Tossing in the towel on this round

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bettysgirl
bettysgirl Member Posts: 938

I know that the Covid is doing a lot of the talking but ii am not progressing well and nobody can figure out how to kill the thrush. I am doing rinses, scrapes, all kinds stuff. They had to move the 02 back up, I'm weak, i refuse to do any further steroids or breathing treatments for now. Because we cannot manage covid well and thrush I will NOT begin the chemo. If it ends up being a bad decision oh well. I am done and NOT breaking those drugs out of the bag. The gabapentin is another drug i am taking off also. My feet weren't burning but are not. All I am willing to do at this point is to attempt to make it to rads and be done

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  • moth
    moth Member Posts: 4,800
    edited September 2021

    bettysgirl, sorry that you're having trouble with thrush on top of everything else. It's a lot to juggle. Covid can be so brutal. I hope you can begin to wean off the oxygen and get the fungal infection under control.

    Good idea about the rads as they can be less troubling that chemo so a good place to start and then hopefully get you healthy enough to start the other treatments soon.

    Is your family doing ok?

  • bettysgirl
    bettysgirl Member Posts: 938
    edited September 2021

    My husband isn't happy that i am upset and is texting feverishly with my doctor and is mortified that would even consider foregoing chemo. The nurse navigator with the insurance said they would not approve xgeva that I would have to do infusions so there's that. But if my body is not capable of fighting fungus it sure can't fight chemo. We still do not know if the liver is Mets and have to do chemo, tumor markers and all kinds of crap to get there so they can just have it. We got too far to go to even get there

  • moth
    moth Member Posts: 4,800
    edited September 2021

    Aw, I'm sorry it's so rough right now. One step at a time. You don't need to be making big decisions right now about chemo... and you know the thing about the infection might not be true. I've been battling a constant UTI for 18 mos - have had to be on antibiotics this whole time but I've also been doing chemo the whole time.

    Your poor husband must be beside himself as well. I want to say 'take deep breaths' but with your O2 and covid hat just sounds mean....but do try to find moments of peace and hope. It's just a couple hurdles you have to get over.

    The bisphosphonate infusions are fine...most people tolerate them easily so don't stress about not doing Xgeva.

    Just focus on your will to live - for your family, your husband, yourself. There's still lots of stuff for you to do! Have a cry and an angry yell and then it's time to get back to kicking cancer's ass.

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited September 2021

    Bettysgirl,

    So sorry that you are going through so much. I agree with Moth, one step at a time.

    With regards to the bisphosphonate infusions, I was had monthly pamidronate infusions for almost three years without issue. I was actually amazed at how technology has improved. They would start the IV and hook me up to what looked like a baby bottle and send me on my way. The pamidronate infused slowly over a two hour period (it's in a latex sac inside the bottle). Once it was done it was easy to remove the IV (with an extra pair of hands) and I was done for another month. Very nice not having to sit around the hospital for two hours.

  • bettysgirl
    bettysgirl Member Posts: 938
    edited October 2021

    I came out of Covid exhausted. But plowed forward and have done 8/10 rad treatments on my back. Mobility is better. Onco says she is sympathetic to me being exhausted but wants me to start xeloda next Monday after I finish rads this Tuesday. I told her I would give her 1 cycle and if the effects were too bad it would be all she would get.

  • bettysgirl
    bettysgirl Member Posts: 938
    edited October 2021

    I managed 3 days of chemo and ended up in the floor. Been in the hospital the last 12 days with congestive heart failure. I'm glad some of you excel and thrive at stage IV. Some of us don't and won't

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