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  • Stage IV, Dukes D....... just diagnosed

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    Old 10-08-2004, 02:30 PM   #1
    mbt
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    Stage IV, Dukes D....... just diagnosed

    My 49 yo brother was in the hospital for about 10 days with intermittent stomach cramping and diahrrea. Had a boat load of tests.... x-rays, 3 cat scans and nothing was definitive. On Tues 928/04 they decided to do an exploratory surgery, thinking maybe it was IBS, Crohn's, anitbiotic colitis from supposed UTI, diverticulitis, colitis or possible appendicitis that wasn't presenting itself in the traditional manner.

    The surgeon cmae out and told us (my mother and I) that he had "never seen anything like this"........ "this is about as bad as it gets" ......it was metastatic (sp) stage 4, dukes d, colon cancer. I still cannot believe it....... seems like a nightmare. He had a colonoscopy that was supposedly normal on April 16, 2004. How fast do these things grow? His UTI was actually a large growth that was like a rock that was blocking his uterer. The surgeon shaved it down to help the flow of things but they're keepng a watch on his right kidney. The tumor originated in the cecum and burst sending nodules everywhere........ too numerous to count.

    The drs have told us obviously that the prognosis is not good......... he'll start chemo on Wed 10/13/04. I'm not sure exactly what they're hoping for, or if it's just for palliative purposes. They're using FU-5 and Avastatin.

    To make matters worse he was downsized from an IT company about 18 mos ago and his cobra runs out 11/16/04. I talked to my insurance agent and I believe I've gotten him into the IL CHIPS program.

    He also had a 16" resection of his ascending colon. He still has terrible diahrrea and no appetite. The surgeon said it could be becasue there are so many nodules that the colon isn't as pliable as a helathy colon. He has lost about 30 lbs. Will the chemo give him more diahrrea? I've been trying to encourage him to try the brat diet....... bananas, rice, apple sauce and toast. The dr suggested a low residue diet......... but at this point I'm telling him to eat anything that appeals to him, just so he can regain his strength. Are milkshakes OK? For as much as he talked about food fantasies while in the hospital nothing appeals to him now and he doesn't have an appetite.

    With the diahrrea how do you know what's the cancer, the chemo or the resection?

    Anyone have anything similar going on..............
    any advice, encouragment, insight would be grealty appreciated.

    God Bless Everyone on Their Journey.......
    XO-

     
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    Old 10-08-2004, 06:32 PM   #2
    hoping4best
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    Re: Stage IV, Dukes D....... just diagnosed

    Unfortunately, I have no advise to give, but I just wanted to say welcome, and sorry to hear about it....he'll be in my thoughts! There are some very knowledgable people on here that should offer some good advise...

    Good Luck

     
    Old 10-08-2004, 08:42 PM   #3
    delrae4753
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    Re: Stage IV, Dukes D....... just diagnosed

    i am so sorry to hear of ths for your brother,

    i can understand what you are going through my brother had a colonoscopy on tues he had been having bright red blood from the rectum well they found a 8 cm mass and 2 more tumors against the large colon they had him scheduled for surgery fri today then yesterday they ran a cat scan of the abdomen; it came back with a spot on the liver;to make matters worse they cancelled his surgery today for the tumor removal and resection to run a mri for the liver, now what is next they still have to do the surgery hopefully they will do surgery on monday, his last paycheck was today there is no more money for him, he will most likely not be able to return to work for a while he looks at facing loosing everything, and he thought he was having symptoms of ibs... he is 57
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    Old 10-08-2004, 09:03 PM   #4
    Jacklyn
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    Re: Stage IV, Dukes D....... just diagnosed

    At age 43, I took my husband to ER for "bending over" with stomach pain. We arrived at 5:00. After waiting and having a series of tests, a surgeon told me that it was his appendix and they were taking him into surgery at midnight to have it removed. At 3 in the morning, the surgeon came out with the SHOCKING NEWS of Stage 4 Colon Cancer. The tumor was inoperable. He fought it for 2 years with constant chemo. The cancer went to his brain and he had radiation. He passed away 10 months ago. But I just want to say that ANYTHING is possible. A person can never give up and always have the hope of being healed because that is what keeps you going. That, and your faith and trust in God.

