burkit like lymphoma

abdiaziz1h
abdiaziz1h Member Posts: 3
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi my name is abdi I am 32 years old. I have been diagnosed with burkit like lymphoma @ mayo clinic rochester mn. I was told I would need 4 months of intense chemo as an inpatient.  I was wondering if anyone had this particular lymphoma and treatment.  Am worried.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,818 Member
    #2
    chemo

    _Welcome to our discussion board. While your lymphoma is an uncommon strain I do recall members discussing it in the past, and hopefully one of them will respond soon. What tends to be very routine are the chemo drugs that are given for most lymphoms.  Write back with the drug names, and very likrly a lot of folks will have been treated with it in the past.  The most common NHL treatments are (each letter stands for a different drug in the combination) CHOP, EPOCH, and rituxan, either with those other drugs, or somtimes by itself.  Most of those are usually administered in an outpatient clinic, however, so you might be scheduled for something a little less common. There are numerous other drug possibilities.  Respond with what you are scheduled to receive, and members can go from there in describing what the drugs are commonly like.  max

  • abdiaziz1h
    abdiaziz1h Member Posts: 3
    #3
    Max Former Hodgkins Stage 3 said:

    chemo

    _Welcome to our discussion board. While your lymphoma is an uncommon strain I do recall members discussing it in the past, and hopefully one of them will respond soon. What tends to be very routine are the chemo drugs that are given for most lymphoms.  Write back with the drug names, and very likrly a lot of folks will have been treated with it in the past.  The most common NHL treatments are (each letter stands for a different drug in the combination) CHOP, EPOCH, and rituxan, either with those other drugs, or somtimes by itself.  Most of those are usually administered in an outpatient clinic, however, so you might be scheduled for something a little less common. There are numerous other drug possibilities.  Respond with what you are scheduled to receive, and members can go from there in describing what the drugs are commonly like.  max

    burkit like lymphoma

    Thanks max. Here is the drug name.  Codox m/ivac. I have heard mayo clinic is world class hospital and I have no other health issues but am just worried about the intensity of this drug and the unknown.  Thanks

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,818 Member
    #4
    abdiaziz1h said:

    burkit like lymphoma

    Thanks max. Here is the drug name.  Codox m/ivac. I have heard mayo clinic is world class hospital and I have no other health issues but am just worried about the intensity of this drug and the unknown.  Thanks

    Abid,I went to a chemo drug

    Abid,

    I went to a chemo drug site that I reference a lot, and the following link shows the closest match.  Doctors are allowed to mix and match these drugs to tailor them to specific, rare cancers that might not have a "standard" selection. This is a COMMON and NECESSARY practice.  Athough the site lists MVAC as "usually given for bladder cancer," do not let that throw you off. All of the component drugs are regulars for NHL (non-Hodgkin's lymphoma).

    I suspect that the "i" drug that has been added to be Ifosfamide, a very strong anti-lymphoma drug that is part of the "ICE" combo, which is usually given pre-stem cell transplant.

    There is a small chance that your "m-ivac" is something other (different) than what I have forwarded, so ask your oncologist directly if these are in fact the correct drugs.

    You are correct that the Mayo Clinic is among the very best in the world, and they will know exactly what they are doing.

    I suspect that this is a very harsh regimin, and you mentioned that the clinic told you that anyway.  Plus, inpatient chemo usually is reserved for cases that are expected to indeed be harsh.  While I have no experience with this combo, I have received two of the drugs in it, Vinblastine and the "A" drug. 

    I would reasonably guess that you can expect severe tiredness, weakness, loss of appetite (probably with weight loss), and  a variety of other things. The Vinblastine routinely causes neuropathy (numbness in the hands and/or feet).  A temporary condition called "chemo fog," in which it is difficult to concentrate or remember things is fairly common in chemotherapy, and the Ifosfamide especially mentions this.  Chemo fog nearly always clears over time after treatment ends, and varies a lot in severity. I had a fairly severe case of it myself.   But, you have the best facility in the world there to address and moderate any and all side-effects.

