Seeking urgent information on small bowel cancer

tom88
tom88 Member Posts: 17
edited March 2014 in Colorectal Cancer #1
As with everyone else who posts on this great forum, I did not wish to ever have the need to come here. My mother (45) was diagnosed with small bowel adenocarcinoma a year ago and underwent resection of a segment of the small intestine, removal of uterus and ovaries. She then went on chemotherapy for a year in hopes of getting rid of the residual nodules of cancer in the abdomen. All was well until two weeks ago she complained of bloating and then went for laparotomy to be discovered with peritoneal carcinomatosis. The surgeon gave up on the spot and sewed her back up saying there's nothing he could do. Her bowels are still obstructed, she's on NG tube and living on IV fluids. The oncologist said he can't start her on chemo until she improves to the point of being an 'outpatient'. You can see that I'm in extreme distress because if she can't eat properly, she can't heal to receive chemo, and therefore her cancer will progress. I've looked up on the current treatments for PC and came up with HIPEC and Dr. Sugarbaker's name. I've since then emailed him and his reply was that small bowel PC is not a diagnosis he works with but there are centers in the US that does. I ask if anyone here knows a center which will treat small bowel PC.

From what I've been reading many people here have received great help from their doctors. My experiences with oncologist and surgeon haven't been the most pleasant. The oncologist said he was skeptical of the results of HIPEC, and that he would just change her chemo drugs if she's able to come out of her current condition. I feel so powerless in the face of such callous and unmotivated doctor. I also feel so dumb now because I can't even name the chemo drugs that she was on; I believe they were 5FU and leucovorin. We live in Canada, and I dont' believe the other chemo agents are first line. I'd love to know if anyone has heard of success with other drugs against this type of cancer (is it right if I feel like I need to educate the oncologist? but for the sake of my mother I will)
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Comments

  • tom88
    tom88 Member Posts: 17
    #2
    Thank you sincerely, in
    Thank you sincerely, in advance, for your help and information
  • John23
    John23 Member Posts: 2,122 Member
    #3
    tom88 said:

    Thank you sincerely, in
    Thank you sincerely, in advance, for your help and information

    Where there is will, there is a way.
    Go here:
    http://jjco.oxfordjournals.org/

    You'll have to go further, and locate someone near you that is
    willing to try other than the mainstream solutions.

    There are also other alternatives, aside from "FDA approved"
    solutions, that may be worthwhile when customary western medicine
    abandons a patient.

    Face the statistics; understand the reality and accept it, but never,
    ever give up without trying. Many have beat the incredible odds!

    http://www.ncbi.nlm.nih.gov/


    Hoping for better health for you and family.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
    UCSD
    Hi,

    Try contacting Dr. Andrew Lowy from UCSD ( at the La Jolla location- pronounced La Hoya)San Diego, CA). The phone number for his office is: (858) 822-6243 (you may get an answering machine, but they were good about calling back pretty quickly in my experience). I know he does HIPEC, not sure about the small bowel cancer, but it certainly won't hurt to ask. I never had HIPEC done, but I know he does it. He did my liver resection a year and a half ago. It went very well & I recovered without any incident or problems at all. I would recommend him to anyone- he also has a very nice bedside manner and spent over an hour with me at two different appointments going over things, answering questions, etc.
    As I said before, it can't hurt to check it out.

    Best wishes to you,
    Lisa
  • cyndi2324
    cyndi2324 Member Posts: 72
    #5
    I'm sorry to here about your
    I'm sorry to here about your mother. I don't know how things work in Canada, but can you get a second opinion from another surgeon and oncologist? Can she have a colostomy done so she isn't blocked? I don't know about HIPEC sorry. Do you have any Medical research or teaching hospitals near you? If so check what they offer in services for her.
    There is a man that comes to the start center where I'm in Clinical trials He is from Canada. He flies in with his wife they stay a few days he gets treatment and he takes some back to Canada with him. Right now it sounds like your mom is too weak to do that. I'm sorry your Doctors aren't helping you. Some Doctors you have to really push. I fired my first surgeon, he was an arrogant butt.
    God Bless you and your family,
    Cyndi
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #6
    Tom
    I know nothing about small intestines/ cancer BUT a friend at church was dx'd with 'carcinoid metastatic' tumors in his small intestines. He wasn't given much hope. Now, 8 years later, he just deals with anythng new that pops up. He looks wonderful and lives a super active life. He's late 60's now.

