In some ways having cancer is very simple: It is a serious disease that invades your body and, in most instances, will end your life if not treated effectively. In that sense it is very simple. But in other ways having cancer is a very complex and daunting series of factors, many of which are interrelated and most of which are continually changing. When viewed from this prespective, cancer can potentially become overwhelming. How each patient deals with his or her own situation is a totally individual approach.
At the present time there are five main aspects of my disease that I tend to focus on. Everything else is either not a current issue in my case, or it is beyond my ability to impact, in which case I simply give it to The Lord God Almighty to deal with.
My first aspect is the cancer itself. I am being treated with a chemo drug called Romidepsin, which I trust is doing a good job of eradicating all the cancer cells in my body. Unfortunately it takes time for progress to be detectable, so I will not receive any reassessment testing/scans for 8 weeks. Depending on the reassessment results, I expect to receive this treatment for probably the next 6 months. In the meantime I just need to trust that my team is winning. Unfortunately, this drug is causing certain side effects that were not present with some of my earlier drugs. The main ones are cold chills at night and my sense of taste is getting all beaten up.
The second aspect is my lower back and spine area, which is where the initial tumor was detected. While the tumor itself has been effectively dealt with, and is no longer a direct factor, the residual damage it caused is taking time to heal and rehab. We were making good progress up until my treatment last Tuesday when a small but ill-timed movement of the exam table caused me to strain and reinjure some muscles, and set me back a few weeks in that area. But I can already tell that the recovery has started, so I just need to be sure to avoid small and ill-timed movements.
The third aspect is the strength and flexibility of my right leg. The tumor caused spinal nerve pressure in my right leg and the resulting pain and lack of use are still impacting my movement and mobility. I am being treated by a Physical Therapist who really seems to know what he is doing and progress is definitely being made, although it was put on hold temporarily after last Tuesday's back problem.
I would say without question that the biggest factor currently affecting my daily life is fatigue. During my first round of cancer treatments, fatigue was my constant companion from day one, and seemed fairly consistent, rated most of the time as a 4 on a 10 scale (1 being no fatigue and 10 being extreme). This time around it seems to be at about a 7 or 8. Getting dressed in the morning is exhausting. Fixing a sandwich in the kitchen for lunch is taxing. The fatigue is a natural side effect of cancer, and results from many chemotherapy drugs. Romidepsin in particular can cause extreme fatigue in some patients.
The final aspect would be my mental outlook. I am a fairly positive glass-half-full kind of guy to start with. And I tend to apply about 110% effort to whatever tasks I undertake. Because of the implications of this battle I may have jacked up the bar to about 125%. That coupled with my strong faith in my Heavenly Father, and I am not too concerned with the long term outcome of my present battle. But I find that this second set of treatments are requiring more effort to stay positive. My pain and discomfort, extreme fatigue and some added side effects, all being present 24/7 since before Christmas, are adding to my mental challenge. But I also believe that the back and leg pain, and the mobility issues will be resolved in the next several weeks. That should provide an added big boost.
Friday, March 21, 2014
Friday, March 14, 2014
Treatment #2
Last Tuesday was my second Romidepsin treatment and it seems to have gone a little better than the first one. No nighttime chills and fever spikes, and the next-day-blahs didn't last as long. But I did still have a drained feeling, and my sense of taste suffered for a couple of days, but then returned to normal. Overall not as bad as the first time around, so maybe my body is adapting to this new chemo drug. If this is as bad as it gets, I'll consider myself lucky and focus on other things.
My blood tests revealed that my platelet count had dropped very low, so after my Romidepsin on Tuesday, I was treated to a platelet infusion for desert. A low platelet count means that your blood does not clot as efficiently and quickly as normal, and the implications of this can be quite severe. Hopefully by my next treatment the counts will be closer to normal.
On Thursday I had my second Physical Therapy session, and got introduced to a series of exercises that I need to incorporate into my daily routine. My extended period of inactivity, while undergoing radiation treatments and enduring significant back and leg pain, left my muscles weak and my stamina quite low. Now I begin the slow but necessary process of rebuilding my strength and endurance. Without question the most important thing I can do for myself (and my family) right now is faithfully follow the exercise routine that has been developed for me. The resulting impact on my quality of life will be well worth whatever effort is required.
Unfortunately the exercises will not have much direct effect on the fatigue, which is a normal result of cancer and chemotherapy. I know from my past experience that fatigue is just something that a cancer patient must learn to live with. Only time will tell how much of my current fatigue is the result of past inactivity and how much is drug induced.