     
    Old 10-08-2004, 09:54 PM   #5
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    Re: Stage IV, Dukes D....... just diagnosed

    I could very well be wrong about this but I am given to believe that almost everytime colon cancer starts in the colon usually from a polyp BUT that sometimes it starts on the outside surface of the colon. In that case a colonoscopy will not pick it up. A CT scan might, a PET scan would have an even better chance of showing it.

    Furthermore if the tumour is on the lower part of the ascending colon this is the same place as the appendix and once a tumour is in later stages and causes pain it mimics appendicitis. (Terrible pain and tenderness on the right below the navel)

    After my sugery I did not have an appetite but once I started eating I found that I actually was hungry. However, although I have always been a great fan of soups it was weeks before I could even stand looking at or smelling soup. It just struck me as hot salty water. 3 years on now and everything is back to normal.

    mbt, yes the chemo will cause some diareha. It is not possible to distinquish what is causing any particular bout of it. Dehydration and loss of electrolytes have to be kept at bay. Over the counter sports drinks and fortified drinks like Boost or Ensure work best for this. Soups are good too. Symptoms of dehydration are, dizziness, tiredness, loss of energy and of course a reduction in urination.

    Ileostomates find that a few marshmellows firm up loose stools. He could try that and the sugar calories will certainly not hurt.

    Chemo also plays hell with taste. A lot of things tasted metallic to me, especially liquids and water the most. I found that orange or grape flavoured drinks were the best tasting. I also found oranges good. I had no problem with milkshakes and actually a chocolate milkshake was the only thing I can say I had a craving for.

    During chemo injections try sucking on ice or if ice tastes bad, a flavoured popsicle. This reduces the chances of mouth sores.

    I wish I had more to offer. Feel free to post on the board even if all you want to do is vent. Everyone here has been affected by colon cancer either directly or because someone they love had it. We have gained understanding about it the hard way and will empathize with you.

    My heart is with you.

     
    Old 10-09-2004, 05:53 PM   #6
    dianne12315
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    Re: Stage IV, Dukes D....... just diagnosed

    I am so sorry to hear of your brother's diagnosis. It breaks my heart everytime I hear of someone being diagnosed with Colon Cancer. Ten years ago I lost my older brother to it. He was diagnosed with Stage 4 Colon Cancer with Metasis to the Liver. 13 months after his diagnosis he passed away. He had just turned 43 yrs old. I belong to this group with Yahoo for people with colon cancer and it's encouraging to see that with all new medicines and clinical trials that are available people with Stage 4 Colon Cancer are living longer. There is a lot of information in this group from people who are going through it and the medications they are on.

    I remember when my brother was so sick and didn't want to eat I would buy him the strawberry Ensure, strawberry ice cream and mix them together to make a milk shake for him. I also added crushed ice. It's hard with the chemo because it changes the taste of the food. They want to eat but after tasting it they don't want it. I would let him whatever he wanted. What's it going to hurt?

    I wish I could be of more help to you and to everyone on the board but I can't so the next best thing I can do is keep you all in my thoughts and prayers.

    Dianne

     
    Old 10-10-2004, 04:57 AM   #7
    ktee_uk
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    Re: Stage IV, Dukes D....... just diagnosed

    Hello...... I am sorry to hear of your borthers troubles. It is a terrible ordeal and traumatic for those who have to stand by and watch.



    [QUOTE=mbt]
    The surgeon cmae out and told us (my mother and I) that he had "never seen anything like this"........ "this is about as bad as it gets" ......it was metastatic (sp) stage 4, dukes d, colon cancer. I still cannot believe it....... seems like a nightmare.


    Please don't be despondant about the staging of this desease. There are lots of survivors on this site..... my husband included (age 44 at diagnosis stage 4 mets to liver).

    [QUOTE=mbt]He had a colonoscopy that was supposedly normal on April 16, 2004. How fast do these things grow? His UTI was actually a large growth that was like a rock that was blocking his uterer. The surgeon shaved it down to help the flow of things but they're keepng a watch on his right kidney. The tumor originated in the cecum and burst sending nodules everywhere........ too numerous to count.

    Unfortunately colonoscopies are not foolproof. I snagged a section of review from a colon cancer screening update site as follows .................

