FOLLICULAR MIXED SMALL AND LARGE CELL LYMPHOMA

r3bkn0
r3bkn0 Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I was diagnosed with Follicular mixed small and large cell lymphoma at age 52 in 2008 and received 6 rounds of treatment with Rituxin, Chemo and Neulasta (repeated every 21 days). The doctor said I was in remission but now this year I am receiving Rituxin treatments once a week for 4 weeks every 6 months for 2 years as maintenance. My oncologist said my lymphoma was stage 4 and was indolent which was not curable. I take meds for anxiety but am still having trouble with anxiety, chemo brain, fatigue and my husband tries to understand but doesn't seem to realize that I poop out so quick. I want to get some energy and live life. Does anyone have any suggestions on that and my treatment and do you also have the fatigue issues? Also, I am never hungry but keep gaining weight (not a good thing for me!)

Comments

  • DennisR
    DennisR Member Posts: 148
    #2
    Hey R3,
    Chemo drugs are very
    Hey R3,

    Chemo drugs are very powerful and fatigue is a very real part of the treatments. The drugs are destroying Onco cells 24/7 and overloading your kidneys trying to eliminate them along with the Chemo drugs. Sometimes the Cure seems worse than the disease.
    I don't know why the Dr is telling you indolent cancer cells are incurable, my Onco told me that too, but I'm still here to disagree after 9 years, most of them very GOOD years, and there are exceptions to every rule and tidbit of common wisdom. Everything is curable and your Dx of Indolent mixed Large & small Cell Lymphoma most certainly is. Keep the faith, seek the things and people that bring you Joy and focus on them.
    You're in my prayers.
    DennisR
  • r3bkn0
    r3bkn0 Member Posts: 2
    #3
    DennisR said:

    Hey R3,
    Chemo drugs are very
    Hey R3,

    Chemo drugs are very powerful and fatigue is a very real part of the treatments. The drugs are destroying Onco cells 24/7 and overloading your kidneys trying to eliminate them along with the Chemo drugs. Sometimes the Cure seems worse than the disease.
    I don't know why the Dr is telling you indolent cancer cells are incurable, my Onco told me that too, but I'm still here to disagree after 9 years, most of them very GOOD years, and there are exceptions to every rule and tidbit of common wisdom. Everything is curable and your Dx of Indolent mixed Large & small Cell Lymphoma most certainly is. Keep the faith, seek the things and people that bring you Joy and focus on them.
    You're in my prayers.
    DennisR

    Thanks for your reply and
    Thanks for your reply and words of encouragement. I will take all the years that I can get! I just hope I can use supplements or something to help boost my energy. How long did you have NHL before diagnosis? Mine was found totally by accident as they were looking at my thymus with CT scan and discovered the lymph nodes all enlarged. Dr. said I had this for years (undetermined amount) before discovery. Any info you have to help is appreciated.
    Thanks again and you are in my prayers as well. I know HE is the Great Physician and can heal us.
  • DennisR
    DennisR Member Posts: 148
    #4
    r3bkn0 said:

    Thanks for your reply and
    Thanks for your reply and words of encouragement. I will take all the years that I can get! I just hope I can use supplements or something to help boost my energy. How long did you have NHL before diagnosis? Mine was found totally by accident as they were looking at my thymus with CT scan and discovered the lymph nodes all enlarged. Dr. said I had this for years (undetermined amount) before discovery. Any info you have to help is appreciated.
    Thanks again and you are in my prayers as well. I know HE is the Great Physician and can heal us.

    Hi R3,
    I had recognizable
    Hi R3,

    I had recognizable symptoms for about 4 months, drenching night sweats, pain, rapid weight loss, etc which continually progressed. I was originally misDxd by a local Hospital and several clinics as a probable Hernia, which I was more than happy to accept, thinking I could eat painkillers (Vioxx) and have an out patient surgery done at my convenience. Wrong! I had both large B Cell & small cell Non Hodgkins Lymphoma, indolent and aggressive, but primarily located to a single site in my colon, surrounding tissues, appendix, and large intestine. I guess that's why it hurt so much. Geez, How dumb can a guy get?
    When I went to the VA to set up the Hernia operation, I was shocked, to say the least, that I actually had a very large tumor (stage 4) in my descending colon which had Ms'd to several other areas and which required immediate surgery...and that began my 9 year Journey of Surgery/Chemo/Radiation/ BMT (Stem Cell Transplant) which only recently, (feb, 2009) seems to have finally NED'd to the point of some confidence that I might have an excellent chance of a complete cure this time.
    I'm fortunate in that I seem to be able to deal very well with the various treatments, Chemos, Radiations, nausea, etc and still come out with a working set of kidneys, liver, etc.
    DennisR
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    #5
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