My brother Paul has cancer
I live in Florida and he in Missouri. I will be leaving Sunday to stay with him as long as it takes for him to beat this horrible disease. I must say this network has already helped me to understand more of what he will be going through. Actually, this web site is like a wealth of knowledge and a gift to those who face this tough road. However, I do still have some questions and would appreciate it if someone would share their information.
The doctor stated he must see a dentist prior to having any radiation treatment as the radiation will kill any teeth that are not perfect. I have read else where that the treatments really kill the jawbone and that is the real reason most or all the teeth must be extracted. Perhaps I have not read the right discussions but is this the first step? Also he is just having radiation not chemo. I would think he would need both. He was informed that the radiation will anger the cancer...what does that mean? The doctor also told him before treatments to try and gain back as much weight as possible. I certainly understand that but the doctor urged him to eat lots of beef and fish. Is there anything else he should be eating which will help his weight gain? He will be having a feeding tube and after reading the discussions, he should be doing this before his treatments begin. Will the doctor advise what nutrition he should have on a daily basis? If not, where should I go to find out? Paul said, he could lose part of his tongue. Are the operations performed before, during or after the radiation? And, last but I am sure I will think of more later, he was told he has a 50/50 chance. Please tell me that is good enough to beat this.
Thanks so much for your help.
Susan
Comments
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Some answers to your questions
Paulssister,
First, let me say that I am sorry to hear that your brother has to travel this road, but as you can see, there are allot of us that have gone down the path before him and we are doing pretty good. As you mentioned, there is a wealth of information here, so do as you have already started, ask questions to find answers. I will attempt to answer some of them now.
I too am a Base of Tongue Cancer patient/ survivor. I had part of my tongue removed and then it was reattached. I had 30 Radiation treatments without any Chemo as your brother will receive.
I had a operation to have the Peg Tube installed at the same time as my radical neck disection and removal of the tumor on my tongue. It would be better to have the Peg tube inserted prior to radiation treatments. Paul has lumps on his neck, they are lymphnodes filtering the cancer cells. They may be removed by a neck disection as mine were. After the operation(s), there will be a 6-7 week healing period for the tissue to heal before the radiation treatments start.
After the radiation starts, the first few weeks are not too bad, but the radiation is accumlative and the effects increase. The road gets bumpy here and after the treatments are done, it might be another 4-5 weeks before he slowly, and I mean slowly starts to recover. Each person reacts differently, I am giving you the worse case input. He might actually handle everything very well compared to some of the other patients he will see at the treatments.
The nutrition that he will put in his Peg Tube will be as the Doctor instructs or what his insurance will pay for. The Peg is a back-up for him when his mouth gets to sore to eat orally. He will need to swallow water daily no matter what so he doesn't loose the swallow motion, this is very important, to continue to swallow daily. He needs to take in 12 times his body weight with calories. If he weighs 200 pounds, he needs 2400 calories each day to maintain his weight. The Doctors advise to gain weight before treatment, because nearly everyone loses weight during the treatments.
50/50 chance. Don't read allot into numbers, many numbers are outdated, you can worry yourself sick looking at the odds of survival. I know, I did it at first also. Most of the numbers are based on a 5 year survival rate. I can tell you I have passed that mark. Am I able to do the same things before cancer, no, but I am able to do allot of things, we find a " New Normal ". He will get through this. I know people that were told they had 2 years to live, that was 8 years ago and they are here and going strong, so the Doctors don't know everything. They are good, but they are looking at numbers.
Remember this, it isn't the size of the dog in the fight, it is the size of the Fight in the dog that matters.
