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cancer in the sacrum and bones, started with colon cancer 7 years prior

shackie
shackie Member Posts: 20
edited March 2014 in Colorectal Cancer #1
im doing research for my brother who doesnt have a computer, 7 years ago he had most of his colon removed and has to wear a bag. no follow ups were done.(imean with chemo or radiation of course he had check ups) they said they felt they got it all, 7yrs later he was having severe pain in his tailbone area, turned out it was in his sacrum thats sumwhere very close to the spine and in his bones and they said they cant get it all. and it is stage 4, i think that means terminal, not sure. they are setting him up for more test to find out all where its at. they found this out when he couldnt pee anymore now he has to where a pee bag also, im thinking this is really bad from what i read, but not understanding y docs arnt telling him its terminal, i havent said that to him, but just from what i read, its bad. any honest opinions wud b appreciated, we r seein the dr weds, im going to b more agressive about questions, we r just country folk and not to smart on these things and kinda just trust what the dr says. his blood presure is like 179 over 118 he has blured vision, cant eat no appitite or he throws up and hes not taking any treatments or meds other than for pain. hes hoping he can just get the pain down so he can enjoy some life. but it sounds like it has spread all over, he said he hurts every where, and also, sum1 suggested a pill thc to help him eat. any honest opinions welcome, or if u hav a similar story or outcome of a loved one, any advice on natural help something he can do to get outa pain some or something to help him eat, he is about 5 9 124lbs he has no reserve to fight this at all at this point. thanks, i kno this was a long one. just trying to figure out what to xpect, thanks for ur time
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Comments

  • AceSFO
    AceSFO Member Posts: 229
    Sacral mets
    Hi, Shackie,
    My partner (johnsfo) has mets to the sacrum also. Ask your doctors on Wednesday about "Cyber Knife" treatments. It's a fairly new technology that's non-invasive and has no side effects and is also painless. Kind of unusual for a cancer treatment. John's tumor is fairly large, covering three sections of the sacrum and the team who did his cyber knife treatment a few weeks ago told us they had successfully treated much larger tumors than his and gave him an 80% chance of successful treatment (success being measured in terms of killing the tumor, no new tumors on that site ever, and reducing the pain to a manageable level).

    Depending on the size of the tumor a sacrectomy might also be an option. The sections of the sacrum are numbered S1 - S5 starting at the top and working down toward the tailbone. They can remove all the way up to, but not into S2. John's tumor goes from S2 to S4, so that wasn't an option for us, but we heard good things about that surgery as well.

    It's good your brother has you to do the research for him and be his support. The people on this board are wonderful and will be a great support for both of you. When John and I go to one of his appointments, we always make a list of questions ahead of time. He asks the questions and I take the notes. We also get business cards from each of the doctors and store those in the notebook as well.

    Also don't be afraid to get a second opinion.
    I hope this helps - let us know if we can be helpful in any way.

    Adrian
  • Shayenne
    Shayenne Member Posts: 2,342
    AceSFO said:

    Sacral mets
    Hi, Shackie,
    My partner (johnsfo) has mets to the sacrum also. Ask your doctors on Wednesday about "Cyber Knife" treatments. It's a fairly new technology that's non-invasive and has no side effects and is also painless. Kind of unusual for a cancer treatment. John's tumor is fairly large, covering three sections of the sacrum and the team who did his cyber knife treatment a few weeks ago told us they had successfully treated much larger tumors than his and gave him an 80% chance of successful treatment (success being measured in terms of killing the tumor, no new tumors on that site ever, and reducing the pain to a manageable level).

    Depending on the size of the tumor a sacrectomy might also be an option. The sections of the sacrum are numbered S1 - S5 starting at the top and working down toward the tailbone. They can remove all the way up to, but not into S2. John's tumor goes from S2 to S4, so that wasn't an option for us, but we heard good things about that surgery as well.

    It's good your brother has you to do the research for him and be his support. The people on this board are wonderful and will be a great support for both of you. When John and I go to one of his appointments, we always make a list of questions ahead of time. He asks the questions and I take the notes. We also get business cards from each of the doctors and store those in the notebook as well.

    Also don't be afraid to get a second opinion.
    I hope this helps - let us know if we can be helpful in any way.

