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saxitoxin wrote:Serbia is a RUDE DUDE
may not be a PRUDE, but he's gotta 'TUDE
might not be LEWD, but he's gonna get BOOED
RUDE
Ray Rider wrote:So after noticing an unusual lump on my throat during the summer and undergoing a series of tests, near the end of November I was diagnosed with an aggressive form of Non-Hodgkins Diffuse Large B Cell Lymphoma (DLBCL). The oncologist's recommendation was to begin 6 cycles of R-CHOP chemotherapy immediately, although because the largest mass of cancer had appeared in my thyroid (an unusual location for that type of cancer), he would be sending my tissue sample along for further testing. Just before the 3rd cycle at the beginning of January, the oncologist informed me that after getting a second diagnosis from a pathologist, it was confirmed that I have Stage 1A Double Hit Lymphoma, an intermediate variation between both DLBCL and Burkitt's Lymphoma. The options were to either continue mainly with the regular R-CHOP regimen of drugs and end with an autologous stem cell transplant or switch over to a higher intensity chemo program called the Magrath Protocol, which would still allow for the possibility of further chemo and a stem cell transplant in the case of a relapse. I chose the Magrath Protocol (I'm young and fit--that'll yield the best odds of success) and have been in and out of the hospital for nearly three weeks now, with 5-8 more weeks to come (thank God for our Canadian health care system, warts and all!).
Anyway, I realize this is a stretch but I was wondering if anyone here by any chance has some knowledge of the Magrath Protocol as it relates to Double Hit Lymphoma or has any recommendations for research articles/books on this subject? I've found a fair number of articles on Double Hit Lymphoma treated with regular chemo (the results of which are pretty dismal!) or of articles about the Magrath Protocol treating regular DLBCL or Burkitt's, but it doesn't really apply to my situation. I've only found a few applicable articles so far, so any further info would be appreciated!
PLAYER57832 wrote:First, thoughts and prayers with you.
Working in a hospital, around several staff members and doctors who have had cancers of various types, I have to say that this might be one of those cases when more information won't be helpful. That is, if you do your own research you may tend to second-guess your doctor, or, may wind up finding mostly the worst bits about the regime, etc. There is an old saying "the doctor who treats himself has an idiot for a doctor and a fool for a patient".
Your doctor should be able to give you relevant information, if it is available. If not, if your doctor is not forthcoming, there likely is a reason... You need to trust your doctor. Once you are in remission, then you can do more research -- maybe even investigate yourself.
Understand, I am normally a "find out all about this" person, but there does come a time when knowledge just does not help. You have to plain and simply BELIEVE. You have to have faith that the treatment will work...and, well, take the time to go over options, not as a negative "I won't survive", but as a positive 'I have had this warning, let me go ahead (sort of along the lines of the song "live like you are dying"). Make peace with people, think out options for various things (be it filling out a will, going on a trip, etc) because, well... you just never know. Not because you have cancer, but because this was a warning of what COULD happen at any time.
Shino Tenshi wrote:PLAYER57832 wrote:First, thoughts and prayers with you.
Working in a hospital, around several staff members and doctors who have had cancers of various types, I have to say that this might be one of those cases when more information won't be helpful. That is, if you do your own research you may tend to second-guess your doctor, or, may wind up finding mostly the worst bits about the regime, etc. There is an old saying "the doctor who treats himself has an idiot for a doctor and a fool for a patient".
Your doctor should be able to give you relevant information, if it is available. If not, if your doctor is not forthcoming, there likely is a reason... You need to trust your doctor. Once you are in remission, then you can do more research -- maybe even investigate yourself.
Understand, I am normally a "find out all about this" person, but there does come a time when knowledge just does not help. You have to plain and simply BELIEVE. You have to have faith that the treatment will work...and, well, take the time to go over options, not as a negative "I won't survive", but as a positive 'I have had this warning, let me go ahead (sort of along the lines of the song "live like you are dying"). Make peace with people, think out options for various things (be it filling out a will, going on a trip, etc) because, well... you just never know. Not because you have cancer, but because this was a warning of what COULD happen at any time.