My Best to Both of You and Everyone Here0 -
Some answers
Hi Susan
Your brother has an excellent chance of beating this cancer. I'll answer the questions I know. Removing all the teeth is not normally done nowadays. That is an antiquated approach to treatment which concerns me. Thats not just me talking but a direct quote from one of the countries leading experts and oncologist who addressed my cancer group last month. It is possible your brother has very bad teeth to begin with and the doctor is right????Radiation weakens the jaw bone and really limits blood flow to the jaw bone. Extractions become very difficult when the jaw bone is brittle and cannot heal because of limited blood flow. For the record he should see a dentist experienced with head and neck cancer patients and have a full evaluation of his teeth conducted. Any questionable teeth should be extracted. Healthy teeth can remain. I had zero teeth extracted.
He should really be eating anything he likes to put on weight. Now is the time to eat with reckless abandon and eat anything he likes, especially his favorites as taste buds may never be the same.
Since he is starting out 30lbs already gone, a feeding tube is a great idea and it almost always makes sense. Yes it's normally done prior to treatment. The doctor is doing the preliminary steps now. Other preliminary steps include baseline swallowing tests and hearing tests for later comparison as both of these functions can be impaired.
Yes he could lose part of his tongue. Hard to tell without more information, does he have base of the tongue cancer or is it literally on the back of his tongue? Surgery can be performed before or after radiation. Surgeons prefer before because the tissue has not yet been damaged by radiation but it is done both ways. This is common with neck disections. Tongue surgery is more common prior to radiation.
It is unusual that chemo is not being recommended and I certainly would question that? 50/50 is the old standard that you find all over the internet based on 20 year old information. I would guess his odds are much better. Please don't be afraid to seek a second opinin at a hospital that specializes in head and neck cancer. Go to a comprehensive treatment facility utilizing a team and tumor board concept accredited by ACS. All that information is available right on this sight.
Find out what your brother's cancer is staged at and post it here and we can help you further. There is an international staging coding system that uses numbers and letters.
I'm sorry you have to undertake this journey but what a great caregiver you will be and what an asset to your brother. All my best to both of you.0 -
Thank you!MarineE5 said:Some answers to your questions
Paulssister,
First, let me say that I am sorry to hear that your brother has to travel this road, but as you can see, there are allot of us that have gone down the path before him and we are doing pretty good. As you mentioned, there is a wealth of information here, so do as you have already started, ask questions to find answers. I will attempt to answer some of them now.
I too am a Base of Tongue Cancer patient/ survivor. I had part of my tongue removed and then it was reattached. I had 30 Radiation treatments without any Chemo as your brother will receive.
I had a operation to have the Peg Tube installed at the same time as my radical neck disection and removal of the tumor on my tongue. It would be better to have the Peg tube inserted prior to radiation treatments. Paul has lumps on his neck, they are lymphnodes filtering the cancer cells. They may be removed by a neck disection as mine were. After the operation(s), there will be a 6-7 week healing period for the tissue to heal before the radiation treatments start.
After the radiation starts, the first few weeks are not too bad, but the radiation is accumlative and the effects increase. The road gets bumpy here and after the treatments are done, it might be another 4-5 weeks before he slowly, and I mean slowly starts to recover. Each person reacts differently, I am giving you the worse case input. He might actually handle everything very well compared to some of the other patients he will see at the treatments.
The nutrition that he will put in his Peg Tube will be as the Doctor instructs or what his insurance will pay for. The Peg is a back-up for him when his mouth gets to sore to eat orally. He will need to swallow water daily no matter what so he doesn't loose the swallow motion, this is very important, to continue to swallow daily. He needs to take in 12 times his body weight with calories. If he weighs 200 pounds, he needs 2400 calories each day to maintain his weight. The Doctors advise to gain weight before treatment, because nearly everyone loses weight during the treatments.
50/50 chance. Don't read allot into numbers, many numbers are outdated, you can worry yourself sick looking at the odds of survival. I know, I did it at first also. Most of the numbers are based on a 5 year survival rate. I can tell you I have passed that mark. Am I able to do the same things before cancer, no, but I am able to do allot of things, we find a " New Normal ". He will get through this. I know people that were told they had 2 years to live, that was 8 years ago and they are here and going strong, so the Doctors don't know everything. They are good, but they are looking at numbers.