    Adrian

    Shackie....
    ...WOW! I must say, your brother is a 7 year cancer survivor, that's honestly great! I am a Stage 4 CC with mets to my liver as well, and I don't know about being terminal, but alot of us Stage 4's are out there living with the cancer, not dying from it as well, we can just try and stay ahead of this awful disease, we're all terminal when you really think about it, no one gets out of here alive, it's the time on this earth and what we do while we're here that matters.

    Your brother needs treatment, once I started chemo, I was feeling alot better, no pain or discomfort, the medicines they have out now are very advanced, and not like how it was years ago, with that being said, he needs to get to a reputable major hospital, and they can see what they do for him. You can always get second and third opinions if you don't like what the first doctor has said, but there are treatments for everything, and there are people who are Stage 4 who have been living with this disease for years, and some even become NED (No Evidence of Disease) so the doctor isn't going to tell you how long, if he is unsure himself, no one but God knows how long you have here.

    I hope he rushes to get the treatment that he needs, it's best to get to a Comprehensive Cancer Center, that specializes in HIS cancer, you never know these days what they can do for illnesses, just keep the faith and hope, and let him get to someone who can help him.

    Hugsss!
    ~Donna
  • shackie
    shackie Member Posts: 20
    AceSFO said:

    Sacral mets
    Hi, Shackie,
    My partner (johnsfo) has mets to the sacrum also. Ask your doctors on Wednesday about "Cyber Knife" treatments. It's a fairly new technology that's non-invasive and has no side effects and is also painless. Kind of unusual for a cancer treatment. John's tumor is fairly large, covering three sections of the sacrum and the team who did his cyber knife treatment a few weeks ago told us they had successfully treated much larger tumors than his and gave him an 80% chance of successful treatment (success being measured in terms of killing the tumor, no new tumors on that site ever, and reducing the pain to a manageable level).

    Depending on the size of the tumor a sacrectomy might also be an option. The sections of the sacrum are numbered S1 - S5 starting at the top and working down toward the tailbone. They can remove all the way up to, but not into S2. John's tumor goes from S2 to S4, so that wasn't an option for us, but we heard good things about that surgery as well.

    It's good your brother has you to do the research for him and be his support. The people on this board are wonderful and will be a great support for both of you. When John and I go to one of his appointments, we always make a list of questions ahead of time. He asks the questions and I take the notes. We also get business cards from each of the doctors and store those in the notebook as well.

    Also don't be afraid to get a second opinion.
    I hope this helps - let us know if we can be helpful in any way.

    Adrian

    thanks for the hope
    he said if he cud just get out of some of the pain, he cud deal with whats to come, but when they said they cudnt get it all without paralyizing him. was scary, i will ask about the cyber knife treatment and what sections its on. and thanks for the tip on keeping notes and cards. hopefully he can get some of that cut out to relieve some pain, do you kno if this disease wud affect his appitite and vision. his treatments will start this week, we thought he only had like a few months, i didnt kno ppl lived years with stage 4. we shud find out friday if its spread in other places, will keep every1 posted, so sorry for every1 going thru this awful disease, you hear about it and see things on tv. when it hits home, just makes it so real. my prayers are with you all. thanks for your help
  • shackie
    shackie Member Posts: 20
    Shayenne said:

    Shackie....
    ...WOW! I must say, your brother is a 7 year cancer survivor, that's honestly great! I am a Stage 4 CC with mets to my liver as well, and I don't know about being terminal, but alot of us Stage 4's are out there living with the cancer, not dying from it as well, we can just try and stay ahead of this awful disease, we're all terminal when you really think about it, no one gets out of here alive, it's the time on this earth and what we do while we're here that matters.

    Your brother needs treatment, once I started chemo, I was feeling alot better, no pain or discomfort, the medicines they have out now are very advanced, and not like how it was years ago, with that being said, he needs to get to a reputable major hospital, and they can see what they do for him. You can always get second and third opinions if you don't like what the first doctor has said, but there are treatments for everything, and there are people who are Stage 4 who have been living with this disease for years, and some even become NED (No Evidence of Disease) so the doctor isn't going to tell you how long, if he is unsure himself, no one but God knows how long you have here.

    I hope he rushes to get the treatment that he needs, it's best to get to a Comprehensive Cancer Center, that specializes in HIS cancer, you never know these days what they can do for illnesses, just keep the faith and hope, and let him get to someone who can help him.

