update - advice needed

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emrose
emrose Member Posts: 136
edited March 2014 in Colorectal Cancer #1
A couple of updates:

My husband WILL be participating in the 2011 Colondar :)

He is scheduled for a thoroctomy/wedge resection on March 9th to have 3 leisons removed from his right lung

He is terrified about more chemo, feels like neither folfox or folfuri worked since he has done both and the cancer still spread so quickly.

My questions:

What options are there for chemo after surgery since he has already tried Folfox and Folfuri?

Has anyone had surgery for a recurrance and NOT done chemo after?

We are looking into clinical trials AND naturopathic options. There is a famous naturpathic oncologist a few hours from us that we are hoping to meet with - not to REPLACE conventional treatment but to enhance it. Any advice regarding either of these?

Thanks everyone!!

Comments

  • jillpls
    jillpls Member Posts: 238
    #2
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    homopathic
    I just started (6 weeks ago) with homopathic to help get through treatment. It has really helped. I now take a therbotic powder every morning and eat yogart with kerfers each day. My dr also had me get some chemo support pills and use ginger honey for nausea. All has helped. The other thing I have started is "Healing Touch". It's somewhat like reike which is a form of massage. The person who helps me helps with imagery and well being. She prays on me and then gets the energy to help heal me. It's been amazing the difference I have had going to treatment. As for trying other treatments, have you looked into clinical trials?? God bless you on your journey and congrats on the being selected for the colonder. I purchase it every year.
    Jill
  • zenmonk
    zenmonk Member Posts: 198
    #3
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    post surgery chemo
    I had two surgeries. On they did not do post surgery chemo and one they did do post surgery chemo. I am not sure about what more chemo drugs are available becuase I dont know which drugs they use once its in the lungs. I think you have the right attitude about alternative treatments. The more tangilbe options you can come up with the better. Good Luck and I am praying for you guys.
  • dorookie
    dorookie Member Posts: 1,731 Member
    #4
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    Xeloda
    I was DX May 07, had surgery, chemo, radiation all in about 8 months, within about 6 months I had the cancer spread to my right lung, had a resection/wedge removal, then I went on Xeloda for 8 months. It is 5FU in pill form. So much better then the IV chemo. I took it twice a day for 14 days, then had 7 days off. Side effect for me were much less than the IV chemo. I have been cancer free for over a year if you count from the surgery I had in Nov 08, or 8 months if you count from when I stopped chemo Jun 09. I get my next scheduled scans on Monday, and I am praying real hard that the cancer is still gone.

    Your baby is sooooo cute, I know you are just enjoying him like crazy. I wish the best for you and your hubby, tell him to stay strong. I went through the surgery he is about to have, it was not easy, I wont lie, but within a few days after the actual surgery, things seemed to get better pretty fast as far as the healing goes. They had to take out part of my rib to get to my lung, and they went in from my back. I still am weak on that side, and have pain once in a while. I probably should be exercising more but who the heck has the time, I do good just making it to work...LOL

    If you have any questions please let me know.
    Take care
    Beth
  • emrose
    emrose Member Posts: 136
    #5
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    dorookie said:

    Xeloda
    I was DX May 07, had surgery, chemo, radiation all in about 8 months, within about 6 months I had the cancer spread to my right lung, had a resection/wedge removal, then I went on Xeloda for 8 months. It is 5FU in pill form. So much better then the IV chemo. I took it twice a day for 14 days, then had 7 days off. Side effect for me were much less than the IV chemo. I have been cancer free for over a year if you count from the surgery I had in Nov 08, or 8 months if you count from when I stopped chemo Jun 09. I get my next scheduled scans on Monday, and I am praying real hard that the cancer is still gone.

    Your baby is sooooo cute, I know you are just enjoying him like crazy. I wish the best for you and your hubby, tell him to stay strong. I went through the surgery he is about to have, it was not easy, I wont lie, but within a few days after the actual surgery, things seemed to get better pretty fast as far as the healing goes. They had to take out part of my rib to get to my lung, and they went in from my back. I still am weak on that side, and have pain once in a while. I probably should be exercising more but who the heck has the time, I do good just making it to work...LOL

    If you have any questions please let me know.
    Take care
    Beth

    Thank you
    It sounds like your situation is very similar. I do have a couple questions, if you don't mind:

    1. What chemo did you do the first time around?
    2. How many spots were in your lung?
    3. When you did xeloda, did you do any other drugs with it? (oxi, avastin, erbitux, etc?)

    thanks so much for sharing your experience! It's so much like my husbands so its really helpful!

