Severe back pain..can you please read in case you can help.

nycchic24
nycchic24 Member Posts: 4
in Colorectal Cancer #1
I have a friend who was diagnosed with colon cancer in about May of last year (2010). He was stage 4 when diagnosed. Had 6 months of chemo. Apparently the tumor has shrunk but not enough. Please forgive me for broken details. I dont fully understand it all. They are now waiting another month to give him another set of scans and see what is happening and where to go from there.

Originally, his back pain is what sent him to the hospital. He had severe pain in the center of his back that would radiate to lower and upper. He couldnt eat at all. Lost a significant amount of weight. Apparently the tumor was pressing on a nerve. While he was on chemo, he had NO back pain whatsoever. Since finishing the chemo though, the pain is back worse than ever. He has to take percocets every day just to survive. They keep telling him they have no idea what is causing the pain. I suggested an inflamed gallbladder because I had gallbladder issues and what he describes is that exact pain. Besides the percs, the only thing that helps is warm showers/baths.

I feel like precious time is being wasted. What is with this long wait in between? Is this generally what they do? My big question is, what can this back pain possibly be? Has anyone else experienced this at all? He says they told him the cancer hasn't spread. They told him his gallbladder is fine. He needs to ask the right questions. He is scared and basically just tells them to fix the pain and keep him alive. Although I know this isnt the right attitude, he is 37 and petrified. I live in a different country or else I would go with him to every doctors appointment under the sun.

Please..if you have ANY feedback to offer AT ALL, please, please write back. I am literally begging. Thank you so much and God Bless you all.

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Hi
    First of all, what a good friend you are looking for help for your friend.

    You mention you are in different countries...what country is he in? That may make a difference in what and how treatments are applied.

    You mention he was diagnosed as stage 4, that generally means that the primary problem was in the colon and has metasticized in other locations (most commonly called mets). Do you know what other locations are involved? I am also wondering how they can be sure the cancer has not spread without having had the CT scan results. Perhaps they are basing that on several he has had since diagnosis.

    The timing of scans varies. In some cases delays are because of availability of the equipment. Do you know if they have been watching a blood test called CEA? In some folks, not all, the CEA can be a reliable indicator on response of the cancer to treatments.

    See how much detail you can get from him and let us know and we will gladly try to help you understand based on our experiences. There are many here who have been diagnosed as stage 4 and are living fairly well with treatments.

    Hugs to you both,

    Marie who loves kitties
  • nycchic24
    nycchic24 Member Posts: 4
    #3
    Lovekitties said:

    Hi
    First of all, what a good friend you are looking for help for your friend.

    You mention you are in different countries...what country is he in? That may make a difference in what and how treatments are applied.

    You mention he was diagnosed as stage 4, that generally means that the primary problem was in the colon and has metasticized in other locations (most commonly called mets). Do you know what other locations are involved? I am also wondering how they can be sure the cancer has not spread without having had the CT scan results. Perhaps they are basing that on several he has had since diagnosis.

    The timing of scans varies. In some cases delays are because of availability of the equipment. Do you know if they have been watching a blood test called CEA? In some folks, not all, the CEA can be a reliable indicator on response of the cancer to treatments.

    See how much detail you can get from him and let us know and we will gladly try to help you understand based on our experiences. There are many here who have been diagnosed as stage 4 and are living fairly well with treatments.

    Hugs to you both,

    Marie who loves kitties

    Hi Marie,
    Thank you for the
    Hi Marie,

    Thank you for the warm welcome and all the information so far. He says he was diagnosed as stage 4 but it hadn't spread anywhere else. Does that sound like it can be correct? They know this from the scans that were done. They were concerned about his bones when he talked about the back pain right before starting the chemo. Thank God though, it was not anywhere else.

    He is in Canada. I am in the US. So not that much of a difference. I have to ask him about the CEA blood test. He honestly doesn't know much because I feel he is afraid to get the answers. He goes alone to appointments and is scared. BUT..he means the world to me and if I can get to the root of this back pain for him, I would have accomplished one wonderful thing in life at least.

    Thank you for being so sweet to me. You have made me feel so welcome..words cannot express how much that is needed right now.

    I will try to get those answers for you. God Bless.

    Noreen
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #4
    nycchic24 said:

    Hi Marie,
    Thank you for the
    Hi Marie,

    Thank you for the warm welcome and all the information so far. He says he was diagnosed as stage 4 but it hadn't spread anywhere else. Does that sound like it can be correct? They know this from the scans that were done. They were concerned about his bones when he talked about the back pain right before starting the chemo. Thank God though, it was not anywhere else.

    He is in Canada. I am in the US. So not that much of a difference. I have to ask him about the CEA blood test. He honestly doesn't know much because I feel he is afraid to get the answers. He goes alone to appointments and is scared. BUT..he means the world to me and if I can get to the root of this back pain for him, I would have accomplished one wonderful thing in life at least.

    Thank you for being so sweet to me. You have made me feel so welcome..words cannot express how much that is needed right now.

    I will try to get those answers for you. God Bless.

    Noreen

    Dear Noreen
    If your friend is in Canada, try to get him to participate in this board too. We have several here who are in Canada and can help with specifics about how treatments are done, etc. in their health care system.

    Second, your friend needs to put his fears aside and get as much information from his doctors as he can. Not knowing details means that everything will be a shock or may be looked at in worst terms. Getting the detail means that he can be an active participant in his treatments. He needs to do this.

    If the cancer was primary in the colon and had not spread anywhere else, I don't beleive they would stage it at a 4. He needs to know what the real deal is. It will make a difference in treatments and possibilities.

