DLBCL 2 times re accurance (ankle swelling)

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

Hi, my husband diagnosed DLBCL stage 4 on 2014 and re accured last 2017 he got stem cell transplant on 2018 but unfortunately cancer back again on 2019 only a year of remission. now he is under treatment again. he got chemo treatment 3 times but the lmyp on his right leg doesn't clear and the doctor change the chemo drug, then lymp shrink now he got his second session but his right (ankle) leg is now bit swelling. is there any of you have the same situation? His doctor doesn't say anything about the swelling just ask my husband if he walk a lot. yeah he walk every day for exercise.

 

I am worried that the swelling is cancer cell cause it is in same foot where the tumor re accure. it look like gout but not sure. Is there someone got like this?? PLEASE HELP

 

 

 

 

Comments

  • Emiko
    Emiko Member Posts: 14
    edited April 2020 #2
    I mean his right leg ankle is

    I mean his right leg ankle is now swelling

  • PBL
    PBL Member Posts: 369 Member
    edited April 2020 #3
    Second opinion

    Hi Emiko,

    I hope I got this right: your husband is currently having his third course of treatment for recurring/relapsing DLBCL initially diagnosed in 2014. He is about halfway through the current treatment regimen, and it doesn't seem to be working at all this time.

    If so, you may want to seek a second opinion from a reputable university hospital or designated cancer center. In particular, you should ask for your husband's pathology slides (from the diagnostic biopsies from 2014, 2018 and 2019) to be checked by an expert pathologist. An error in diagnosis is always possible, and might explain the repeated failures in successive treatments.

    I hope this helps. Do let us know how things turn out.

    Best of luck to you both,

    PBL

  • Emiko
    Emiko Member Posts: 14
    edited April 2020 #4
    PBL said:

    Second opinion

    Hi Emiko,

    I hope I got this right: your husband is currently having his third course of treatment for recurring/relapsing DLBCL initially diagnosed in 2014. He is about halfway through the current treatment regimen, and it doesn't seem to be working at all this time.

    If so, you may want to seek a second opinion from a reputable university hospital or designated cancer center. In particular, you should ask for your husband's pathology slides (from the diagnostic biopsies from 2014, 2018 and 2019) to be checked by an expert pathologist. An error in diagnosis is always possible, and might explain the repeated failures in successive treatments.

    I hope this helps. Do let us know how things turn out.

    Best of luck to you both,

    PBL

    Thank you for the advised. I

    Thank you for the advised. I talked to my husband about the second opinion but he said he don't want to go to other prefecture, he said here in Japan they do the same procedure on treament. I don't know..

    I am hopeless... There are 3 onocologist taking care of his treatment and I don't trust one of them who always say he just try what treatment is availble but he know it will not work. I told him that what we are here for?? and I told them that we will take what ever is in the table. I heared about the T-cell and open up that treatment to the doctor, they said is not yet available in Japan.. SAD..

    Thank you PBL san

     

  • PBL
    PBL Member Posts: 369 Member
    #5
    Emiko-san,

    Emiko-san,

    I am sorry I am really not familiar with the Japanese administrative and health-care systems to give you precise indications on how to proceed. Perhaps it might be possible, without having to actually move to a different prefecture, to require the pathology slides to be reviewed (it is standard in some countries to have two different pathologists review every patient's slides - while in other countries, it is not) all over again by a different pathologist. 

    You may also want to ask that oncologist who says nothing will work to explain in layman's terms what exactly makes your husband's disease so stubborn - and why he feels that nothing will work against it.

    One further way to try and shake your husband's oncologists into seeking appropriate solutions might be to raise the possibility that he isn't suffering from DLBCL, but rather from a totally different type of lymphoma, such as T-cell lymphoma (I am not talking about CAR-T-cell therapy here, but about a group of lymphomas that originate from a different type of cell called T cells, as opposed to B cells in DLBCL and many other lymphoma types). Those types of lymphoma are notoriously tricky to treat, and are not approached with the same treatments as B cell lymphomas.

    I can see that you are really eager to help your husband find the effective treatment for his disease, and I would encourage you to speak up and make it clear to all involved that you will not just sit there and wait it out.

    I hope you find a way to move things forward for your husband and yourself. Do let us know how things go.

    PBL

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited April 2020 #6
    Emiko said:

    Thank you for the advised. I

    Thank you for the advised. I talked to my husband about the second opinion but he said he don't want to go to other prefecture, he said here in Japan they do the same procedure on treament. I don't know..

    I am hopeless... There are 3 onocologist taking care of his treatment and I don't trust one of them who always say he just try what treatment is availble but he know it will not work. I told him that what we are here for?? and I told them that we will take what ever is in the table. I heared about the T-cell and open up that treatment to the doctor, they said is not yet available in Japan.. SAD..

    Thank you PBL san

     

    Gout

    Emiko, I have recurring gout in the feet.  It can cause large sweeling, redness, and even be hot to the touch.   Lymphoma seldom or never does most of these things, and certainly not together, at once.  Also, large lymphoma involvement below the knee is very, very uncommon, but possible.  I agree that your relative needs to see a better doctor, if your medical system will allow.

  • Emiko
    Emiko Member Posts: 14
    edited April 2020 #7
    Max Former Hodgkins Stage 3 said:

    Gout

    Emiko, I have recurring gout in the feet.  It can cause large sweeling, redness, and even be hot to the touch.   Lymphoma seldom or never does most of these things, and certainly not together, at once.  Also, large lymphoma involvement below the knee is very, very uncommon, but possible.  I agree that your relative needs to see a better doctor, if your medical system will allow.