    Oh - and thanks, I think my little guy is pretty darn cute!! I just love his smile and chubby cheeks! He's so sweet, although I do worry about taking care of him and my husband after surgery and through more treatment. I want to spend as much time as possible at the hospital, but it just won't be the same as his first surgery when there wasn't a little one to take care of!

    I wish you the BEST of luck with your scan on Monday! I'll be thinkin of you! It will just sooo wonderful to get another clean scan! :)
  • emrose
    emrose Member Posts: 136
    #6
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    jillpls said:

    homopathic
    I just started (6 weeks ago) with homopathic to help get through treatment. It has really helped. I now take a therbotic powder every morning and eat yogart with kerfers each day. My dr also had me get some chemo support pills and use ginger honey for nausea. All has helped. The other thing I have started is "Healing Touch". It's somewhat like reike which is a form of massage. The person who helps me helps with imagery and well being. She prays on me and then gets the energy to help heal me. It's been amazing the difference I have had going to treatment. As for trying other treatments, have you looked into clinical trials?? God bless you on your journey and congrats on the being selected for the colonder. I purchase it every year.
    Jill

    Clinical trials
    Yes, we are looking into clinical trials. Just at the very begining of this process though!
    It's a little overwhelming, but I know it's important.

    I'm glad you've had some success with homeopathic treatment. We really want to attack this from all angles!!

    Thanks for the response. I really appreciate it!
  • dorookie
    dorookie Member Posts: 1,731 Member
    #7
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    emrose said:

    Thank you
    It sounds like your situation is very similar. I do have a couple questions, if you don't mind:

    1. What chemo did you do the first time around?
    2. How many spots were in your lung?
    3. When you did xeloda, did you do any other drugs with it? (oxi, avastin, erbitux, etc?)

    thanks so much for sharing your experience! It's so much like my husbands so its really helpful!

    Oh - and thanks, I think my little guy is pretty darn cute!! I just love his smile and chubby cheeks! He's so sweet, although I do worry about taking care of him and my husband after surgery and through more treatment. I want to spend as much time as possible at the hospital, but it just won't be the same as his first surgery when there wasn't a little one to take care of!

    I wish you the BEST of luck with your scan on Monday! I'll be thinkin of you! It will just sooo wonderful to get another clean scan! :)

    Hi
    1. What chemo did you do the first time around?
    I did 3 months of Folfox with Oxy, had to stop the oxy after my 7th treatment. Then I did 6 weeks of radiation and took Xeloda daily while doing radiation, then did another 3 months of Folfri 5FU no Oxy.

    2. How many spots were in your lung?
    I had one that was about 3cm if I remember correctly. It was in the middle lobe, it was very close to a main blood vessel, but I had a great surgeon (she looked so young that I actually asked to see her Driver Lic to prove her age, I told her - if your going to do to me what you just described, I want someone with some experience...LOL) and she didnt have to take the whole lobe just did a wedge.

    3. When you did xeloda, did you do any other drugs with it? (oxi, avastin, erbitux, etc?)
    Nope, nothing but Xeloda, however I was on a pretty high dose, I was taking about 5000 mg per day. It was tough, but much more do able then the IV chemo. Hard to swallow those pills knowing they were going to make you feel like crap. The difference I would say from the IV chemo is that with the IV chemo you felt pretty bad for about 3-5 days, with the Xeloda (after a few cycles) I would tend to just feel crappy for many days during the 14 days of taking the meds. Then I would have 7 days off, and just when I started feeling better, it was time to take the pills again.

    Again though feeling crappy for a longer period of time was better then feeling horrible for the 3-5 days on IV chemo, in my opinion.

    I do have some long term or maybe permanent side effect from the chemo. I cant honestly say if it was the IV chemo, Radiation or the Xeloda. If I were to guess I would say the Radiation and the IV chemo has cause my neuorapathy (sp) in my feet and left leg. I have extensive lower back pain on my left side. WOrking with a pain doc on that. Taking meds for neuorapathy, it helps some but the pain gets pretty bad.

    Hope this info helps, if you have any other questions please just let me know. You might want to PM me, that way I dont miss it, because it will come to my email.

    Take care and God bless
    Beth
  • emrose
    emrose Member Posts: 136
    #8
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    zenmonk said:

    post surgery chemo
    I had two surgeries. On they did not do post surgery chemo and one they did do post surgery chemo. I am not sure about what more chemo drugs are available becuase I dont know which drugs they use once its in the lungs. I think you have the right attitude about alternative treatments. The more tangilbe options you can come up with the better. Good Luck and I am praying for you guys.

    Interesting
    I'm curious in what order you did this. Did you do chemo after your first surgery, but not your second? Or other way around? Seems like no two doctors agree on this!

    Thanks for the positive thoughts. That means a lot.

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