    What he doesn't want to do, or you either for that matter, is to try to find out survival stats on the internet. Those things are based on studies from years ago and are not good yardsticks to go by, as each of us has just as much chance of being on the good side of the stats as anyone else.

    Information is key. If he doesn't know the answers to the questions, get him to write them down, ask the doc at his next appointment, and write down the answers.

    Take care.

    Marie who loves kitties
  • Nana b
    Nana b Member Posts: 3,030 Member
    #5
    Lovekitties said:

    Dear Noreen
    If your friend is in Canada, try to get him to participate in this board too. We have several here who are in Canada and can help with specifics about how treatments are done, etc. in their health care system.

    Second, your friend needs to put his fears aside and get as much information from his doctors as he can. Not knowing details means that everything will be a shock or may be looked at in worst terms. Getting the detail means that he can be an active participant in his treatments. He needs to do this.

    If the cancer was primary in the colon and had not spread anywhere else, I don't beleive they would stage it at a 4. He needs to know what the real deal is. It will make a difference in treatments and possibilities.

    What he doesn't want to do, or you either for that matter, is to try to find out survival stats on the internet. Those things are based on studies from years ago and are not good yardsticks to go by, as each of us has just as much chance of being on the good side of the stats as anyone else.

    Information is key. If he doesn't know the answers to the questions, get him to write them down, ask the doc at his next appointment, and write down the answers.

    Take care.

    Marie who loves kitties

    Not to scare you or him, but
    Not to scare you or him, but has his cancer metastasized to his liver, kidneys or other organ? Is he constipated? With that kind of pain, he should be in a hospital. Oh, stage 4 so it has. Liver?
  • nycchic24
    nycchic24 Member Posts: 4
    #6
    Nana b said:

    Not to scare you or him, but
    Not to scare you or him, but has his cancer metastasized to his liver, kidneys or other organ? Is he constipated? With that kind of pain, he should be in a hospital. Oh, stage 4 so it has. Liver?

    Ok..so I just spoke to him.
    Ok..so I just spoke to him. He has stage 3. Was diagnosed in 3 and is still in 3. They said the tumor shrunk a bit. I guess they are waiting to see if it shrinks anymore or grows for that matter. The thing that no one understands is the back pain. He WAS constipated (severely) before being diagnosed..better now. They tried plain old muscle relaxants but they didnt help. The only thing that does is percocets but no one is trying to find WHY the pain is there and debilitating. Thank you so much again.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
    nycchic24 said:

    Ok..so I just spoke to him.
    Ok..so I just spoke to him. He has stage 3. Was diagnosed in 3 and is still in 3. They said the tumor shrunk a bit. I guess they are waiting to see if it shrinks anymore or grows for that matter. The thing that no one understands is the back pain. He WAS constipated (severely) before being diagnosed..better now. They tried plain old muscle relaxants but they didnt help. The only thing that does is percocets but no one is trying to find WHY the pain is there and debilitating. Thank you so much again.

    I had back pain before starting treatment....
    Now, after all the rads/chemo etc (stage III here, too), I have alot of pain in my back. L5 vertibrae goes out if someone just looks at me wrong...lol....

    Your friend is good to be bugging the docs. I went thru all of it until it was determined that it was not a spread of cancer, and then I hit a chiropractor (with my onc's blessing, mind you!!!!!!!!). He took my pain away...said I will have trouble for the rest of my life....gave me some stretching/exercise tips...

    I now am careful when lifting. I became osteoporotic from the chemo, so I take Actonel (biphosphonate...some say it doesn't help, but it does me...), and glucosamine/chondroiton for my joint pain in knees and elbows. Seems to help the back, as well. But, as I said, I ran ALL of this by my doctor before I started...he said "Probably won't help". I said "Yes, but will it hurt?" He said "For you, no...go for it!".

    Hugs, Kathi
  • nycchic24
    nycchic24 Member Posts: 4
    #8
    KathiM said:

    I had back pain before starting treatment....
    Now, after all the rads/chemo etc (stage III here, too), I have alot of pain in my back. L5 vertibrae goes out if someone just looks at me wrong...lol....

    Your friend is good to be bugging the docs. I went thru all of it until it was determined that it was not a spread of cancer, and then I hit a chiropractor (with my onc's blessing, mind you!!!!!!!!). He took my pain away...said I will have trouble for the rest of my life....gave me some stretching/exercise tips...

    I now am careful when lifting. I became osteoporotic from the chemo, so I take Actonel (biphosphonate...some say it doesn't help, but it does me...), and glucosamine/chondroiton for my joint pain in knees and elbows. Seems to help the back, as well. But, as I said, I ran ALL of this by my doctor before I started...he said "Probably won't help". I said "Yes, but will it hurt?" He said "For you, no...go for it!".

    Hugs, Kathi

    Thank you all for sharing
    Thank you all for sharing your stories and suggesting different things.

    He goes for scans on Wednesday and then gets the results on Thursday. It will be the decision to either go for another 12 rounds of chemo or hopefully a better result than that. He definitely is at stage 3 right now. He is going to discuss the back pain further, mention a chiropractor as well.

    I will be praying for you all. What a wonderful community and thank you again.
  • Unknown
    Unknown
    #9
    nycchic24 said:

    Thank you all for sharing
    Thank you all for sharing your stories and suggesting different things.

    He goes for scans on Wednesday and then gets the results on Thursday. It will be the decision to either go for another 12 rounds of chemo or hopefully a better result than that. He definitely is at stage 3 right now. He is going to discuss the back pain further, mention a chiropractor as well.

    I will be praying for you all. What a wonderful community and thank you again.

    This comment has been removed by the Moderator

Discussion Boards