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gene cell rearangement

    • 6 posts
    August 31, 2014 11:18:35 AM PDT

    my intestional biopsies came back with a positive t cell gene rearrangment. My Dr says lets just wait and see. In 2009 i had chemo for t cell lymphoma. So should i just wait and see or what

    • Moderator
    • 1957 posts
    August 31, 2014 12:32:34 PM PDT

    Greetings  C,

     

    Thank you kindly for your question.

     

    -

    Greetings P,

     

    Legal disclaimer:  we do not have a doctor- relationship and we cannot give specific instructions of care to you, but we can give you our best effort to find high quality information that you can consider. If we are wrong, or you don't like what we say, feel free to leave a message and let us know how we can improve  quality of service.In addition, we encourage other people in the community to contribute their knowledge to the questions that are asked. 

    For example, if you have a rare disease, and had a rare surgery, please simply state "back surgery," and if needed we can explore that further.  If your neighbor or best friend reads this, will be they be able to identify you based on the information given? If yes, please remove the information or change it slightly. 

    BAD example:  I live in Boston, Dr. Patel at MGH hospital diagnosed me with a schwannoma tumor last month, then I traveled to Tokyo and taught english for a year.  

    Acceptable example: I live in the United States, I had a tumor & surgery, then I traveled abroad for work.

    ---

    1. Do you know what kind of t-cell lymphoma you had in 2009? Did it have T-cell gene rearrangement? 

    2. Did the report specify what type of Gene cells were rearranged? 

     

    3. Do you have the actual pathology report. It may say which genes specifically were rearranged. 

     

    4. Where was your tumor found at in 2009.

     

    5. Why did you have the biopsies? was it because you turned 50 and needed to undergo screening or was it because you had colon surgery in the past? 

     

    6. Were these biopsies from the duodenum or from the colon? 

     

    7. What was the name of the procedure that was performed prior to diagnosing this? 

     

    Please remember this is a public forum so if any of the questions can be used to identify you, please do not answer them. I will review the medical literature on T-cell rearrangement which I have not read in about a year, and make sure I am familiar with it. 

     

    The more information from your pathology report, the better that I can help you. See if there is a microscopic description, and what molecular tests, etc. were done. Please don't use the name of any labs, but the names of genes would probably be reasonable. 

     

    I will also crowd source this after you reply to see if any other doctors around the world have any further suggestions or ideas.

     

    I look forward to hearing from you.

    Kind regards,

    -BrettMD

    • 6 posts
    August 31, 2014 1:33:11 PM PDT

    yes it was pheriphal  t cell lymphoma with gene rearrangement. I had a balloon endoscopy. no tumor but it caused my small intestine to become thick like a donut. was from the duodenum . last ct scan showed new thickening of intestines. it was stage 4


    This post was edited by confused at August 31, 2014 1:40:18 PM PDT
    • 6 posts
    August 31, 2014 1:39:04 PM PDT

    after having chop chemo thickening went away but came back. dr. put me on methotraxate to slow it but caused liver problems. I am in constant pain on upper left side of stomach. sometimes painful to touch. I suffer from extreme fatigue.

    • Moderator
    • 1957 posts
    August 31, 2014 2:11:06 PM PDT
    Dear C,

    I am very sorry to hear that.
    When was your last appointment with your oncologist.

    You are always entitled to get a second opinion.
    If it were me I would try go to a trustable* academic medical center, meaning not UMKC, but somewhere like MDAnderson, Mass General Hospital, the Mayo Clinic, Baylor, Washington University (even though one of their surgeons is incompetent to serve on the medical board, and refuses to investigate seven months of patient harm at UMKC,), Washington University provided good cancer care to my uncle.

    So my impression is that you still have lymphoma, that it was probably causing stricture of your intestines.

    1. When is your next physician appointment?

    2. If you are not satisfied, you are welcome to get a second opinion.

    3. If you choose to get a second opinion, you need to send all of your reports, the actual x-rays, ct scans, and even the pathology specimens to your new consult.

    Please consider keeping me updated.
    Kind regards,
    -BrettMD
    This post was edited by Brett Snodgrass at August 31, 2014 2:12:07 PM PDT
    • 6 posts
    September 9, 2014 12:34:37 PM PDT

    I got my t scan results today. Some thicking of small bowel but they also found a 22 x 14 mm ill defined hypoattenuating area in the lateral segment right hepatic lobe. solid liver mass. any cause for concern/ have had constant pain in liver area worsening with consumption of alcholoic beverages

    • 6 posts
    September 9, 2014 12:38:32 PM PDT

    also biopsy results on small bowel......ycell rearrangement are positive consistent with a persistent clonal t cell population

    • Moderator
    • 1957 posts
    September 9, 2014 1:12:44 PM PDT

    Dear C, 

     

    Thank you for the update. I cannot interpret the tests for you specifically, but I can try to help you find relevant literature. 