    "While Colonoscopy with appropriate biopsy and polypectomy is the current gold standard for CRC screening, it is important to review its shortcomings. The bowel cleanout procedure is somewhat difficult for many patients but is critical to the accuracy of the exam. Oral iron, aspirin, Coumadin and other anticoagulants, and NSAIDS must be withheld for a week before the exam. The procedure to reaches the cecum in more that 95% of patients, though in one series physicians failed to reach the cecum in 15% of cases. The reported miss rate for polyps varies with the size of the polyp. For example, for those less than 5 mm, the miss rate can be as high as 16-27%; for 6-9 mm polyps, 12-13% will be missed; and for those greater than 10mm, the miss rate is 0-6%. Complications of colonoscopy are unusual but can include perforation (0.14 0.25%), bleeding (0.7 2.5%), and death (less than 0.02%). "



    [QUOTE=mbt]The drs have told us obviously that the prognosis is not good......... he'll start chemo on Wed 10/13/04. I'm not sure exactly what they're hoping for, or if it's just for palliative purposes. They're using FU-5 and Avastatin.

    I cannot believe how negative his doctors are sounding. I know they have to give you best and worse case scenarios but he is a young man and should be given every opportunity to survive this. Avastin is not yet licenced in the UK but trials are ongoing and I have read positive reports regarding its use in prolonging life and beating the stats for chemo only. When my husband started his treatment (surgeries and chemo) we knew that it would at least give him extra time and in a perfect world might even cure him. Its been 6 months since he stopped treatment which had lasted over 12 months and he is so far clear.
    Make sure you ask the doctors about the drugs they are giving him and why they have chosen these particular ones. Also ask what other treatment options are available. we have found that you do need to challenge the doctors to make them work hard for you.


    Regarding the diet thing ................ its difficult to strike a balance between the drugs they give you to stop sickness which makes you constipated so you then need drugs to help you go. On top of that the resection knocks hell out of your functions and it takes a while for things to work properly. Make sure he drinks plenty of fluids and encourage him to eat small savoury meals and top up with shakes and stuff.

    Good luck
    Ktee

     
    Old 10-11-2004, 11:49 AM   #8
    Btrcup
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    Cool Re: Stage IV, Dukes D....... just diagnosed

    Hi MBT, sorry to hear about your brother's dx. I am also new here. My husband, age 42, was dx in Feb. 2004 with Stage IV. He had 10 in. of both large and small intestines removed. It had metastasized to omentum and 13 out of 21 lymph nodes tested positive. He started his chemo Apr. 1 and just completed his 6 mos. a few weeks ago. He was on Avastin, Oxiliaplatin, Leukovorin & 48 hr 5FU infusion. At his scans in July, he was "no evidence of disease." Aside from diarrhea and neuropathy in his hands and feet, he tolerated the chemo pretty well.

    Is your brother having a port put in? It does make the chemo much better to receive. Hubby is having his removed this week, due to bacteria which caused an infection. Other than this, there really have been no complications.

    We will keep your family in our prayers. Stay strong.

    Linda (Baltimore)

     
    Old 10-11-2004, 02:32 PM   #9
    mbt
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    Re: Stage IV, Dukes D....... just diagnosed

    Thanks to everyone for their advice, guidance and support. To those of you who are still struggling, I'm praying and pulling for you. To those of you who have suffered a loss........ I am so sorry and I'm praying for you. To those of you who are beating this........ thank you for the hope.

    My brother had a port put in and will start on the 48 hr 5FU infusion and Avastin on Wednesday. I'm going with him to talk to the oncologist and the chemo coordinator. We hope to get some more info then............ when we first spoke to surgeon and oncologist I think we were in shock. It's had a few weeks now to sink in.

    Thanks again for everything..........
    Mary Beth

     
    Old 10-16-2004, 07:15 PM   #10
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    Re: Stage IV, Dukes D....... just diagnosed

    Prayers are with you and your family. Miracles can happen and do.

     
    Old 10-20-2004, 04:01 PM   #11
    Dale30
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    Re: Stage IV, Dukes D....... just diagnosed

    I'm praying for your brother Mary Beth! God bless your brother and your family!

     
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