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Stage IV survivors

sandyjg
sandyjg Member Posts: 71
edited March 2014 in Colorectal Cancer #1
My husband and I need a little encouragement. We would love to hear from Stage IV folks that still have tumors/mets but are still doing well. My husbands liver mets are stubborn and will not go away, despite many different chemos, lots of nutritional supplements, and good diet. We are a bit overwhelmed and would love to hear from others like us who are further down the road that we are. He was dx Jul 05. Thanks in advance. I read this site daily and am always encouraged by other survivor stories.

Comments

  • liverpoolgirl
    liverpoolgirl Member Posts: 44
    hello Sandyig
    I am also the caregiver to my husband,
    Our story so far
    dx 09/02
    rad/chemo sugery 02/03
    post op chemo until 09/03
    mets to lungs (inoperable) 05/05
    chemo folfox/6 treatments changed to folfori both with Avastan
    shrinkage in mets, but they are stubbon little ones, originally 7 now 5 but 60%shrinkage
    changed from Avastan to Erbitux 06/06 still on the chemo 5FU/Leucovorin/Camptosar (sp) to date.

    He is fairing quite well, has to have shots inbetween chemo session to boost his white count, and he has the Erbirash as we call it.

    So here we are alomost 4 years since original dx and still FIGHTING the beast, he also has a permanent colostomy.

    He is my true hero, and only 54 years old. He has a great attitude about all of this, I wonder how he does it sometimes but he just does.

    hang in there just be there for your husband and keep up the good fight

    Debbie
    aka "The English Chick"
  • foxy
    foxy Member Posts: 188
    Hi, I am cancer free at this time, but I was stage 4 with a large liver met that was resected in Dec 1993, I am still here, and ok. I wish you both the very best of luck, it can be done, you are both in my prayers.

    Virginia.
  • carmen07
    carmen07 Member Posts: 120
    My husband stage IV 10/03 resection of mass in colon. Five months of treatment after resection Oxi/Leoc/5fu. Liver Resection 10/04. Chemo after Oxi/Leoc/5fu/Avastin. Reoccurrence 6/05 Pelvis region. Treatment Irrotecan/Erbitux. Shrunk Mass some than stopped. Radiation/5fu treatments 5 1/2 weeks no shrinkage. Waiting to see next course.
    He feels the best he has in a long time because he's off treatment. Researching Clinical Trials at this time which we are both overwhelmed.
    He was hoping to have surgery to remove the mass.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537
    Hi,

    My husband is stage 4 as well. We are really not further along than you. He was dx'd 06/05. After chemo, the liver mets no longer lit up on PET scan. Three months later they were back.

    He is on chemo with Avastin again. We will have CT san in a couple of weeks to determine if the mets are shrinking again. The doctor said that due to location a number of tumors, resection is not an option.

    I know about the overwhelmed feeling. There are many survivors on this board. I am sure they will post and give all of us encouragement. I just wanted to let you know that you are not alone.

    There are many of us who can relate to what you are going through. This board has helped me so much over the last year. Please know that you and your husband are in my prayers.

    Betty
  • oneagleswings
    oneagleswings Member Posts: 425
    Hi- not sure if you read my earlier post and if so this is repetitive but my husband was diagnosed June.04 and after resection and post op chemo found out he was stage 4 with mets to liver and lung...did 6 mos with folfiri and avastin and with no reduction and size and number was switched to xeloda and oxaliplatin and finally saw some good results after 4 treatments (been delayed since with low blood count)...my husband is feeling great- golfing and says he feels well...I know how overwhelming it is and even tho we are not "further down the road" than you I am sure other longer term survivors will respond...Take care
    Bev
  • sandyjg
    sandyjg Member Posts: 71

    Hi- not sure if you read my earlier post and if so this is repetitive but my husband was diagnosed June.04 and after resection and post op chemo found out he was stage 4 with mets to liver and lung...did 6 mos with folfiri and avastin and with no reduction and size and number was switched to xeloda and oxaliplatin and finally saw some good results after 4 treatments (been delayed since with low blood count)...my husband is feeling great- golfing and says he feels well...I know how overwhelming it is and even tho we are not "further down the road" than you I am sure other longer term survivors will respond...Take care
    Bev

    Thanks for the reply, it is so good to hear from others in the same boat. You mentioned the golfing, my hubby left today for his annual 5 day golf trip with his buddies. Last year he missed it because we were in the hospital having emergency surgery and being dx'd with this nasty stuff. This is a basic question, but when you say 4 treatments of xelado, what does that mean? My hubby is on it 2 weeks on, 1 week off. It is making him more tired than any of the other chemo, but he isn't sick and hasn't missed any treaments due to low blood counts. Are your husbands mets shrinking with the xeloda? Our first 6 weeks did not shrink anything. We get CT's every 6 weeks.

    Thanks again for the post, I just want to know everything I can to make the right choices.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    sandyjg said:

    Thanks for the reply, it is so good to hear from others in the same boat. You mentioned the golfing, my hubby left today for his annual 5 day golf trip with his buddies. Last year he missed it because we were in the hospital having emergency surgery and being dx'd with this nasty stuff. This is a basic question, but when you say 4 treatments of xelado, what does that mean? My hubby is on it 2 weeks on, 1 week off. It is making him more tired than any of the other chemo, but he isn't sick and hasn't missed any treaments due to low blood counts. Are your husbands mets shrinking with the xeloda? Our first 6 weeks did not shrink anything. We get CT's every 6 weeks.

    Thanks again for the post, I just want to know everything I can to make the right choices.

    Hi Sandy -

    I'm another Stage IV survivor - liver met - surgery 6/05, chemo starting in July, NED since 8/26/05 - completed 6 cycles - last one started 11/28. I was on Xeloda/oxaliplatin/Avastin. When someone mentions X treatments of Xeloda, they mean X cycles. Each cycle is - as you say - 2 weeks on, 1 week off - so one Xeloda "treatment" is Xeloda for two weeks, followed by a one week break.

    Hope this helps,
    Betsy
  • cheer3
    cheer3 Member Posts: 105
    Hello,
    I am a stage IV survivor. I had colectomy & Liver resection (60% removed) I am also on a liver friendly diet. I had two types of chemo, systemic and direct into liver. I also had fluid in my lungs & a mass in lower abdomen, which was not found on last scans. I have been in remission for three years.I feel wonderful & can do anything I want. I hope this helps.
    Blessings to you,
    Jean