Remember this, it isn't the size of the dog in the fight, it is the size of the Fight in the dog that matters.
My Best to Both of You and Everyone Here
From the bottom of my heart, I thank you. At this point I am so stressed and your response has given me hope. When you first hear about the disease, the first thing that comes to mind is the worst. We just lost our mother to lung cancer two years ago so it feels like that we have just re-entered the "twilight zone." I know it is most important for me to stand strong and help Paul get through this and I will keep your email with me and read it every time I need more strength.
God bless you.
Kind regards,
Susan0 -
Thank you!ratface said:Some answers
Hi Susan
Your brother has an excellent chance of beating this cancer. I'll answer the questions I know. Removing all the teeth is not normally done nowadays. That is an antiquated approach to treatment which concerns me. Thats not just me talking but a direct quote from one of the countries leading experts and oncologist who addressed my cancer group last month. It is possible your brother has very bad teeth to begin with and the doctor is right????Radiation weakens the jaw bone and really limits blood flow to the jaw bone. Extractions become very difficult when the jaw bone is brittle and cannot heal because of limited blood flow. For the record he should see a dentist experienced with head and neck cancer patients and have a full evaluation of his teeth conducted. Any questionable teeth should be extracted. Healthy teeth can remain. I had zero teeth extracted.
He should really be eating anything he likes to put on weight. Now is the time to eat with reckless abandon and eat anything he likes, especially his favorites as taste buds may never be the same.
Since he is starting out 30lbs already gone, a feeding tube is a great idea and it almost always makes sense. Yes it's normally done prior to treatment. The doctor is doing the preliminary steps now. Other preliminary steps include baseline swallowing tests and hearing tests for later comparison as both of these functions can be impaired.
Yes he could lose part of his tongue. Hard to tell without more information, does he have base of the tongue cancer or is it literally on the back of his tongue? Surgery can be performed before or after radiation. Surgeons prefer before because the tissue has not yet been damaged by radiation but it is done both ways. This is common with neck disections. Tongue surgery is more common prior to radiation.
It is unusual that chemo is not being recommended and I certainly would question that? 50/50 is the old standard that you find all over the internet based on 20 year old information. I would guess his odds are much better. Please don't be afraid to seek a second opinin at a hospital that specializes in head and neck cancer. Go to a comprehensive treatment facility utilizing a team and tumor board concept accredited by ACS. All that information is available right on this sight.
Find out what your brother's cancer is staged at and post it here and we can help you further. There is an international staging coding system that uses numbers and letters.
I'm sorry you have to undertake this journey but what a great caregiver you will be and what an asset to your brother. All my best to both of you.
I cannot tell you how much your response helps me. I have also sent it to my brother, Paul as I am sure it will help him as well.
The doctor is sending him to a dentist to have his teeth checked for any problems and if there are none, then yes, he will be able to keep them...I think I became overwhelmed after reading a segment from a lady whose husband had to have all his teeth removed and I just figured this is what Paul would have to do.
When I go to the doctor with him, I will ask about the chemo and see what his response is.
According to what I can understand, the cancer is at the back of the tongue but I will find out more from Paul and the doctor and also what stage.
Thank you so much for taking the time to write. I truly, truly appreciate it.
Kind regards,
Susan0 -
Paul's cancerratface said:Some answers
Hi Susan
Your brother has an excellent chance of beating this cancer. I'll answer the questions I know. Removing all the teeth is not normally done nowadays. That is an antiquated approach to treatment which concerns me. Thats not just me talking but a direct quote from one of the countries leading experts and oncologist who addressed my cancer group last month. It is possible your brother has very bad teeth to begin with and the doctor is right????Radiation weakens the jaw bone and really limits blood flow to the jaw bone. Extractions become very difficult when the jaw bone is brittle and cannot heal because of limited blood flow. For the record he should see a dentist experienced with head and neck cancer patients and have a full evaluation of his teeth conducted. Any questionable teeth should be extracted. Healthy teeth can remain. I had zero teeth extracted.
