Hight Doses of IL2 DID NOT WORK

Anna Bery
Anna Bery Member Posts: 18
in Kidney Cancer #1
Hey everybody
I am carrying for my mom who was diagnosed with stage IV in April 2010.
She underwent right kidney removal together with part of her intestines. First she was on Sutent, then the CT scan showed that the cancer spread to her lungs, liver and muscles in her back. We decided to do IL2. Not only the IL2 did not help, the cancer spread to mom's back bones and now she has cord decompression. The doctor who conducted the IL2 told me that this is the END, and that I should stop trying to do anything because its not curable and that all the targeted therapies will just postpone the end. I am totally devastated!!!!! Anyway, I am looking for some more treatments options. In the meantime, mom is doing radiation on her back and going around in some special back belt plus many many painkillers because the pain in her back is very strong!!!!! One oncologist told me that once she is done with radiation she will be on Afinitor and if it does not help than some medical trial. I scheduled mom another appointment to see if any other oncologist has anything else to offer.
I feel hopeless and very depress. Can anyone share their own experience.....
Thank you

Comments

  • ejneary
    ejneary Member Posts: 64
    #2
    Treatment Options
    Honestly, your mother's oncologist should be the one to be giving you treatment options. Depending on your mothers age and general health, there are a few options after IL2. The concern right now should be her quality of life which it sounds like the radiation is currently being used to improve, especially if she has pain. Eliminating as much pain as possible while also helping her to be coherent should be the first priority. If the oncologist is not helping you in this regard, make sure to find someone who can.

    Also, there are programs to help you with finding quality care if you feel that you are not receiving it. The Livestrong folks have patient advocacy programs to help you get the best care you can and to help out with other issues. It also sounds like you need some support. I would suggest finding a local cancer support group in your area to help you through this as a caregiver. The people who are left out the most and need as much care as the cancer patient themselves are our caregivers.

    I realize that you feel helpless and hopeless. Most of us are there from time to time and that is where a local support group will help you.

    Please let us know what you find out and what the oncologist suggests. Also, let us know how your mother is doing. There isn't much we can do here but try to be supportive and offer suggestions. You definitely can't do it alone so reach out for yourself also. Your mother will benefit from you being strong.

    Take Care
  • jona187
    jona187 Member Posts: 71
    #3
    How old is your mother?

    How old is your mother?
  • Anna Bery
    Anna Bery Member Posts: 18
    #4
    ejneary said:

    Treatment Options
    Honestly, your mother's oncologist should be the one to be giving you treatment options. Depending on your mothers age and general health, there are a few options after IL2. The concern right now should be her quality of life which it sounds like the radiation is currently being used to improve, especially if she has pain. Eliminating as much pain as possible while also helping her to be coherent should be the first priority. If the oncologist is not helping you in this regard, make sure to find someone who can.

    Also, there are programs to help you with finding quality care if you feel that you are not receiving it. The Livestrong folks have patient advocacy programs to help you get the best care you can and to help out with other issues. It also sounds like you need some support. I would suggest finding a local cancer support group in your area to help you through this as a caregiver. The people who are left out the most and need as much care as the cancer patient themselves are our caregivers.

    I realize that you feel helpless and hopeless. Most of us are there from time to time and that is where a local support group will help you.

    Please let us know what you find out and what the oncologist suggests. Also, let us know how your mother is doing. There isn't much we can do here but try to be supportive and offer suggestions. You definitely can't do it alone so reach out for yourself also. Your mother will benefit from you being strong.

    Take Care

    Thank you for your support.
    Thank you for your support. One oncologist suggested to start Terosel treatment next week, he said that it will probably take a year or two until.... We are about to see another oncologist next Tuesday for another opinion. Mom's pain is controlled by pain medications after she was hospitalized for 3 days to establish appropriate doses for her, and I hope that the radiation will also help.
    I am trying to mediate and stay positive, however its hard when the mets are already in mom's spine.
    Thank you for your support. I will update you how things are going.
  • Anna Bery
    Anna Bery Member Posts: 18
    #5
    jona187 said:

    How old is your mother?

