allogeneic. My lead physician met with us and explained that while my current tumor looks like Hodgkins disease, he would not treat it like that. A HD relapse would usually be treated with an autologus transplant, which uses my own stem cells. His belief after watching how my tumor has attacked my body is that this treatment would not work.
So an allogeneic transplant, of which there are two options, is being pursued. I had my blood drawn last night to be used to find a match. With these type of bone marrow transplants, there is about a 25 percent chance that a sibling would be a match. 1 in 4 ain't bad...however, I have 4 siblings who because of adoption will not be matches. My dad helped me get papers in today to the courts to contact my birth mother. From the history I know about, it seems unlikely that my birth-parents would have had another child together. My doctor was not optimistic that a half sibling would have any better a chance of matching than anybody else in the general bone marrow donor pool. My brother Mike, people at my dad's workplace, and Kate's dad have already asked about getting tested to be a donor. Its unlikely that anybody who signs up now would a match for me, but I'll probably be relying on somebody who signed up for another person. So I'd encourage anybody who feels the desire to help anybody with this type of condition to become a potential bone marrow donor.
What I was told is that although the transplant takes just a few hours like a simple blood transfusion, the hospital stay will likely last from two weeks to forty days. Thats a hell of a lot of time to spend away from home. I spent 3 nights in the hospital back in January, and I felt like I was losing my mind then. So I can't imagine being away from home and Isaiah that long. However, its what I'll have to do. Kate and I will manage, however, I know it will be hard on her to not have me around.
The good news from yesterday is that I was able to get started on chemo. The change of plans from radiation to bone marrow transplant means an increase from two rounds of chemo to probably four. It is supposed to take three months for the transplant to fall in line, so the doctors want me to remain in treatment up until that point. Hopefully the EPOCH-C treatment will do in this tumor like the EPOCH-R did the first one. I took the Campath last night and had chills and a fever. My temperature went over 102 at one point, but came down fairly quickly over the next few hours. I didn't sleep for a few hours despite being exhausted. However, knowing how the chemo makes me feel I have no worries about sleeping a lot over the next few days. The doctors felt that my response to the Campath was pretty normal. Some people get a really bad rash as well with the infusion, but I seem to have avoided that. I was also told by my research nurse that the side effects don't always come back with the other rounds of Campath infusion. So if last night was as bad as it gets with this treatment, then I'll be much pleased.
After the Campath I got hooked up to the EPOCH. The EPOCH treatment is outpatient, which allows me to be at home with a daily bag refill every 24 hours for the next four days. It felt great to be home and see Isaiah tonight and to have dinner with Kate and my parents on the deck. It beats sitting in a small, uncomfortable hospital bed and eating the same food over and over again. So I'm back to taking one day at a time. The long term plan has changed, but I still have to take one day at a time and get through this with a great attitude. Thanks for all of the support from everybody who has read and commented. All of the prayers and well wishes definitely help the family and I out.
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