He should really be eating anything he likes to put on weight. Now is the time to eat with reckless abandon and eat anything he likes, especially his favorites as taste buds may never be the same.
Since he is starting out 30lbs already gone, a feeding tube is a great idea and it almost always makes sense. Yes it's normally done prior to treatment. The doctor is doing the preliminary steps now. Other preliminary steps include baseline swallowing tests and hearing tests for later comparison as both of these functions can be impaired.
Yes he could lose part of his tongue. Hard to tell without more information, does he have base of the tongue cancer or is it literally on the back of his tongue? Surgery can be performed before or after radiation. Surgeons prefer before because the tissue has not yet been damaged by radiation but it is done both ways. This is common with neck disections. Tongue surgery is more common prior to radiation.
It is unusual that chemo is not being recommended and I certainly would question that? 50/50 is the old standard that you find all over the internet based on 20 year old information. I would guess his odds are much better. Please don't be afraid to seek a second opinin at a hospital that specializes in head and neck cancer. Go to a comprehensive treatment facility utilizing a team and tumor board concept accredited by ACS. All that information is available right on this sight.
Find out what your brother's cancer is staged at and post it here and we can help you further. There is an international staging coding system that uses numbers and letters.
I'm sorry you have to undertake this journey but what a great caregiver you will be and what an asset to your brother. All my best to both of you.
Paul's cancer is at stage 3. He told me he will have, during his radiation treatments, 3 chemo treatments. He is going to the dentist next week. He will also, next week, have a biopsy of his tongue done and the feeding tube inserted. He will spend the night at the hospital. After that his radiation treatments will begin and will last approximately 6-8 weeks.
Thanks for any information you can provide regarding the staging coding system.
Susan0 -
Hi SusanPaulssister said:Paul's cancer
Paul's cancer is at stage 3. He told me he will have, during his radiation treatments, 3 chemo treatments. He is going to the dentist next week. He will also, next week, have a biopsy of his tongue done and the feeding tube inserted. He will spend the night at the hospital. After that his radiation treatments will begin and will last approximately 6-8 weeks.
Thanks for any information you can provide regarding the staging coding system.
Susan
You have the two champions Marine & Rat helping when it comes to tongue cancer, so I will only say Hi and welcome you to our family.
Take care and keep posting on how Paul is doing0 -
Similar situationPaulssister said:Paul's cancer
Paul's cancer is at stage 3. He told me he will have, during his radiation treatments, 3 chemo treatments. He is going to the dentist next week. He will also, next week, have a biopsy of his tongue done and the feeding tube inserted. He will spend the night at the hospital. After that his radiation treatments will begin and will last approximately 6-8 weeks.
Thanks for any information you can provide regarding the staging coding system.
Susan
Hi Susan,
My husband was also diagnosed with Stage 3 base of tongue cancer which was confirmed to be HPV+ after a tongue biopsy. He is at the end of his 7 weeks of chemo and rads this week. He had a feeding tube put in 2 weeks prior to treatment which has truly been a lifesaver. We were told the success rate was 90/95% so we are very hopeful. It is so hard to wrap your head around everything in the beginning. My heart goes out to you and your brother.0 -
Welcome to the ForumPaulssister said:Paul's cancer
Paul's cancer is at stage 3. He told me he will have, during his radiation treatments, 3 chemo treatments. He is going to the dentist next week. He will also, next week, have a biopsy of his tongue done and the feeding tube inserted. He will spend the night at the hospital. After that his radiation treatments will begin and will last approximately 6-8 weeks.
Thanks for any information you can provide regarding the staging coding system.
