Belinostat not working.
Sorry it's been so long. We have really been on the run. We hope we are not making mistakes in being exposed to so many people lately. We went on a 10 day camp trip with 25 different people coming and going. It was so great to be with our kids except Nolan who was in CA building his new business.
As far as my health...it's really hard to sum that up right now. Essentially we've decided the Belinostat isn't working. I have the IVs for 5 days, feel terrible most of that week and a few days afterward but the "constitutional symptoms" do subside. The swelling in my throat that makes it hard to sleep improves. My wrists get to look more normal and I've even been able to wear rings. But...by the 2nd week off, the symptoms start to come back, often with very weird and varied aches and pains. It can be a swollen and painful knee this round or swollen ankles or toes another. Additionally, I am getting patches of what could be the cutaneous form of AITL.
Last week I ended up really really miserable and went for a PET scan. The great news is that there doesn't appear to be any huge growth in lymph nodes throughout my body. I would not have been surprised because the ones I've always felt seemed to be really big to me. On the other hand, I am showing the tale tale signs of T-Cell Lymphomas with all the troublesome symptoms.
Prednisone is like a miracle drug, taking down inflammation and pain like magic. The natural remedies are all so subtle...when I'm really in pain, it doesn't feel like any foods/supplements/interventions really do the trick...
I didn't take any Prednisone the last couple times between treatment so we could really evaluate the treatment. I've resorted to it this week until I see the T-Cell Lymphoma guy (Dr. Haverkos) in Denver this Monday. The oncologist in Colorado Springs told me he will be offering me a clinical trial of a drug that the specialist in Seattle already suggested for me: Romedpsin, + another drug that I can't find any info on yet. They will have to convince me that there are reasons this is indicated for me, personally. And...I plan to do lots of research because I find these doctors don't often focus on your quality of life during and/or after treatment. They are just focused on dealing with the cancer. I know I frustrate them but my taking my time (to spite the "science") has paid off for me so far. We will see.
On the other hand, if this could be a path to remission, it could be exciting (Romedpsin on it's own is like Belinostat - just to keep the lymphoma under control and mitigate symptoms).
I am working some this summer, mainly to ensure that my students have access to counseling and guidance. Boy oh boy has it been humbling to hear what they are dealing with. Students who abruptly were shut in to learn such things as calculus and engineering physics and biochemistry with labs - from home with often terrible internet and 1 computer for several family members. Or the student who told me she was trying to do her classes only with her phone; she got a job this summer to get a laptop to ensure her brother would be OK in high school. Notice, she will also use the computer but she was most concerned about him. The stories go on and on.
Anyhow, I hope you are yours are well and coping though the trials. Thank you to those of you who reached out to check on me since I haven't posted here in so long. Your love, prayers, and care have made ALL THE DIFFERENCE for me this 3+ years. Hugs!
As far as my health...it's really hard to sum that up right now. Essentially we've decided the Belinostat isn't working. I have the IVs for 5 days, feel terrible most of that week and a few days afterward but the "constitutional symptoms" do subside. The swelling in my throat that makes it hard to sleep improves. My wrists get to look more normal and I've even been able to wear rings. But...by the 2nd week off, the symptoms start to come back, often with very weird and varied aches and pains. It can be a swollen and painful knee this round or swollen ankles or toes another. Additionally, I am getting patches of what could be the cutaneous form of AITL.
Last week I ended up really really miserable and went for a PET scan. The great news is that there doesn't appear to be any huge growth in lymph nodes throughout my body. I would not have been surprised because the ones I've always felt seemed to be really big to me. On the other hand, I am showing the tale tale signs of T-Cell Lymphomas with all the troublesome symptoms.
Prednisone is like a miracle drug, taking down inflammation and pain like magic. The natural remedies are all so subtle...when I'm really in pain, it doesn't feel like any foods/supplements/interventions really do the trick...
I didn't take any Prednisone the last couple times between treatment so we could really evaluate the treatment. I've resorted to it this week until I see the T-Cell Lymphoma guy (Dr. Haverkos) in Denver this Monday. The oncologist in Colorado Springs told me he will be offering me a clinical trial of a drug that the specialist in Seattle already suggested for me: Romedpsin, + another drug that I can't find any info on yet. They will have to convince me that there are reasons this is indicated for me, personally. And...I plan to do lots of research because I find these doctors don't often focus on your quality of life during and/or after treatment. They are just focused on dealing with the cancer. I know I frustrate them but my taking my time (to spite the "science") has paid off for me so far. We will see.
On the other hand, if this could be a path to remission, it could be exciting (Romedpsin on it's own is like Belinostat - just to keep the lymphoma under control and mitigate symptoms).
I am working some this summer, mainly to ensure that my students have access to counseling and guidance. Boy oh boy has it been humbling to hear what they are dealing with. Students who abruptly were shut in to learn such things as calculus and engineering physics and biochemistry with labs - from home with often terrible internet and 1 computer for several family members. Or the student who told me she was trying to do her classes only with her phone; she got a job this summer to get a laptop to ensure her brother would be OK in high school. Notice, she will also use the computer but she was most concerned about him. The stories go on and on.
Anyhow, I hope you are yours are well and coping though the trials. Thank you to those of you who reached out to check on me since I haven't posted here in so long. Your love, prayers, and care have made ALL THE DIFFERENCE for me this 3+ years. Hugs!
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