My sister

chutney
chutney Member Posts: 11
edited March 2014 in Colorectal Cancer #1
Hello Everyone! I haven't posted in a couple of weeks b/c my sister was hospitalized again and we have had a lot of family in town. I wanted to ask if any of you know about any other chemo drug or an experimental treatment that my sister can try. I am sending a letter to several cancer centers...I am attaching part of the letter in hopes that one of you can refer me to someone or knows about another chemotherapy drug that she can try...thanks

I am writing on behalf of my sister. My sister was diagnosed with colon cancer Nov 2001, she was 35 at the time. I am writing this letter to find out if you would review her medical files and tell us if there are any new chemotherapy drugs or any other treatment out there that she can try. We have all of her records and we want to send them to as many doctors as we can because we know that research changes daily and there might be a chemotherapy drug out there that we haven’t tried or an experimental drug she can try or someone that is willing to operate on her. If someone has positive results we would appreciate the information to help cure her.

Her most recent medical status is that she has mets to her lungs and a tumor in her right abdomen area. The most recent chemo that she was on was oxaliplatin combined with capecitabine and Avastin.. Her CEA is 164. She has also been on FOLFOX-4, irinotecan and Erbitux, and then irinotecan and Avastin.
She is currently on Xeloda only.

Please let me know if any of you know of anything else that we can try.

Thank you so much!

Comments

  • bsrules
    bsrules Member Posts: 296
    #2
    Hello There!!! I just read your post and I only know how desperate you are right now!!!!!

    My husband Bob ran the gammit as far as chemo drugs go also. But he was to far into the final stage to get any help. His wanted to keep fighting but his body just didn't have anything left to fight with.

    I contacted the Cancer treatment Center of America in Zion, Illinois. I spoke with them over the phone and gave them all the info. They were will to see Bob and fly the both of us there for free and keep us there also for free. They have Centers also in Seattle, Wash and in Texas not sure of the town. You can find them on the web site. I have to dig up the info. to get the number for you. Unfortunately, Bob passed away before we could make the trip. From what I have heard about them is that they specialize in Advanced cancers. Did you contact them? If not try it couldn't hurt. I will get the number for you as soon as I can!!!!!

    Hang in there!!!!! You are a super sister!!!!

    Prayers and Hugs coming your way!!!

    Sue
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #3
    bsrules said:

    Hello There!!! I just read your post and I only know how desperate you are right now!!!!!

    My husband Bob ran the gammit as far as chemo drugs go also. But he was to far into the final stage to get any help. His wanted to keep fighting but his body just didn't have anything left to fight with.

    I contacted the Cancer treatment Center of America in Zion, Illinois. I spoke with them over the phone and gave them all the info. They were will to see Bob and fly the both of us there for free and keep us there also for free. They have Centers also in Seattle, Wash and in Texas not sure of the town. You can find them on the web site. I have to dig up the info. to get the number for you. Unfortunately, Bob passed away before we could make the trip. From what I have heard about them is that they specialize in Advanced cancers. Did you contact them? If not try it couldn't hurt. I will get the number for you as soon as I can!!!!!

    Hang in there!!!!! You are a super sister!!!!

    Prayers and Hugs coming your way!!!

    Sue

    Hi Chutney. I am sorry I can't be too helpfull because I am in OZ. Nonetheless our prayers go out to you and your sister. I hope Sue's info will be of some benefit.
    (Told yah Sue-----you are too important to us to be away too long! You have a wealth of advice that Bob would be proud to hear you giving!)
    luv Kanga n Jen
  • chutney
    chutney Member Posts: 11
    #4
    bsrules said:

    Hello There!!! I just read your post and I only know how desperate you are right now!!!!!

    My husband Bob ran the gammit as far as chemo drugs go also. But he was to far into the final stage to get any help. His wanted to keep fighting but his body just didn't have anything left to fight with.

    I contacted the Cancer treatment Center of America in Zion, Illinois. I spoke with them over the phone and gave them all the info. They were will to see Bob and fly the both of us there for free and keep us there also for free. They have Centers also in Seattle, Wash and in Texas not sure of the town. You can find them on the web site. I have to dig up the info. to get the number for you. Unfortunately, Bob passed away before we could make the trip. From what I have heard about them is that they specialize in Advanced cancers. Did you contact them? If not try it couldn't hurt. I will get the number for you as soon as I can!!!!!

    Hang in there!!!!! You are a super sister!!!!

    Prayers and Hugs coming your way!!!

    Sue

    Sue,

    Thank you so much. I will have to look this one up. We are in Texas. We will go anywhere so thanks so much

    Anita
  • chutney
    chutney Member Posts: 11
    #5
    kangatoo said:

    Hi Chutney. I am sorry I can't be too helpfull because I am in OZ. Nonetheless our prayers go out to you and your sister. I hope Sue's info will be of some benefit.
    (Told yah Sue-----you are too important to us to be away too long! You have a wealth of advice that Bob would be proud to hear you giving!)
    luv Kanga n Jen

    thank you Kanga n Jen
  • spongebob
    spongebob Member Posts: 2,565 Member
    #6
    Hi, Anita -

    A couple of other things you might want to do...

    Since you are in texas (and we all know what a small state that is), you may want to contact Sloan Kettering - assuming you haven't already. They are one of the foremost cancer hospitals in the world. You might also check the National Institutes of Health/National Cancer Institute website (I don't have the URL handy, but a quick Google should get you there easily). As I recall they have a huge section on trials. They are in Washington, DC and are very easy to access.

    What a wonderful suster you are for doing all of this research for your sister, Anita. No doubt she appreciates it more than you know.

    Hang in there. Keep a positive outlook. Keeping you both in my prayers.

    - SpongeBob
  • bsrules
    bsrules Member Posts: 296
    #7
    Hello There!!!! I was up early as usual and I found the Phone number for you.

    Cancer Treatment Centers of America
    1-800-234-7149

    When or if you call them have all of you sisters records in front of you. They will ask you lots of questions about her prior treatments and the results. Besides alot of other questions.

    Good Luck and let us know how you make out!!!

    Hugs and Prayers!!!

    Sue
  • jana11
    jana11 Member Posts: 705
    #8
    Hi.. I am so sorry for all you are dealing with. You are an amazing sister.

    Being in TX; have you or your onc called MD ANderson? In Houston. I have heard from several different patient that the heart of MDA is superior to Sloan Kettering. Both have excellent cancer care, but MDA has more warm fuzzies (and more doctor:patient ratios).

    I am a Houston gal and get all my care from MDA. Try to get in, if you haven't already. The surgeons there are top notch.

    Email me if you need some names, but your onc should know them too.

    Best of luck. Stay tough, and loving. jana
  • spongebob
    spongebob Member Posts: 2,565 Member
    #9
    jana11 said:

    Hi.. I am so sorry for all you are dealing with. You are an amazing sister.

    Being in TX; have you or your onc called MD ANderson? In Houston. I have heard from several different patient that the heart of MDA is superior to Sloan Kettering. Both have excellent cancer care, but MDA has more warm fuzzies (and more doctor:patient ratios).

    I am a Houston gal and get all my care from MDA. Try to get in, if you haven't already. The surgeons there are top notch.

    Email me if you need some names, but your onc should know them too.

    Best of luck. Stay tough, and loving. jana

    WOOPS! I mis-spoke; I MEANT MD Anderson vs. Sloan-Kettering!

    - SB
  • chutney
    chutney Member Posts: 11
    #10
    spongebob said:

    WOOPS! I mis-spoke; I MEANT MD Anderson vs. Sloan-Kettering!

    - SB

    Thank you all so much. My sister has been a patient at MD Anderson since 2001. When she was there early March they thought that she had a full bowel obstruction, were not wanting to operate or try any other chemo and gave her 2-3 months to live. Turns out the obstruction is only partial and she is able to eat...good news. I called her doctor here in Austin and asked if he would treat her b/c we didn’t want to give up. I think MD Anderson is a wonderful place, she has great doctors there. We just don't want to give up on the basis that they "suspect" that she might have something. They told us in January that there was a 95% chance that the cancer had gone to her brain and repeated tests have always been negative. I just want to do whatever I can. You are all so supportive and I really appreciate your help
    Anita

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