    Hugsss!
    ~Donna

    thanks
    il be sure and pass on to him about the treatments not being so awful, and r u saying the pain of the actual tumor was better after a few treatments. and will also pass along your positive attitude and take the good with the bad, will keep leaving updates, thanks for your help. prayers are with you. tina
  • AceSFO
    AceSFO Member Posts: 229
    shackie said:

    thanks for the hope
    he said if he cud just get out of some of the pain, he cud deal with whats to come, but when they said they cudnt get it all without paralyizing him. was scary, i will ask about the cyber knife treatment and what sections its on. and thanks for the tip on keeping notes and cards. hopefully he can get some of that cut out to relieve some pain, do you kno if this disease wud affect his appitite and vision. his treatments will start this week, we thought he only had like a few months, i didnt kno ppl lived years with stage 4. we shud find out friday if its spread in other places, will keep every1 posted, so sorry for every1 going thru this awful disease, you hear about it and see things on tv. when it hits home, just makes it so real. my prayers are with you all. thanks for your help

    Hi, Tina,
    Be sure to ask

    Hi, Tina,

    Be sure to ask about the size and location of the tumor. If they don't do cyber knife or sacral resections where you are, find someplace that does and see about getting him in there for another opinion. You mentioned that you're in the country, so if there's nothing nearby, I know that there are pilots who will fly people for free to get treatments in other parts of the country. I'll see if I can find the info about it and post it here.

    For us, we stay positive by living well. It really helps and there's always hope. Your brother is one lucky man to have you on his side in this -

    take care of yourself too -

    Adrian
  • Fb489
    Fb489 Member Posts: 69
    So Sorry
    I know how painful cancer that spread to the bone is.
    my husband just went through hip replacemcnt, because his colon cancer
    spread to the hip, very very painful, I know what your are going through.
    It is so difficult to watch a love one in so much pain.
    On the bright side he has survived 7 years, that would seem like a lifetime
    for some some of us.
    Take care of yourself and seek more than one doctor advice.
  • Shayenne
    Shayenne Member Posts: 2,342
    AceSFO said:

    Hi, Tina,
    Be sure to ask

    Hi, Tina,

    Be sure to ask about the size and location of the tumor. If they don't do cyber knife or sacral resections where you are, find someplace that does and see about getting him in there for another opinion. You mentioned that you're in the country, so if there's nothing nearby, I know that there are pilots who will fly people for free to get treatments in other parts of the country. I'll see if I can find the info about it and post it here.

    For us, we stay positive by living well. It really helps and there's always hope. Your brother is one lucky man to have you on his side in this -

    take care of yourself too -

    Adrian

    Hi Tina....
    ...There is always hope, there is a woman here who has it for 11 years! Cass is awesome, and I'm sure a few Stage 4's will come up and pop in to say Hi and throw some support at you, some who are 5, 6 and 8 year survivors!

    Yes, the chemo does help with the pain once it starts attacking the tumors, chemo isn't what it used to be. I have had a port installed, so it doesn't even go directly into my hand or arm, it goes through the port right through the bloodstream, and though it can make one queasy, they have really good anti-nausea meds, Emend and Dexamethasone have worked very well for me, there is also Zofran, Compazine and Ativan that I take as well, once unhooked from the chemo, he may feel wiped out for a few days, but he will bounce back, your energy will come back. A good diet and exercise will help out as well.

    If he's having trouble eating, there are pills out there that is supposed to help, some appetite stimulators, make sure he tries to get down some Ensure, that helped me gain some weight back, chocolate was the best! I know they don't taste the best, but they are high in protein, and he needs to eat to keep up his strength. Even saltines help with the nausea. His vision will be fuzzy, mine sure is, my vision isn't what it used to be, but I can see better at a certain range then others, so that's all involved with the chemo, but he must eat. Maybe some soups, and casseroles, not too much junk, though on chemo I do crave ice cream alot, which I been trying to curb! (good ole maryjane helps me as well :)

    Tell him not to give up hope and keep fighting, Stage 4 isn't the death sentence it used to be, too many people living with it, and to eat alot of veggies! and drink LOADS of water. Staying hydrated is very important! I have a temporary colostomy, and have been in and out of the hospital quite a few times because of blockages, and I Know it's also what I eat, and I have a hard time getting down alot of water in a day, I"m not much of a drinker, but have been lately been forcing myself to drink at least 3 bottles a day, and so far so good, I been feeling really good, and watching how and what I eat, my doctor told me with a colostomy, small portions are best, not too overwork my system, which I was doing, I go on binges sometimes and just pig out, and have to stop that, so I'm getting better at it as well, and slowing down, chewing more, and just eating loads of veggies. I will start juicing when I can get my juicer.

