Looks like we start Belinostat
Dr. Haverkos just called. I do not qualify for the clinical trial unless I have tried another treatment like chemo and it didn't work. So...it appears we start Belinostat. I tried to schedule that appointment with Dr. Ann Mallot at Memorial Health in Colorado Springs but they don't have the referral yet - so I wait for their call but we should start it soon. 5 days of IVs and then 16 days off. This will go on indefinitely. I have to do it all in one clinic so I can't go back and forth to California. Fatigue and anemia is still a side effect which has made working kind of crazy, so I don't expect to go back to work any time soon. Of course there are more possible side effects but...I've got to do something and this appears to be the least toxic at this point.
Of a bit of concern; my immune system is already suppressed because of lymphoma (although I have been happy with how I've fought off colds and such these 3 years). It is then more suppressed because I am taking prednisone (although only for 5 days). Now, Belinostat suppresses the immune system more, treating the lymphoma like something of an autoimmune disease.
Cameron, our oldest son, is a firefighter. He shared with me this morning that one of the things they are watching for is a cytokine storm in patients. Dr. Shustov warned that, should the capillary leak syndrome I am showing signs of escalates, a storm would be the worst case. I guess it would be bad for me to get the coronavirus. We are pretty isolated right now except we continue to see our kids and grandkids who are also somewhat isolated except for Cam as a 1st responder. We're being cautious but not paranoid.
He told me today that they are taking very novel precautions at work. For example, if they go to a rescue mission or the like, the security guard has to go get the patient to come outside with a mask. If they go to a nursing home, they have to fully gown up with the goggles and all. On other calls, they try to have patients come outside and, for the first time in history, they are denying patients from going to the hospital unless they meet very strict criteria.
I asked Dr. Haverkos about our concerns and he said that, in terms of treatment for AITL, we are not going into deep waters with the immune suppression. He is a person who downplays all the risks of treatment. A friend who went to him for treatment (she was so ill she had no choice but to do the full chemo right away). Her heart is damaged so she was advised not to do the transplant. She developed nerve damage and drop foot. She has physical therapy and other treatments to try to get muscle mass back and her bone mass is seriously low so now she is trying to treat that with natural substances, exercise, and will possibly start drugs. All of this is from the chemo. Dr. Haverkos likes to assert that it is almost always perfectly safe and side effects are reversible. I suspect he is one of these oncologists who treats people and doesn't see the aftermath closely enough to really get a good idea of how people's lives change. He is happy to save their lives, understandably. But it is a problem with specialists that they often don't see the whole person in the equation. This is where Dr. Shustov in Seattle seems to be very different.
I feel pretty good about where we are at. I need a plan. I need to know what to expect. I, like the whole world, feel like we are at a standstill without being able to plan into the future. What a strange strange time. Eyes on Christ and living in the moment.
Love and health to you!
Of a bit of concern; my immune system is already suppressed because of lymphoma (although I have been happy with how I've fought off colds and such these 3 years). It is then more suppressed because I am taking prednisone (although only for 5 days). Now, Belinostat suppresses the immune system more, treating the lymphoma like something of an autoimmune disease.
Cameron, our oldest son, is a firefighter. He shared with me this morning that one of the things they are watching for is a cytokine storm in patients. Dr. Shustov warned that, should the capillary leak syndrome I am showing signs of escalates, a storm would be the worst case. I guess it would be bad for me to get the coronavirus. We are pretty isolated right now except we continue to see our kids and grandkids who are also somewhat isolated except for Cam as a 1st responder. We're being cautious but not paranoid.
He told me today that they are taking very novel precautions at work. For example, if they go to a rescue mission or the like, the security guard has to go get the patient to come outside with a mask. If they go to a nursing home, they have to fully gown up with the goggles and all. On other calls, they try to have patients come outside and, for the first time in history, they are denying patients from going to the hospital unless they meet very strict criteria.
I asked Dr. Haverkos about our concerns and he said that, in terms of treatment for AITL, we are not going into deep waters with the immune suppression. He is a person who downplays all the risks of treatment. A friend who went to him for treatment (she was so ill she had no choice but to do the full chemo right away). Her heart is damaged so she was advised not to do the transplant. She developed nerve damage and drop foot. She has physical therapy and other treatments to try to get muscle mass back and her bone mass is seriously low so now she is trying to treat that with natural substances, exercise, and will possibly start drugs. All of this is from the chemo. Dr. Haverkos likes to assert that it is almost always perfectly safe and side effects are reversible. I suspect he is one of these oncologists who treats people and doesn't see the aftermath closely enough to really get a good idea of how people's lives change. He is happy to save their lives, understandably. But it is a problem with specialists that they often don't see the whole person in the equation. This is where Dr. Shustov in Seattle seems to be very different.
I feel pretty good about where we are at. I need a plan. I need to know what to expect. I, like the whole world, feel like we are at a standstill without being able to plan into the future. What a strange strange time. Eyes on Christ and living in the moment.
Love and health to you!
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