have questions looking for advise

midnight22
midnight22 Member Posts: 17
in Lymphoma (Hodgkin and Non-Hodgkin) #1
a friend of mine was diagnosed at 21 years old with stage 3 non-hodgkin lymphoma. she was diagnosed over the summer, and began taking the chemo pill. the chemo pill was not working so she began taking shots at home. since then there is now a tumor on her spine and her lymphnodes are affected. This week she will be going to the hospital to get massive amounts of chemo injected into her. I am not familiar will the medical terms for these treatments,but i feel that if she is in stage 3 cancer she should be operated on proir to this treatment. I dont want to speak out of turn to her about medical treatment options but i do not feel that this may be the best one. Please give me any feedback, options, or stories that can help me put my worries at ease. thanks

Comments

  • Pappa Don
    Pappa Don Member Posts: 39
    #2
    Surgery or not
    Hi Midnight 22 :
    I saw your request for help online but I really do not know what to offer. I had Stage 3 large Celled Non-Hodgkins Lymphoma.
    My tumor was on my Colon so different from your friend. That is one of the problems giving advice. Our cases are all different.Different Cancers different treatments.
    I had hard core Chemo and all kinds of other meds.
    I could not tell you if surgery is helpful to your friend or not.
    If you have any questions about that to her doctor and they are not being answered or addressed I would certainly
    Advise you to seek a second opinion and not feel shy about doing it.
    I think that is real wise for you to get on this website and ask for help.
    I think that some patients fail to ask for help. They might think they are a bother or whatever .

    But this is all serious business. It is time to take the gloves off and fight. It is a war. And one needs to treat it as such.
    And in your mind hold hopeful thoughtS. And trust your caregivers . They are all angels. So ask for anything you want.
    They are here to serve you let them.

    PEACE be with you.
    PD
    P.S. : Sometimes it can be critical to use Chemo first to kill off or stop the cancer from growing before they do any surgery.
  • po18guy
    po18guy Member Posts: 1,508 Member
    #3
    Lymphoma is different
    Lymphoma is quite unlike other cancers. It is a blood-borne cancer and circulates in the blood and the lymph. Even though it forms tumors, they are not "solid tumors" as in other cancers. Solid tumors have their own supply system of veins and capillaries, and become pretty much a living, growing organ in the body. Lymphoma tumors are basically just clumps of individual cancer cells that have accumulated in a certain spot. Lymphoma can appear anywhere in the body, normally affecting the lymphatic system, but can also appear in the skin, the internal organs - even the eyes, brain or spinal column.

    Lymphoma, being in the blood as it is, is very treatable and often very responsive to chemotherapy. However, there are between 61-73 different lymphomas, with new varieties being discovered regularly. The stage of lymphoma is also not like the stage of other cancers. It simply describes where the disease is located. This is very simplified, but if it is only in one limited area, it is stage 1. On opposite sides of the body is stage 2. Above and below the diaphragm is stage 3. If it spreads from the lymphatic system to internal organs or the bone marrow, it is stage 4.

    Many of us have been diagnosed at stage 4 and have survived quite well. Now, in non-Hodgkin's lymphoma, there are two basic types: B-Cell and T-Cell. B-Cell is much more common and more is known about how to treat it. T-Cell Lymphomas are rare, often aggressive, and can be very difficult to treat. Some slow growing lymphomas may not be treated unless they begin to cause problems.

    Once lymphoma spreads past a localized area, it may not be operable. But, this does not mean that all is lost. It is in the blood and that is precisely where the chemotherapy is introduced. As to your friend's treatment with oral drugs, that is relatively new. Injections also. If lymphoma is treated, it is normally done by intravenous chemotherapy. The fact that she did not respond means that she might want to get a second opinion on her diagnosis as well as treatment plan. Misdiagnoses are still made, and so treatment would not be effective.

    So, it will be very helpful to know which type and sub-type of lymphoma your friend has, as they act differently and are treated differently according to their type.
  • epicc
    epicc Member Posts: 137
    #4
    po18guy said:

    Lymphoma is different
    Lymphoma is quite unlike other cancers. It is a blood-borne cancer and circulates in the blood and the lymph. Even though it forms tumors, they are not "solid tumors" as in other cancers. Solid tumors have their own supply system of veins and capillaries, and become pretty much a living, growing organ in the body. Lymphoma tumors are basically just clumps of individual cancer cells that have accumulated in a certain spot. Lymphoma can appear anywhere in the body, normally affecting the lymphatic system, but can also appear in the skin, the internal organs - even the eyes, brain or spinal column.

    Lymphoma, being in the blood as it is, is very treatable and often very responsive to chemotherapy. However, there are between 61-73 different lymphomas, with new varieties being discovered regularly. The stage of lymphoma is also not like the stage of other cancers. It simply describes where the disease is located. This is very simplified, but if it is only in one limited area, it is stage 1. On opposite sides of the body is stage 2. Above and below the diaphragm is stage 3. If it spreads from the lymphatic system to internal organs or the bone marrow, it is stage 4.

    Many of us have been diagnosed at stage 4 and have survived quite well. Now, in non-Hodgkin's lymphoma, there are two basic types: B-Cell and T-Cell. B-Cell is much more common and more is known about how to treat it. T-Cell Lymphomas are rare, often aggressive, and can be very difficult to treat. Some slow growing lymphomas may not be treated unless they begin to cause problems.

    Once lymphoma spreads past a localized area, it may not be operable. But, this does not mean that all is lost. It is in the blood and that is precisely where the chemotherapy is introduced. As to your friend's treatment with oral drugs, that is relatively new. Injections also. If lymphoma is treated, it is normally done by intravenous chemotherapy. The fact that she did not respond means that she might want to get a second opinion on her diagnosis as well as treatment plan. Misdiagnoses are still made, and so treatment would not be effective.

    So, it will be very helpful to know which type and sub-type of lymphoma your friend has, as they act differently and are treated differently according to their type.

    This was very helpful
    Po18guy

    This was very helpful. I was wondering how the stages were diagnosed. I am new to this. As I have posted before, my mom was diagnosed with intravascular lymphoma on October 22, which is in the blood and is considered a subtype of diffuse B cell. Treatment being given is Chemo RCHOP. They consider that stage 4.

    Again, thank you for your post, it was extremely helpful. Hope all is well with you.

    Emily
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    po18guy said:

    Lymphoma is different
    Lymphoma is quite unlike other cancers. It is a blood-borne cancer and circulates in the blood and the lymph. Even though it forms tumors, they are not "solid tumors" as in other cancers. Solid tumors have their own supply system of veins and capillaries, and become pretty much a living, growing organ in the body. Lymphoma tumors are basically just clumps of individual cancer cells that have accumulated in a certain spot. Lymphoma can appear anywhere in the body, normally affecting the lymphatic system, but can also appear in the skin, the internal organs - even the eyes, brain or spinal column.

    Lymphoma, being in the blood as it is, is very treatable and often very responsive to chemotherapy. However, there are between 61-73 different lymphomas, with new varieties being discovered regularly. The stage of lymphoma is also not like the stage of other cancers. It simply describes where the disease is located. This is very simplified, but if it is only in one limited area, it is stage 1. On opposite sides of the body is stage 2. Above and below the diaphragm is stage 3. If it spreads from the lymphatic system to internal organs or the bone marrow, it is stage 4.

    Many of us have been diagnosed at stage 4 and have survived quite well. Now, in non-Hodgkin's lymphoma, there are two basic types: B-Cell and T-Cell. B-Cell is much more common and more is known about how to treat it. T-Cell Lymphomas are rare, often aggressive, and can be very difficult to treat. Some slow growing lymphomas may not be treated unless they begin to cause problems.

    Once lymphoma spreads past a localized area, it may not be operable. But, this does not mean that all is lost. It is in the blood and that is precisely where the chemotherapy is introduced. As to your friend's treatment with oral drugs, that is relatively new. Injections also. If lymphoma is treated, it is normally done by intravenous chemotherapy. The fact that she did not respond means that she might want to get a second opinion on her diagnosis as well as treatment plan. Misdiagnoses are still made, and so treatment would not be effective.

    So, it will be very helpful to know which type and sub-type of lymphoma your friend has, as they act differently and are treated differently according to their type.

    Thank You !!!
    Po,
    Thanks for the post. It makes a lot of things more clear for us. I know when I first heard the words Cancer and stage 4 I didn't know what to do. The first thing to go thru the mind is ,It's Over. The web pages are not any help at all.As a matter of fact it made things more confusing and gloomy. John
  • Unknown
    Unknown
    #6
    Pappa Don said:

    Surgery or not
    Hi Midnight 22 :
    I saw your request for help online but I really do not know what to offer. I had Stage 3 large Celled Non-Hodgkins Lymphoma.
    My tumor was on my Colon so different from your friend. That is one of the problems giving advice. Our cases are all different.Different Cancers different treatments.
    I had hard core Chemo and all kinds of other meds.
    I could not tell you if surgery is helpful to your friend or not.
    If you have any questions about that to her doctor and they are not being answered or addressed I would certainly
    Advise you to seek a second opinion and not feel shy about doing it.
    I think that is real wise for you to get on this website and ask for help.
    I think that some patients fail to ask for help. They might think they are a bother or whatever .

    But this is all serious business. It is time to take the gloves off and fight. It is a war. And one needs to treat it as such.
    And in your mind hold hopeful thoughtS. And trust your caregivers . They are all angels. So ask for anything you want.
    They are here to serve you let them.

    PEACE be with you.
    PD
    P.S. : Sometimes it can be critical to use Chemo first to kill off or stop the cancer from growing before they do any surgery.

    Surgery
    I had surgery to remove an enlarged node near my aorta. I would not recommend it to anyone else for NHFL. Drugs can do the job for follicular just as good as surgery. There's always the chance of complications with any kind of surgery. I nearly died from mine and took months to recover. Hope this helps in some small way.
  • po18guy
    po18guy Member Posts: 1,508 Member
    #7
    unknown said:

    Surgery
    I had surgery to remove an enlarged node near my aorta. I would not recommend it to anyone else for NHFL. Drugs can do the job for follicular just as good as surgery. There's always the chance of complications with any kind of surgery. I nearly died from mine and took months to recover. Hope this helps in some small way.

    Avoid the knife if at all possible
    Absolutely correct. Unless the tumor is causing immediate harm, I would think that it is best to begin treatment first. So many lymphomas respond rapidly to treatment that the tumor(s) may very well recede quickly, making surgery unnecessary. As well, every surgery causes some damage along with any healing that it may bring.
  • po18guy
    po18guy Member Posts: 1,508 Member
    #8
    unknown said:

    Surgery
    I had surgery to remove an enlarged node near my aorta. I would not recommend it to anyone else for NHFL. Drugs can do the job for follicular just as good as surgery. There's always the chance of complications with any kind of surgery. I nearly died from mine and took months to recover. Hope this helps in some small way.

    Avoid the knife if at all possible
    Very well said. Unless the tumor is causing immediate harm, I would think that it is best to begin treatment first. So many lymphomas respond rapidly to treatment that the tumor(s) may very well recede quickly, making surgery unnecessary. As well, every surgery causes some damage along with any healing that it may bring.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #9
    Surgery

    Midnight 22,

    Lymphoma is seldom operated on, except for the removal of a biopsy specimen, or in extraordinary circumstances.  As everyone noted here, it is counterindicated almost always. Stage 4 lymphoma most commonly involves the bone marrow, and that too is usually inoperable, unless stem cell transplantation is proposed. Leukemia is often similiar.  The type of chemo will be determined by the exact strain of NHL that she has (there are over 30 common strains of lymphoma).  Most treatments are a form of "combination therapy," in which a standard coctail of three or more chemo drugs are administered according to standardized schedules.  If you learn what combination she is going to receive, many people here will be able to give much more specific information.

    I wish her and you both well,

     

    max

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