    Hi, Thanks for information

    Hi, Thanks for information

    Husband feet is still swelling and it goes up to lower leg. there is no discolaration at this time and it's dented after being pressed.He lift his leg when sleeping and sit on reclining. looks like it works.

    hopefully it will not get bigger before his next hospital appointment. Sadly we are having a long holiday here in Japan starting on May1 till 7th. We can't go to the hospital unless for emergency.

    Also my husband lymphoma is on his lower right leg and it shrink already now he still have 2 more chemo session left.

    Will keep inform later..

    Thank you Max san

     

  • Emiko
    Emiko Member Posts: 14
    edited April 2020 #8
    PBL said:

    Emiko-san,

    Emiko-san,

    I am sorry I am really not familiar with the Japanese administrative and health-care systems to give you precise indications on how to proceed. Perhaps it might be possible, without having to actually move to a different prefecture, to require the pathology slides to be reviewed (it is standard in some countries to have two different pathologists review every patient's slides - while in other countries, it is not) all over again by a different pathologist. 

    You may also want to ask that oncologist who says nothing will work to explain in layman's terms what exactly makes your husband's disease so stubborn - and why he feels that nothing will work against it.

    One further way to try and shake your husband's oncologists into seeking appropriate solutions might be to raise the possibility that he isn't suffering from DLBCL, but rather from a totally different type of lymphoma, such as T-cell lymphoma (I am not talking about CAR-T-cell therapy here, but about a group of lymphomas that originate from a different type of cell called T cells, as opposed to B cells in DLBCL and many other lymphoma types). Those types of lymphoma are notoriously tricky to treat, and are not approached with the same treatments as B cell lymphomas.

    I can see that you are really eager to help your husband find the effective treatment for his disease, and I would encourage you to speak up and make it clear to all involved that you will not just sit there and wait it out.

    I hope you find a way to move things forward for your husband and yourself. Do let us know how things go.

    PBL

    PBL san

    PBL san

    I will try to search by myself this pathology result. Now I learned self advocate is really important.

    Emiko

  • winthefight
    winthefight Member Posts: 162
    #9
    Emiko said:

    PBL san

    PBL san

    I will try to search by myself this pathology result. Now I learned self advocate is really important.

    Emiko

    Your update?

    Hi there, I know I am late to this thread.  How is your husband doing?  I've had swelling around my ankle for years.  Mine was not edema, but perhaps you could look into a lymphedema clinic to access the swelling.

     

  • winthefight
    winthefight Member Posts: 162
    edited May 2020 #10
    Emiko said:

    PBL san

    PBL san

    I will try to search by myself this pathology result. Now I learned self advocate is really important.

    Emiko

    Your update?

    Hi there, I know I am late to this thread.  How is your husband doing?  I've had swelling around my ankle for years.  Mine was not edema, but perhaps you could look into a lymphedema clinic to access the swelling.

     

  • Emiko
    Emiko Member Posts: 14
    edited August 2020 #11
    winthefight said:

    Your update?

    Hi there, I know I am late to this thread.  How is your husband doing?  I've had swelling around my ankle for years.  Mine was not edema, but perhaps you could look into a lymphedema clinic to access the swelling.

     

    update

    His leg swell due of losing muscles when he stayed on the hospital. That's the doctor said. hope it is....@ sorry for late reply I can't log cause i forgot my password.

  • po18guy
    po18guy Member Posts: 1,509 Member
    #12
    Swelling is common

    But it is most likely just fluids and not cancer. I had to wear compression socks and sleep with feet elevated to allow the fluid to drain. Both of my ankles and feet were horribly swollen, but it all resolved once treatment was done. 

  • Emiko
    Emiko Member Posts: 14
    edited August 2020 #13
    po18guy said:

    Swelling is common

    But it is most likely just fluids and not cancer. I had to wear compression socks and sleep with feet elevated to allow the fluid to drain. Both of my ankles and feet were horribly swollen, but it all resolved once treatment was done. 

    po18guy

    po18guy

    The doctor said he needs to do an exercise to bring back the muscle again. He walk his dog everyday and do chores in our house but maybe it will take time to get normal.I was freaking scared everyday when saw his leg because his cancer relapse on his leg, it shrink already and finish the treatment. He got 4 times EPOCH chemo after the first 3 times Chemo doesn't work. Is true that you can not get a full 6 times EPOCH if you have 3 chemo that doesn't work? Honestly I always here in discusssion board because it helps me a lot and people here is very helpfull and give me a strength when reading discussion from many member here. Thank you po18guy. 

    Anybody here got the same situation?

  • po18guy
    po18guy Member Posts: 1,509 Member
    #14
    A few things to consider

    1. Exercise is excellent - the more that he can do, the better. Also, lots of liquids to drink.

    2. Treatment (chemo) either works or it does not. If it is not effective immediately, giving more will only weaken him while allowing the cancer to grow. Not good. There are other options available in treatment. Bendamustine + Rituxan (B-R) has shown itself to be quite effective. There is also a regimen called TREC (Bendamustine, Rituxan, Etoposide, Carboplatin) that might be considered, as well as others which doctor should know about.

    3. If you can, research the cancer that you may know about it - knowing the enemy as in a war. Never give up, as there is always hope.    

  • Emiko
    Emiko Member Posts: 14
    #15
    appreciated

    Thank you so much!!

    I will ask the doctor if TREC is available to use here in Japan, hope they still have a treatment for my husband. The last we talked to his doctor he will give him an oral chemo, that's what I am affraid of, cause he take an oral chemo last year before his IV chemo and it doesn't work to him. He got his PET SCAN last August 24 and the doctor will see the result on September 10 but we found the lump on his leg again this morning. He just finished his treatment (EPOCH) last June 24 only 2 months.. I throw up everyday I am so stressed..

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