Susan
I agree with Hondo, very knowledgeable advice and experience from the members above.
I agree with Ratface as for the thinking on dental and teeth removal. I had tonsil cancer with a lymphnode involved as well, making mine Tonsil Cancer SCC - STG III HPV+. I also had my dental work checked out before radiation started, and also had no teethe extracted. I am one year out from all of my treatment (nine weeks of heavy chemo, then seven weeks of weekly chemo with daily radiation). The latter being similar to your brothers treatment plan. The only surgery I had was for the tonsils being removed.
I started out with plenty of weight and didn't need a PEG inserted.
Also, to get back to dental, I just went this last week and had a few fillings and a crown. These were from older fillings that have wear and damage. I don't really think it's been accelerated by the radiation as this isn't uncommon from my history.
Also, like Ratface says, don't pay attention to statistics, most are old, and everyone is different. Recent history suggests that HPV related H&N cancer tends to respond well to chemo and chemo/radiation. Not sure if they checked the biopsy for HPV or not...
Good Luck and God Bless,
John
PS where in Florida, I'm in Lakeland between Orlando and Tampa....0 -
Paul's cancerSkiffin16 said:Welcome to the Forum
I agree with Hondo, very knowledgeable advice and experience from the members above.
I agree with Ratface as for the thinking on dental and teeth removal. I had tonsil cancer with a lymphnode involved as well, making mine Tonsil Cancer SCC - STG III HPV+. I also had my dental work checked out before radiation started, and also had no teethe extracted. I am one year out from all of my treatment (nine weeks of heavy chemo, then seven weeks of weekly chemo with daily radiation). The latter being similar to your brothers treatment plan. The only surgery I had was for the tonsils being removed.
I started out with plenty of weight and didn't need a PEG inserted.
Also, to get back to dental, I just went this last week and had a few fillings and a crown. These were from older fillings that have wear and damage. I don't really think it's been accelerated by the radiation as this isn't uncommon from my history.
Also, like Ratface says, don't pay attention to statistics, most are old, and everyone is different. Recent history suggests that HPV related H&N cancer tends to respond well to chemo and chemo/radiation. Not sure if they checked the biopsy for HPV or not...
Good Luck and God Bless,
John
PS where in Florida, I'm in Lakeland between Orlando and Tampa....
John..
Paul was a little confused when I told him I had joined this web site. He couldn't understand why I would need "help." However, after forwarding him the responses I have received and explaining to him that I want to know as much as possible about this disease so we can beat this beast together, he too is now appreciative of all the support we have received.
I did read a little about HPV on the National Cancer Institute web site. It stated it was better to have it than no to have it. I will make sure when we find out the results of the biopsy whether or not he has it.
We live in Jacksonville. Moved here from Virginia about 5 years ago. My husband has become a huge Jaguar fan but I am not so taken with them. However, it is fun to go to the games.
Paul is telling our father about his condition as I write. I am concerned about my father as he cared for our mother for a couple of years while she battled (and lost) to lung cancer two years ago. He is old and frail and I am sure he is not going to look forward to jumping in with both feet...but whatever it takes, I am sure he will do it.
John again, thank you. This web site and the folks who are here for others are certainly an inspiration.
Kind regards,
Susan0 -
Paul's cancerLena Rose said:Similar situation
Hi Susan,
My husband was also diagnosed with Stage 3 base of tongue cancer which was confirmed to be HPV+ after a tongue biopsy. He is at the end of his 7 weeks of chemo and rads this week. He had a feeding tube put in 2 weeks prior to treatment which has truly been a lifesaver. We were told the success rate was 90/95% so we are very hopeful. It is so hard to wrap your head around everything in the beginning. My heart goes out to you and your brother.
Lena Rose...
Thank you for your kind words and telling me about your husband's road to recovery. All of you folks on this web site are truly an inspiration to me and, although just a few short hours from learning about Paul's condition, I truly feel hope today where yesterday I felt none.