    Diane
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #7
    Hi Tom,I am sorry for all
    Hi Tom,

    I am sorry for all that you are dealing with. Sorry, I don't have the answers you need. Where do you live in Canada? I am also in Canada, living in the Toronto area.
  • Taryn
    Taryn Member Posts: 5
    #8
    seeking info on small bowel
    Hey Tom,
    My brothers, sisters and I are just sitting around our family home searching for options on the computer as we are going through exactly what you are going through with our mother. She unfortunately was diagnosed in May this year with secondary ovarian cancer and they are still unable to locate the primary. First started in Jan Feb with some unusual abdominal cramping. After a few different wrong diagnoses from to IBS to scerosis of the liver, she was told in the end it was cancer. After 2 different types of chemo; iv and then pill form and every test and side effect possible, poor mom was just told yesterday to get her affairs in order, there appears to be a small bowel obstruction. Surgery is just not possible and you have a very short time left.

    We are not saying that we are not willing to accept the inevitable, but we have to exhaust all avenues before we throw in the towel, even mom wants to try. Amazingly she has not given up hope after all she has been through and being sick so long. We live around Regina, Saskatchewan and have heard and found on internet that St Margarets hospital in Toronto handles rare and complicated surgeries, but you have to get a referral. We will be checking into this on Monday, but just thought you may want to check that out. Where do u live in canada? If anyone else is aware of any success stories related to bowl obstructions please share them
    Thanks
    The Klyne Family
  • sfmarie
    sfmarie Member Posts: 602
    #9
    HIPEC
    I hope that Jenhopesandprays will see this post and respond regarding HIPEC. She has alot of information on it and has actually had the procedure done. I also recall another Canadian whose wife had the procedure and is doing fantastic. I hope he responds to your post. You can also search HIPEC on the search of this site and see what comes up.
    I read that small bowel is very rare. Check out http://www.mayoclinic.org/small-bowel-cancer/clintrials.html.
    My prayers to you and your family.
  • tom88
    tom88 Member Posts: 17
    #10
    Taryn said:

    seeking info on small bowel
    Hey Tom,
    My brothers, sisters and I are just sitting around our family home searching for options on the computer as we are going through exactly what you are going through with our mother. She unfortunately was diagnosed in May this year with secondary ovarian cancer and they are still unable to locate the primary. First started in Jan Feb with some unusual abdominal cramping. After a few different wrong diagnoses from to IBS to scerosis of the liver, she was told in the end it was cancer. After 2 different types of chemo; iv and then pill form and every test and side effect possible, poor mom was just told yesterday to get her affairs in order, there appears to be a small bowel obstruction. Surgery is just not possible and you have a very short time left.

    We are not saying that we are not willing to accept the inevitable, but we have to exhaust all avenues before we throw in the towel, even mom wants to try. Amazingly she has not given up hope after all she has been through and being sick so long. We live around Regina, Saskatchewan and have heard and found on internet that St Margarets hospital in Toronto handles rare and complicated surgeries, but you have to get a referral. We will be checking into this on Monday, but just thought you may want to check that out. Where do u live in canada? If anyone else is aware of any success stories related to bowl obstructions please share them
    Thanks
    The Klyne Family

    Thanks so much to everyone
    Thanks so much to everyone who has replied in such short time, the time I spent in the hospital. I live in the Vancouver area, I'm a first year medical student and have access to a lot of resources. I find it extremely frustrating that my knowledge is too shallow to be of use in this case. I would bring up something that I either learned or found, and the doctor would find a way to turn it down or go around it. I'm asking for a second opinion from surgical oncology on Monday to see if there's someone who's willing to more aggressively resect the blocked areas. Taryn I feel for you, can your mother eat? I think that's the main stressor right now; all treatment options require the patient to be able to feed and regain strength. I found that Dr. Wally Temple in Calgary does HIPEC for carcinomatosis, I'll probably call him tomorrow. I will definitely look into St. margarets in Toronto and the other resources provided by the generous posters. This board is so inspirational, thank you from the bottom of my heart.
  • tom88
    tom88 Member Posts: 17
    #11
    lisa42 said:

    UCSD
    Hi,

    Try contacting Dr. Andrew Lowy from UCSD ( at the La Jolla location- pronounced La Hoya)San Diego, CA). The phone number for his office is: (858) 822-6243 (you may get an answering machine, but they were good about calling back pretty quickly in my experience). I know he does HIPEC, not sure about the small bowel cancer, but it certainly won't hurt to ask. I never had HIPEC done, but I know he does it. He did my liver resection a year and a half ago. It went very well & I recovered without any incident or problems at all. I would recommend him to anyone- he also has a very nice bedside manner and spent over an hour with me at two different appointments going over things, answering questions, etc.
    As I said before, it can't hurt to check it out.

