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Seeking urgent information on small bowel cancer

tom88
Posts: 17
Joined: Nov 2009

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)

tom88
Posts: 17
Joined: Nov 2009

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

John23's picture
John23
Posts: 2140
Joined: Jan 2007

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's picture
lisa42
Posts: 3661
Joined: Jul 2008

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

tom88
Posts: 17
Joined: Nov 2009

Thank you Lisa, I have emailed him to see if small bowel cancer is something that he treats.

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

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's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

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
Posts: 3692
Joined: Oct 2009

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
Posts: 5
Joined: Nov 2009

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

tom88
Posts: 17
Joined: Nov 2009

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.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

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

tom88
Posts: 17
Joined: Nov 2009

I saw that patteee, I really appreciate that. I've read that as well. I'm constantly checking for new info. Thank you.

Taryn
Posts: 5
Joined: Nov 2009

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
Posts: 5
Joined: Nov 2009

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

tom88
Posts: 17
Joined: Nov 2009

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
Posts: 17
Joined: Nov 2009

Also wondering, is she feeling very bloated from the obstruction? If so, they might try octreide, which is a somatostatin analogue that reduces bowel secretion. The palliative doctor said that if the secretions have reduced then it can be used to replace the NG tube, which I'm sure will make her feel a lot better.

Taryn
Posts: 5
Joined: Nov 2009

Hey Tom, It has been an exhausting last week as I am sure you must understand yourself. We had the catscan on monday and they discovered that they made a small mistake and it is just a partial blocked bowel (but there is few) not completely blocked...nice hey? Mom also had a normal bowel movement to prove that she can eat so now she is at least on a liquid diet with a little more flavor. Mom is fighting very hard and telling her surgeon that keeps coming in every day and telling her she has to prepare to die, that no actually she is not quite ready yet. We had a one hour meeting with her oncologist Dr Rayson who is absolutely an amazing women. She has assisted so much in giving us all such great hope and focus to help my mom. She basically lives by the golden rule, Pat is you want to fight this thing, then visualize it and beat it. It has to come from within mom, and she has to believe. Mom is not ready to die and she is adement that she will keep fighting. Dr Rayson, along with my brothers sisters and dad have agreed that chemo is not the answer, surgeon at this time is not an option (she is just too weak to sustain right now) so we have to maintain as much positive thought and prayer as we can, and look at some of these alternative options. Bottomline is we have to shrink those tumors so we are starting her on phytoplankton, and graviola. Google these names and you will see what they are all about. We have heard many personal success stories and are going to give it a whirl. Yes we need her to start eating and gaining enough strength so she possibly could look at surgery if this is necessary. We discussed going to CGY to Wally Temple, our dr said she would give referral. Your question about phytoplankton herb is it helps to shrink the tumors. Also crazy enought tonight, I stumbled across the effects of breast milk aids in killing cancer cells. Unusal yes, but something we are considering also. I happen to have a 6 mth old baby that just may have to share with Gramma. Google it also, you may find interesting. Someone also emailed me tonight about Chaga mushrooms are a great alternative approach?? Something to consider. Well I am exhausted so off to bed, just wanted to update you on whats been happening last couple days.

Taryn
Posts: 5
Joined: Nov 2009

Mom is also on the octreide...they drained off about 4.5L yesterday off her abdomen which was huge relief. They are hopping that may get the bowels moving also. One last thing is happened to develop a touch of pnemonia today, so she is being treated for that also...what a day...talk soon

tom88
Posts: 17
Joined: Nov 2009

Hi Taryn,

It has been stressful this whole time. My mother is tolerating liquids only, any solids and she can't get it past the stomach. I think just gotta take it slow one day at a time, but I think liquids are already wonderful considering how many helpful tips I've gotten on this board with regards to healthy juices. Is your mother's pneumonia resolved? I think the main issue is prolonged hospital stay will invariably lead to some sort of nosocomial infection (definitely not something we need at the moment), so has the doctor said anything about sending your mother home? If she can take all the meds by mouth, and she's stable, then maybe she'll recover better at home. Just a thought, something to bring up with the doctor. Obviously if the doctor believes she's not well enough to be discharged then she'll have to stay.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

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.