My third treatment is next Tuesday and then I get a week off for rest and recovery. That will complete cycle 1 and by then I will hopefully have a better feeling for how I react to this new chemotherapy treatment. Most likely my cancer will not be reassessed (including scans) until after the second cycle. So until then we just try to make the best of life with Peripheral T-Cell Lymphoma, and appreciate the richness and fullness that exists in the other aspects of our lives. As I have said before, I may have cancer, but I will not allow it to control and define my life.
My blood tests revealed that my platelet count had dropped very low, so after my Romidepsin on Tuesday, I was treated to a platelet infusion for desert. A low platelet count means that your blood does not clot as efficiently and quickly as normal, and the implications of this can be quite severe. Hopefully by my next treatment the counts will be closer to normal.
On Thursday I had my second Physical Therapy session, and got introduced to a series of exercises that I need to incorporate into my daily routine. My extended period of inactivity, while undergoing radiation treatments and enduring significant back and leg pain, left my muscles weak and my stamina quite low. Now I begin the slow but necessary process of rebuilding my strength and endurance. Without question the most important thing I can do for myself (and my family) right now is faithfully follow the exercise routine that has been developed for me. The resulting impact on my quality of life will be well worth whatever effort is required.
Unfortunately the exercises will not have much direct effect on the fatigue, which is a normal result of cancer and chemotherapy. I know from my past experience that fatigue is just something that a cancer patient must learn to live with. Only time will tell how much of my current fatigue is the result of past inactivity and how much is drug induced.
My third treatment is next Tuesday and then I get a week off for rest and recovery. That will complete cycle 1 and by then I will hopefully have a better feeling for how I react to this new chemotherapy treatment. Most likely my cancer will not be reassessed (including scans) until after the second cycle. So until then we just try to make the best of life with Peripheral T-Cell Lymphoma, and appreciate the richness and fullness that exists in the other aspects of our lives. As I have said before, I may have cancer, but I will not allow it to control and define my life.
Thursday, March 6, 2014
Day 1 Cycle 1
Last Tuesday we left home at 7:45 AM for our visit to Duke, and walked back in the house about 7:30 PM. It seems like that may be our "normal" day for treatment days in Durham. The morning bloodwork revealed that several of my counts are running low, white cell count, red cell count and platelet count. The reason for the drops is not clear and we will need to monitor them closely. If the platelet count drops much further I might need to start blood transfusions to avoid potential clotting problems.
In the early afternoon I was introduced to Romidepsin, my new chemotherapy drug. The treatment starts off with a couple of premeds, and then the main course is served over a 4 hour infusion. Sitting in that treatment chair for 5 straight hours is not a highly recommended way to spend an afternoon. While my past experience with chemotherapy drugs has been quite good, in terms of avoiding side effects, Romidepsin may prove to be a different animal. Immediately after the infusion I felt very blah and drained. I climbed into bed with a headache, and began having chills. The thermometer registered 101.3, and a quick call to the oncologist-on-call suggested we watch it and head to the ER if it continued to increase. Fortunaly it passed after a short time and the night was restful. In the morning the blahs and aches and pains had returned, but over the next couple of hours I began to feel better, and by early afternoon was more "normal'. Today has been much better and hopefully my negative reactions were just an introductory experience, not to be repeated after each treatment. Time will tell.
On Wednedsay I had my initial Physical Therapy session, just what I needed the day after a treatment. A plan was developed to hopefully restore 100% of the strength and functioning in my right leg and the exercises have begun. During a PET/CT scan last week it was revealed that I have a new compression fracture in my L3 vertabre, most likely caused by the tumor. Whether that will be the source of ongoing difficulties remains to be determined.
All in all the last few days have been busy and eventful. Hopefully the reactions after the Romidepsin were not typical, but if they prove typical we will just have to avoid any scheduled activities for the next day. The blood counts may infact improve after a few treatments so time will tell us the answer on that front. Seems like a lot of waiting and watching lie ahead but such is the life of a cancer patient going through treatments. Fortunately I know that My Heavenly Father is with me every step of the way so I'm putting all my faith and hope in Him. That makes sleeping at night so much easier.
In the early afternoon I was introduced to Romidepsin, my new chemotherapy drug. The treatment starts off with a couple of premeds, and then the main course is served over a 4 hour infusion. Sitting in that treatment chair for 5 straight hours is not a highly recommended way to spend an afternoon. While my past experience with chemotherapy drugs has been quite good, in terms of avoiding side effects, Romidepsin may prove to be a different animal. Immediately after the infusion I felt very blah and drained. I climbed into bed with a headache, and began having chills. The thermometer registered 101.3, and a quick call to the oncologist-on-call suggested we watch it and head to the ER if it continued to increase. Fortunaly it passed after a short time and the night was restful. In the morning the blahs and aches and pains had returned, but over the next couple of hours I began to feel better, and by early afternoon was more "normal'. Today has been much better and hopefully my negative reactions were just an introductory experience, not to be repeated after each treatment. Time will tell.