    How old is your mother?

    Mom is 59 and given
    Mom is 59 and given everything all oncologists I spoke with gave her 1-2 years using one or more of the available targeted therapies.
  • Anna Bery
    Anna Bery Member Posts: 18
    #6
    Anna Bery said:

    Thank you for your support.
    Thank you for your support. One oncologist suggested to start Terosel treatment next week, he said that it will probably take a year or two until.... We are about to see another oncologist next Tuesday for another opinion. Mom's pain is controlled by pain medications after she was hospitalized for 3 days to establish appropriate doses for her, and I hope that the radiation will also help.
    I am trying to mediate and stay positive, however its hard when the mets are already in mom's spine.
    Thank you for your support. I will update you how things are going.

    Mom's update
    So, after radiation mom's back started to heart SO MUCH that we went to emergency again. The pain got under control, but there was an additional compression of her spine. Today or tomorrow she will undergo spine surgery to relief her back pain and maybe try and take the tumor that compressing on the cord out. Its really tough, but we are trying to hold it together
  • selissa
    selissa Member Posts: 4
    #7
    Anna Bery said:

    Mom is 59 and given
    Mom is 59 and given everything all oncologists I spoke with gave her 1-2 years using one or more of the available targeted therapies.

    Trial
    I am so sorry to hear about your mom. My dad has Stage IV RCC. Contact me if you want and I can tell you about a clinical trial I found. 6424353b@gmail.com.

    Good luck and blessings!
  • rick_o
    rick_o Member Posts: 1
    #8
    Experience with Treatment Options
    Anna,
    Your mother's experience was similar to my experience with RCC. I was diagnosed in Dec 2009 with stage IV RCC, had my left kidney removed in Jan 2010, and started treatment with Sutent in Feb 2010. Subsequent CT scans showed that the indications on my lungs had disappeared, but indications had now appeared on my liver and lesios appeared on my lower vertabrae. My treatment was changed to 8 week cycles of interferon/ interleukin/ 5-FU, and after 3 cycles the cancer is in remission.
    Initally my back pain was terrible, and I was taking the lowest dose of Oxycontin every 12 hours. The treatment ultimately shrank the lesions on my vertabrae, and the pain subsided. i did not undergo any radiation treatment.
    I recommend that you persue other opinions as some doctors appear to be more willing to look at alternatives. In my case, my second course of action was a more mature approach, compared to the use of new "wonder drugs". Every one reacts differently, so several options may need to be explored to find the effective treatment.
    Best Wishes, and God Bless.
  • Anna Bery
    Anna Bery Member Posts: 18
    #9
    rick_o said:

    Experience with Treatment Options
    Anna,
    Your mother's experience was similar to my experience with RCC. I was diagnosed in Dec 2009 with stage IV RCC, had my left kidney removed in Jan 2010, and started treatment with Sutent in Feb 2010. Subsequent CT scans showed that the indications on my lungs had disappeared, but indications had now appeared on my liver and lesios appeared on my lower vertabrae. My treatment was changed to 8 week cycles of interferon/ interleukin/ 5-FU, and after 3 cycles the cancer is in remission.
    Initally my back pain was terrible, and I was taking the lowest dose of Oxycontin every 12 hours. The treatment ultimately shrank the lesions on my vertabrae, and the pain subsided. i did not undergo any radiation treatment.
    I recommend that you persue other opinions as some doctors appear to be more willing to look at alternatives. In my case, my second course of action was a more mature approach, compared to the use of new "wonder drugs". Every one reacts differently, so several options may need to be explored to find the effective treatment.
    Best Wishes, and God Bless.

    Rick,
    I am happy your
    Rick,

    I am happy your cancer is in remission. My mom's cancer went to her brain and now they suspect that also to her stomack. She experienced a bad seizure and still recovering from it. I am not sure if she is strong enough to try any other treatment at this point.
    Good luck, and God Bless

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