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Continue maintenance chemo?

JeweloHE
JeweloHE Member Posts: 2

Hi All,

I'm new on here. My mom was diagnosed with colorectal cancer in 2019 and had surgery and chemo then as her medical team advised. Unfortunately in Jan 2021, the cancer came back- close to the original site in 2019 and also in her thyroid. Her doctors seemed pretty sure the thyroid was a separate cancer as this is uncommon to have it spread there but additional testing proved otherwise. Because the cancer was now in a distal site ( her thyroid- which she's since removed), she was told she has stage IV. Since then, she has been getting chemo every 2 weeks and has responded very well (outside of side effects). Her last scan showed no evidence of disease and her blood work is always great. However the oncologist is insisting she must remain on maintenance chemo for life. Would like to hear some thoughts or from others who have gone through this. I feel the chemo is gradually taking its toll with some of the side effects of vectibix- skin rash, brittle skin, hair loss, fatigue and now other side effects that may be related? Coughing, hoarse voice, etc. I'm not really sure getting chemo every 2 weeks is sustainable, isn't she able to take a break and be monitored frequently?

Comments

  • Real Tar Heel
    Real Tar Heel Member Posts: 265 **
    edited October 1 #2
    Congrats to your mother being

    Congrats to your mother being NED. A total response from chemo only is quite rare. However, it's time for a second opinion. After my last liver resection I was NED for awhile and so then was not having any therapy, just regular doctor visits. I would think this is a standard of care. I don't know how old your mother is, but her age may be a factor. "Life" for me godwilling could be another 30 years or so. What might constitute "life" for her might be different.

    Also, maintenance chemo can be different at different institutions. I've seen that as 1/month, which may be something to consider.

     

  • yetti
    yetti Member Posts: 65 **
    Maintance chemo for life!

    I would never agree to chemo for the rest of my life!  If I'm told I'm NED. Then why?  I woukd agree to 3 mth surveillance checkups scans  exams but not chemo !  Unacceptable in my opinion and I would seek a 2nd one, 

  • Trubrit
    Trubrit Member Posts: 5,526 **
    In agreement

    Welcome to the forum.  I am sorry about your mum, it is never easy.

    I am in agreement with RTH & yetti; a second opinion would be the way to go. 

    Did your mum's Oncologist explain EXACLTY why he/she thinks chemo for life is the best option?  I would get all my ducks in a row, and when you find another Oncologist, you can tell them exactly what the present Onc is suggesting and why, and then see what they have to say. 

    Thankfully, with mum being NED, time is on your side to search out a good second - or even third, opinion. 

    Tru

  • JeweloHE
    JeweloHE Member Posts: 2
    Thank you!

    she's 65 and the response is always just because it's stage 4, that's the recommended plan. At her biweekly appointments where she gets her blood work and then chemo,  the oncologist doesn't even see her anymore - usually the PA because her case is "steady". it doesn't feel right to just keep going. Thank you for your responses. We'll seek a second opinion 

  • Real Tar Heel
    Real Tar Heel Member Posts: 265 **
    edited October 1 #6
    JeweloHE said:

    Thank you!

    she's 65 and the response is always just because it's stage 4, that's the recommended plan. At her biweekly appointments where she gets her blood work and then chemo,  the oncologist doesn't even see her anymore - usually the PA because her case is "steady". it doesn't feel right to just keep going. Thank you for your responses. We'll seek a second opinion 

    This kind of sounds like

    This kind of sounds like adjuvant chemotherapy. Let us know if they use that term in conversation, or ask them if this is the plan. I had adjuvant chemo after the removal of a liver met in the early days of my therapy. But that was for 6 months, not for "life."

    NFN, I only see my oncologist 1 every 2 or three months now.

  • Floshoe
    Floshoe Member Posts: 4
    If it helps, my ex just got

    If it helps, my ex just got diagnosed Stage 4.  He had a bowel resection, and a clean CT for now.  The doctor said if his scan is still clear after 6 folfox treatments, he'll just be monitored until something shows back up.  Good luck to your mom and you!

  • OnTheRoad
    OnTheRoad Member Posts: 29
    edited October 3 #8
    The big problem is the cancer get resistant

    I believe the big problem to continue constantly in a chemo regimen is that sooner or later the cancer can get resistant to it... and then you have to move to another type of chemo. There are not 20 possible options of chemo for us, so, I believe chemo is strategic.

    I would try to avoid to be in chemo all the time not only for the side effects of it, but also to be able to use the same chemo again in the future and still get results from it.