On Wednedsay I had my initial Physical Therapy session, just what I needed the day after a treatment. A plan was developed to hopefully restore 100% of the strength and functioning in my right leg and the exercises have begun. During a PET/CT scan last week it was revealed that I have a new compression fracture in my L3 vertabre, most likely caused by the tumor. Whether that will be the source of ongoing difficulties remains to be determined.
All in all the last few days have been busy and eventful. Hopefully the reactions after the Romidepsin were not typical, but if they prove typical we will just have to avoid any scheduled activities for the next day. The blood counts may infact improve after a few treatments so time will tell us the answer on that front. Seems like a lot of waiting and watching lie ahead but such is the life of a cancer patient going through treatments. Fortunately I know that My Heavenly Father is with me every step of the way so I'm putting all my faith and hope in Him. That makes sleeping at night so much easier.
Monday, March 3, 2014
Can you say Romidepsin ?
Last week was spent completing various testing and reviewing treatment options. There was one specific clinical trial that seemed to be the most interesting for my particular situation. One problem that was identified during my testing was the fact that some of my blood counts are lower than normal, probably as a result of the earlier radiation treatments, and did not meet the minimum requirements for the clinical trial. If we had decided to wait a few more weeks for these counts to increase, I would probably get accepted into the trial. But it has been 2 months since my initial diagnosis and further delay in starting treatment just did not seem a desirable approach. So I withdrew my application for the clinical trial, which is still a potential option sometime in the future, and have elected to begin treatment under a different protocol.
Tomorrow (Tuesday) I will receive my first infusion of a drug called Romidepsin. Unlike my last chemotherapy treatment, which involved a cocktail of 5 different drugs, this treatment will only involve this one drug. The infusion takes 4 hours to complete and is administered over a 4 week cycle. Weeks 1, 2 and 3 involve an infusion and week 4 is an off week, or recovery week. At that point the cycle repeats. I am not sure yet as to the schedule for reassessment testing, nor how many cycles are expected to reach completion. Obviously, everything is dependent on how the disease reacts to Romidepsin, and that remains to be seen.
One other unknown is how my body will react to this new chemotherapy treatment. Only receiving 1 drug instead of 5 will likely minimize the chances of a negative reaction. My experience during my earlier chemo treatments, and the bone marrow transplant process, was quite positive, with very few side effects. I am hopeful that my history of being able to withstand the rigors of these chemotherapy drugs will continue, and my reaction will be quite minimal. But each drug is different so we will just have to see how things go over the next few weeks.
I can think of numerous other things that I would prefer to do tomorrow, rather than drive 1 1/2 hours to Duke Cancer Center, and spend 4 hours having a poisonous drug pumped into my bloodstream. But I have cancer. I don't like the fact that this monster has invaded my body and is intent on ending my life. But I must face the reality of things. So the sooner this treatment process gets started, the sooner my cancer begins receiving the treatments that will completely eradicate it.
Tomorrow (Tuesday) I will receive my first infusion of a drug called Romidepsin. Unlike my last chemotherapy treatment, which involved a cocktail of 5 different drugs, this treatment will only involve this one drug. The infusion takes 4 hours to complete and is administered over a 4 week cycle. Weeks 1, 2 and 3 involve an infusion and week 4 is an off week, or recovery week. At that point the cycle repeats. I am not sure yet as to the schedule for reassessment testing, nor how many cycles are expected to reach completion. Obviously, everything is dependent on how the disease reacts to Romidepsin, and that remains to be seen.
One other unknown is how my body will react to this new chemotherapy treatment. Only receiving 1 drug instead of 5 will likely minimize the chances of a negative reaction. My experience during my earlier chemo treatments, and the bone marrow transplant process, was quite positive, with very few side effects. I am hopeful that my history of being able to withstand the rigors of these chemotherapy drugs will continue, and my reaction will be quite minimal. But each drug is different so we will just have to see how things go over the next few weeks.
I can think of numerous other things that I would prefer to do tomorrow, rather than drive 1 1/2 hours to Duke Cancer Center, and spend 4 hours having a poisonous drug pumped into my bloodstream. But I have cancer. I don't like the fact that this monster has invaded my body and is intent on ending my life. But I must face the reality of things. So the sooner this treatment process gets started, the sooner my cancer begins receiving the treatments that will completely eradicate it.
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