We finally meet a true T-Cell Lymphoma Expert
Here is a detailed summary of our meeting with Dr. Andrea Shustov at the Seattle Cancer Care Alliance (SCCA). A huge thank you to my sister, Julie, for typing out the conversation while listening in via phone!!! It was a very fast 2 hours together.
If you just want the basic summary, scroll to the bold blue paragraph toward the end. (-:
I fully expected him to tell me I needed to jump into CHOEP or some other chemo regime, followed by a bone marrow transplant. I have absolutely dreaded this. It is all that has been offered by the famous City of Hope and 3 other oncologists. I know so many others who have gone through it (many on facebook that I've met over the past 3 years). People get through it but I would be going in with the knowledge that Periperal T-Cell Lymphoma's almost always relapse afterward. I went in praying that I would be the exception but knowing that this could be jumping into a world where I am at the mercy of drugs and other interventions that often lead to more and more need for medical intervention. And...the people I have met at the Cancer Center for Healing that have been through it and simply state that they will NEVER do it again - even if it means spending their life savings, their 401Ks, and even dying.
He gave some history of why chemo has been used for T-Cell Lymphoma, even though it hasn't worked. He affirmed how rare these lymphomas are so they haven't gotten the research attention, but now he and a consortium from around the globe are looking at it differently. He described the chemo regimes as "crude carpet bombing". He explained that they have been trying to think outside the box for the last 5 - 10 years. Just like I have been hearing in the "alternative" world, we may need to move toward the idea of managing cancer longterm, rather than killing it at the expense of the host (patient). He also explained that, if I went to 5 "experts," I'd get 5 different opinions. He explained how difficult it is to study-in fact, he asserts that we know so much now, through doctors sharing opinions and reasonable data, that we are putting patients through unnecessary misery if we continue to study chemo for certain cancers. Now, please be clear - he mentioned it and I've said it from the beginning - if they had given me better odds with treatment, it would have been much harder to go the path I've gone. Chemo and treatment are not the enemy - it's using treatments over and over that don't work that is crazy. The other piece of the puzzle, is that I have not been at death's door with this. I have met people who have - they had no real choice but to jump into treatment to save their lives, even for the short term. Chemo still works to knock down cancer and is sometimes the only option.
He taught me terms I didn't know before. Rather than look at survival statistics that relate to populations but we try to apply to individuals (think, "what is my chance of survival"), we need to think, "What is the number needed to treat" and "What is the number needed to harm." Let's say it takes 10 people for the 11th to get a positive response, is it sane to treat that way? What if you actually damage or kill the 5th person you treat (number needed to harm)? This could be a more accurate and sane way to make treatment decisions. And it's a more honest way to inform patients about treatment options. They have been treating people with T-Cell Lymphoma this way - hurting a lot of people and benefitting some. They are trying to find better ways.
He talked about how no one should tell us patients to do a transplant. We should be educated and then we should make an informed decision. I have been flat out told to do it by more than one doctor. He talked about how the europeans talk about it. He said they call it "High dose treatment with stem cell rescue," because that is what bone marrow transplant really is - taking the patient through very high chemotherapy to the place where they have no gut flora, no immune system, no bone marrow. Then they "rescue" the patient with a transplant of bone marrow from either another person or from the patient, harvested when they were in remission, hoping there were no virulent cancer cells living in the marrow. The person then has to go through all vaccinations and the process of rebuilding a completely non-existent immune system - very often with complications.
Now, imagine that same patient relapsing even as soon as 2 weeks after completing the process and being told they have to undergo treatment again with no immune system - this explains the high mortality rate with these cancers.
I interrupted the doctor at some point here with two questions. With the modified diagnosis last fall, do I still have PTCL/AITL. He explained that they are splitting subcategories into subcategories, which is what I thought I was understanding from online. Essentially, for the patient, this is the same - but they are finding new genetic information (genomics) for these subcategories that could inform treatment in the future.
