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I echo the sentiments of many here. Work to gain understanding of your cancer and health then get the best care you can access.
I have leukemia. Was not feeling vigorous and had bone pains 14 years ago. Spent two years and more than 20K out of pocket in US for testing at local clinics and hospital being assured I had no cancer anywhere in my body. But I "glowed all over" in a nuclear medicine test which was ascribed to background radiation by my oncologist. Was also told I had nodules in my lungs and calcification around my heart arteries - flip a coin to see who cut me first - cardiac surgeon or lung surgeon - forget the glow puzzle.

Still didn't make sense to me so some friends in Canada had me come up for a "Dominion Health Exam" . Executive Health Exam – Dominion Medical Centres Sure glad I did. Can't say enough good about the Canadian health system for diagnostic work and initial recommendations. Or enough thanks to my friends who took care of me when I was not able to care for myself. They found my cancer in the first few hours of examination and after reviewing my cardiac and pulmonary records suggested I treat the cancer first because that clock had only a few months remaining. The Dominion center arranged for my local doctors to do confirmation biopsies and then confirm treatment plans of Chemo.

"Gold Treatment Standard" in Canada was three drugs in combination. In US I was offered one of them only because of insurance regulations. I yelled and protested which got me a special exception at the clinic level to receive two of the three because my insurance agent was very persuasive at a national level - he and his brother owned a large agency who carried employee policies for five or six of the biggest tech companies in the Silicon Valley - so I got a blank check authorization from Blue Cross for anything needed, which freed up my oncologist to actually treat me more aggressively; within limits imposed by his clinic's board of directors. The brothers were car guys... buddies from high school days - so they really saved my life by getting that treatment expanded at a time when I didn't know a drip watering system from an IV line, and nor did I know anything about how to get effective medical care. It is a steep and slippery learning curve that hits you at a time when you cannot just study and rationally figure stuff out. Fortunately I'd been a scoutmaster with one of the clinic's board members who also got some rules changed about IV lines vs an implant port and some other stuff which would improve my mortality probabilities.

Long story short FR Chemo didn't work very well. It killed me. I died twice and was brought back. Half was my dumb ignorance not understanding what the heck was happening and half because those drugs are old tech and that is what they do - Most Chemo drugs are tech from the 1970's finally approved by the FDA in the 80's and those outcomes are well known. You die. Either you die quick from cardiac issues, infection issues, or metastasis / mutation of the original cancer. Or slower from those same things as your fundamental health declines. Or you get very lucky and it all just works and goes into remission.

Remission is good. It is a pass for a few years - maybe a few decades. Remission gives you learning time. After a few weeks in the ICU and Isolation I was sent home to die. I'd flunked out of treatment being politely advised I'd had my best shot - figure on a couple of years before organ failure and/or infection took over. I had no reason to doubt that analysis because I'm the last living member of my race team. All the guys I raced with have passed from cancer in various parts of anatomy including places like you have now. That was depressing. I didn't want help to cope but eventually needed to see someone about the medical bills who eased me into a counseling situation. I still think about that a lot. Getting help from people I didn't know and didn't understand who actually knew how to motivate me positively.

And fortunately I had more great car guy friends who felt that professional medical brush off was not appropriate nor was it a final pronouncement. They started looking for new tech treatment options while I learned how to become a human who could gain health while being terminally ill.

Remember this: Rest, Eliminate stress, Diet - healthy food. Modest quantities. Exercise - Just slow down and walk awhile every day. And learn about your specific cancer to the point where you can say the names of the drugs and read with understanding the entire precaution and indication label. Learn to speak DR language. There is a free news clip service from Google which will send you medical journal articles from the entire world on your specific cancer every day. Read them. You'll need to become cutting edge - better than the clinic level Dr in fact, who doesn't have time to keep up with research results and new drug trials.

I learned about Medical Tourism. You are taking a trip to see another doctor. That is a good move. But may I suggest it might be not far enough politically because it isn't out of the reach of the FDA and our screwed up policy driven medical care system. And you may be greatly benefited by getting into a medical trial - try for a phase three trial - at a research hospital. Put crudely, the local clinic is like a corner gas station for level of care and knowledge. A hospital is a lot like a car dealership, better care for a wider modeling of disease, but no specialization. A research college hospital is where the healing action is, but it is focused on a narrow specialty. They have new tech. New drugs. Far better monitoring and lab work. But you gotta find where the trial you need is and then go there. Then you have to get accepted.

