Anyone else have mets to muscles and bones?

jethro-t
jethro-t Member Posts: 20
edited March 2014 in Esophageal Cancer #1
My husband, Hal, 57 yr. old, began this EC journey back in November 2009. He had difficulty swallowing, had endoscopy, found tumor, spread to lymphs and biopsied discovered mets to muscles and bones (ribs, tailbone, muscles all over - legs mostly.) He began having pains in legs, pain has gotten increasingly worse over these months. All the while, we began radiation and chemo (Taxotere and Carboplatin). The last scans showed radiation had helped shrink the primary tumor site, but the 6 weeks of chemo had not helped at all. We are devastated as his pain has increased, leg weakness and now his arms are affected. The PET scan showed aggressive changes to muscular system.

We begin a new chemo drug duo tomorrow in hopes this will work to kill some of this cancer, or at least slow it down. He is not the man he was a few months ago. They have had to increase his pain meds significantly and I do not know when he is safe to leave alone now. He tells me he is okay, but then he can't remember stuff and gets it confused. (head CT was clear! praise)

Just wondering if anyone else has had anything like this and if they got better with further treatments. He is about ready to give up, but we have two wonderful kids and I want him to fight, but he is already tired of feeling so bad. I have to "coach" him to eat or drink. Even after the "burned up" feeling from his esophagus radiation subsided. He still doesn't want to eat very much.

Please offer me some suggestions if you have any. I think the new chemo meds are Cisplatin? and 5FU? not sure if this is correct, will find out tomorrow.

I had been reading so many good reports on here, I had so much hope that his first treatments would help some and to know that all that chemo did nothing. I'm glad the radiation helped the esophagus, but he still can't swallow very good (especially meds). We do liquids and crush other pills.

Thanks for any advice. He tells me he feels this is just taking over his whole body and he has not control.

I pray everyday and many are praying for us, that is the only reason I have any strength to work and take care of him and the two kids is all the support we have had from church family and friends.

Jethro-T
(Rhonda)

Comments

  • mumphy
    mumphy Member Posts: 440
    #2
    Rhonda
    Hi its Kath aka Mumphy,

    I want you to know that unfortunatly your husband is right. Al could tell that the cancer was taking over his body. I'm sure you know the story if not read my posts, It is very difficult for me to go over everything. He did the chemo and had the surgery and still this nasty disease attacked his spine to the point that he had compression fractures.

    He fought until the end. During the last Dr.s appt. he still wanted to have the post op chemo. The Dr.s couldn't do it because the cancer had taken over his liver.

    Also to my knowledge there are other people on this site who also have mets to bones and muscles. I would talk to the Dr.s and ask them to be up front with you. Thats what I did.

    This is a difficult post for me, and I know that Al's Dr.s did everthing that they could.

    I don't mean to sound cruel in anyway but you need to know.

    God Bless my prayers are with you. I haven't been posting much but if you have a specific question sent me a private e-mail and I will do my best to help you.

    Kath
  • jethro-t
    jethro-t Member Posts: 20
    #3
    mumphy said:

    Rhonda
    Hi its Kath aka Mumphy,

    I want you to know that unfortunatly your husband is right. Al could tell that the cancer was taking over his body. I'm sure you know the story if not read my posts, It is very difficult for me to go over everything. He did the chemo and had the surgery and still this nasty disease attacked his spine to the point that he had compression fractures.

    He fought until the end. During the last Dr.s appt. he still wanted to have the post op chemo. The Dr.s couldn't do it because the cancer had taken over his liver.

    Also to my knowledge there are other people on this site who also have mets to bones and muscles. I would talk to the Dr.s and ask them to be up front with you. Thats what I did.

    This is a difficult post for me, and I know that Al's Dr.s did everthing that they could.

    I don't mean to sound cruel in anyway but you need to know.

    God Bless my prayers are with you. I haven't been posting much but if you have a specific question sent me a private e-mail and I will do my best to help you.

    Kath

    Kath - Hi
    Thanks so much for your reply. We started our new "trio" of chemo yesterday. It is rough already. He is taking 2 drugs (Fusilev and Oxaliplatin) at the clinic and comes home with infusion pump with the other one (5-FU). The oxaliplatin side effects make you stay away from "cold" for several days to a week we are told. Didn't get much sleep getting used to the "pump" and his port hasn't healed good yet.

    I want so bad to believe that this is already working to kill some of that cancer. He feels so bad (different he says), but since we have not had any treatments for 5 weeks or more, I know he says he feels like the cancer has taken over and there's probably no hope.

    I know God is showing Himself to us daily through friends, church and on here (people like you) helping to coach those of us who don't know what to do.

    Things have just happened so fast, I haven't been where I could just ask the doctor questions without feeling like I'm giving up already.

    I do want to know everything, and the doctor says this is the next thing he thinks we should try without going to the "worst" stuff.

    Hopefully in the weeks to come, we will either get some good news on the homefront (signs the tumors in his legs are shrinking) or the doctor will give us some "up front news". I will pray to be bold to ask more questions. I think I'm still in shock that the first stuff we tried hasn't helped.

    I had read your posts and journey and admire you for being so brave and sharing. I hope one day to be a help to others walking where we are.

    I will try to send a private email this week. I don't get to get on here much taking care of him after work each day.

    Rhonda (jethro-t)
  • Caballero38
    Caballero38 Member Posts: 35
    #4
    jethro-t said:

    Kath - Hi
    Thanks so much for your reply. We started our new "trio" of chemo yesterday. It is rough already. He is taking 2 drugs (Fusilev and Oxaliplatin) at the clinic and comes home with infusion pump with the other one (5-FU). The oxaliplatin side effects make you stay away from "cold" for several days to a week we are told. Didn't get much sleep getting used to the "pump" and his port hasn't healed good yet.