    Don't read the stats on the internet, they are out of date, and not true, and will only scare you, you can get plenty of good information here, with all these posts and wonderful people, we love each other, and welcome you to our family, and hope we can be of help to you and your brother!

    Hugsss!
    ~Donna
  • AceSFO
    AceSFO Member Posts: 229
    For flights around the
    For flights around the country:
    Air Charity Network 877-621-7177 www.airlifeline.org
    Angel Flight Mid-Atlantic 800-296-3797 www.angelflightmidatlantic.org
    Corporate Angel Network 866-328-1313 www.corpangelnetwork.org
    National Patient Travel Center 800-296-1217 www.patienttravel.org

    Also check out www.medscape.com

    I've been reading a really great book designed for both caregivers and patients. I'd recommend it highly - The Power of Two by Gerri and Brian Monaghan. It gives all sorts of useful information as well as a game plan you can use to handle everything that's coming your way. You can find it on Amazon for about $15.

    Also there are two other wonderful people on here with bone mets, and I'm sure you're be hearing from them - Robinvan (Rob) and Butterfly23 (Karyn)

    more soon,
    Adrian
  • Shayenne
    Shayenne Member Posts: 2,342
    AceSFO said:

    For flights around the
    For flights around the country:
    Air Charity Network 877-621-7177 www.airlifeline.org
    Angel Flight Mid-Atlantic 800-296-3797 www.angelflightmidatlantic.org
    Corporate Angel Network 866-328-1313 www.corpangelnetwork.org
    National Patient Travel Center 800-296-1217 www.patienttravel.org

    Also check out www.medscape.com

    I've been reading a really great book designed for both caregivers and patients. I'd recommend it highly - The Power of Two by Gerri and Brian Monaghan. It gives all sorts of useful information as well as a game plan you can use to handle everything that's coming your way. You can find it on Amazon for about $15.

    Also there are two other wonderful people on here with bone mets, and I'm sure you're be hearing from them - Robinvan (Rob) and Butterfly23 (Karyn)

    more soon,
    Adrian

    That's some....
    ...Great info Adrian, I don't have bone mets, so I don't know how the pain is done, I can only speak from what I have Tina, but I Hope your brother does find something to help him with that, it may take time figuring out what's right for him, but I hope soon he will be feeling good again!

    Hugsss!
    ~Donna
  • shackie
    shackie Member Posts: 20
    AceSFO said:

    Hi, Tina,
    Be sure to ask

    Hi, Tina,

    Be sure to ask about the size and location of the tumor. If they don't do cyber knife or sacral resections where you are, find someplace that does and see about getting him in there for another opinion. You mentioned that you're in the country, so if there's nothing nearby, I know that there are pilots who will fly people for free to get treatments in other parts of the country. I'll see if I can find the info about it and post it here.

    For us, we stay positive by living well. It really helps and there's always hope. Your brother is one lucky man to have you on his side in this -

    take care of yourself too -

    Adrian

    i will ask the size and xact
    i will ask the size and xact location, we do have lots of doctors in this area, when i said country, i kinda just meant redneck countryfide folk if thats a word. lol we live in southern illinois. were just not smart about all this medical stuff. i dont kno what met means. i seen that mentioned a few times, b4 this i never knew we had a sacrum. and like i said the first cancer he didnt have any chemo or radiation, so this is all new to us. already gettin alot of positive hope to pass on to him, he is so down. i wish he could do computer, this would help him so much, seems like you all get strength from each other, that is great. i would sure welcome any of you to my facebook also. thanks so much , you all have no idea how much this has helped, thanks
  • robinvan
    robinvan Member Posts: 1,012
    Spread to Sacrum... Me too :-(
    Hi Tina,

    So sorry to hear about your brother's recurrence after 7 years!! We begin to hope it is gone forever by then! It sounds like he is suffering a lot with it right now which must be very hard for you. I hope we can all help you to help him.