    Best wishes to you,
    Lisa

    Thank you Lisa, I have
    Thank you Lisa, I have emailed him to see if small bowel cancer is something that he treats.
  • Patteee
    Patteee Member Posts: 945
    #12
    tom88 said:

    Thanks so much to everyone
    Thanks so much to everyone who has replied in such short time, the time I spent in the hospital. I live in the Vancouver area, I'm a first year medical student and have access to a lot of resources. I find it extremely frustrating that my knowledge is too shallow to be of use in this case. I would bring up something that I either learned or found, and the doctor would find a way to turn it down or go around it. I'm asking for a second opinion from surgical oncology on Monday to see if there's someone who's willing to more aggressively resect the blocked areas. Taryn I feel for you, can your mother eat? I think that's the main stressor right now; all treatment options require the patient to be able to feed and regain strength. I found that Dr. Wally Temple in Calgary does HIPEC for carcinomatosis, I'll probably call him tomorrow. I will definitely look into St. margarets in Toronto and the other resources provided by the generous posters. This board is so inspirational, thank you from the bottom of my heart.

    tom check out the thread
    tom check out the thread below titled, Stage IV met. jejunal adeno.-21 yrs old. I bumped this up for you.

    Also keep checking back, there are a few posters who might have some more info
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #13
    Princess Margaret's has a
    Princess Margaret's has a terrific reputation,as does Sunnybrook in Toronto; they are the # 5 & 6 comprehensive cancer centers in North America. I do not have personal experience @ Princess Margaret but I am being treated @ Sunnybrook & I am receiving terrific care there. They have excellent people working in the GI department. I hope you are able to find the help you need as easily and quickly as possible.
  • tom88
    tom88 Member Posts: 17
    #14
    Patteee said:

    tom check out the thread
    tom check out the thread below titled, Stage IV met. jejunal adeno.-21 yrs old. I bumped this up for you.

    Also keep checking back, there are a few posters who might have some more info

    I saw that patteee, I really
    I saw that patteee, I really appreciate that. I've read that as well. I'm constantly checking for new info. Thank you.
  • tom88
    tom88 Member Posts: 17
    #15
    AnneCan said:

    Princess Margaret's has a
    Princess Margaret's has a terrific reputation,as does Sunnybrook in Toronto; they are the # 5 & 6 comprehensive cancer centers in North America. I do not have personal experience @ Princess Margaret but I am being treated @ Sunnybrook & I am receiving terrific care there. They have excellent people working in the GI department. I hope you are able to find the help you need as easily and quickly as possible.

    I will look into both those
    I will look into both those places. I have a specific question in mind so it will help hopefully. Thank you! It's so convenient in Toronto; in Vancouver there's one centre and one centre only, so a lot fewer options.
  • Taryn
    Taryn Member Posts: 5
    #16
    tom88 said:

    Thanks so much to everyone
    Thanks so much to everyone who has replied in such short time, the time I spent in the hospital. I live in the Vancouver area, I'm a first year medical student and have access to a lot of resources. I find it extremely frustrating that my knowledge is too shallow to be of use in this case. I would bring up something that I either learned or found, and the doctor would find a way to turn it down or go around it. I'm asking for a second opinion from surgical oncology on Monday to see if there's someone who's willing to more aggressively resect the blocked areas. Taryn I feel for you, can your mother eat? I think that's the main stressor right now; all treatment options require the patient to be able to feed and regain strength. I found that Dr. Wally Temple in Calgary does HIPEC for carcinomatosis, I'll probably call him tomorrow. I will definitely look into St. margarets in Toronto and the other resources provided by the generous posters. This board is so inspirational, thank you from the bottom of my heart.

    Seeking info on small bowel
    Hey Tom,
    No my mother is not suppose to eat, she appears to be at the stage your mom is: Her bowels are obstructed, she's on NG tube and living on IV fluids. The surgeon came in and said there is no hope because surgury is just not possible, and same as yours they won't start chemo again until she improves to the point of being an 'outpatient', or gains weight Yah so if she can't eat or drink, then she just continues to get malnurished and waste away. We actually talked to the pallative doctor that came in and said " so if there is no hope and just has to basically lay here and waste away, then let her have a little joy and we got him to agree for her to eat chicken broth and jello. They are worried that she will get nauseated and throw up. Both mom and I said, So what! So she has been eating jello and broth the last couple days with no problems yet. We are calling for an appt with her oncologist tomorrow and hoping to meet with her on tuesday. They are giving her another cat scan tomorrow, for what really i am not sure, cause if there is no hope and she was told to get her affairs in order, then what are we checking for. Dont get me wrong I am glad they are doing the ct scan just so we can all see exactly where things are at. The trouble we are having is my mom told me today she thought me and my sister are giving up? But she is not and she wants us to get her back on herbal products like phytoplakten.
  • Taryn
    Taryn Member Posts: 5
    #17
    Taryn said:

    Seeking info on small bowel
    Hey Tom,
    No my mother is not suppose to eat, she appears to be at the stage your mom is: Her bowels are obstructed, she's on NG tube and living on IV fluids. The surgeon came in and said there is no hope because surgury is just not possible, and same as yours they won't start chemo again until she improves to the point of being an 'outpatient', or gains weight Yah so if she can't eat or drink, then she just continues to get malnurished and waste away. We actually talked to the pallative doctor that came in and said " so if there is no hope and just has to basically lay here and waste away, then let her have a little joy and we got him to agree for her to eat chicken broth and jello. They are worried that she will get nauseated and throw up. Both mom and I said, So what! So she has been eating jello and broth the last couple days with no problems yet. We are calling for an appt with her oncologist tomorrow and hoping to meet with her on tuesday. They are giving her another cat scan tomorrow, for what really i am not sure, cause if there is no hope and she was told to get her affairs in order, then what are we checking for. Dont get me wrong I am glad they are doing the ct scan just so we can all see exactly where things are at. The trouble we are having is my mom told me today she thought me and my sister are giving up? But she is not and she wants us to get her back on herbal products like phytoplakten.

    Seeking info on small bowel
    We have heard many stories about this product and she was taking it for awhile until her oncologist took her off everything and started good ol chemo. So I guess we will know more of where we are at in the next day or so. I am going to talk to the oncologist about the HIPECS (I am forgetting the actual terminology now) and just see what options we may have left.
    Thanks for the tips everyone....never chatted on one of these boards before..lol
    Praying for my mom
    Taryn
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #18
    tom88 said:

    I will look into both those
    I will look into both those places. I have a specific question in mind so it will help hopefully. Thank you! It's so convenient in Toronto; in Vancouver there's one centre and one centre only, so a lot fewer options.


    The cancer center @ Sunnybrook is called "The Odette" centre. Good Luck!
  • 2bhealed
    2bhealed Member Posts: 2,065 Member
    #19
    Pumping optimal Nutrition into NG tubes
    Hi there,

    Please think about pumping fresh organic veggie juices right into the NG tubes or giving it by mouth. Jello has zero nutritional aspects and is just colored flavored sugar. The fresh organic veggie juices can provide optimal nutrition in an easily assimilated way. You can bring the fresh juice in to the hospital and have the nurses pump it right into their NG tubes. I know of a family who did this--the kids brought their juicer to the hospital and took over the care of their mother and she walked out of there. What do you have to lose?

    Just a suggestion.

    peace, emily
  • tom88
    tom88 Member Posts: 17
    #20
    Taryn said:

    Seeking info on small bowel
    We have heard many stories about this product and she was taking it for awhile until her oncologist took her off everything and started good ol chemo. So I guess we will know more of where we are at in the next day or so. I am going to talk to the oncologist about the HIPECS (I am forgetting the actual terminology now) and just see what options we may have left.
    Thanks for the tips everyone....never chatted on one of these boards before..lol
    Praying for my mom
    Taryn

    Imo it's encouraging to hear
    Imo it's encouraging to hear that your mother is eating something and keeping it in. Good news is that my mother is also starting to do that today, started with some homemade soup (liquid only). If the obstruction is not complete then I'm hoping some liquids will make it through and be absorbed. What's your plan/goal right now for your mother? Are you hoping to have her gain enough strength back so she can go back onto treatment? And does the phytoplankton herb help in some way for this condition? I have contacted PMH in Toronto, they said they need referral from the doctor, so I figured either the GP or the oncologist can provide that. MD Anderson has replied to me saying that they DO treat small bowel cancer carcinomatosis, but consult would require the patient's Hx. I know that in Canada Wally Temple in Calgary does HIPEC, he hasn't replied to me yet. In the paper that was published on HIPEC by the Calgary team, they have said that the treatment significantly helps to improve survival rate. However when I brought it up with the oncologist he said he's very skeptical about it. I don't know what to make of it now. The paper is here.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2552900/
  • tom88
    tom88 Member Posts: 17
    #21
    2bhealed said:

    Pumping optimal Nutrition into NG tubes
    Hi there,

    Please think about pumping fresh organic veggie juices right into the NG tubes or giving it by mouth. Jello has zero nutritional aspects and is just colored flavored sugar. The fresh organic veggie juices can provide optimal nutrition in an easily assimilated way. You can bring the fresh juice in to the hospital and have the nurses pump it right into their NG tubes. I know of a family who did this--the kids brought their juicer to the hospital and took over the care of their mother and she walked out of there. What do you have to lose?

    Just a suggestion.

    peace, emily

    Thanks. I'll definitely try
    Thanks. I'll definitely try that. Veggies, you mean like the same stuff that V8 uses? eg celery, carrots?

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