Processing info from new biopsies
Hi there.
Over a month ago, I had lymph nodes taken from my neck and a bone marrow biopsy to confirm or modify the diagnosis, send tissue to Dr. Nagourney in Long Beach, and to see if the cancer had spread to the bone marrow.
The great news - it is not in the bone marrow. I am so very relieved. To me, this means I still have time to figure this out, with God's leading. I don't have to panic. When people ask for advice with cancer, that is my only real advice. Don't panic or rush, like the system wants you to. It took years to get here - you have time to think, pray, read, research, and learn.
We met with Dr. Nagourney. I was a bit anxious because I know he is essentially a conventional oncologist who focuses on testing people's tissues to decide on what drugs to use to deal with cancer. He usually works with people who are desperate for answers after exhausting all other avenues.
He immediately stated in the meeting that his "gestalt thoughts about my condition" is that I am misdiagnosed. I do have a T-Cell Lymphoma but, because of what he and the pathologist saw under the microscope, he feels I have Follicular T- Helper Cell Lymphoma. He made it seem like I don't have a problem anymore. He says the prognosis is so much better yet all the literature I find says it is pretty much the same as what they said I had before. He feels an immune-theraputic drug like Optivo (Nivolumab), which was offered to me along with the 5 drug chemo regimen, CHOEP, as a clinical trial, could take care of me. If not, he claims that there is no harm, no foul - just switch to chemo. Of course, with a bit more research, the immunotherapy drugs are as innocuous as he indicated.
His testing shows I should respond well to chemo, but he suggests a completely different regimen than CHOEP. Interestigly, his official written report says nothing about the immunotherapy drug option and, since I am not finding clinical trials, it's unlikely I will have that option alone. I also found info on the Nivolumab site that using a PD-1 receptor blocker (immunotherapy drug) could make a future transplant more dangerous; a transplant is the only way conventional medicine sees that I can be "cured."
I also spoke with Dr. Block in Chicago at the Block Center. He wants me to take all this info to a specialist, Dr. Jayesh Mehta at NorthWestern, to see what he thinks will get me into remission.
I've been feeling very rough, especially in the evenings. My hands painfully swell, my ankles swell up and I limp, the back of my knees swell and make it hard to stand up straight. I sometimes get terrible and then I know that I just have to go to bed because I feel like I have the full-blown flu. I usually feel better in the morning. My joints are always "squishy" to the touch - very weird. My throat is always swollen and I sound like I have a cold. The CT scan a few months back show my mucous membranes are all inflamed. The T-Cell Lymphoma specialist said all these are signs he sees in others with PTCL, peripheral t-cell lymphomas. My sister found an article about how a rare result of these lymphomas is a particular kind of arthritis, which I apparently have but clears up with treatment. I sure hope so.
Then I went to see Dr. West in Boulder, who I trust with supplements and diet and such. She is very up-to-date and focuses solely on cancer. After going over it all with her, I think a 6 month plan is materializing.
Finish teaching my classes and getting MESA set-up for the semester and do STEM Week.
Take time off to treat the EBV virus. I plan an aggressive treatment in Nov. that promises at least 10 days - 2 weeks of an uncomfortable rash among other issues.
Go to True North for 30 days or so, hopefully starting in November. I am scheduled to go Dec. 8 but then I would miss all the holidays. I so hope that isn't necessary. This is for a medically supervised water-only fast for about 21 of the days. Other cases of lymphoma have gone into remission by doing this.
4 - 6 Weeks later, new PET scan and labs to evaluate where I am.
If I am not in remission, I will go to see a specialist at North Western with my entire history for his advice. He will probably suggest chemo to get into remission.
If he agrees with Dr. Nagourney and others, that chemo is the only way for me to get into remission, I will probably start chemo. If I do what Dr. N suggested (GemOx), it would be twice monthly, for 10 months. I discussed why I would come to Chicago to do it with Dr. Block who claims chronomodulated chemo is at least twice as effective and less toxic than doing it otherwise. I told him I would also combine it with fasting after reading so much about the protective effects of fasting during chemo. I'm convinced he is great but, once he got his protocols in place a decade or two ago, that he hasn't been keeping up with the newer science. That's why I still have other resources.
Finally, we received the final diagnosis yesterday, after City of Hope looked at my tissues; they agree with the pathologist at Long Beach Memorial and Dr. Nagourney. Follicular Lymphoma with T-Helper Cell Phenotype. Again, when I look it up, it appears very similar or a subset of AITL.
I guess, after rereading this, that would really be about a year and a half "plan." It would be amazing if my stay at True North and cleaning up the EBV did the trick and I could skip the chemo. That's what I'll be praying for. We will see...
Over a month ago, I had lymph nodes taken from my neck and a bone marrow biopsy to confirm or modify the diagnosis, send tissue to Dr. Nagourney in Long Beach, and to see if the cancer had spread to the bone marrow.
The great news - it is not in the bone marrow. I am so very relieved. To me, this means I still have time to figure this out, with God's leading. I don't have to panic. When people ask for advice with cancer, that is my only real advice. Don't panic or rush, like the system wants you to. It took years to get here - you have time to think, pray, read, research, and learn.
We met with Dr. Nagourney. I was a bit anxious because I know he is essentially a conventional oncologist who focuses on testing people's tissues to decide on what drugs to use to deal with cancer. He usually works with people who are desperate for answers after exhausting all other avenues.
He immediately stated in the meeting that his "gestalt thoughts about my condition" is that I am misdiagnosed. I do have a T-Cell Lymphoma but, because of what he and the pathologist saw under the microscope, he feels I have Follicular T- Helper Cell Lymphoma. He made it seem like I don't have a problem anymore. He says the prognosis is so much better yet all the literature I find says it is pretty much the same as what they said I had before. He feels an immune-theraputic drug like Optivo (Nivolumab), which was offered to me along with the 5 drug chemo regimen, CHOEP, as a clinical trial, could take care of me. If not, he claims that there is no harm, no foul - just switch to chemo. Of course, with a bit more research, the immunotherapy drugs are as innocuous as he indicated.
His testing shows I should respond well to chemo, but he suggests a completely different regimen than CHOEP. Interestigly, his official written report says nothing about the immunotherapy drug option and, since I am not finding clinical trials, it's unlikely I will have that option alone. I also found info on the Nivolumab site that using a PD-1 receptor blocker (immunotherapy drug) could make a future transplant more dangerous; a transplant is the only way conventional medicine sees that I can be "cured."
I also spoke with Dr. Block in Chicago at the Block Center. He wants me to take all this info to a specialist, Dr. Jayesh Mehta at NorthWestern, to see what he thinks will get me into remission.
I've been feeling very rough, especially in the evenings. My hands painfully swell, my ankles swell up and I limp, the back of my knees swell and make it hard to stand up straight. I sometimes get terrible and then I know that I just have to go to bed because I feel like I have the full-blown flu. I usually feel better in the morning. My joints are always "squishy" to the touch - very weird. My throat is always swollen and I sound like I have a cold. The CT scan a few months back show my mucous membranes are all inflamed. The T-Cell Lymphoma specialist said all these are signs he sees in others with PTCL, peripheral t-cell lymphomas. My sister found an article about how a rare result of these lymphomas is a particular kind of arthritis, which I apparently have but clears up with treatment. I sure hope so.
Then I went to see Dr. West in Boulder, who I trust with supplements and diet and such. She is very up-to-date and focuses solely on cancer. After going over it all with her, I think a 6 month plan is materializing.
Finish teaching my classes and getting MESA set-up for the semester and do STEM Week.
Take time off to treat the EBV virus. I plan an aggressive treatment in Nov. that promises at least 10 days - 2 weeks of an uncomfortable rash among other issues.
Go to True North for 30 days or so, hopefully starting in November. I am scheduled to go Dec. 8 but then I would miss all the holidays. I so hope that isn't necessary. This is for a medically supervised water-only fast for about 21 of the days. Other cases of lymphoma have gone into remission by doing this.
4 - 6 Weeks later, new PET scan and labs to evaluate where I am.
If I am not in remission, I will go to see a specialist at North Western with my entire history for his advice. He will probably suggest chemo to get into remission.
If he agrees with Dr. Nagourney and others, that chemo is the only way for me to get into remission, I will probably start chemo. If I do what Dr. N suggested (GemOx), it would be twice monthly, for 10 months. I discussed why I would come to Chicago to do it with Dr. Block who claims chronomodulated chemo is at least twice as effective and less toxic than doing it otherwise. I told him I would also combine it with fasting after reading so much about the protective effects of fasting during chemo. I'm convinced he is great but, once he got his protocols in place a decade or two ago, that he hasn't been keeping up with the newer science. That's why I still have other resources.
Finally, we received the final diagnosis yesterday, after City of Hope looked at my tissues; they agree with the pathologist at Long Beach Memorial and Dr. Nagourney. Follicular Lymphoma with T-Helper Cell Phenotype. Again, when I look it up, it appears very similar or a subset of AITL.
I guess, after rereading this, that would really be about a year and a half "plan." It would be amazing if my stay at True North and cleaning up the EBV did the trick and I could skip the chemo. That's what I'll be praying for. We will see...
Praying always fir you dear Cathy. You got this!
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