    As mentioned by Adrian, I was recently diagnosed with a similar recurrence after 5 years. (I've been stage 4 all of that time) It started near the site of my original cancer and spread back to the sacrum, the bones at the back of the pelvis, base of the spine. Like you brother I have both pain and loss of feeling. I also had a "catheter" installed so am also peeing into a bag!!

    Right now I am having radiation to help reduce the pain and kill as much of the cancer as possible. It will probably not get rid of it all but may bring some relief and some time to look at other options. I have had 12 doses of radiation of a planned 15. Side-effects so far are managable. Radiation is a scary thought but it has been OK for me so far. I am also on a very good mix of pain medication which is keeping me comfortable.

    I am exploring some of the options that Adrian mentioned above to see if there is anything that can help be live longer and better with this new twist.

    I hope your oncologist is able to do something to help reduce the pain. Radiation may be a hopeful approach. I am beginning to have feeling in my bladder again so may be able to have this catheter removed next week. It is hard to think straight about other options while you are in so much pain.

    Do be assertive with your questions. You will be well prepared from talking to us. Don't be afraid to ask for explanations. When it comes to cancer, Tina, "we are all country folk". All of the words are new and many are hard to understand. There is a lot of "Jargon" and it can be very confusing. You and your brother should expect the doctors and nurses to help you to understand what is going on. If a word stumps you... ask them to define it. Once you do this a few times they will get the hang of it. They don't actually WANT to confuse you, they just speak a different language!! Ask your questions and don't apologize for not knowing this stuff. (Here is a link to a helpful online cancer dictionary http://www.cancer.gov/dictionary/ You'll find most words there.)

    Good luck on Wednesday! I'll be thinking of you. Let us know how it goes.

    Rob; in Vancouver
  • butterfly23
    butterfly23 Member Posts: 256
    Hi
    I also have 4 stage colon can. with mets to the spinal cord. Yes, it is very painful, but there are plenty of pain med. available to keep your brother comfortable, and once they decide what treatment they will do, I'm sure he will feel better. I did 10 rounds of radiation and now I just started chemo again. I wish you and your family well. Remember, we are all here for you! Don't hesitate to ask questions!
    Hugs!
    Karyn
  • shackie
    shackie Member Posts: 20

    Hi
    I also have 4 stage colon can. with mets to the spinal cord. Yes, it is very painful, but there are plenty of pain med. available to keep your brother comfortable, and once they decide what treatment they will do, I'm sure he will feel better. I did 10 rounds of radiation and now I just started chemo again. I wish you and your family well. Remember, we are all here for you! Don't hesitate to ask questions!
    Hugs!
    Karyn

    brothers cancer
    he had to go to hospital yesterday with severe pain, cud only treat him for the pain, hes was in really bad shape when they found it again, hes one of those ppl who dont go to doctor till last minit. hes lost 7 pounds in a week to stressed to eat, i think hes givin up, i think they r prolly gona get hospice in today, i prolly shudnt post this info, sound like u r all doing good. i kno u gotta have the fight the will and some back up weight, he has been thru to many other surgeries. i think he just cant go anymore, not sure whether to post anymore info, i hope the best for all of you and thanks for you help, youve all been so kind. and god bless this site. and will b checking in to see how your all doin. you can find me on face book tina skiles st louis mo. thats not where i live, but close enuf. thanks so much
  • robinvan
    robinvan Member Posts: 1,012
    shackie said:

    brothers cancer
    he had to go to hospital yesterday with severe pain, cud only treat him for the pain, hes was in really bad shape when they found it again, hes one of those ppl who dont go to doctor till last minit. hes lost 7 pounds in a week to stressed to eat, i think hes givin up, i think they r prolly gona get hospice in today, i prolly shudnt post this info, sound like u r all doing good. i kno u gotta have the fight the will and some back up weight, he has been thru to many other surgeries. i think he just cant go anymore, not sure whether to post anymore info, i hope the best for all of you and thanks for you help, youve all been so kind. and god bless this site. and will b checking in to see how your all doin. you can find me on face book tina skiles st louis mo. thats not where i live, but close enuf. thanks so much

    So Sorry
    Tina, What a horrible time for you and your brother. I hope he is able to find pain relief now that he is in the hospital.

    Wishing you all the strength and grace you need to cope through this difficult time.