    I want so bad to believe that this is already working to kill some of that cancer. He feels so bad (different he says), but since we have not had any treatments for 5 weeks or more, I know he says he feels like the cancer has taken over and there's probably no hope.

    I know God is showing Himself to us daily through friends, church and on here (people like you) helping to coach those of us who don't know what to do.

    Things have just happened so fast, I haven't been where I could just ask the doctor questions without feeling like I'm giving up already.

    I do want to know everything, and the doctor says this is the next thing he thinks we should try without going to the "worst" stuff.

    Hopefully in the weeks to come, we will either get some good news on the homefront (signs the tumors in his legs are shrinking) or the doctor will give us some "up front news". I will pray to be bold to ask more questions. I think I'm still in shock that the first stuff we tried hasn't helped.

    I had read your posts and journey and admire you for being so brave and sharing. I hope one day to be a help to others walking where we are.

    I will try to send a private email this week. I don't get to get on here much taking care of him after work each day.

    Rhonda (jethro-t)

    Rhonda,
    Hi Rhonda,

    My cancer had mets to the bones, I actually broke my neck and my hip started to deteriorate. My Doctor had told me this is terminal for me, but suggested chemo and Radiation therapy. I asked around for help to decide what to do, the person that help me decide to do the treatment and not give up is Kath. Well, I did do the treatment; I had the radiation and chemo. I wish I could tell you what kind of drug the chemo is, but I'm not sure. I'll have to look it up.

    Here is my story,

    I was walking with using a walker and of course fresh out of surgery from my neck, this was in end of Dec 09. I decided to do the treatment and now it’s March, and I am schedule for a scan net month, but I am walking better, every time I finish chemo, I feel great with a lot of energy and am hungry like you wouldn't believe. I'm not sure what it is that is making me feel better, I'm sure all the prayers and my attitude doesn't hurt. The radiation worked wonders on my hip and neck. I am walking a lot better now, i can move around without too much pain, and can almost leave my cane behind.

    Stories that I read here have a great impact on me. Kath & Al really touched my heart and I owe a lot to Kath. Every situation is different. I had my esophogectomy in October they told me I was cancer free, in remission. A few months later it mets to the bones, ribs neck, hip and legs. Although, I'm feeling better, I have to wait until we have the ct scan to really know what's going on. I still have some pain activity in my liver area, but I'll wait and see.

    I will look up the information on the type of chemo i'm having and i'll get back to you. Please be assured I will keep your husband in my prayers.

    Sincerely,

    Luis Rodriguez
  • jethro-t
    jethro-t Member Posts: 20
    #5
    Caballero38 said:

    Rhonda,
    Hi Rhonda,

    My cancer had mets to the bones, I actually broke my neck and my hip started to deteriorate. My Doctor had told me this is terminal for me, but suggested chemo and Radiation therapy. I asked around for help to decide what to do, the person that help me decide to do the treatment and not give up is Kath. Well, I did do the treatment; I had the radiation and chemo. I wish I could tell you what kind of drug the chemo is, but I'm not sure. I'll have to look it up.

    Here is my story,

    I was walking with using a walker and of course fresh out of surgery from my neck, this was in end of Dec 09. I decided to do the treatment and now it’s March, and I am schedule for a scan net month, but I am walking better, every time I finish chemo, I feel great with a lot of energy and am hungry like you wouldn't believe. I'm not sure what it is that is making me feel better, I'm sure all the prayers and my attitude doesn't hurt. The radiation worked wonders on my hip and neck. I am walking a lot better now, i can move around without too much pain, and can almost leave my cane behind.

    Stories that I read here have a great impact on me. Kath & Al really touched my heart and I owe a lot to Kath. Every situation is different. I had my esophogectomy in October they told me I was cancer free, in remission. A few months later it mets to the bones, ribs neck, hip and legs. Although, I'm feeling better, I have to wait until we have the ct scan to really know what's going on. I still have some pain activity in my liver area, but I'll wait and see.

    I will look up the information on the type of chemo i'm having and i'll get back to you. Please be assured I will keep your husband in my prayers.

    Sincerely,

    Luis Rodriguez

    Thanks Luis
    I read your reply above and really want to know more about your radiation therapy and chemo. My husband is experiencing SEVERE pain. It has gotten worse from day 1 and now we know since the first chemo did not work (carboplatin and taxotere), the cancer has spread vigorously into his muscles and ribs, tailbone. He can barely walk and sit back down without excruciating pain. Now since we had our first treatment of the new chemo (5-FU, Fusilev and Oxaliplatin) the pain has gotten even worse, with swelling and continuous throbbing everywhere we know there is cancer. We are told this new increased pain and swelling can just be a side effect of the chemo drugs at work and this could be "good" news. I guess we won't really know until we do tests again which could be months away.

    I just don't know how much more of this pain he can take. Of course, they keep increasing pain medications, but I'm wondering (we meet with radiation dr. again this week) if more radiation would help, but since he has so many spots, where do we start? It did help the primary tumor in the esophagus, but since his has spread to so many spots, I just don't know if that would slow us down (because if we do radiation and chemo together, they back off and give lower doses of the chemo. Maybe the stronger dose chemo would do more good. It's just so much to consider and right now we don't know if this is helping or not and the pain is almost unbearable.

    He has gone from a healthy strong man to a man that looks like his 90 years old and can barely walk without crying. He just lays there all day.

    Let me know when you know what chemo you took and how long. Also where did you do the radiation (hip, leg, ?)
    Thanks for the encouragement. At least you are feeling better. I'm glad for you.

    My husband feels worse with each treatment. How can I continue to convince him we are doing the right thing?

    Sincerely,
    Rhonda (jethro-t)

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