Please give your husband a hug for me...and you another.
Kind regards,
Susan0 -
Paul's cancerHondo said:Hi Susan
You have the two champions Marine & Rat helping when it comes to tongue cancer, so I will only say Hi and welcome you to our family.
Take care and keep posting on how Paul is doing
Hondo...
Thank you for the warm welcome. I will definitely keep in touch. This web site and all of you have given me the strength I need to go forward and help my brother win this battle!
Kind regards,
Susan0 -
Hi SusanPaulssister said:Paul's cancer
John..
Paul was a little confused when I told him I had joined this web site. He couldn't understand why I would need "help." However, after forwarding him the responses I have received and explaining to him that I want to know as much as possible about this disease so we can beat this beast together, he too is now appreciative of all the support we have received.
I did read a little about HPV on the National Cancer Institute web site. It stated it was better to have it than no to have it. I will make sure when we find out the results of the biopsy whether or not he has it.
We live in Jacksonville. Moved here from Virginia about 5 years ago. My husband has become a huge Jaguar fan but I am not so taken with them. However, it is fun to go to the games.
Paul is telling our father about his condition as I write. I am concerned about my father as he cared for our mother for a couple of years while she battled (and lost) to lung cancer two years ago. He is old and frail and I am sure he is not going to look forward to jumping in with both feet...but whatever it takes, I am sure he will do it.
John again, thank you. This web site and the folks who are here for others are certainly an inspiration.
Kind regards,
Susan
My dad was told in March that he had base of the tongue cancer, stage 3 also. He is getting close to the end of his treatment. I had 35 weeks of rad and weekly chemo. He has been one of the lucky ones and has done great so far. Like you brother he also lost a lot of weight before diagnosis from not being able to eat. So far suring treatment he has only lost about 8-10 pounds. He did not have a feeding tube put in. He is a large guy with plenty of extra weight. I was very nervous and confused but have found out so much from this board that has helped us through this process. My dad went through a really rough period at the beinging but found out that is blood pressure meds were the problem, since then he has been getting better.
He has alot of problems with mucus, normally more so on the days after chemo. His throat is very sore but not horrible.
I know that your brother will beat this and you will be there to help him. At times it has been really hard on my mom and I when we had to fuss at him to drink and move around more but, when they told us how well he is doing and makes everything.
Best of luck and please keep in touch.0 -
Pumakitty...Pumakitty said:Hi Susan
My dad was told in March that he had base of the tongue cancer, stage 3 also. He is getting close to the end of his treatment. I had 35 weeks of rad and weekly chemo. He has been one of the lucky ones and has done great so far. Like you brother he also lost a lot of weight before diagnosis from not being able to eat. So far suring treatment he has only lost about 8-10 pounds. He did not have a feeding tube put in. He is a large guy with plenty of extra weight. I was very nervous and confused but have found out so much from this board that has helped us through this process. My dad went through a really rough period at the beinging but found out that is blood pressure meds were the problem, since then he has been getting better.
He has alot of problems with mucus, normally more so on the days after chemo. His throat is very sore but not horrible.
I know that your brother will beat this and you will be there to help him. At times it has been really hard on my mom and I when we had to fuss at him to drink and move around more but, when they told us how well he is doing and makes everything.
Best of luck and please keep in touch.
Om my, what a
Pumakitty...
Om my, what a road you, your mother and father have had to travel. I appreciate your kind words and admire your strengh through this trying time. I will keep you posted about Paul and also keep you, your family and everyone on this web site in my prayers.
Kind regards,
Susan0 -
SCCPumakitty said:Hi Susan
My dad was told in March that he had base of the tongue cancer, stage 3 also. He is getting close to the end of his treatment. I had 35 weeks of rad and weekly chemo. He has been one of the lucky ones and has done great so far. Like you brother he also lost a lot of weight before diagnosis from not being able to eat. So far suring treatment he has only lost about 8-10 pounds. He did not have a feeding tube put in. He is a large guy with plenty of extra weight. I was very nervous and confused but have found out so much from this board that has helped us through this process. My dad went through a really rough period at the beinging but found out that is blood pressure meds were the problem, since then he has been getting better.