Also, I asked if all the miserable symptoms I've having that are driving me to treatment are typical and if they will resolve with treatment. He said they are textbook and, yes, he expects them all to resolve. He said I have "Capilary Leak Syndrome" which is a Cytokine Release Syndrome, which is causing the weird and sometimes painful swelling in my joints. It's almost as if this lymphoma causes autoimmune disease where the body starts attacking itself, which explains so much.
He also educated us that lymphomas are "tumors of the immune system". Since our lymph glands are 90% of the immune system, it's tumors in our lymph glands, primarily. He said there is confusion because people classify it as a "blood cancer." This is not in the blood but the lymphocytes of the immune system are transported by the blood. The T-Cells are the "government or boss" of the immune system. When viruses or bacteria come into the system, the T-Cells tell everyone what to do. That's why it's so hard to treat. The T-Cells, the ones in charge, are the ones who are mutating and growing out of control. The immune system starts to attack the host - which, again, is causing a lot of my symptoms.
He also said they see people who have not been able to heal from Epstein Barr Syndrome, which we know is part of my story. The body simply wears out after years or decades of not being able to clear the virus and the T-cells collapse into disease. I'm sure I am butchering this discussion but it may help me someday to read this back.
He explained out biologics - these drugs being developed (some have been around for a long time) - are targeting specific mutations in the DNA that my most recent testing show I have. Then, because we haven't destroyed the immune system, I have a good chance of my immune system recovering enough to fight the cancer off. (my words)
I love how this very conventional oncologist then went on to educate me about the 3 things we really need to focus on in order to restore and maintain health - the cancer, the immune system, and the micro environment. Wow! A doctor who is not so myopic that he wants to treat one specific ailment, even if that means sacrificing health elsewhere. This has been my experience with specialists elsewhere-they just focus on the problem they want to treat. We need to take care of all 3 of these simultaneously - not destroy one at the peril of another. That, to me, is what it means to be a healer.
So-these 'new' drugs he is talking about are not necessarily "immunotherapy" people will ask me about because of all the commercials we are seeing about immunotherapy. They do work on DNA expression or lack of expression, as is my case, because of specific mutations. It is related to epigenetic - how our genetics are expressed.
He talked about several drugs with lots of details - and pointed out several times how much less toxic they are. No hair loss, no neuropathy, no transfusions, no heart damage, etc.
We discussed the clinical trial I was offered the beginning of 2018 and 2019 - CHOEP plus Novilomab (Obtivo). His opinion is that you are using an immune modulating drug while you're destroying the immune system. Why do both at once? Instead, he feels there is more hope by combining the biologic drugs to magnify their effectiveness.
Essentially, for me - the idea is to try these biologic drugs that might work for several years. If I have to, we can still try chemo. Better yet, there will be new treatments by then. I am not jumping into chemo the way I thought. Dr. Shustov is writing a letter to Dr. Haverkos in Colorado with his recommendations and will send me a copy as well. We have an appointment with Dr. Haverkos Monday to see if he can, and will, go along with this line of treatment strategy and will help us get the insurance company to cover it, even though it is more common to do chemo first. Then we will go from there. We'll see.
Interestingly, this is essentially the strategy that Dr. Nagourney verbally suggested but didn't put into his official report.
If you just want the basic summary, scroll to the bold blue paragraph toward the end. (-:
I fully expected him to tell me I needed to jump into CHOEP or some other chemo regime, followed by a bone marrow transplant. I have absolutely dreaded this. It is all that has been offered by the famous City of Hope and 3 other oncologists. I know so many others who have gone through it (many on facebook that I've met over the past 3 years). People get through it but I would be going in with the knowledge that Periperal T-Cell Lymphoma's almost always relapse afterward. I went in praying that I would be the exception but knowing that this could be jumping into a world where I am at the mercy of drugs and other interventions that often lead to more and more need for medical intervention. And...the people I have met at the Cancer Center for Healing that have been through it and simply state that they will NEVER do it again - even if it means spending their life savings, their 401Ks, and even dying.