AnneCan
Posts: 3692
Joined: Oct 2009

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
Posts: 17
Joined: Nov 2009

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.

AnneCan
Posts: 3692
Joined: Oct 2009

The cancer center @ Sunnybrook is called "The Odette" centre. Good Luck!

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

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
Posts: 17
Joined: Nov 2009

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

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Yes, veggies like in V8 but do NOT pump V8 into her tube! :-) FRESHLY juiced vegetables are so full of nutrition and cancer fighting elements. Jello has ZERO cancer fighting elements. Seriously, hospital "nutrition" can just about kill us.

www.discountjuicers.com is a good place to start looking for a juicer. I have a Champion Juicer after giving away my JuiceMan Juicer when I was diagnosed with Stage III colon cancer.

The Omega is a good one too.

Here's a good one to start with:

4-5 juicing carrots (as opposed to table carrots--they're bigger and uglier)
1 apple
cabbage wedge
kale leaf
handful parsley
small chunk ginger
romaine lettuce
1/4 beet (excellent for liver support/blood cleansing)

Hope this helps and stay away from the V8 for cancer healing--it's NOT the same thing! :-)

peace, emily the juice chick

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I just started juicing last week, and my bloodwork for my chemo today was awesome. Usually my Hemoglobin is alittle low, and maybe my potassium, but they were where they should have been this week!! yay!!

Hugsss!
~Donna

tom88
Posts: 17
Joined: Nov 2009

My mother has come off the NG tube and all other tubes for that matter because she doesn't need them anymore =) She's moving her bowels little by little, and is able to take in some fluids by mouth. I think now's a good time to try these juice.

tom88
Posts: 17
Joined: Nov 2009

Thanks a lot! That's a great recipe right there, I'll try that first. I agree, hospital food is crap. How do you get your protein and lipids?

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Tom,

When I was juicing to cure/heal I put protein powder in my juice along with ground flax seed (organic). I also put green powder in my juice. I have tried just about everything my coop carried, ie Kyo-Green, Barleans Greens, Green Magma etc etc. Then I settled on just wheat grass powder since I could buy it in bulk so it was cheaper that way.

This is what you want to remember: GREEN = LIFE

(and yes, I'm shouting that! haha)

And that doesn't mean lime jello. HA!

The more green you can go the better.

But back to the protein and fats issue, veggies actually have protein (think cows eating grass). I ate a vegan macro diet during my detoxing phase and whenever I ate salad or steamed veggies I made sure to drizzle some flax oil (Barleans) on them. Flax oil has cancer fighting properties as well. I ate brown rice, millet, etc which has protein. I also took Vit D, and fish oil supplements daily. When I stopped being vegan I ate fresh WILD Alaskan salmon (NOT farm raised).

But honestly, I didn't worry so much about the protein aspect of nutrition at the time, I was more concerned with cancer fighting veggies and enzymes and alkalizing my system.

Hope this helps.

peace, emily

tom88
Posts: 17
Joined: Nov 2009

After all the posts I've received since the beginning of this ordeal, I want to say I'm sincerely grateful for all the help and support from this board. My mum left us last night. The stories from you guys helped her stay strong and full of hope in these past four weeks. She was happy and peaceful. Thank you.

Tom

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

((hugs))
I am sorry Tom :(

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

So Sorry to hear about this Tom, how sad, right around the holidays as well :(

I don't believe people ever lose their battle to cancer when they die, I believe they won it when they become angels in Heaven, I mean how's that losing? She's in a better place, where there is no more pain and suffering, and kept her dignity as well, I know you'll miss her alot, but keep those good memories, and hold onto them forever, because though sonme made their way down "Forgotten" street, some are still there, to make more and new memories :)

Remember, she doesn't have pain and cancer anymore, just her ole self again, and sooner then you know it, you'll all be a family once again :)

Your family will be in my prayers!!
Hugsss!
~Donna

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

So sorry to hear of your Mum's passing.

Rob; in Vancouver

AnneCan
Posts: 3692
Joined: Oct 2009

I am truly sorry for your loss. Thanks for letting us know. Take good care of yourself.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Tom, I am so sorry to hear of your mother's passing. What a wonderful son you have been working to see that she had what she needed. I will remember you in my prayers. Praying that your mom is at peace.

Aloha,
Kathleen

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