Non Hodgkin Lymphoma

Bogieg
Bogieg Member Posts: 4

Hello everyone, 

Recently diagnosed with lymphoma non Hodgkin cutaneous B cell , I am waiting for the PET scan results Oct. the 13th . I am also requesting a second opinion at Mayo Clinic. First symptom was a skin tissue that my dermatologist sent to biopsy. I don't have symptoms blood work normal . Just wondering if somone else is going through the same experience  as me . Hope to gain valuble insight on this forum . Thank you 

Comments

  • po18guy
    po18guy Member Posts: 1,406 Member
    Sorry to hear this

    Good on your dermatologist! Cutaneous B-Cell lymphoma is a rare presentation of the most common form of lymphoma. Virtually all (90% or more) of cutaneous lymphomas are the T-Cell variety, which tend to be much more difficult to treat. While 'rare' sounds ominous, the 'most common' portion of the description also means that it is the best known variety with the most effective treatments. Your plan sounds excellent. Since cutaneous forms tend to be indolent, you have the great advantage of time: time to decide on a plan, time for second opinions and time for new and more effective treatments to appear. The PET should determine if it is contained within your skin. 

    I'm a T-Cell guy, so I am more familiar with how T-Cell Lymphomas act, even though both of mine were systemic rather than cutaneous. Now, this may not be the case, but cutaneous T-Cell Lymphoma is a chronic condition that is survivable but not curable. That may not be the case with B-Cell Cutaneous Lymphoma.

    Here is a link to the Lymphoma Research Foundation's information sheet on Cutaneous B-Cell Lymphoma. I hope that it helps and please keep us updated on your progress!

    https://lymphoma.org/aboutlymphoma/nhl/cbcl/cbcltreatment/

  • Bogieg
    Bogieg Member Posts: 4
    po18guy said:

    Sorry to hear this

    Good on your dermatologist! Cutaneous B-Cell lymphoma is a rare presentation of the most common form of lymphoma. Virtually all (90% or more) of cutaneous lymphomas are the T-Cell variety, which tend to be much more difficult to treat. While 'rare' sounds ominous, the 'most common' portion of the description also means that it is the best known variety with the most effective treatments. Your plan sounds excellent. Since cutaneous forms tend to be indolent, you have the great advantage of time: time to decide on a plan, time for second opinions and time for new and more effective treatments to appear. The PET should determine if it is contained within your skin. 

    I'm a T-Cell guy, so I am more familiar with how T-Cell Lymphomas act, even though both of mine were systemic rather than cutaneous. Now, this may not be the case, but cutaneous T-Cell Lymphoma is a chronic condition that is survivable but not curable. That may not be the case with B-Cell Cutaneous Lymphoma.

    Here is a link to the Lymphoma Research Foundation's information sheet on Cutaneous B-Cell Lymphoma. I hope that it helps and please keep us updated on your progress!

    https://lymphoma.org/aboutlymphoma/nhl/cbcl/cbcltreatment/

    Thank you I really appreciate

    Thank you I really appreciate it. As I said I am new to this so you can imagine the things that goes in my mind . I don't think it really sink into me yet ( cancer ) . I will update my status when I will find out what stage I am in . Once again thank you . 

  • po18guy
    po18guy Member Posts: 1,406 Member
    edited October 2021 #4
    Lymphoma is different

    It is not staged like other cancers, i.e. solid tumor cancers, but generally, cutaneous lymphoma tends to remain in the skin. There are several subtypes of cutaneous B-Cell Lymphoma, and while each may present and behave somewhat differently, they tend to remain slow growing and located in the skin. This is an advantage in that it reveals its presence by being on the outside of the body. They can often be placed into remission, but relapse is also fairly common. In one sense, it can be like any of the various viruses we carry that re-appear from time to time.  Here is a better link, as it goes directly to the information page:

    https://lymphoma.org/wp-content/uploads/2021/04/LRF-CBCL_Factsheet.pdf

  • Bogieg
    Bogieg Member Posts: 4
    edited October 2021 #5
    po18guy said:

    Lymphoma is different

    It is not staged like other cancers, i.e. solid tumor cancers, but generally, cutaneous lymphoma tends to remain in the skin. There are several subtypes of cutaneous B-Cell Lymphoma, and while each may present and behave somewhat differently, they tend to remain slow growing and located in the skin. This is an advantage in that it reveals its presence by being on the outside of the body. They can often be placed into remission, but relapse is also fairly common. In one sense, it can be like any of the various viruses we carry that re-appear from time to time.  Here is a better link, as it goes directly to the information page:

    https://lymphoma.org/wp-content/uploads/2021/04/LRF-CBCL_Factsheet.pdf

    Thank you 

    Thank you 

  • aivankovic
    aivankovic Member Posts: 1
    edited October 2021 #6
    I was also diagnosed B cell cutaneous non- hodg lymphma

    Hi there, first of all I am so sorry to hear of the diagnosis. I received my diagnosis August 17th of B cell marginal zone cutaneous non-hodkin lymphoma. I had my PET scan and most was clear with the exception of a few VERY small lymphnodes which were biopsied last week and they believe the lymphnodes could be inflamed due to the COVID 19 vaccine. In addition my hematologist (I am seeing a dermatologist and hematologist) and they had me do bone marrow as well (not a fun experience- but I highly recommend you leave nothing to chance). I get those results tomorrow. 

    What I do know is that this is a slow growing cancer if it is contained to the skin. My blood work has looked good with slight signs of anemia. It is important to note that there is a very odd bacteria known as H. Pylori- it can cause something called "malt lymphoma" which can present itself through the skin as lymphoma- this is a side effect of a bacteria within the intestinal tract. This may be worth asking your team about if they think this could be a cause of your specific cancer. I am currently awaiting those results myself. 

    I guess I just want you to know others do go through this and at 27 years of age I did not expect to be here- however I pray your PET scan is clear and the GOOD news is that cutaneous lymphomas generally present favorable prognosis outcomes!

     

    Best of luck to you!!

  • Bogieg
    Bogieg Member Posts: 4
    Well i hâd my petscan done .

    Well I had my petscan done . I don't have lymphonodes but the SUV metabolic reading was 6.5 liver  and 8.7 spleen and 4.4 bone . So my doctor couldnt diagnoste me for sure therefore he order a bone marrow biopsy which I am going to do next Tuesday. I did recover from COVID few months ago . I don't know if that has anything to do with my readings ( pet scan) but I hope those patches on my liver , I hope they are benign. The reading is not high enough to stage my lymphoma correctly. But if it's in the bone marrow I jump to stage 4 . I don't have any symptoms and my blood work is normal . Don't worry about yours . At your age 27 you can survive almost anything. Good luck and keep in touch. 

  • po18guy
    po18guy Member Posts: 1,406 Member
    edited October 2021 #8
    The liver always glows

    And is used by some as a control for SUV readings elsewhere in the body. All PET does is measure metabolism. The brain, liver and other organs, in which theere is much activity, can show some fairly good SUVs in the normal course of business. The spleen? Well, now that's something else. You're not anemic, right? But, none of those numbers strike me as anything to be overly concerned about. It may indeed be confined to your skin, which nealry always indicates an indolent lymphoma, whether T or B Cell type. Can you consult with a cutaneous lymphoma specialist? Lymphoma is different from other cancers, with curaneous lymphoma being different from systemic lymphomas. A speciaist would be an excellent idea, as I see it.