He gave some history of why chemo has been used for T-Cell Lymphoma, even though it hasn't worked. He affirmed how rare these lymphomas are so they haven't gotten the research attention, but now he and a consortium from around the globe are looking at it differently. He described the chemo regimes as "crude carpet bombing". He explained that they have been trying to think outside the box for the last 5 - 10 years. Just like I have been hearing in the "alternative" world, we may need to move toward the idea of managing cancer longterm, rather than killing it at the expense of the host (patient). He also explained that, if I went to 5 "experts," I'd get 5 different opinions. He explained how difficult it is to study-in fact, he asserts that we know so much now, through doctors sharing opinions and reasonable data, that we are putting patients through unnecessary misery if we continue to study chemo for certain cancers. Now, please be clear - he mentioned it and I've said it from the beginning - if they had given me better odds with treatment, it would have been much harder to go the path I've gone. Chemo and treatment are not the enemy - it's using treatments over and over that don't work that is crazy. The other piece of the puzzle, is that I have not been at death's door with this. I have met people who have - they had no real choice but to jump into treatment to save their lives, even for the short term. Chemo still works to knock down cancer and is sometimes the only option.
He taught me terms I didn't know before. Rather than look at survival statistics that relate to populations but we try to apply to individuals (think, "what is my chance of survival"), we need to think, "What is the number needed to treat" and "What is the number needed to harm." Let's say it takes 10 people for the 11th to get a positive response, is it sane to treat that way? What if you actually damage or kill the 5th person you treat (number needed to harm)? This could be a more accurate and sane way to make treatment decisions. And it's a more honest way to inform patients about treatment options. They have been treating people with T-Cell Lymphoma this way - hurting a lot of people and benefitting some. They are trying to find better ways.
He talked about how no one should tell us patients to do a transplant. We should be educated and then we should make an informed decision. I have been flat out told to do it by more than one doctor. He talked about how the europeans talk about it. He said they call it "High dose treatment with stem cell rescue," because that is what bone marrow transplant really is - taking the patient through very high chemotherapy to the place where they have no gut flora, no immune system, no bone marrow. Then they "rescue" the patient with a transplant of bone marrow from either another person or from the patient, harvested when they were in remission, hoping there were no virulent cancer cells living in the marrow. The person then has to go through all vaccinations and the process of rebuilding a completely non-existent immune system - very often with complications.
Now, imagine that same patient relapsing even as soon as 2 weeks after completing the process and being told they have to undergo treatment again with no immune system - this explains the high mortality rate with these cancers.
I interrupted the doctor at some point here with two questions. With the modified diagnosis last fall, do I still have PTCL/AITL. He explained that they are splitting subcategories into subcategories, which is what I thought I was understanding from online. Essentially, for the patient, this is the same - but they are finding new genetic information (genomics) for these subcategories that could inform treatment in the future.
Also, I asked if all the miserable symptoms I've having that are driving me to treatment are typical and if they will resolve with treatment. He said they are textbook and, yes, he expects them all to resolve. He said I have "Capilary Leak Syndrome" which is a Cytokine Release Syndrome, which is causing the weird and sometimes painful swelling in my joints. It's almost as if this lymphoma causes autoimmune disease where the body starts attacking itself, which explains so much.
He also educated us that lymphomas are "tumors of the immune system". Since our lymph glands are 90% of the immune system, it's tumors in our lymph glands, primarily. He said there is confusion because people classify it as a "blood cancer." This is not in the blood but the lymphocytes of the immune system are transported by the blood. The T-Cells are the "government or boss" of the immune system. When viruses or bacteria come into the system, the T-Cells tell everyone what to do. That's why it's so hard to treat. The T-Cells, the ones in charge, are the ones who are mutating and growing out of control. The immune system starts to attack the host - which, again, is causing a lot of my symptoms.