You have to present yourself as a good candidate for the drug to work in. That means.... if you smoke quit. If you drink, stop. If you take any other drugs work with a doctor to minimize or quit them carefully. If you are overweight do what you need to do to get to a minimum target weight. Get your teeth / gums in outstanding condition. And have as vigorous sex life as you can. All this promotes life so the drugs can work better because your body is working better. Then a doctor will see you as a great candidate for his healing efforts and a drug company sponsoring the trial will be more assured you'll not die and poorly promote their new product. Most nations will agree the USA has the best health tech in the world. But there are a lot of places where access and administration of those discoveries is easier to attain.

In my case I worked up to the point I could qualify for getting some heart stints and the lung issues were proved stable so I became qualified for a trial if I gave up some blood thinners I didn't really need. That process took a year and the cancer had returned so it was none too soon. I found cancer treatment is exclusive if you are not careful. It excludes other options for treatment. Sometimes radiation might be better. Sometimes surgery might be the right move. But gaining health is always the right path as you select an optimum inclusion list of possible interventions.

In my case my buddies found a drug trial at OHSU and more or less twisted my arm until I called them and applied. I went there and am glad I did. From a situation where I was at near zero months left I'm here typing words to you 14 years into it. I've been in and out of remission 3 times. The modern drugs I've had access to take about two years of use to reach the end of effectiveness. Then I'm ok for about 2 years or so. I think I've adjusted my mindset to that cycle. I've done some of my best work automotive wise when in remission. And I've done a lot of construction and helped give back to people I care for. In treatment I still try every day to get something done. Gotta keep moving. Gotta keep sharp.

I've also arranged for my local oncologist to communicate directly with my oncologist at OHSU. It is possible to link hospital and medical records so all labs and procedures and notes are accessible in both facilities. It functions like a double entry bookkeeping system. If one doctor misses a trend or stops making sense I can cross check his work with the other physician. With cancer more heads are far better than one..... gotta get ego and rote procedure out of the treatment cycle. In these days of genetic level medicine you need personalized care - not a process sheet from the insurance company or medicare.

This last round of remission I had my heart removed so some arteries beneath it could be fixed. Then they put it back in and fixed a few more on top creating a bypass situation in there. Whew. Open heart surgery is a huge health improvement. Chemo drugs are hard on your heart. You need an oncologist who knows a great cardiologist and one who will be a team player in your care.

I've met many caregivers over the last 14 or so years of being in and out of treatment. And my friendships have grown and deepened with many friends. I've can't say enough good things about those who have gone way out of their way to ease my life and soul. I'd have to say, cancer has made me a better person. More human, more compassionate, a better man. I hope your journey, just beginning, will lead you to say that a decade or two from now.

Till then it's the Huey Lewis and the News song for us:

Lyrics

I want a new drug, one that won't make me sick
One that won't make me crash my car
Or make me feel three-feet thick
I want a new drug, one that won't hurt my head
One that won't make my mouth too dry
Or make my eyes too red
One that won't make me nervous
Wonderin' what to do
One that makes me feel like I feel when I'm with you
When I'm alone with you
I want a new drug, one that won't spill
One that don't cost too much
Or come in a pill
I want a new drug, one that won't go away
One that won't keep me up all night
One that won't make me sleep all day
One that won't make me nervous
Wonderin' what to do
One that makes me feel like I feel when I'm with you
I'm alone with you, baby
I'm alone with you, baby
I want a new drug, one that does what it should
One that won't make me feel too bad
One that won't make me feel too good
I want a new drug, one with no doubt
One that won't make me talk to much
Or make my face breakout
One that won't make me nervous
Wonderin' what to do
One that makes me feel like I feel when I'm with you
I'm alone with you
I'm alone with you, yeah, yeah
 

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Well all I was given 1-3 years to live last week due to Colorectal Cancer. (please learn the symptoms) Wife and I are heading to Chicago (from Indy) tomorrow for a second opinion. I just wanted to show off my "74" before then. Thanks to Chemo it took two days but I cleaned the hell out of the car. This thing is a dream come true to me!
Nice car, I have lost too many family members to cancer, please get an appointment at Vanderbilt In Nashville Tennessee, they are the best and the doctors actually care about you.
 

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Premium Member
Joined
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2,342 Posts
My 92 yo mother-in-law just celebrated her 93rd birthday on July 23rd after they removed the malignant portion off her colon successfully (she even came out not needing the oxygen hip-carried breathing machine), and completed her chemo therapy (rather in the mild side of once every two weeks), but she just got a clean bill of health.