He has alot of problems with mucus, normally more so on the days after chemo. His throat is very sore but not horrible.
I know that your brother will beat this and you will be there to help him. At times it has been really hard on my mom and I when we had to fuss at him to drink and move around more but, when they told us how well he is doing and makes everything.
Best of luck and please keep in touch.
Hi Susan,
I am sorry to hear about your brother, but he can beat this. I was stage 4 scc Right tonsil. I am 2 months past treatment and doing good. Yes there are some rough times ahead, but he can do this. My prayers are with you both as you go into battle this monster.
Remember to keep posting here and people will help you. They are all great.
Best,
Steve0 -
Thank you Steve! I amstevenl said:SCC
Hi Susan,
I am sorry to hear about your brother, but he can beat this. I was stage 4 scc Right tonsil. I am 2 months past treatment and doing good. Yes there are some rough times ahead, but he can do this. My prayers are with you both as you go into battle this monster.
Remember to keep posting here and people will help you. They are all great.
Best,
Steve
Thank you Steve! I am thrilled to hear you are doing well. I know this will be an uphill battle but with all of you behind Paul and me, I am confident we will beat this wretched disease!
Kind regards,
Susan0 -
JacksonvillePaulssister said:Thank you Steve! I am
Thank you Steve! I am thrilled to hear you are doing well. I know this will be an uphill battle but with all of you behind Paul and me, I am confident we will beat this wretched disease!
Kind regards,
Susan
Susan........on down the road, Paul is gonna need a few months of excercise physiology to get his stamina and balance back in shape. My only daughter and her husband are both Doctors of Physical Therapy at Brook's Rehabilitation there in Jacksonville, so I'm sure they could get him into the best of schedules to get back on track. It could be 5 to 6 months from now, but post up when he's ready. I'm one year finished from treatment for stage 4 left tonsular cancer, and am doing quite well with the best physical shape I've been in since my early 30's. Like John, my tumor has been gone since the mid-point of my treatment, and my physicians can't believe how well I've recovered. They evidently laid the chemo (6 sessions) and rads (36 straight days) on me. My beautiful ENT gave me a stick this past Monday. She said to use it to fight off the women...LOL !
Larry0 -
SusanPaulssister said:Thank you Steve! I am
Thank you Steve! I am thrilled to hear you are doing well. I know this will be an uphill battle but with all of you behind Paul and me, I am confident we will beat this wretched disease!
Kind regards,
Susan
I am sorry that your brother has to go through this. However, he is very lucky to have you by his side. I just wanted to let you know that I had stage 4 b cancer of the left toncil & am three month's post treatment. Thing's are much better for me & I just had my checkup last week & my Oncologist could not see anything left of the tumor. I have a CT scan scheduled for
mid July. I am concentrating on living my life to the fullest. That is the best I can do. Cannot change what is in the card's for me but for now I don't think about what I can do nohing about. I am fairly new to this forum also, but I have gained so much from all of the
the wonderfull people sharing their experience's & it has been most helpfull to me. I wish both you & your brother the best & will keep you both in my prayer's!
Roz0 -
Well, Larry...you handsomeCajunEagle said:Jacksonville
Susan........on down the road, Paul is gonna need a few months of excercise physiology to get his stamina and balance back in shape. My only daughter and her husband are both Doctors of Physical Therapy at Brook's Rehabilitation there in Jacksonville, so I'm sure they could get him into the best of schedules to get back on track. It could be 5 to 6 months from now, but post up when he's ready. I'm one year finished from treatment for stage 4 left tonsular cancer, and am doing quite well with the best physical shape I've been in since my early 30's. Like John, my tumor has been gone since the mid-point of my treatment, and my physicians can't believe how well I've recovered. They evidently laid the chemo (6 sessions) and rads (36 straight days) on me. My beautiful ENT gave me a stick this past Monday. She said to use it to fight off the women...LOL !
