Still looking- found it!!!!!!

Sundanceh said:

Cheeks964
Hi there - I know you're scared, but let's take a look at some of this and try and make some sense out it.

Q: "do you think i'm going to have to have a lot of rounds of chemo. i'm so scared."

It's really hard to speak for your oncologist as to what his protocol will be. It sounds to me like his goal is to shrink the tumor with chemo and bust up its DNA replication with radiation.

The chemo cycle he prescribes could be as little as 3 of them, or he might do 6. After chemo protocols are usually 12 treatments over 6-months. He'll just have to tell you what his approach is and what response he is expecting to see.

As for radiation, I would anticipate 15 of those as a guesstimate, but it could go as high as 25-30...again, just depends on what they are trying to achieve.

After radiation, you will probably have a 6-week lag before surgery...this will allow some of the tissue to heal prior to surgery. I did not have cancer in the sacrum but I know of a guy who had, his was stage IV, so his treatment and surgeries were aggressive. He does not frequent this board routinely and he has recently had another recurrence.

I learned about this experience through him and why I can't speak for him, I'll try and do my best to paraphrase what I think he would say. First, the sacrum is a tough spot...it's right there at the base between the butt-bone and the spine.

I'm not going to mislead you...radiation can help but it is surely going to have an effect on you as well....and it won't be overnight or a year, it will be permanent as radiation's intent is to kill or damage the tumor cells ability to replicate. As much healthy tissue would be spared but there is always some overlap - so be prepared.

I've had radiation 55x now....25x to the butt and both hips and up my back....30x more to my right lung. There will be collateral damage, there is just no getting around it. You know what a sunburn does to your skin, so this will be happening on the inside.

I would imagine there will be some stiffness in your joints and that movement like getting up and down or turning will be somewhat painful. Radiation continues to work long after the treatment has stopped, so issues you may experience could intensify or stay steady for quite some time and perhaps for life.

The procedure itself is not painful....they will chart you and mark the spots...they tatoo you to mark the area to map their coordinates. They will make a form for you to lay still in for the treatments. You come in and do the treatments and the techs will position the machine to various points where it needs to go. Some of it is automatic while the table rotates and they might come in to make some positional changes etc. etc.

Radiation is cumulative - it builds the toxicity up steadily with each dose. It's usually about 3 weeks or 15 treatments in when you start to notice and feel the effects. It's very fatiguing and you will be exhausted, tired beyond anything you've ever been before. My advice is to rest as much as possible - your body will call for it and you will need to listen to it. Just rest and sleep - get up when you can, that type of thing.

The extreme fatigue will follow you up to a month after treatment stops....slowly, you will feel your strength returning to you. So, don't panic...it's a heavy treatment and it takes some time to recover from that.

Now, as to chemo, depends on what chemo they give you...they each have their own set of side effects....each of us seems to handle those differently. Some do well, while other folks have it rougher. Folfox is known for cold sensitivity in the feet and fingers and especially the throat, where you can't drink cold liquids, only room temp or perhaps heated beverages.

Neuropathy is a result of Folfox and depending on how many, the side effects could be temporary or perhaps lasting. Folfiri is different, diarrhea and cramping are side effects, most people lose their hair with this drug, or thin severely. It's highly fatiguing too, nausea etc. etc.

Both of those drugs are effective at reducing tumors though. None of us want to be sick, but since we all react differently from everything from alcohol to aspirin, there is no way to know how you react until you do them. Your onc will have medications to help with the side effects - just report all of your symptoms and complains to him, so it can go on the record and they can address them.

I'm a believer in the truth - as this helps us to better wrap our minds around what we are dealing with, so we can gear our minds to fight. I didn't want to sugar coat this or tie a bow around it to make it look better. It's rough, no doubt about it. All of us have done it and many of us have done it more than once.

I've had cancer 3x and walked away 3x - I've been in the battle for 8-years now and am still standing going strong...still work etc etc. There have been many challenges but we can talk about that later...I don't want to overload you too much.