I couldn't disagree more. If my partner had followed her doctors' recommendations, they would have amputated her entire leg and pumped her full of chemical poisons. Instead, she researched, read, and got as much information she could about her cancer and treatment options. She opted for holistic therapies - herbal, nutritional, lifestyle etc., and her once mango sized tumor has shrunk away to zilch. I can only strongly suggest that you get as much information as possible from professionals in various fields of health care (including holistic) so you can make an INFORMED decision about your treatment. This is not the type of situation to blindly follow one person's opinion. Your life is worth more than a shot in the dark just because some guy in a white coat 'says so'. Best wishes for you and I hope you get the treatment you need.
Ray Rider wrote:Thanks for the encouragement and prayer, folks! I appreciate it.Shino Tenshi wrote:PLAYER57832 wrote:First, thoughts and prayers with you.
Working in a hospital, around several staff members and doctors who have had cancers of various types, I have to say that this might be one of those cases when more information won't be helpful. That is, if you do your own research you may tend to second-guess your doctor, or, may wind up finding mostly the worst bits about the regime, etc. There is an old saying "the doctor who treats himself has an idiot for a doctor and a fool for a patient".
Your doctor should be able to give you relevant information, if it is available. If not, if your doctor is not forthcoming, there likely is a reason... You need to trust your doctor. Once you are in remission, then you can do more research -- maybe even investigate yourself.
Understand, I am normally a "find out all about this" person, but there does come a time when knowledge just does not help. You have to plain and simply BELIEVE. You have to have faith that the treatment will work...and, well, take the time to go over options, not as a negative "I won't survive", but as a positive 'I have had this warning, let me go ahead (sort of along the lines of the song "live like you are dying"). Make peace with people, think out options for various things (be it filling out a will, going on a trip, etc) because, well... you just never know. Not because you have cancer, but because this was a warning of what COULD happen at any time.
I couldn't disagree more. If my partner had followed her doctors' recommendations, they would have amputated her entire leg and pumped her full of chemical poisons. Instead, she researched, read, and got as much information she could about her cancer and treatment options. She opted for holistic therapies - herbal, nutritional, lifestyle etc., and her once mango sized tumor has shrunk away to zilch. I can only strongly suggest that you get as much information as possible from professionals in various fields of health care (including holistic) so you can make an INFORMED decision about your treatment. This is not the type of situation to blindly follow one person's opinion. Your life is worth more than a shot in the dark just because some guy in a white coat 'says so'. Best wishes for you and I hope you get the treatment you need.
I appreciate your take on things as well, Player, although I tend to be really positive person so I'm not too worried about getting discouraged through additional research. I doubt the research would really change much of what's going on but I like to know what's going on, how the drugs are working, what the best options are, and how everything's affecting my body. I've already taken the negative precautionary measures--I made a will, I have no broken relationships to mend, plus I'm a Christian so I'm confident in where I'm going after death anyway.
Shino Tenshi, if you don't mind me asking, what kind of cancer did your partner have and what kind of holistic therapies did she switch to? Like was it a specific program or a few different ones she was trying? I've checked a few alternative cancer fighting options but none of it has struck me as being very credible. It's tough to know what's junk science and what's for real; for now I'm just sticking with what the oncologist has said (which has lined up with research I've done so far).
nietzsche wrote:I need to clarify one point.The reason I said it might not help to get information--as much as you might wish, is because oftentimes initial information just is not that accurate. There is a very good reason why preliminary data is called "preliminary". Since you indicated this was a new treatment, there likely is not much publically available and what is available is likely not all that trustworthy. I know you are familiar with such things,at least in other contexts. The trouble is that we have a tendency to seek and trust ANYTHING in such situations and that can be dangerous if the information winds up not being accurate. Ironically, its often the more intelligent and "scientific" minded who are swayed wrongly. That is why I said to check with your doctor. Your doctor has to have some basic information (unless its REALLY experimental),would have access to anything available that you might not be able to get.Ray Rider wrote:Thanks for the encouragement and prayer, folks! I appreciate it.Shino Tenshi wrote:PLAYER57832 wrote:First, thoughts and prayers with you.
Working in a hospital, around several staff members and doctors who have had cancers of various types, I have to say that this might be one of those cases when more information won't be helpful. That is, if you do your own research you may tend to second-guess your doctor, or, may wind up finding mostly the worst bits about the regime, etc. There is an old saying "the doctor who treats himself has an idiot for a doctor and a fool for a patient".
Your doctor should be able to give you relevant information, if it is available. If not, if your doctor is not forthcoming, there likely is a reason... You need to trust your doctor. Once you are in remission, then you can do more research -- maybe even investigate yourself.