Larry
Well, Larry...you handsome devil
I am also totally impressed with your recovery. Life certainly threw you a curve but it sounds as if the old saying, "You can't keep a good man down" applys here.
Actually, Paul live in Missouri but now that I know he should have a therapy program ready when he is, I will look for one in that State.
Thank you...I really appreciate all the help and support I have received from folks like you...this web site has been a God send!
God bless.
Susan0 -
Roz...rozaroo said:Susan
I am sorry that your brother has to go through this. However, he is very lucky to have you by his side. I just wanted to let you know that I had stage 4 b cancer of the left toncil & am three month's post treatment. Thing's are much better for me & I just had my checkup last week & my Oncologist could not see anything left of the tumor. I have a CT scan scheduled for
mid July. I am concentrating on living my life to the fullest. That is the best I can do. Cannot change what is in the card's for me but for now I don't think about what I can do nohing about. I am fairly new to this forum also, but I have gained so much from all of the
the wonderfull people sharing their experience's & it has been most helpfull to me. I wish both you & your brother the best & will keep you both in my prayer's!
Roz
Thank you for your
Roz...
Thank you for your kind words and prayers. Both are appreciated. I am so humbled by what you and others on this web site have been through and have survived. It proves to me that man is not only a fighter who can beat this ugly beast but also a kind person with a heart of gold.
I wish you the best and also hope you keep in touch.
God bless you.
Kind regards,
Susan0 -
Hard words to hearrozaroo said:Susan
I am sorry that your brother has to go through this. However, he is very lucky to have you by his side. I just wanted to let you know that I had stage 4 b cancer of the left toncil & am three month's post treatment. Thing's are much better for me & I just had my checkup last week & my Oncologist could not see anything left of the tumor. I have a CT scan scheduled for
mid July. I am concentrating on living my life to the fullest. That is the best I can do. Cannot change what is in the card's for me but for now I don't think about what I can do nohing about. I am fairly new to this forum also, but I have gained so much from all of the
the wonderfull people sharing their experience's & it has been most helpfull to me. I wish both you & your brother the best & will keep you both in my prayer's!
Roz
Susan, Some of the hardest words I have ever heard were "it's cancer". The blood ran out of my head, I was as white as a sheet, and had to put my head down for 10 minutes so I would not have to be picked up off the floor when the pathologist shared with me and my partner that he had cancer. Hearing the news of your brothers cancer I am sure is frightening. We all have our preconcieved ideas of what cancer is. You have just tapped into the most valuable resource there is for surviving the psychological effects of cancer. As you have read from all who have responded so far, there are people here who have had what your brother has. They know every detail of the fight to survive this cancer. What you will also learn is it is survivable. My partner was diagnosed in April and the first ENT threw out all of these bleak statistics about survival that were very general in nature and not specific to Mark, or the nuances of his cancer. We were alarmed until we met with a doctor who treats Head and Neck cancer ALL the time. Those percentages shot up to the 85-90% range.
Mark just started the chemo/radiation part of treatment after super surgery phase and his started in his tonsil. We all travel this road and learn a lot; as a result we can offer information and support. Those here who have had base of the tongue primary and/or have gone from A to T (I don't say Z because you will learn this is something that is always a part of life and there is no Z) with treatment will give you the most information relevent to your brother's journey. Stay with us, regardless which state you are in (geographically or menatlly). There is always someone here.
I am impressed with the relationship that exists between you and your brother that you would pick up your life in Florida and go to him as he faces this phase of his life. To not be alone is HUGE, for all of us.
My best to both you and Paul,
Kim0
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