DLBCL lump in Leg

Emiko
Emiko Member Posts: 14
edited September 2020 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hello !!

I just want to know if anybody here got the same type of DLBCL in leg. Hoping to get some tips or get information about the treatment of this kind of leg lymphoma.

also if anybody here got the CART  T Cell therapy for DLBCL. Thank you in advance.

Emiko

Comments

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #2
    Good question

    CAR-T was a hot topic for a while then just kinda vanished from this board. I too would love to hear reports from people who actually had that therapy and how it turned out for them.

  • po18guy
    po18guy Member Posts: 1,509 Member
    #3
    An unusual presentation

    But the good news in the bad is that DLBCL remains the most common form of lymphoma and treatment is well settled and generally very effective. Generally, the treatment would be the same as for the lymphoma in any other body part, unless it has invaded the bone or gone into the central nervous system. It is frequently reported that, as soon as Rituxan or Rituxan plus Bendamustine hits the tumor, they just seem to melt away. If your DLBCL is "double hit" or "triple hit" it can be more of a challenge, but is still very treatable. Have you discussed treatment options with doctor? Have you considered a second opinion? 

  • Emiko
    Emiko Member Posts: 14
    #4
    we will talk to his doctor on

    we will talk to his doctor on 10th September and bring up the TREC and Rituxan if we can get any of these.

    He got R-CHOP on his first diagnose after 2 years relapse in his knee. That time he got CHASE then SCT but after 1 year (2019 July) he got relapse again on leg then this time he got another type of drug that I dont know what it is he got 3 times of that but doesn't work. Then the doctor gave hin EPOCH 4 times that shrink his lump on his leg. after 4 times the treatment ends (last June 26 2020) unfurtunately he got a lump again on the same place which he notice last week. The last we talked to his doctor said most of strong drug used already and didn't have stronger than those drug. I will ask the doctor what kind of B Cell DBCL he got. 
    i research that the T CART cell therapy is available this summer here in Japan that is why I am looking for some feed back on anybody who got the T CART.

     I also heard that we can use the government health insurance on T CART therapy. May be this will be a big chance for my husband.

    But will bring up those TREC and Rituxan on his doctor 

    thank you so much 

  • Emiko
    Emiko Member Posts: 14
    edited September 2020 #5
    ShadyGuy said:

    Good question

    CAR-T was a hot topic for a while then just kinda vanished from this board. I too would love to hear reports from people who actually had that therapy and how it turned out for them.

    Wish someone will give us a

    Wish someone will give us a feed back on CART-T. They said it only for the patients in 3rd line. My husband is in 4th alreadyFrown

  • po18guy
    po18guy Member Posts: 1,509 Member
    #6
    Emiko said:

    we will talk to his doctor on

    we will talk to his doctor on 10th September and bring up the TREC and Rituxan if we can get any of these.

    He got R-CHOP on his first diagnose after 2 years relapse in his knee. That time he got CHASE then SCT but after 1 year (2019 July) he got relapse again on leg then this time he got another type of drug that I dont know what it is he got 3 times of that but doesn't work. Then the doctor gave hin EPOCH 4 times that shrink his lump on his leg. after 4 times the treatment ends (last June 26 2020) unfurtunately he got a lump again on the same place which he notice last week. The last we talked to his doctor said most of strong drug used already and didn't have stronger than those drug. I will ask the doctor what kind of B Cell DBCL he got. 
    i research that the T CART cell therapy is available this summer here in Japan that is why I am looking for some feed back on anybody who got the T CART.

     I also heard that we can use the government health insurance on T CART therapy. May be this will be a big chance for my husband.

    But will bring up those TREC and Rituxan on his doctor 

    thank you so much 

    Bendamustine + Rituxan

    As to this combination, it seems that the two drugs display a synergistic effect when used together. They work better in combination than either drug does when used alone. Did your husband have an autologous transplant, or allogeneic? If it was autologous, he can still have an allogeneic if the doctors believe he is healthy enough to receive it. But, it is crucial to get him into remission before transplant.

    Take heart! It was my 5th salvage regimen (after eight drugs during primary therapy) which placed me in remission for transplant.

  • Emiko
    Emiko Member Posts: 14
    edited September 2020 #7
    po18guy said:

    Bendamustine + Rituxan

    As to this combination, it seems that the two drugs display a synergistic effect when used together. They work better in combination than either drug does when used alone. Did your husband have an autologous transplant, or allogeneic? If it was autologous, he can still have an allogeneic if the doctors believe he is healthy enough to receive it. But, it is crucial to get him into remission before transplant.

    Take heart! It was my 5th salvage regimen (after eight drugs during primary therapy) which placed me in remission for transplant.

    Good to hear you are in remission!!

    Hello po18guy,

    I open up the drugs that you mention but he told us that he don't think it will work cause the drugs that he use to my husband looks like did not work. He made us hopeless but he said he will ready the new treatment (Chemo) if ever relapse happen. Yes my husband got Autologous transplant. also I opened up about the allogeneic he said he will not recommend it cause of my husband health condition. He always had a low blood during chemo therapy and always got transfusion. I also talked about the T CELL Therapy he also sai he will not recommend cause the effectiveness is too low of chance. On this I am not trust what he said becauce been only 3 months when  CART T CELL therapy use here in Japan how can he say that?

    I will not stop searching about this new CART T Therapy, I am not sure if this therapy is good for him but if there is a chance we will grab it!!

    Thank you po18guy san. Hoping you always well as all the member of this group.

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