So you can survive this. Personally, I feel a longer chemo treatment (if necessary) but less aggressive one works much better. But I have also met survivors who endured chemo four days a week for a few months.

So it is time to cinch your belt and boots straps, and never give up, brotha. 🤗🤗👌🏽👍🏽
 

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Premium Member
1974 Chevy Nova Custom, 350 Small block
Joined
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82 Posts
Discussion Starter · #33 ·
If you need anything when your in Chicago please PM me .I'm in the burbs we have some great health care I had some colon issues/ surgery that saved my life at UIC.
Well, we just got home from Zion Il. How about telling me a secret way to avoid 294 from hell? :ROFLMAO:
 

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Premium Member
1974 Chevy Nova Custom, 350 Small block
Joined
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82 Posts
Discussion Starter · #34 ·
My 92 yo mother-in-law just celebrated her 93rd birthday on July 23rd after they removed the malignant portion off her colon successfully (she even came out not needing the oxygen hip-carried breathing machine), and completed her chemo therapy (rather in the mild side of once every two weeks), but she just got a clean bill of health.

So you can survive this. Personally, I feel a longer chemo treatment (if necessary) but less aggressive one works much better. But I have also met survivors who endured chemo four days a week for a few months.

So it is time to cinch your belt and boots straps, and never give up, brotha. 🤗🤗👌🏽👍🏽
Thank you. My attitude is whatever it takes. Bring it on!
 

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Premium Member
1974 Chevy Nova Custom, 350 Small block
Joined
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82 Posts
Discussion Starter · #35 ·
I echo the sentiments of many here. Work to gain understanding of your cancer and health then get the best care you can access.
I have leukemia. Was not feeling vigorous and had bone pains 14 years ago. Spent two years and more than 20K out of pocket in US for testing at local clinics and hospital being assured I had no cancer anywhere in my body. But I "glowed all over" in a nuclear medicine test which was ascribed to background radiation by my oncologist. Was also told I had nodules in my lungs and calcification around my heart arteries - flip a coin to see who cut me first - cardiac surgeon or lung surgeon - forget the glow puzzle.

Still didn't make sense to me so some friends in Canada had me come up for a "Dominion Health Exam" . Executive Health Exam – Dominion Medical Centres Sure glad I did. Can't say enough good about the Canadian health system for diagnostic work and initial recommendations. Or enough thanks to my friends who took care of me when I was not able to care for myself. They found my cancer in the first few hours of examination and after reviewing my cardiac and pulmonary records suggested I treat the cancer first because that clock had only a few months remaining. The Dominion center arranged for my local doctors to do confirmation biopsies and then confirm treatment plans of Chemo.

"Gold Treatment Standard" in Canada was three drugs in combination. In US I was offered one of them only because of insurance regulations. I yelled and protested which got me a special exception at the clinic level to receive two of the three because my insurance agent was very persuasive at a national level - he and his brother owned a large agency who carried employee policies for five or six of the biggest tech companies in the Silicon Valley - so I got a blank check authorization from Blue Cross for anything needed, which freed up my oncologist to actually treat me more aggressively; within limits imposed by his clinic's board of directors. The brothers were car guys... buddies from high school days - so they really saved my life by getting that treatment expanded at a time when I didn't know a drip watering system from an IV line, and nor did I know anything about how to get effective medical care. It is a steep and slippery learning curve that hits you at a time when you cannot just study and rationally figure stuff out. Fortunately I'd been a scoutmaster with one of the clinic's board members who also got some rules changed about IV lines vs an implant port and some other stuff which would improve my mortality probabilities.

Long story short FR Chemo didn't work very well. It killed me. I died twice and was brought back. Half was my dumb ignorance not understanding what the heck was happening and half because those drugs are old tech and that is what they do - Most Chemo drugs are tech from the 1970's finally approved by the FDA in the 80's and those outcomes are well known. You die. Either you die quick from cardiac issues, infection issues, or metastasis / mutation of the original cancer. Or slower from those same things as your fundamental health declines. Or you get very lucky and it all just works and goes into remission.

Remission is good. It is a pass for a few years - maybe a few decades. Remission gives you learning time. After a few weeks in the ICU and Isolation I was sent home to die. I'd flunked out of treatment being politely advised I'd had my best shot - figure on a couple of years before organ failure and/or infection took over. I had no reason to doubt that analysis because I'm the last living member of my race team. All the guys I raced with have passed from cancer in various parts of anatomy including places like you have now. That was depressing. I didn't want help to cope but eventually needed to see someone about the medical bills who eased me into a counseling situation. I still think about that a lot. Getting help from people I didn't know and didn't understand who actually knew how to motivate me positively.

