TJM's Journey with Lymphoma, Colorectal Cancer

Patient: Colorectal (Colon) Cancer > Lymphoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 6 years ago, Male, Age: 65

  1. 1
    • TJM
    • Experience with Lymphoma, Colorectal Cancer
    over 5 years ago
    TJM's Avatar

    Cancer is back/Recurred

    Oh No

    In my 50's. I had a TEM procedure in 2008. No big deal. Was not offered Chemo or radiation. Not told of the high recurrence rate 20% and most show up in 1st 3 years. Follow up was for 1 and 1/2 years. !st 6 mo signoid. 2nd 6 mo colonoscopy and 3rd 6 mo another sigmoid. Margins clean as of July 2010. In June 2011 I suddenly felt pain on left side that wouldn't go away and intensified on deep breaths. Went to hospital. Misdiagnosed as cardiac and had full workup including heart catheter. Discharged. Began having gastro symptoms before discharge that rapidly became worse until I began suffering excruciating rectal pain that totally disabled me 2 weeks later. Another week and I was back in the hospital with a massive blood clot in my left neck and rectal pain so bad i thought I was goig to die. So did the Doctors. Good news was that the blood clot didn't give me a stroke and they could treat it. Bad news was they had to scope me and pathology analysis showed the cancer had returned and matasticized in lymph nodes up to my aorta...stage 4. Probably wouldn't leave the hospital. However, i did survive and I'm on the protocol for advanced rectal cancer. * cycles of chemo...done! On to radiation and surgery consisting of lower anterior resection. The Doctors however, are stumped with the pathway of the spread...have never seen it before going this way. It is contained in the lymph nodes and not affecting other organs. But, radiating the 10-20 lymph nodes n the upper abdomen has risks and surgically addressing them is not an option. I'm going for a 2nd opinion at Dana Farber. I'm hoping someone has seen this pathway spread and so treatment /outcome can be more predictable than it is now.

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  2. 2
    • TJM
    • Experience with Lymphoma, Colorectal Cancer
    over 5 years ago
    TJM's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I had the protocol of folfox and the 5fu infusion to take home for 48hours. During the hurricane in New England, I was forced to go to the hospital because the drug was not available to the infusion companies due to shortage...side effects were minimal compare to others, but most prominent was the cold sensitivity and neuropathy...brutal the first week especially in jaw and then not so much. By the end of the 8 cycles, it was constant. Mostly in hands and feet by then. I'm almost 3 weeks out from last treatment before radiation & Chemo pill and still have neuropathy. Some say it never goes away completely.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • TJM
    • Experience with Lymphoma, Colorectal Cancer
    over 5 years ago
    TJM's Avatar

    Decision Point

    Finished chemo and ready to begin radiation. Team Doctors not sure of what to do. Spread path for recurrent rectal cancer has chosen a route that they have not seen before. instead of the typical pelvis, liver and lungs, it has traveled into the lymph nodes up to the aorta where it was/is contained. No other organs affected, or so it appears. Haven't had PET scan yet, but have had multiple ct scans and MRI. Chemo was very successful, shrinking all lymph nodes to normal...yet, they still may harbor cancer cells and surgery is not an option due to risks. Time for 2nd opinion. Sought 2nd opinion at Dana Farber. Basically agreed with plan my medical team designed for me with 2 exceptions. They do not recommend radiating the upper abdomen lymph nodes because there is too much risk to other organs and not enough confidence that the cancer was/still is there or if it was ever there. 2nd exception is that the surgical component was recommended to be far more radical than that proposed by my surgeon. To me, it all pivoted on the evidence of caner spread into the lymphnodes and so I insisted on a PET scan before deciding what team to follow. My surgeon recommended a colonoscopy 1st in an effort to tag the tumor so it would be findable after radiation. To all our surprise, the tumor was no longer there. It had melted away, so the old scar was tagged. A PET scan followed and it was negative for cancer anywhere in my body. The Chemo had done its job! I was now confident to follow my medical teams plan.

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  4. 4
    • TJM
    • Experience with Lymphoma, Colorectal Cancer
    over 5 years ago
    TJM's Avatar

    External radiation

    Radiation

    Began radiation 3 days ago with Xeloda chemo pill. Plan is 5 1/2 weeks. So far, so good. Very tired after treatment but otherwise no side effects yet. After 11 days the side effects hit like a ton of bricks. Bowel incontinence on Christmas Day...what a joy. Not only diarreah but tenesmus and severe pain in the rectum. Trying to manage with immodium but then constipation sets in. It's like the radiation replicated all the symptoms at diagnosis. The pain is disabling. 7 more to go. The Doc stopped the Xeloda because it was probably exacerbating the problems. He said radiation would be a breeze after Chemo...not so. much worse in my book.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • TJM
    • Experience with Lymphoma, Colorectal Cancer
    over 5 years ago
    TJM's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Took 3,000 mg Xeloda with radiation to pelvic region. At first not bad. Suddenly after day11 side effects kicked in. Severe diarreah and cramping. followed the folllowing week by constipation then tenesmus and spasms. Oncologist first reduced then took me off the Xeloda during radiation, I have very sensitive to the effects of radiation now and have significant pain in rectal area in and outside constantly. Inability to walk, sit or even sleep. only 8 days left and I;m counting down,

    Easy to Do: Neutral/NA
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • TJM
    • Experience with Lymphoma, Colorectal Cancer
    over 5 years ago
    TJM's Avatar

    Oh No

    This person has yet to add any details about this experience.

    2 Comments