But, I believe we are doing a service by telling you what you MIGHT face, so that it does come as a surpise like it did too many of us - who did not have this forum when we all started out.

Unfortunately, the doctors don't give us a heads up and give us any warnings to the stuff they have us do - they wait for the patient to bring the problem to them. Well, this post is going to give you a head start on what your doctor - and many, many doctors lack the courage and conviction to tell us beforehand.

We're all adults - and as such, can handle the truth - but for reasons of liability or whatever, they shade or color the truth, if not outright omit information that would help us.

Lastly, as for the holistic approach, that is certainly an option. You would have to ask yourself if you feel comfortable enough to have this as the main weapon in your arsenal. Most of us fight a convential battle - some have mixed in some alternatives with traditional treatments etc. etc.

Everyone has to make their own choice - there is no right or wrong way - only a way. There is no single answer to cancer. What works for some - wont' for others.

Wishing you the best as you go forward - be sure to come back often and post your questions and results - and we'll try and help you if we can.

-Craig

Sundanceh said:

Cheeks964
Hi there - I know you're scared, but let's take a look at some of this and try and make some sense out it.

Q: "do you think i'm going to have to have a lot of rounds of chemo. i'm so scared."

It's really hard to speak for your oncologist as to what his protocol will be. It sounds to me like his goal is to shrink the tumor with chemo and bust up its DNA replication with radiation.

The chemo cycle he prescribes could be as little as 3 of them, or he might do 6. After chemo protocols are usually 12 treatments over 6-months. He'll just have to tell you what his approach is and what response he is expecting to see.

As for radiation, I would anticipate 15 of those as a guesstimate, but it could go as high as 25-30...again, just depends on what they are trying to achieve.

After radiation, you will probably have a 6-week lag before surgery...this will allow some of the tissue to heal prior to surgery. I did not have cancer in the sacrum but I know of a guy who had, his was stage IV, so his treatment and surgeries were aggressive. He does not frequent this board routinely and he has recently had another recurrence.

I learned about this experience through him and why I can't speak for him, I'll try and do my best to paraphrase what I think he would say. First, the sacrum is a tough spot...it's right there at the base between the butt-bone and the spine.

I'm not going to mislead you...radiation can help but it is surely going to have an effect on you as well....and it won't be overnight or a year, it will be permanent as radiation's intent is to kill or damage the tumor cells ability to replicate. As much healthy tissue would be spared but there is always some overlap - so be prepared.

I've had radiation 55x now....25x to the butt and both hips and up my back....30x more to my right lung. There will be collateral damage, there is just no getting around it. You know what a sunburn does to your skin, so this will be happening on the inside.

I would imagine there will be some stiffness in your joints and that movement like getting up and down or turning will be somewhat painful. Radiation continues to work long after the treatment has stopped, so issues you may experience could intensify or stay steady for quite some time and perhaps for life.

The procedure itself is not painful....they will chart you and mark the spots...they tatoo you to mark the area to map their coordinates. They will make a form for you to lay still in for the treatments. You come in and do the treatments and the techs will position the machine to various points where it needs to go. Some of it is automatic while the table rotates and they might come in to make some positional changes etc. etc.

Radiation is cumulative - it builds the toxicity up steadily with each dose. It's usually about 3 weeks or 15 treatments in when you start to notice and feel the effects. It's very fatiguing and you will be exhausted, tired beyond anything you've ever been before. My advice is to rest as much as possible - your body will call for it and you will need to listen to it. Just rest and sleep - get up when you can, that type of thing.

The extreme fatigue will follow you up to a month after treatment stops....slowly, you will feel your strength returning to you. So, don't panic...it's a heavy treatment and it takes some time to recover from that.