Understand, I am normally a "find out all about this" person, but there does come a time when knowledge just does not help. You have to plain and simply BELIEVE. You have to have faith that the treatment will work...and, well, take the time to go over options, not as a negative "I won't survive", but as a positive 'I have had this warning, let me go ahead (sort of along the lines of the song "live like you are dying"). Make peace with people, think out options for various things (be it filling out a will, going on a trip, etc) because, well... you just never know. Not because you have cancer, but because this was a warning of what COULD happen at any time.
I couldn't disagree more. If my partner had followed her doctors' recommendations, they would have amputated her entire leg and pumped her full of chemical poisons. Instead, she researched, read, and got as much information she could about her cancer and treatment options. She opted for holistic therapies - herbal, nutritional, lifestyle etc., and her once mango sized tumor has shrunk away to zilch. I can only strongly suggest that you get as much information as possible from professionals in various fields of health care (including holistic) so you can make an INFORMED decision about your treatment. This is not the type of situation to blindly follow one person's opinion. Your life is worth more than a shot in the dark just because some guy in a white coat 'says so'. Best wishes for you and I hope you get the treatment you need.
I appreciate your take on things as well, Player, although I tend to be really positive person so I'm not too worried about getting discouraged through additional research. I doubt the research would really change much of what's going on but I like to know what's going on, how the drugs are working, what the best options are, and how everything's affecting my body. I've already taken the negative precautionary measures--I made a will, I have no broken relationships to mend, plus I'm a Christian so I'm confident in where I'm going after death anyway.
If your doctor doesn't have the information, its almost certainly because its either not available. The other possibility, if this is a clinical trial, is that you would not be given information because it might bias the results. It doesn't sound like that is the case here,though. in that case you definitely should not look too much.nietzsche wrote:Whatever you decide to do, go with your gut. Be honest with yourself in choosing your path, go with the one that feels right and not with the one that you think you ought to be doing. What Player says is right too, you don't need to be thinking "What if this is the right way and I'm chosing wrongly", I think that is what she was trying to say. I happen to have chatted with Shino's wife twice and she shared all that with me (alas, Shino might be losing her to MrPanchoVilla soon).
The basic theory behind all this, one I myself believe in, is that we put our bodies under much stress and give it bad quality food. Any one of those two (stress, shitty food) alone can cause an imbalance that can latter manifest in a disease. The body repairs itself, decent Drs. will tell you that, you just need to give it room to do it, and that normally means to stop eating shitty food and some time herbs are needed to help it detoxify, once the imbalance is gone, the body quickly repairs itself.
There are many herbs and diets that help in this, the basic thing is to stop giving the body the bad food, change it for fresh fruits and vegetables, give your lungs quality air to breath (deep breathing in a park) and forget about stress. Watch silly movies, sitcoms instead of the news, stuff like that.
However, and this is the important thing here, you gotta believe it's for you, if you don't think this is for real, it won't help, and you'll have in the back of your mind all the time "I took the wrong decision, it's not gonna work, I should've stayed with the oncologist". Myabe you can do both.
I was hesitant to share this at first because I thought as Player did that less knowledge was better to keep a less confused, positive attitude but now that it's on the table I thought I'd share my perspective. I want to you know that I'm not an Md, and I've never cured myself of cancer. I've read a lot and I'm very close to kick an autoimmune disease out, I used to be a lot of time in bed because of pain but then learned about the alternative approach. I was on a ton of pills, I take no pills now, the reason my recovery hasn't been full is because I quit the diet because I had to focus in other things, but I learned something more usefull still, the key is in the attitude.
John Adams wrote:I have come to the conclusion that one useless man is called a disgrace, that two are called a law firm, and that three or more become a Congress! And by God I have had this Congress!
BigBallinStalin wrote:Oof, I have no advice to offer other than to stay positive. You're young, and they caught it early, so look forward to a long life, Ray Rider.
Dukasaur wrote:I wish you the best of luck in the struggle ahead!
fadedpsychosis wrote:Yech... best of luck to you Ray. Cancer runs in both sides of my family (and killed my paternal line) so I know a little of what you're going through, and will likely know even better down the line, but I don't know anything about the specific treatments you're going through. All I can say is good on you for catching it when you did.
mrswdk wrote:How young, out of interest? I'm never sure if weird lumps is something I ought to be keeping at least a casual eye out for or if I'm not old enough yet.
