Non Hodges follicular lymphoma what is the death rate age after being diagnosed

withGodshelp
withGodshelp Member Posts: 2
edited December 2022 in Non-Hodgkin Lymphoma (NHL)
Non Hodges follicular lymphoma what is the death rate age after being diagnosed

Comments

  • GregP_WN
    GregP_WN Member Posts: 742
    edited February 2020
    Hello, sorry for your diagnosis. Those numbers (statistics) are out there in all sorts of fashion. There are so many variables that it's not a good Idea to look at any of them and try to apply them to yourself. For example, we have lots of people here on the site that were diagnosed at stage IV and told that they only had xxxx months to live. They are still here today doing just fine with no sign of disease. (NED). My numbers were terrible for my last diagnosis, I blew by all of them by years. Plan to do great, expect to do great, but have an idea of what you might do IF things went South and didn't work out. We wish you the best! Others will have some feedback for you I'm sure.
  • JaneA
    JaneA Member Posts: 335
    edited February 2020
    We human beings aren't like food at the grocery store - we don't come with an expiration date. While the statistics are fairly good when saying out of 1,000 Stage IV patients, 200 or 300 will live. The statistics don't help our medical team predict your outcome. It depends on how you respond to your treatments. It depends on whether you're allergic to the best treatment. It depends on whether you have pre-existing conditions which might make treatment more challenging. Find the best medical team that you can find, and do your best with the cards dealt to you. I am a 5-year Stage IV rectal cancer survivor so there are success stories all over.
  • Jayne
    Jayne Member Posts: 134
    edited February 2020
    Totally agree with what's been said - we are all writing our own chapters in this so focusing on the average death rate is just depressing. I know it's important to get an idea of what you are facing but you have way of knowing the age, treatment plans, other health factors of those who did not survive. Some of the stats go way back and there are better/new therapies now. Like Jane and Greg, I was given a grim diagnosis - Stage IV colon and am 5 years NED now. I tried to use the motto while waiting for my scan results "expect good news but be prepared for bad" - it's hard though, all of us can relate to that fact.
  • po18guy
    po18guy Member Posts: 329
    edited February 2020
    Follicular Lymphoma? 1. What is the stage? 2. What is the grade? 3. What is the age of the patient? 4. What is the patient's general health? 5. Is it confined to the lymph nodes or has it spread to organs? 6...this can go on and on. Today, one may very well be more likely to expire from old age or natural causes than from the slow-growing lymphoma. There is no way on earth that anyone can predict the outcome. In fact, the most common treatment strategy is watch & wait (W&W). As to treatment, it can be unwise to begin treatment too early! There are many newer, less toxic and more effective drug regimens that are constantly extending the length of response to the treatment.

    "Lymphatic cancer" is not the death sentence that it was in, say, the 70s. There are thousands - myself included - that are proof of that. Please read up on follicular lymphoma at: https://lymphoma.org/aboutlymphoma/nhl/fl/flsurvivorship/

    I began with a poor prognosis. After immediate relapse, I was in a patient group which had a 3 month median (average) survival rate.

    11 years ago.

    And this was before a second relapse, a second non-Hodgkin's Lymphoma, a third bone marrow cancer (MDS) and all three simultaneously. In my 60s.

    The first thing to do is: Do not worry.
  • Jjoco
    Jjoco Member Posts: 1
    edited February 2020
    I still remember the original death rates I was given by an oncologist when I was diagnosed with follicular lymphoma - he said about five years on average. Of course, that was almost 18 years ago.. Thinking of his words all those years ago still make me smile.

    I asked my current oncologist recently if there are really so many more people getting cancer, since the hospital seems to be constantly expanding the infusion suite. She told me it is because people are living so much longer with current treatments provided.

    Be sure you have updated information. Treatment protocols change constantly.
  • Schlegel
    Schlegel Member Posts: 2
    edited February 2020
    We don't know. Rituxan has increased the survival significantly, and newer drugs have expanded it even more. When I was diagnosed with Stage 4 FL I asked my doctor how much time I had. He said up to ten years. That was a good answer based on what they knew at that time in 2005. Most of with follicular lymphoma will die from something else.
  • po18guy
    po18guy Member Posts: 329
    edited February 2020
    You might consider signing up at https://www.cancercoachlive.com/app/lobby

    And watching their patient education webinar on follicular lymphoma. An hour long, it is very informative and confidence inspiring.

    https://www.cancercoachlive.com/app/follicular-lymphoma/presentation/092618_CAN_FL_PAT