Now, as to chemo, depends on what chemo they give you...they each have their own set of side effects....each of us seems to handle those differently. Some do well, while other folks have it rougher. Folfox is known for cold sensitivity in the feet and fingers and especially the throat, where you can't drink cold liquids, only room temp or perhaps heated beverages.

Neuropathy is a result of Folfox and depending on how many, the side effects could be temporary or perhaps lasting. Folfiri is different, diarrhea and cramping are side effects, most people lose their hair with this drug, or thin severely. It's highly fatiguing too, nausea etc. etc.

Both of those drugs are effective at reducing tumors though. None of us want to be sick, but since we all react differently from everything from alcohol to aspirin, there is no way to know how you react until you do them. Your onc will have medications to help with the side effects - just report all of your symptoms and complains to him, so it can go on the record and they can address them.

I'm a believer in the truth - as this helps us to better wrap our minds around what we are dealing with, so we can gear our minds to fight. I didn't want to sugar coat this or tie a bow around it to make it look better. It's rough, no doubt about it. All of us have done it and many of us have done it more than once.

I've had cancer 3x and walked away 3x - I've been in the battle for 8-years now and am still standing going strong...still work etc etc. There have been many challenges but we can talk about that later...I don't want to overload you too much.

But, I believe we are doing a service by telling you what you MIGHT face, so that it does come as a surpise like it did too many of us - who did not have this forum when we all started out.

Unfortunately, the doctors don't give us a heads up and give us any warnings to the stuff they have us do - they wait for the patient to bring the problem to them. Well, this post is going to give you a head start on what your doctor - and many, many doctors lack the courage and conviction to tell us beforehand.

We're all adults - and as such, can handle the truth - but for reasons of liability or whatever, they shade or color the truth, if not outright omit information that would help us.

Lastly, as for the holistic approach, that is certainly an option. You would have to ask yourself if you feel comfortable enough to have this as the main weapon in your arsenal. Most of us fight a convential battle - some have mixed in some alternatives with traditional treatments etc. etc.

Everyone has to make their own choice - there is no right or wrong way - only a way. There is no single answer to cancer. What works for some - wont' for others.

Wishing you the best as you go forward - be sure to come back often and post your questions and results - and we'll try and help you if we can.

-Craig

Sundanceh said:

Cheeks964
Hi there - I know you're scared, but let's take a look at some of this and try and make some sense out it.

Q: "do you think i'm going to have to have a lot of rounds of chemo. i'm so scared."

It's really hard to speak for your oncologist as to what his protocol will be. It sounds to me like his goal is to shrink the tumor with chemo and bust up its DNA replication with radiation.

The chemo cycle he prescribes could be as little as 3 of them, or he might do 6. After chemo protocols are usually 12 treatments over 6-months. He'll just have to tell you what his approach is and what response he is expecting to see.

As for radiation, I would anticipate 15 of those as a guesstimate, but it could go as high as 25-30...again, just depends on what they are trying to achieve.

After radiation, you will probably have a 6-week lag before surgery...this will allow some of the tissue to heal prior to surgery. I did not have cancer in the sacrum but I know of a guy who had, his was stage IV, so his treatment and surgeries were aggressive. He does not frequent this board routinely and he has recently had another recurrence.

I learned about this experience through him and why I can't speak for him, I'll try and do my best to paraphrase what I think he would say. First, the sacrum is a tough spot...it's right there at the base between the butt-bone and the spine.

I'm not going to mislead you...radiation can help but it is surely going to have an effect on you as well....and it won't be overnight or a year, it will be permanent as radiation's intent is to kill or damage the tumor cells ability to replicate. As much healthy tissue would be spared but there is always some overlap - so be prepared.

I've had radiation 55x now....25x to the butt and both hips and up my back....30x more to my right lung. There will be collateral damage, there is just no getting around it. You know what a sunburn does to your skin, so this will be happening on the inside.

I would imagine there will be some stiffness in your joints and that movement like getting up and down or turning will be somewhat painful. Radiation continues to work long after the treatment has stopped, so issues you may experience could intensify or stay steady for quite some time and perhaps for life.