    Rob; in Vancouver
  • AceSFO
    AceSFO Member Posts: 229
    shackie said:

    brothers cancer
    he had to go to hospital yesterday with severe pain, cud only treat him for the pain, hes was in really bad shape when they found it again, hes one of those ppl who dont go to doctor till last minit. hes lost 7 pounds in a week to stressed to eat, i think hes givin up, i think they r prolly gona get hospice in today, i prolly shudnt post this info, sound like u r all doing good. i kno u gotta have the fight the will and some back up weight, he has been thru to many other surgeries. i think he just cant go anymore, not sure whether to post anymore info, i hope the best for all of you and thanks for you help, youve all been so kind. and god bless this site. and will b checking in to see how your all doin. you can find me on face book tina skiles st louis mo. thats not where i live, but close enuf. thanks so much

    Wednesday
    Hi, Tina,

    I think you said you guys were meeting with the oncologists today. I'll be eager to hear how it goes when you feel up to it. Meanwhile I'll be sending good thoughts your way and hoping for the best possible outcome.

    Hang in there and take care!
    Adrian
  • Shayenne
    Shayenne Member Posts: 2,342
    AceSFO said:

    Wednesday
    Hi, Tina,

    I think you said you guys were meeting with the oncologists today. I'll be eager to hear how it goes when you feel up to it. Meanwhile I'll be sending good thoughts your way and hoping for the best possible outcome.

    Hang in there and take care!
    Adrian

    Maybe...
    ....they will find something else instead of heading off to hospice so fast, he needs the will to live, but I can understand those thoughts of wanting to just give and be done with it as well, this disease really sucks, and takes alot out of you. I am Donna Gorslene on Facebook, you can always add, and talk if you want, I'm here for anyone. I hope this isn't it, and I suggest you keep on posting, even if the worse comes out, we are here for you as well, anytime, for support. Caregivers are a big part of our family as well.

    Hugsss!
    ~Donna
  • shackie
    shackie Member Posts: 20
    Shayenne said:

    Maybe...
    ....they will find something else instead of heading off to hospice so fast, he needs the will to live, but I can understand those thoughts of wanting to just give and be done with it as well, this disease really sucks, and takes alot out of you. I am Donna Gorslene on Facebook, you can always add, and talk if you want, I'm here for anyone. I hope this isn't it, and I suggest you keep on posting, even if the worse comes out, we are here for you as well, anytime, for support. Caregivers are a big part of our family as well.

    Hugsss!
    ~Donna

    thanks every1
    just dont wanna b a downer for every1 else. we hav had so many differnt predictions, not sure what is what but will go with the best one, the cancer dr said lets give radiation a try, and they gave him fentonol patches and norco and some kinda steroid for his appitite i guess, and it did perk him up, some1 said that was a false perkup due to the steroid. cuz he was barely able to move or eat or even talk, now he appears better, he has had 2 radiation treatment, they say his body is to weakl to take chemo or surgery right now. and if they do surgery or chemo it is in the bone and cannot get it all. we dont kno what that means, if they cant get it all, is the fight over. or will he just treat with raidiation till they cant do anymore. it appears, they just really dotn kno, everyone is difernt, the scans showed it wasnt anywhere else, only a place on his arm was suspicious. and for the rest of u, dont let what i say get u down, my brother is one of those ppl who wont go to the doctor, till he cant stand it no more, which is when he cudnt pee on his own. also learned there is a marijuana pill. but doc said he hasnt had much luck with that. good luck all and have a good day.
  • AceSFO
    AceSFO Member Posts: 229
    shackie said:

    thanks every1
    just dont wanna b a downer for every1 else. we hav had so many differnt predictions, not sure what is what but will go with the best one, the cancer dr said lets give radiation a try, and they gave him fentonol patches and norco and some kinda steroid for his appitite i guess, and it did perk him up, some1 said that was a false perkup due to the steroid. cuz he was barely able to move or eat or even talk, now he appears better, he has had 2 radiation treatment, they say his body is to weakl to take chemo or surgery right now. and if they do surgery or chemo it is in the bone and cannot get it all. we dont kno what that means, if they cant get it all, is the fight over. or will he just treat with raidiation till they cant do anymore. it appears, they just really dotn kno, everyone is difernt, the scans showed it wasnt anywhere else, only a place on his arm was suspicious. and for the rest of u, dont let what i say get u down, my brother is one of those ppl who wont go to the doctor, till he cant stand it no more, which is when he cudnt pee on his own. also learned there is a marijuana pill. but doc said he hasnt had much luck with that. good luck all and have a good day.

