Help Needed

Nicola77
Nicola77 Member Posts: 3
edited March 2014 in Colorectal Cancer #1
Hi there

I have been reading the posts on here for a little while. Today feeling nothing but despair I decided to post a message and see if anyone can offer help, advice or information. My husband and I live in the UK. My husband is 39. He was diagnosed with bowel cancer in May this year. By the time he was diagnosed the cancer had already spread to his liver and spine. We have a 10 month old baby. He was given chemotherapy with Irinotecan and 5FU which initially seemed to be working. The first scan half way through was excellent and gave us hope. The second however showed the chemo had stopped working and the cancer was growing again. His oncologist said he could try more chemo with Oxiplatin and Xeloda. He hasn't been doing very well lately. He was struggling with nausea and starting losing weight. He has also lost so much muscle he was finding it very difficult to move around. We are attempting to sort that out with diet, supplements etc but then he was admitted to hospital last week with an infection and is still there.

His oncologist is saying that he probably shouldn't have any more chemo and should just enjoy the time he has left. He says that surgery on the liver isn't an option because of the mets in his spine so it wouldn't prolong his life.

I am devastated and starting to wonder if there is no hope but then I saw this site and saw that some of you have been living with Stage iV cancer for some years. I am not sure that happens in the UK and wondered how you had managed to achieve this. I would be grateful for posts from anyone in this situation who can offer some hope. I would love to know what treatments you have had, whether you have ever had infections or been hospitalised. If anyone has tried any alternative or complementary therapies that have worked I would also be interested to hear about them.

I don't want to lose my husband. I want my baby to know his father so any help or advice would be gratefully received. You all seem so positive. I can't help but wonder if there might still be hope.

Best Wishes

Nicola

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #2
    Sorry
    I am sorry you are in this situation and your husband is struggling so. I'm not able to help you with the type of cancer your husband has, but there will be someone here that can give you their experience. I just wanted to let you know you are being thought of.

    Kim
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #3
    Nicola,
    I cannot be of any help other than to tell you that I have already prayed for your husband and your precious family before respoding.

    I'm sure some of our Stage IV's who have more exprience that Kim and me will jump in to help quite soon.

    God Bless,
    Diane
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    Nicola
    I wanted to welcome you to the board. While I do not have any experience with mets to the spine, there are some people on here who have experienced this and I'm sure they will post their experience for you. My hubby is also Stage IV with mets to the liver and lungs. We just completed our first go around of chemo and he responded well to the chemo. He received the chemo drugs Oxaliplatin, Leukevoran(sp), 5FU and Avastin along with Decadron(steroid) and anti-nausea drug Anzamet. I'm sorry you are going through this at such a young age. Feel free to post any questions you may have and someone will come on and post their experience. Best wishes - Tina
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #5
    geotina said:

    Nicola
    I wanted to welcome you to the board. While I do not have any experience with mets to the spine, there are some people on here who have experienced this and I'm sure they will post their experience for you. My hubby is also Stage IV with mets to the liver and lungs. We just completed our first go around of chemo and he responded well to the chemo. He received the chemo drugs Oxaliplatin, Leukevoran(sp), 5FU and Avastin along with Decadron(steroid) and anti-nausea drug Anzamet. I'm sorry you are going through this at such a young age. Feel free to post any questions you may have and someone will come on and post their experience. Best wishes - Tina

    Nicola...I am sending you a PM........
    Click on home, then new mail, then click on the line that says "Nicola, I am sending you a PM"
  • donnare
    donnare Member Posts: 266
    #6
    Hi Nicola
    I'm a caregiver too. I just wanted to say you and your family are in my prayers. You will find great support and information here.

    Take care,
    Donna
  • Shayenne
    Shayenne Member Posts: 2,342
    #7
    donnare said:

    Hi Nicola
    I'm a caregiver too. I just wanted to say you and your family are in my prayers. You will find great support and information here.

    Take care,
    Donna

    Welcome Nicola!
    There is always hope! I am a Stage 4, with cc and multiple mets in my liver, which my onc has said is still inoperable, I was diagnosed last January, and am still here almost a year later...I think I surprised my onc even! The chemo I as on is Folfiri with Avastin, which shrunk my tumors, but has stabliled, and not had any new growth either. They will be taking me off of the Irinotecan after 2 more treatments (I'm on my 16th Now?? I lost count...)

    But this was not a easy journey this year...I've had like 5 operations, due to an infected wisdom tooth, which I had pulled, along with another one, so it wouldn't get infected either, which landed me in the hospital. I've had a temporary colostomy, which I will keep permanently, because I'm scared of retraining the bowels, and I've had like 3 blockages, which landed me in the hospital, one with surgery, 2 without, it was like one thing after another, and thought I wasn't going to make it this year. I lost sooo much weight, but have regained it back, I bounced back, I do have a really good Comprehensive Care Center, they are in the top 20 at least, you really need a hospital that just specializes in cancer.

    I'm so sorry he has to go through this, having a sweet little baby as well, and you know, the only one who knows how long we have is God, no one else, so don't let an onc tell you he has so many months to live, because they can be wrong, and have been. There are people on here who were told they only have a few months to live, and they're still here, years later.

    My onc never once gave me a prognosis date, and I will never ask her, I don't want to know..she said people live with this for years, and it's like a chronic disease now, like diabetes, it's just a new way of life. He does need to force himself to eat, get alot of proteins in him, like Ensure, he needs his weight to fight this, I know easier said then done, but I've had to force drinks and food down myself, just to be sure I get my weight back.

    If you have any other questions, I'm no expert, but I'm here for your and your hubby's support through this, and will pray for you both as well, just don't lose the hope, there is alot of advanced treatments out there, if you need other doctor opinions, get it ;)

    Hugsss!
    ~Donna
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #8
    Sorry
    Nicola,

    I'm so sorry about your husband. I would try to get 2nd opinions or 3rd opinions to see if another doctor has a different approach.

    I am praying for your family.

    *hugs*
    Gail
  • sfmarie
    sfmarie Member Posts: 602
    #9
    HOPE
    Nicola,

    I am sorry you are having to deal with this and a small baby too! It is not fair, you should be concentrating on enjoying your new baby.
    I read your story, and am saddened your dr. seems to be giving up hope on your husband. DON"T GIVE UP. When you think things aren't working, they can turn around and do a full 180. My sister was dx 03/09 stage IV at age 39 w mets to liver, ovaries and peritoneum. She has three small children. She has been on various forms of chemo since dx. When they thought things were not working and told her to look for a clinical trial, the next PET showed that the cancer was shrinking and even gone. Now, they are talking liver resection where before they said no. So, do not give up. Look for second and third opinions.

    You are in my prayers.
  • dorookie
    dorookie Member Posts: 1,731 Member
    #10
    Welcome
    I am sorry you have to be here, but you have truly found the best supportive site ever. If your hubby is feeling up to it, I would encourage him to get on this site, he may too have questions or just need to read some really great and inspirational posts here. I am a stage 4 survivor, completed treatment about 5 months ago for the second time in 2 years, and I am now currently cancer free and plan on staying that way. Please dont ever give up hope, sometimes at the end of the day that maybe all we have to hold on to. Take each day as best you can, love each other, and together fight! You now have us to help you fight, we are much stronger in groups, you and your hubby will not be alone, we will travel this journey with you, and we will be here to help you in anyway we can.

    God Bless
    Beth

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