The procedure itself is not painful....they will chart you and mark the spots...they tatoo you to mark the area to map their coordinates. They will make a form for you to lay still in for the treatments. You come in and do the treatments and the techs will position the machine to various points where it needs to go. Some of it is automatic while the table rotates and they might come in to make some positional changes etc. etc.

Radiation is cumulative - it builds the toxicity up steadily with each dose. It's usually about 3 weeks or 15 treatments in when you start to notice and feel the effects. It's very fatiguing and you will be exhausted, tired beyond anything you've ever been before. My advice is to rest as much as possible - your body will call for it and you will need to listen to it. Just rest and sleep - get up when you can, that type of thing.

The extreme fatigue will follow you up to a month after treatment stops....slowly, you will feel your strength returning to you. So, don't panic...it's a heavy treatment and it takes some time to recover from that.

Now, as to chemo, depends on what chemo they give you...they each have their own set of side effects....each of us seems to handle those differently. Some do well, while other folks have it rougher. Folfox is known for cold sensitivity in the feet and fingers and especially the throat, where you can't drink cold liquids, only room temp or perhaps heated beverages.

Neuropathy is a result of Folfox and depending on how many, the side effects could be temporary or perhaps lasting. Folfiri is different, diarrhea and cramping are side effects, most people lose their hair with this drug, or thin severely. It's highly fatiguing too, nausea etc. etc.

Both of those drugs are effective at reducing tumors though. None of us want to be sick, but since we all react differently from everything from alcohol to aspirin, there is no way to know how you react until you do them. Your onc will have medications to help with the side effects - just report all of your symptoms and complains to him, so it can go on the record and they can address them.

I'm a believer in the truth - as this helps us to better wrap our minds around what we are dealing with, so we can gear our minds to fight. I didn't want to sugar coat this or tie a bow around it to make it look better. It's rough, no doubt about it. All of us have done it and many of us have done it more than once.

I've had cancer 3x and walked away 3x - I've been in the battle for 8-years now and am still standing going strong...still work etc etc. There have been many challenges but we can talk about that later...I don't want to overload you too much.

But, I believe we are doing a service by telling you what you MIGHT face, so that it does come as a surpise like it did too many of us - who did not have this forum when we all started out.

Unfortunately, the doctors don't give us a heads up and give us any warnings to the stuff they have us do - they wait for the patient to bring the problem to them. Well, this post is going to give you a head start on what your doctor - and many, many doctors lack the courage and conviction to tell us beforehand.

We're all adults - and as such, can handle the truth - but for reasons of liability or whatever, they shade or color the truth, if not outright omit information that would help us.

Lastly, as for the holistic approach, that is certainly an option. You would have to ask yourself if you feel comfortable enough to have this as the main weapon in your arsenal. Most of us fight a convential battle - some have mixed in some alternatives with traditional treatments etc. etc.

Everyone has to make their own choice - there is no right or wrong way - only a way. There is no single answer to cancer. What works for some - wont' for others.

Wishing you the best as you go forward - be sure to come back often and post your questions and results - and we'll try and help you if we can.

-Craig

smokeyjoe said:

Craig, nice reply, well
Craig, nice reply, well put. I have a question not sure if you can answer it Craig...but didn't Rickmurtagh have a similar thing and it ended up being some kind of infection that behaved just like cancer. They didn't know what it was until surgery...have not seen him post in ages. Cheeks have you gotten a second opinion, maybe second set of eyes will give a different perspective on this.

smokeyjoe said:

Craig, nice reply, well
Craig, nice reply, well put. I have a question not sure if you can answer it Craig...but didn't Rickmurtagh have a similar thing and it ended up being some kind of infection that behaved just like cancer. They didn't know what it was until surgery...have not seen him post in ages. Cheeks have you gotten a second opinion, maybe second set of eyes will give a different perspective on this.