And fortunately I had more great car guy friends who felt that professional medical brush off was not appropriate nor was it a final pronouncement. They started looking for new tech treatment options while I learned how to become a human who could gain health while being terminally ill.

Remember this: Rest, Eliminate stress, Diet - healthy food. Modest quantities. Exercise - Just slow down and walk awhile every day. And learn about your specific cancer to the point where you can say the names of the drugs and read with understanding the entire precaution and indication label. Learn to speak DR language. There is a free news clip service from Google which will send you medical journal articles from the entire world on your specific cancer every day. Read them. You'll need to become cutting edge - better than the clinic level Dr in fact, who doesn't have time to keep up with research results and new drug trials.

I learned about Medical Tourism. You are taking a trip to see another doctor. That is a good move. But may I suggest it might be not far enough politically because it isn't out of the reach of the FDA and our screwed up policy driven medical care system. And you may be greatly benefited by getting into a medical trial - try for a phase three trial - at a research hospital. Put crudely, the local clinic is like a corner gas station for level of care and knowledge. A hospital is a lot like a car dealership, better care for a wider modeling of disease, but no specialization. A research college hospital is where the healing action is, but it is focused on a narrow specialty. They have new tech. New drugs. Far better monitoring and lab work. But you gotta find where the trial you need is and then go there. Then you have to get accepted.

You have to present yourself as a good candidate for the drug to work in. That means.... if you smoke quit. If you drink, stop. If you take any other drugs work with a doctor to minimize or quit them carefully. If you are overweight do what you need to do to get to a minimum target weight. Get your teeth / gums in outstanding condition. And have as vigorous sex life as you can. All this promotes life so the drugs can work better because your body is working better. Then a doctor will see you as a great candidate for his healing efforts and a drug company sponsoring the trial will be more assured you'll not die and poorly promote their new product. Most nations will agree the USA has the best health tech in the world. But there are a lot of places where access and administration of those discoveries is easier to attain.

In my case I worked up to the point I could qualify for getting some heart stints and the lung issues were proved stable so I became qualified for a trial if I gave up some blood thinners I didn't really need. That process took a year and the cancer had returned so it was none too soon. I found cancer treatment is exclusive if you are not careful. It excludes other options for treatment. Sometimes radiation might be better. Sometimes surgery might be the right move. But gaining health is always the right path as you select an optimum inclusion list of possible interventions.

In my case my buddies found a drug trial at OHSU and more or less twisted my arm until I called them and applied. I went there and am glad I did. From a situation where I was at near zero months left I'm here typing words to you 14 years into it. I've been in and out of remission 3 times. The modern drugs I've had access to take about two years of use to reach the end of effectiveness. Then I'm ok for about 2 years or so. I think I've adjusted my mindset to that cycle. I've done some of my best work automotive wise when in remission. And I've done a lot of construction and helped give back to people I care for. In treatment I still try every day to get something done. Gotta keep moving. Gotta keep sharp.

I've also arranged for my local oncologist to communicate directly with my oncologist at OHSU. It is possible to link hospital and medical records so all labs and procedures and notes are accessible in both facilities. It functions like a double entry bookkeeping system. If one doctor misses a trend or stops making sense I can cross check his work with the other physician. With cancer more heads are far better than one..... gotta get ego and rote procedure out of the treatment cycle. In these days of genetic level medicine you need personalized care - not a process sheet from the insurance company or medicare.

This last round of remission I had my heart removed so some arteries beneath it could be fixed. Then they put it back in and fixed a few more on top creating a bypass situation in there. Whew. Open heart surgery is a huge health improvement. Chemo drugs are hard on your heart. You need an oncologist who knows a great cardiologist and one who will be a team player in your care.

I've met many caregivers over the last 14 or so years of being in and out of treatment. And my friendships have grown and deepened with many friends. I've can't say enough good things about those who have gone way out of their way to ease my life and soul. I'd have to say, cancer has made me a better person. More human, more compassionate, a better man. I hope your journey, just beginning, will lead you to say that a decade or two from now.