    You can use the link provided to research all of these drugs individually.

    Wishing you a speedy recovery ! Know that lymphoma is ordinarily one of the most treatable of all cancers.

    max

    http://chemocare.com/chemotherapy/acronyms/mvac.aspx#.VCG_t-ktC70

    http://chemocare.com/chemotherapy/drug-info/ifosfamide.aspx#.VCHDzOktC70

     

    .

  • abdiaziz1h
    abdiaziz1h Member Posts: 3
    #5
    Max Former Hodgkins Stage 3 said:

    Abid,I went to a chemo drug

    Abid,

    I went to a chemo drug site that I reference a lot, and the following link shows the closest match.  Doctors are allowed to mix and match these drugs to tailor them to specific, rare cancers that might not have a "standard" selection. This is a COMMON and NECESSARY practice.  Athough the site lists MVAC as "usually given for bladder cancer," do not let that throw you off. All of the component drugs are regulars for NHL (non-Hodgkin's lymphoma).

    I suspect that the "i" drug that has been added to be Ifosfamide, a very strong anti-lymphoma drug that is part of the "ICE" combo, which is usually given pre-stem cell transplant.

    There is a small chance that your "m-ivac" is something other (different) than what I have forwarded, so ask your oncologist directly if these are in fact the correct drugs.

    You are correct that the Mayo Clinic is among the very best in the world, and they will know exactly what they are doing.

    I suspect that this is a very harsh regimin, and you mentioned that the clinic told you that anyway.  Plus, inpatient chemo usually is reserved for cases that are expected to indeed be harsh.  While I have no experience with this combo, I have received two of the drugs in it, Vinblastine and the "A" drug. 

    I would reasonably guess that you can expect severe tiredness, weakness, loss of appetite (probably with weight loss), and  a variety of other things. The Vinblastine routinely causes neuropathy (numbness in the hands and/or feet).  A temporary condition called "chemo fog," in which it is difficult to concentrate or remember things is fairly common in chemotherapy, and the Ifosfamide especially mentions this.  Chemo fog nearly always clears over time after treatment ends, and varies a lot in severity. I had a fairly severe case of it myself.   But, you have the best facility in the world there to address and moderate any and all side-effects.

    You can use the link provided to research all of these drugs individually.

    Wishing you a speedy recovery ! Know that lymphoma is ordinarily one of the most treatable of all cancers.

    max

    http://chemocare.com/chemotherapy/acronyms/mvac.aspx#.VCG_t-ktC70

    http://chemocare.com/chemotherapy/drug-info/ifosfamide.aspx#.VCHDzOktC70

     

    .

    burkit like lymphoma

    Thanks.  Just checked my final pathology. Double hit lymphoma. Myc/in fusion 100% nuclei.  Bcl2 gene rearrangement 100% nuclei.  Thanks for the links. 

  • jimwins
    jimwins Member Posts: 2,107
    #6
    Welcome Abdi

    I wanted to welcome you to the group.  Max has covered the bases regarding your treatment.   Please feel free to come here to chat, share, vent or believe it or not, get a laugh or two :).

    I wish you the best.  Hugs,

    Jim

  • Jonathan M
    Jonathan M Member Posts: 1
    #7
    abdiaziz1h said:

    burkit like lymphoma

    Thanks.  Just checked my final pathology. Double hit lymphoma. Myc/in fusion 100% nuclei.  Bcl2 gene rearrangement 100% nuclei.  Thanks for the links. 

    Burkitts

    Hey abdi. I was diagnosed with Burkitts lymphoma in July of 2005. I was told I had a 30% survival rate with the stage that it was in, stage 4. But obviously from me writing to you, im a survivor. I thank Yahshua (Jesus). But in June of 2006 my Doc told me that there wasn't anymore cancer cells anywhere. The tumor in my bone marrow was gone. I did have an Omaha reservoir put under my scalp in which it still remains. My neuro surgeon said that it might do more harm than good with removing it. ehhh, Im ok with that right now. 

       But yeah, that's my story. Feel free to contact me with any questions. 

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