Elizabeth's Journey with Enteropathy Type T-Cell Lymphoma

Patient: Non-Hodgkin Lymphoma (NHL) > T-Cell Lymphoma > Peripheral T-Cell Lymphoma > Enteropathy Type T-Cell Lymphoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 6 years ago, Female, Age: 27

  1. 1
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Unknown GI illness

    Other Care

    My story started in 2004 when I was a freshmen in HS. I started to experience nausea, vomiting, and pain. The following year I got worse and was rushed to Wolfsons Childrens Hospital. 8 years later my illness is still unknown!

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  2. 2
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Surgery

    Procedure or Surgery

    On December 10th I had Surgery to take out an obstruction and obtain biopsies to check for Cancer. The last time I had this surgery I was unable to move for what seemed like 2 weeks because the pain was so bad. This time I was able to leave the hospital six days later, I guess the epidural really helped.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Diagnosed

    Oh No

    In July 2011 I had a double Balloon endoscapy where they found an abnormal T-Cell. Surgery was scheduled for October 10th. On October 21 I received the news that I had Cancer.

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  4. 4
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    November 3rd I had a port put in. It was supposed to be placed on November 4th but my veins are a tough stick. I was suppose to have a CT done at 9:00 am but I didn't get it done till noon because they had to use an Ultra Sound to get an IV in. This is why they decided to place the port in early, they did not want to pull the IV out and struggle to get it back in the next day.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  5. 5
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    bone marrow biopsy

    Procedure or Surgery

    A bone marrow biopsy was taken to stage my cancer! Based on how people were talking I expected to be in a wheel chair when they were done. No pain killers were given to me but I handled it well! The biopsy did not hurt a bit!

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  6. 6
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    On November 4th I started CHOP treatment. So far I have experienced minimal side effects. The monday after Chemo I had a sore throat for about 3 days, it felt like I could not swallow anything. Thank goodness for soups and squash (I like buttercup)! Yesterday however my whole body ached I didn't know if it was the Chemo or the weather, its alot better today so I am happy!

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  7. 7
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Diagnosed

    Oh No

    I got the bone marrow biopsy back today and its good news! The cancer did not spread to my bone or the bone marrow. That means I am Stage 3 T Cell Lymphoma enteropathy. Although I wasn't worried about it being stage 4 it is still a big relief to know that it hasn't spread further. That will make my survival rate much better.

    1 Comment
  8. 8
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Fatigue (tiredness)

    Side Effects

    I am feeling tiered today! My head is also aching this may be because I did not get a good night sleep but I am sure that it will pass. On Friday my blood work came back and my red blood cells were a little low 10.5! Still that's alot better then it has been in the past. I also have low Potassium and Calcium but that is nothing new.

    0 Comments
  9. 9
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    Aww. In one week I went from having perfect white blood cell counts to being low in white blood cell counts. What does that mean for me? Mask! I really dislike them they are hot, itchy, and fog up my reading glasses! As long as I stay in my room and away from people I don't have to wear it, but this also means no Salads for me!!

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  10. 10
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Decision Point

    Yesterday the doctor told me that I need to have a Stem Cell transplant at the end of my Chemo regimen. I was told that was my best chance I have to prolong my life, then she handed me a book to read about it. I've gotten through half of the book and I must say its a bit scary and overwhelming. Yesterday was the first time I have felt overwhelmed at my medical history. I'm still going to go through with it... I guess all that i need is time to process this information.

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  11. 11
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    Friday November 25, 2011 I will be having a picc line put in. I already have a port but the doctor thinks it would be best to have a picc as well. I didn't know that people could have both a port and a picc. I always thought it was either or! Good thing I know how to take care of it! UPDATE: I found out that I have a clot on my right arm so they can't put a picc on that side and my vein is obstructed on the left so I can t have a picc on that side ever again. Because I needed a picc for fluids, nutrients, and medicine they decided to place a midline in and all Chemo has to go into the port! No Biggie!!! Besides if I always get upset over bad news that I can't control I would loose my mind... But NO I decide to look on the positive side, I mean I still have my age going for me.

    Went as Expected: Not Specified
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  12. 12
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I went to the hospital today to get my IVE treatments and so far I had a little nausea and fatigue but they remained minimal! I will continue having this treatment for 4 days before I get discharged. I can't wait to be done withe everything including stem cell, after this is over I plan on a celebration!

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  13. 13
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Hair loss (alopecia)

    Side Effects

    Yesterday morning I cut my hair short. Each time I took off my hat that hid the bald spot hair fell out everywhere. I was so itchy it was frustrating then finally at night I said I had enough at the Patient Care Tech shaved it off for me! I was just relieved that the itching finally stopped.

    1 Comment
  14. 14
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Fever

    Side Effects

    Wow my fever was high! When I went to the ER it was 104.7 then later on during the day the nurse told me it was 105. They moved me to the ICU (turns out there are different types of ICU I was in the one where patients can still move around without assistance) ,to get the fever down I had to wear ice packs and was given strong antibiotics. Thankfully they got it down that same day. I was conscious and aware the whole time.. My dad asked me if I remembered that day and I do. Also during that day I had to get 3 blood transfusions and 2 platelet because the counts were too low. My White blood Cell and Nutrafill counts were low too that everyone had to wear a mask and I was not allowed to leave my room. Over all it wasn't too bad and I was out in three days.

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  15. 15
    • Elizabeth
    • Experience with Enteropathy Type T-C...
    almost 6 years ago
    Elizabeth's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I am in the hospital now receiving fluids before Chemo tommorow I will be getting Methotrexate then a week later IVE. I just now realized that I will be spending Christmas receiving Chemo as an inpatient. Based off my last experience with IV I will be having bad nausea on Christ mas. O Well! The good news is that things are moving forward hopefully by March I will be done with treatment! At least I will be home for new years, I will just have to have a super special Christmas with my family next year. Happy Holidays!

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments