• Wolfe170's Avatar

    Wolfe170 asked a questionNon-Hodgkin Lymphoma (NHL)

    Treatment or not

    4 answers
    • Throatless' Avatar
      Throatless

      I agree with po18guy, I wouldn't like to watch and wait. If you get a second opinion from an NCI facility, then it might not be a bad idea, but I wouldn't wait without another Doctor saying so. I wish you the best and hope things move for the better.

      2 months ago
    • carm's Avatar
      carm

      @Wolfe170,
      Hello, I am an oncology nurse and I guess that I run opposite of the two prior suggestions. People are not meant to sustain chemotherapies on a long term basis. There comes a point when too much becomes too much and then you suffer the damage from the treatments which can often be irreversible. If your doctor is giving you the option of surveillance than chances are you are doing great and now is the time to let your body repair itself from the treatment you just completed. It is better to keep that bullet hot in the holster than to use it when it isn't necessary. Sometimes using a treatment when you do not need it will cause long term resistance and then if you get recurrence, you won't have that option anymore, so you remove an option off the table that you know is effective. If your cancer returns you have plenty of time to come up with a treatment plan... It just does not grow that fast. Give yourself a chance to heal and get back to life. Chemotherapy is not the norm; living is. Cancer patients have the option of remission and taking these breaks. Other illness like HIV+, auto-immune, hepatitis B, or diabetes do not. Think about it well and take a leap of faith, or continue on with therapy but know the risks that may occur from overuse. I wish you the best.

      2 months ago
    • CancerChicky's Avatar
      CancerChicky

      If I were in the same position, I would want another opinion to say that's the best thing to do, If so, then I would go with the recommendation.

      2 months ago
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  • Wolfe170's Avatar

    Wolfe170 asked a questionNon-Hodgkin Lymphoma (NHL)

    Confused

    • GregP_WN's Avatar
      GregP_WN

      Over the years I've had some doctors that acted like they were on their first day, then on the other hand I've had some that were confident, take charge, let's get this done, type of people. The first type you have to take charge of and ask questions, keep asking until you have answers you want.

      5 months ago
    • po18guy's Avatar
      po18guy

      This is your opportunity to learn about follicular lymphoma, so that informed decisions may be made. Follicular is a slow-growing, chronic disease. Many people go for years just watching it - so slow growing can it be. However, there is a risk of follicular transforming into the aggressive Diffuse Large B-Cell Lymphoma (DLBCL), which greatly complicates matters.

      Treatment philosophies differ in the medical community regarding the treatment of follicular lymphoma. There is evidence that treating it too early may make it more difficult to deal with in the future. That must be balanced against the risk of transformation. It may be placed in remission, but it is quite common for it to return. The good news is that it seems to keep responding to the same drugs upon relapse.

      Doctor may not be communicating well, but I believe that the thinking is correct. You have an infection - one that can progress much more rapidly than any cancer. In nearly all cases, treatment suppresses the immune system - thus its ability to fight infection is limited. The risk is that massive infection (sepsis) might occur, and that takes many lives (i.e. Paul Allen), and takes them much faster than any cancer is able to. If you go into treatment while carrying an infection, the risk of sepsis is greatly increased. All the while you are fighting a cancer that you may have to live with for the rest of your life as a chronic illness. A poor choice.

      Thus, it is very fitting to deal with your infection first. Lymphoma is very rarely an emergency. In fact, depending on the stage (spread) and grade (growth rate) of the lymphoma, the strategy of choice may be "watch and wait." This seems to make no sense until you understand that it is a slow growing disease, but can change its habits - either on its own, or in response to treatment.

      As to lymphoma staging, do not stress over that. It is staged completely differently from all other cancers. Iy flows int he lymphatic system and bloodstream, so it is very common to find it at stage III or IV. No matter the stage, it remains just as treatable. I have been stage IV at least twice, and in 2015, I had two lymphomas simultaneously at stage IV, plus a bone marrow cancer (MDS) thrown in for good measure.

      I advise you to read up and become informed. The Lymphoma Research Foundation is an excellent resource - their website has educational pages.
      https://www.lymphoma.org/

      5 months ago
    • andreacha's Avatar
      andreacha

      I, personally, would find another Oncologist. You should feel safe with your doctor and understand what he is saying. If he keeps changing what he is saying, he would actually scare me. You need someone with more compassion for your feelings. I wish you well.

      5 months ago
  • Schlegel's Avatar

    Schlegel wrote on Wolfe170's wall

    Wolfe179, things may be overwhelming now, but they will get better. I was diagnosed with follicular lymphoma, stage 4, in 2005 at age 60. Since then, I have lived a fairly full life (until recently when I developed some spinal problems). I even went on a mission trip to Armenia in 2011. If you have any questions, someone on this site can help.

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