    Hang in there
    Hi, Tina,

    Don't ever worry about being a downer - we're all in this together and we share the good days and the bad days. Fentanyl made a huge difference for my partner (johnsfo) and I hope it works for your brother too. Ask them about cyber knife, if it's available there and if he might be a candidate for it. Maximum radiation without affecting the surrounding tissue.
    Hang in there and take care of yourself too.

    Adrian
  • shackie
    shackie Member Posts: 20
    AceSFO said:

    Hang in there
    Hi, Tina,

    Don't ever worry about being a downer - we're all in this together and we share the good days and the bad days. Fentanyl made a huge difference for my partner (johnsfo) and I hope it works for your brother too. Ask them about cyber knife, if it's available there and if he might be a candidate for it. Maximum radiation without affecting the surrounding tissue.
    Hang in there and take care of yourself too.

    Adrian

    my brothers cancer update.
    thank u all. you r so kind. and so sorry to hear so many ppl have this awful cancer. my brother is on about his 15th radiation. he was able to get the catheder out last weds. but going back to uroligist today becuz he is having some problems, he went last week to get the bag attatched to the side, but when the took out the catherder, he was able to pee. i guess the cancer had shrunk enuf that he cud. he was so happy to get rid of the cathider and no surgery to put it on his side, but this week he had problems, like feeling the urge and cudnt but going enuf to avoid catheder. guess we will see today what happens. i think mayb hes having some problems readjusting to not having the catheder and mayb its not serious, but b4 the tumor was blocking it where he cudnt pee to begin with. doctor is thinking of starting chemo nxt week. he is still so weak. had gained 2 pounds, but i think he lost it again, he is so fragile, i dont kno how chemos gona go, doctor is concerned to, but what else is left, i must say he has a positive dr. my brother is about 5 ft 7 and 125 not good. he is still in severe pain even with fentanol patches percocet in between and couple others dotn tkno the name of. sorry i dont kno all the proper words to this horrible disease. will keep u updated, he still has fight in him. hes just one of those pple who dont go to dr till he has to, and in this case its very sad, and may cost his life. good luck to all of you, and thanks for your support. tina
  • johnsfo
    johnsfo Member Posts: 47
    shackie said:

    my brothers cancer update.
    thank u all. you r so kind. and so sorry to hear so many ppl have this awful cancer. my brother is on about his 15th radiation. he was able to get the catheder out last weds. but going back to uroligist today becuz he is having some problems, he went last week to get the bag attatched to the side, but when the took out the catherder, he was able to pee. i guess the cancer had shrunk enuf that he cud. he was so happy to get rid of the cathider and no surgery to put it on his side, but this week he had problems, like feeling the urge and cudnt but going enuf to avoid catheder. guess we will see today what happens. i think mayb hes having some problems readjusting to not having the catheder and mayb its not serious, but b4 the tumor was blocking it where he cudnt pee to begin with. doctor is thinking of starting chemo nxt week. he is still so weak. had gained 2 pounds, but i think he lost it again, he is so fragile, i dont kno how chemos gona go, doctor is concerned to, but what else is left, i must say he has a positive dr. my brother is about 5 ft 7 and 125 not good. he is still in severe pain even with fentanol patches percocet in between and couple others dotn tkno the name of. sorry i dont kno all the proper words to this horrible disease. will keep u updated, he still has fight in him. hes just one of those pple who dont go to dr till he has to, and in this case its very sad, and may cost his life. good luck to all of you, and thanks for your support. tina

    managing pain
    Dear Tina,

    I joined the board just after you started this thread, so I am just now seeing it and responding (although Adrian (acesfo), my partner, has responded). I also have met to the sacrum, and I have found the pain to be among the most difficult aspects to deal with. I resisted taking enough pain meds for a long time because I thought they would cloud my thinking. Fentanyl, for me, relieves the pain without making me feel sedated or "fuzzy headed." It sounds like your brother has the right drugs but not the right dose. Has he asked whether he can increase the dosage? It's hard to do anything or to think clearly when you have pain like that.

    Have you and he investigated cyberknife treatment? That's highly focused high-dose radiation. It has helped me with pain and my CEA reduced dramatically after treatment. Let me know if you'd like for information about cyberknife.

    Best wishes to you and your brother.

    John