Till then it's the Huey Lewis and the News song for us:

Lyrics

I want a new drug, one that won't make me sick
One that won't make me crash my car
Or make me feel three-feet thick
I want a new drug, one that won't hurt my head
One that won't make my mouth too dry
Or make my eyes too red
One that won't make me nervous
Wonderin' what to do
One that makes me feel like I feel when I'm with you
When I'm alone with you
I want a new drug, one that won't spill
One that don't cost too much
Or come in a pill
I want a new drug, one that won't go away
One that won't keep me up all night
One that won't make me sleep all day
One that won't make me nervous
Wonderin' what to do
One that makes me feel like I feel when I'm with you
I'm alone with you, baby
I'm alone with you, baby
I want a new drug, one that does what it should
One that won't make me feel too bad
One that won't make me feel too good
I want a new drug, one with no doubt
One that won't make me talk to much
Or make my face breakout
One that won't make me nervous
Wonderin' what to do
One that makes me feel like I feel when I'm with you
I'm alone with you
I'm alone with you, yeah, yeah

Wow, Thank you so much for caring. I love it. "Nova's Rule"
 

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reach out to the NIH government clinical studies group. A friend with 14 years of cancer has played test subject for the government and drug company's many trial drugs being tested and he's still hanging in there. The government is funding his flights, room, meals, and surgeries as they study his cancer, chordoma. He still feels good enough after the many recoveries to do volunteer work in his town to keep busy and continue enjoying life.

NIH Clinical Center, 10 Center Dr, Bethesda, MD, 20892. phone # 301-496-4000 is a good starting place. I've talked with them off and on over the years on other friends behalf trying to find them any information I could at the time.

Find out if the hospital or drug companies have any cancer drug trials going on at this time, or if they have any planned based on your particular diagnosis, if not, ask them if they know of any other medical research facilities that might be moving into that area of study. The Mayo clinic also works with some programs as many other medical institutions do. I can't think of the other two hospitals that do cancer studies and research but your browser should find you locations that reference your particular type of cancer.

There's Genentech, UC Davis in Davis, California, Amgenoncology.com, just to name a few. There are some good cancer clinics and hospitals all over the east coast, probably on the west coast as well. Look up cancer trials for a starting place. I was diagnosed with renal cell carcinoma last December a couple of weeks after one of my doctors just before Christmas, not good news but a surgeon was able to remove my tumor and saved my kidney. Now I get follow up Ct scans. Two scans post op and so far all clear, almost but close enough for now. Push ahead, enjoy life, lose unnecessary stress (noise is what my doctor calls it), keep your eyes on the target and good luck.
 

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reach out to the NIH government clinical studies group. A friend with 14 years of cancer has played test subject for the government and drug company's many trial drugs being tested and he's still hanging in there. The government is funding his flights, room, meals, and surgeries as they study his cancer, chordoma. He still feels good enough after the many recoveries to do volunteer work in his town to keep busy and continue enjoying life.

NIH Clinical Center, 10 Center Dr, Bethesda, MD, 20892. phone # 301-496-4000 is a good starting place. I've talked with them off and on over the years on other friends behalf trying to find them any information I could at the time.

Find out if the hospital or drug companies have any cancer drug trials going on at this time, or if they have any planned based on your particular diagnosis, if not, ask them if they know of any other medical research facilities that might be moving into that area of study. The Mayo clinic also works with some programs as many other medical institutions do. I can't think of the other two hospitals that do cancer studies and research but your browser should find you locations that reference your particular type of cancer.

There's Genentech, UC Davis in Davis, California, Amgenoncology.com, just to name a few. There are some good cancer clinics and hospitals all over the east coast, probably on the west coast as well. Look up cancer trials for a starting place. I was diagnosed with renal cell carcinoma last December a couple of weeks after one of my doctors just before Christmas, not good news but a surgeon was able to remove my tumor and saved my kidney. Now I get follow up Ct scans. Two scans post op and so far all clear, almost but close enough for now. Push ahead, enjoy life, lose unnecessary stress (noise is what my doctor calls it), keep your eyes on the target and good luck.
Also check with Memorial Sloan Kettering Cancer Center in New York City.
 

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Well all I was given 1-3 years to live last week due to Colorectal Cancer. (please learn the symptoms) Wife and I are heading to Chicago (from Indy) tomorrow for a second opinion. I just wanted to show off my "74" before then. Thanks to Chemo it took two days but I cleaned the hell out of the car. This thing is a dream come true to me!
Most sorry for your news, but treatment improvements are made every day. May God bless and care for you in your journey.
 
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