All the best, Ray.
nietzsche wrote:Whatever you decide to do, go with your gut. Be honest with yourself in choosing your path, go with the one that feels right and not with the one that you think you ought to be doing. What Player says is right too, you don't need to be thinking "What if this is the right way and I'm chosing wrongly", I think that is what she was trying to say. I happen to have chatted with Shino's wife twice and she shared all that with me (alas, Shino might be losing her to MrPanchoVilla soon).
The basic theory behind all this, one I myself believe in, is that we put our bodies under much stress and give it bad quality food. Any one of those two (stress, shitty food) alone can cause an imbalance that can latter manifest in a disease. The body repairs itself, decent Drs. will tell you that, you just need to give it room to do it, and that normally means to stop eating shitty food and some time herbs are needed to help it detoxify, once the imbalance is gone, the body quickly repairs itself.
There are many herbs and diets that help in this, the basic thing is to stop giving the body the bad food, change it for fresh fruits and vegetables, give your lungs quality air to breath (deep breathing in a park) and forget about stress. Watch silly movies, sitcoms instead of the news, stuff like that.
However, and this is the important thing here, you gotta believe it's for you, if you don't think this is for real, it won't help, and you'll have in the back of your mind all the time "I took the wrong decision, it's not gonna work, I should've stayed with the oncologist". Myabe you can do both.
I was hesitant to share this at first because I thought as Player did that less knowledge was better to keep a less confused, positive attitude but now that it's on the table I thought I'd share my perspective. I want to you know that I'm not an Md, and I've never cured myself of cancer. I've read a lot and I'm very close to kick an autoimmune disease out, I used to be a lot of time in bed because of pain but then learned about the alternative approach. I was on a ton of pills, I take no pills now, the reason my recovery hasn't been full is because I quit the diet because I had to focus in other things, but I learned something more usefull still, the key is in the attitude.
Whatever you do, go with your gut. Respect your beliefs, if you decide to change them, be honest with yourself.
PLAYER57832 wrote:Neitz--these are very good words. particularly about attitude, though I do want to clarify that its not that 'less knowledge is good", its that you need to have reliable information, and when you really REALLY want something,its just all too easy to find "information" that is anything but real.
Also, do check with your doctor even about basic nutrition stuff, Some additives might interact badly with your treatments. And, though I don't know anything about your specific regime, in many cases the goal is basically to poison you to poison the cancer. Sometimes you can mitigate bad effects, but sometimes that might wind up helping the cancer itself.
DoomYoshi wrote:Do you have access to University-level research journals? If not, I can send you some proxy information for personal research and some quick get-started tips. The truth is that Google Scholar is better than anything else right now for research. Read by QxMD (its an iPad app) is better for browsing, and happening across stuff that you wouldn't already read.
Magrath reminds me of Morgoth though.
As a side note, I just do genetics. Do you know which genes have mutated in the cancer?
Ray wrote:Thanks for the encouragement! I'm 24...and yeah, I didn't think a little lump would be such a big deal at my age, but it's worth keeping an eye out for them and checking them out right away if you spot anything!
TA1LGUNN3R wrote:Ray wrote:Thanks for the encouragement! I'm 24...and yeah, I didn't think a little lump would be such a big deal at my age, but it's worth keeping an eye out for them and checking them out right away if you spot anything!
wtf. 24? That's bullshit, man. This is a prime example of why I'm going for medical research. I really would like to see something like this as a thing in the past. Unfortunately I don't have much advice atm to give you, other than trying to stay as fit and healthy as possible. Making sure your body can recover from whatever treatment they give you is pretty key to beating it altogether.
You mentioned that the largest mass was in your thyroid. Have the docs given you any idea why this might've occurred, and will it have any future effect on your thyroid? My dad had grave's disease (pretty serious- he almost died) when he was a bit younger than you are now and had to have it partially destroyed and now has to take hormone supplements.
I'm not a praying man but I wish you all the best and a speedy recovery, for whatever that's worth.
-TG
thegreekdog wrote:Good luck Ray.
Symmetry wrote:Hope things work out for you Ray. I've not been well for a while, though it's not the big C. The only good advice I have on that front is get yourself some ginger tea. It helped a lot of people I know with the nausea of chemo. Ginger bread or biscuits are good too. Other than that small advice, it's good to have a plan for the future. The awful thing about long term illness is that you can end up living day-to-day, without a bit of hope. Set yourself some goals and some rewards.
Best of luck mate.
riskllama wrote:Koolbak wins this thread.
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