    --

    Legal disclaimer:  we do not have a doctor- relationship and we cannot give specific instructions of care to you, but we can give you our best effort to find high quality information that you can consider. If we are wrong, or you don't like what we say, feel free to leave a message and let us know how we can improve  quality of service.In addition, we encourage other people in the community to contribute their knowledge to the questions that are asked. 

    For example, if you have a rare disease, and had a rare surgery, please simply state "back surgery," and if needed we can explore that further.  If your neighbor or best friend reads this, will be they be able to identify you based on the information given? If yes, please remove the information or change it slightly. 

    BAD example:  I live in Boston, Dr. Patel at MGH hospital diagnosed me with a schwannoma tumor last month, then I traveled to Tokyo and taught english for a year.  

    Acceptable example: I live in the United States, I had a tumor & surgery, then I traveled abroad for work.

    ----

     

    I understand that you were given the results of your imaging test today. 

     

    When they say: [persistent "clonal t-cell population,"]. In order that we may cover everything: 

    The definition of Persistent is here: 

    http://dictionary.reference.com/browse/persistent

    adjective

    i. persisting, especially in spite of opposition, obstacles,discouragement, etc.; persevering:
    a most annoyingly persistent young man.
    ii. lasting or enduring tenaciously:
    the persistent aroma of verbena; a persistent cough.
    iii.constantly repeated; continued:
    persistent noise.
    iv.Biology.  continuing or permanent.

    The "clonal t-cell population," is one that they have identified before or is persisting. The clinical significance probably is related to "when they previously found this clonal t-cell population." 
    In order to determine whether it was the original tumor, it would be prudent to compare to the previous pathology reports.

     

    Please see the following two questions

     

    1. Did anyone discuss the results of your scan with you?

    2. What does the radiology (scan) report say in the interpretation section?  

    Sometimes* doctors say things such as "this may represent,"  or "this is consistent with," and then they often say "clinical correlation is recommended."

    In regards to the following questions, Please do not be specific for privacy reasons. For example,

    1-2 days

    2-5 days 

    5-10 days

    10-30 days

    30-90 days

     

    3. When was your last meeting with your oncologist? 

    4. When is your next meeting with your oncologist?

    5. When was your last meeting with your primary care dotor?

    6. When is your next meeting with your primary care doctor? 

    4. When was your last meeting with your primary care doctor?

     

    I look forward to hearing from you.

    Kind regards,

    -BrettMD


    This post was edited by Brett Snodgrass at September 9, 2014 1:14:32 PM PDT
    • 6 posts
    September 10, 2014 10:39:09 AM PDT

    Oncologist said we would do a repeat ct in 6 months.

    impression; Interval development of somewhat ill defined vague hypoattenuating focus in the left hepatic lope. This could be relative to focal fat deposition.Depending on index of suspicion for solid liver mass,follow up with liver mri now.

    Wasnt seen on last ct one month prior.

    Saw oncologist 2-3 days ago. next appointment is 3 months from now.

    Am calling pcp today for appointment.

                                                                      Thank you


    This post was edited by confused at September 10, 2014 10:45:36 AM PDT
    • Moderator
    • 1957 posts
    September 10, 2014 2:30:22 PM PDT

    Dear C,

     

    Thank you for the reply.

     

    Questions that you may* be interested in asking your oncologist, you may want to call their office. 

     

    1. Are the findings in your intestine the same tumor-type that you had in 2009?

     

    2. Are the findings of your intestine biopsy a reactive change?

     

    3. What are a few of the reasons that there was strictures (narrowing) of the intestines on the radiographs?

     

    4. What stage is my disease... you can say, "according to the United States Joint Committee on Cancer, what tumor stage was I before." 

     

    5. What do you think my current tumor burden might be?

     

    6. Do you think that it is reasonable that I am suffering from the previous T-cell lymphoma?

     

    7. Do you think that it is reasonable that I am suffering a different malignancy or malignancies from the prior treatment. 

     

    8. Do you think that I should undergo a surgical oncology consultation for evaluation of my liver disease, why or why not? 

     

    9. Do you think that I should undergo an MRI for evaluation of my liver mass "vague hypoattenuating focus."

     

    10. If the "hypoattenuating focus in my left hepatic lobe," is focal fat deposition, why do you think it is there now? 

     

    11. Do you think that I should have any laboratory tests to evaluate my liver function, why or why not? 

     

    12. Based on studies of people with similar tumors and similar treatments, what is the mode five, 10, and 15-year prognosis?

     

    13. What did the results of my last peripheral blood smear show?

     

    14. What are my ICD9 and/or ICD10 diagnoses. 

     

    ----

    If you think that answers to the above questions may be helpful for you, then you

    may want to print this out, and/or fax the questions to your oncologist. If you do not have a fax machine, you can bring these questions to your primary care doctor's office and they can likely fax them to your oncologist.

     

    Please consider keeping me updated.

    Kind regards,

    -BrettMD