He also said they see people who have not been able to heal from Epstein Barr Syndrome, which we know is part of my story. The body simply wears out after years or decades of not being able to clear the virus and the T-cells collapse into disease. I'm sure I am butchering this discussion but it may help me someday to read this back.
He explained out biologics - these drugs being developed (some have been around for a long time) - are targeting specific mutations in the DNA that my most recent testing show I have. Then, because we haven't destroyed the immune system, I have a good chance of my immune system recovering enough to fight the cancer off. (my words)
I love how this very conventional oncologist then went on to educate me about the 3 things we really need to focus on in order to restore and maintain health - the cancer, the immune system, and the micro environment. Wow! A doctor who is not so myopic that he wants to treat one specific ailment, even if that means sacrificing health elsewhere. This has been my experience with specialists elsewhere-they just focus on the problem they want to treat. We need to take care of all 3 of these simultaneously - not destroy one at the peril of another. That, to me, is what it means to be a healer.
So-these 'new' drugs he is talking about are not necessarily "immunotherapy" people will ask me about because of all the commercials we are seeing about immunotherapy. They do work on DNA expression or lack of expression, as is my case, because of specific mutations. It is related to epigenetic - how our genetics are expressed.
He talked about several drugs with lots of details - and pointed out several times how much less toxic they are. No hair loss, no neuropathy, no transfusions, no heart damage, etc.
We discussed the clinical trial I was offered the beginning of 2018 and 2019 - CHOEP plus Novilomab (Obtivo). His opinion is that you are using an immune modulating drug while you're destroying the immune system. Why do both at once? Instead, he feels there is more hope by combining the biologic drugs to magnify their effectiveness.
Essentially, for me - the idea is to try these biologic drugs that might work for several years. If I have to, we can still try chemo. Better yet, there will be new treatments by then. I am not jumping into chemo the way I thought. Dr. Shustov is writing a letter to Dr. Haverkos in Colorado with his recommendations and will send me a copy as well. We have an appointment with Dr. Haverkos Monday to see if he can, and will, go along with this line of treatment strategy and will help us get the insurance company to cover it, even though it is more common to do chemo first. Then we will go from there. We'll see.
Interestingly, this is essentially the strategy that Dr. Nagourney verbally suggested but didn't put into his official report.
Medication suggestions (these are sketchy as he was going really fast - thanks again Jugie!):
1. HDAC inhibitators:
a. Romedepsin: doesn’t damage DNA- activates genes inside abnormal cells to resolve the tumor- makes them go back to normal. Normal cells are unaffected. De-silences the rogue – Epigenetic modification. (used after failed ICE, CHOEP, etc. 66% of tumor shrinkage and 50% had shrinkage and 15% of those went away) . you can take a break in treatment for trips and stuff. No chemo side effects. Problem: have to keep going. Once a week infusion for 4 hours. Takes a whole day. One side effect: changes taste for 2-3 days. Drug evaporates thru tongue.
Can cause fatigue. Both side effects can be helped if you reduce the dose and space it out. After 4-5 months can change from weekly to every other week, then monthly and possibly go to once per month.
b. Belinostat: remarkable. No side effects. Same benefits as Romedepsin. Given daily for 5 days. Then 16 day break. Infusion 30 min. after response achieved…move to every 4 weeks. Travel ok . hiking, etc. Long-term treatment. Lifestyle completely different than chemo.
2. Hypomethylating agents (HMA):
a. Used for AML pts. These hit the mutations in your genes.
3. Vidaza: 50+ % response. French study – oral. Not approved yet for AITL.
4. Another drug – didn’t understand: unclear
5. Divolusib: pill belongs to PI3 – very active in many cancers. Approved for bcell lymphomas. It has modest activity. Study positive. Other drugs more effective for b-cell lymphomas. Started testing this for t-cell. There is a trial half completed. 57% response reported by Dr. Horowitz. One pill. Off label until approved. Problem - it will probably be approved in 6-9months. Until then, there is a compassionate use program: to get it for free. Submit to ins, they say no - then company gives for free to market it.
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