On Pazopanib for 5 years with Stage 4 Renal Cancer

kiwibloke
kiwibloke Member Posts: 6 Member
edited April 2023 in Kidney Cancer #1

Hi to you all I was wondering if there are other people using Pazopanib for a longer time, my kidney with tumour was removed April 2011 and I was diagnosed stage 4 in December 2012.  My oncologist used to ask me for feedback on my side effects to compare with other people in the USA who had been using the drug about 9 months ahead of me.  These comparisons helped me with my journey and for the first few years made it easier, I no longer get this comparison information, the oncologist has indicated very few people are in my position.  I was hoping I could find a few other people in this forum who are long time users of Pazopanib to compare notes with.    Hoping you all have a happier day than the day before.

 

Comments

  • todd121
    todd121 Member Posts: 1,448 Member
    #2
    Long term pazopanib

    There should be lots of people around. If you don't get responses here, go to Smart Patients. You may find more there. I know several people that have been stable for a long time on this drug, or were stable for a long time on this drug.

    Best to you,

    Todd

  • rhominator
    rhominator Member Posts: 233 Member
    #3
    WoW!

    5 years! Wow. Congratulations.  I made it 3 years on Votrient at various doses. I don't know if I have anything to add that you don't already know.

    But, I remember when I started: reading of other peoples' success with drug (like yours) was an inspiration. I'm sure your story will be blessing for many.

  • kiwibloke
    kiwibloke Member Posts: 6 Member
    #4
    todd121 said:

    Long term pazopanib

    There should be lots of people around. If you don't get responses here, go to Smart Patients. You may find more there. I know several people that have been stable for a long time on this drug, or were stable for a long time on this drug.

    Best to you,

    Todd

    Long term Pazopanib

    Thanks Todd, I have only made a couple of comments over the last five years.  I have been reading the progress of others on the site which has helped a lot.

    Ken

  • kiwibloke
    kiwibloke Member Posts: 6 Member
    #5
    rhominator said:

    WoW!

    5 years! Wow. Congratulations.  I made it 3 years on Votrient at various doses. I don't know if I have anything to add that you don't already know.

    But, I remember when I started: reading of other peoples' success with drug (like yours) was an inspiration. I'm sure your story will be blessing for many.

    Helping without knowing it

    rhominator your suggestions and comments have guided me on occasions over the last couple of years, thank you

  • fishkit
    fishkit Member Posts: 3 Member
    #6
    https://csn.cancer.org/discussion/316713/on-pazopanib-for-5-years-with-stage-4-renal-cancer

    Hi! I was also diagnosed with Renal Cancer in 2011. But I had only started Pazopanib late 2022 when it had metastasised in my lungs for the 3rd time in June. I didn’t know taking Pazopanib would take that long!

    How are you now? Did Pazopanib work for you?

  • kiwibloke
    kiwibloke Member Posts: 6 Member
    #7

    Hi fishkit I am still going OK been stage 4 now for 11 years. I was on Pazopanib until July 2020 when tumours started to grow again on 800 mg. My remaining Kidney was also a concern with renal function declining to 13%, the drug being the cause of decline. My oncologist suggested I be part of a trial using stereotactic radiation, I was lucky to have an Italian radiation oncologist working next door to my oncologist who was doing the trial. All three tumours have been treated in August thru to Dec 2020 reduceing slightly in size and remained that way so far. I now have a small tumour in the area where my right kidney was, discussing now about using stereotactic radiation on this.

    Pazopanib has some difficult side effects but if you can put up with it it can last a long time, just be aware of the kidney impact. New Zealand is slow at funding new drugs, I was lucky to be the first person here to be given it.

    Hope this helps

    Good luck

  • fishkit
    fishkit Member Posts: 3 Member
    #8
    https://csn.cancer.org/discussion/comment/1704141#Comment_1704141

    Thank you for sharing. It is very helpful. I’ll ask my oncologist about it as I also have one kidney left. Best of luck to you too. Hope that tumor goes away soonest once and for all.

  • momentum7894
    momentum7894 Member Posts: 2 Member
    #9

    Is anyone else here on Cabometyx? I have stage 4 kidney cancer, and have been on Cabometyx for just over 1.5 years now, along with Immunotherapy. My oncologist has said that Cabometyx usually only lasts about 1.5 - 2 years before it may become ineffective. I did lose my left kidney back in August, and they are watching a mass that is in a lymph node under my left armpit. They haven't biopsied it, so they don't know that it is cancer, but it hasn't grown any while on Cabometyx. If anyone else here is on this drug, let me know your experience with it. Thanks!

  • Sasa29
    Sasa29 Member Posts: 3 Member
    #10

    Hi. I was on Cabo 40mg daily with Nivomulab infusions monthly. The Cabo was too harsh for me after 6 months so it was cut to 20mg. My scans showed NED within 12 months. I’m in complete remission and off everything as of last Monday. Not sure what’s next as I’m in a clinical trial which dictates the rules. If you use FB (which is only good for stuff like this) there is a Cabo support group which is very friendly and full of people who share experiences and tips much like this group. Good luck

  • Frank19
    Frank19 Member Posts: 1 Member
    #11

    Hi Ive been on Cabo (stage 4 kidney cancer) for just under 6 months. Side effects have been brutal. I also did a full year of immunotherapy first. My next scan is at the end of this month. Hoping for good news (like yours) and cutting back on the dosage of Cabo. Do you have any tricks to help with the Cabo? My worst ones are the mouth soreness and the blisters in hands and feet. Thank you for the tip on the Facebook group.

  • Sasa29
    Sasa29 Member Posts: 3 Member
    #12
    https://csn.cancer.org/discussion/comment/1707017#Comment_1707017

    Hi Frank, I found that being pro-active with the symptoms helped. As soon as I felt something wrong in my mouth I started rinsing with a baking soda/salt/ water solution at least twice a day. I also used aloe juice to swish around & swallow. I only developed one blister on my foot just before I stopped taking it. My doc recommended Eucerin (the thick one in a tub). I used white cotton gloves and socks after plastering if on at bedtime and I feel it made all the difference. Good luck!

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