Confused with Mother's treatment plan

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sm012023
sm012023 Member Posts: 28 Member

Would like some help in managing my mother's treatment plan:

My mother is 86 and has been diagnosed with Metastatic stage 4 endometrial cancer (uterus being the primary source). She had about 7 cycles of chemotherapy consisting of Carboplatin and Taxol from Aug 2022 to Feb 2023. The PET scan in Jan 2023 showed her 80% free of cancer.

One of the side effects that we saw (after chemo was started) is that she was using her balance and so had a few falls because of which she was admitted into the hospital for a couple of days after the fall each time. Fortunately, there have been no fractures but she is very much in pain (due to the falls). And I used to approach the oncologist after every fall episode and the conclusion drawn by the oncologist is that my mother is too frail and so she will stop the chemotherapy and is asking my mother to go on Hospice care. If not for this loss of balance issue, my mother is otherwise doing fine -- no heart issues, no kidney issues and no diabetes issues.

So, my argument is that instead of Hospice, we should probably have her seen by another oncologist or a team of doctors that can help her and see what they may have to say.

What would you all suggest? Have any of you have come across a situation like this? If so, can you please let me know what is the best step going forward?

Thank you so much.

Very confused.

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
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    sm012023, IMO decisions about a patients treatment should be made by the patient. If your mother wants to continue with chemo the question you need to have answered is how do we help her with falling? Does she use a walker? Is it possible she can use a wheelchair? Chemo is hard on a body, but it shouldn't be you have side effects that would mean you go in to hospice. Heck, lots of warriors have had difficulties but they found ways to work with what was going on.

    Hospice should be the option when she wants it not when someone tells her.

    Hugs.

  • sm012023
    sm012023 Member Posts: 28 Member
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    Thank you for your beautiful response.

    I am glad to see your response. And as I was reading your response, I got a call from the hospice company and I said I would like to take my mother off that care. Feel so relieved now!

    Next my goal is to find an oncologist that maybe can help my mom better 🙏

    Thank you so so much.

    You all rock and am so glad I signed up here or else I would be so lost in helping my mother.

  • Forherself
    Forherself Member Posts: 978 Member
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    Sorry to hear about your Mother's falls. When I read your letter, I ask myself what does your Mother want? Does she want treatment?

    If she does I would just ask for a second opinion. The doctor who gives a second opinion needs to read all the records. All those records need to be sent. That is usual.

    Also, have you considered Palliative care. It is about the comfort of the patient. You can quit at any time, and can continue treatment while in Palliative care. If your mother is in pain, medication may make it more likely that she falls. They might have recommendations about that too. Good luck.

  • ConnieSW
    ConnieSW Member Posts: 1,681 Member
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    I agree with the others. Also, would a PT/OT consult be helpful?

  • sm012023
    sm012023 Member Posts: 28 Member
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    Thanks for the message. Yes, she would like to be cancer free she says and she is pretty alert which is what makes us want to get a second opinion.

    Will proceed like you said and will look for palliative care. 🙏🙏

    Thanks

  • sm012023
    sm012023 Member Posts: 28 Member
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    She has been seeing a PT/ot through home health but still falls :(

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
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    My heart goes out to you sm. Again, can she use a wheelchair for getting around? It doesn't sound like she can walk without the risk of falling - which can be a problem for anyone at 86 yo. Is there a physical reason that her balance is off? Chemo takes a toll on the body, even for someone younger.

    I think it is safe to say, from all of us who have had to help our parents in their later years, it can be very hard. Hugs my dear.

  • sm012023
    sm012023 Member Posts: 28 Member
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    Well the problem is that she walks ok with her walker within the house. And the issue has always been when she is pulling off/on her panties to use the bathroom. All her falls have been in bathroom and that's what is so hard.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
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    I remember I was so weak from the chemo, out of breath constantly, practically fainting if I had to go up a few stairs. I was also walking a bit unstable, but did not fall.

    Your mother, obviously, needs support during this time of chemo. Why stop treatment if she can be helped with an aide or family member? For a few months?

    It sounds like she did not have issues with balance and falling before the chemo, (I assume) so why not get her help to get through this?

    Good luck to you!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
    edited April 2023 #11
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    Another suggestion, if she falls trying to use the bathroom, maybe she would consider adult incontinence for a time. Bathrooms are usually tiled and those are the hardest surface of all.

  • Lasha12
    Lasha12 Member Posts: 20 Member
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    Why doesn't she try imunotherapy? Chemo did nothing for my uterine cancer.

  • sm012023
    sm012023 Member Posts: 28 Member
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    Thank you and this sounds so encouraging. No she didn't have issues with balance before the chemo. Yes I have hired caregiver for a few hours everyday and have made her wear a pull-up in the nights but after insisted on using the bathroom in the nights too and so we got her full bed rails and in the nights, she is being coerced to use the pullups instead of going to the bathroom. She is barely trying to do that and if she sees us awake by any chance walking near her room, she wants to go to the bathroom lol and for the daytime, one of us is taking her to the bathroom.

    Tomorrow I am taking her for a second opinion and so I hope she can get some convincing solution there about chemo etc 🙏

  • sm012023
    sm012023 Member Posts: 28 Member
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    Oh wow... Didn't know about that.

    From the 3rd PET scan in Jan 2023, it was identified that she is 80% cancer free which is why am so tempted to get her into remission🙏

    So how long was chemo done for you when they realized that they should switch to immunotherapy? And maybe IT is less toxic than CT?

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
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    Thanks for clarifying, I assumed she had extra help but wasn't sure. My issues were 100% related to low blood counts, from the chemo. Once I stopped chemo, it took about 6-12 months to recover my former status so remember she might have these issues for a while after she finishes chemo. You are doing the right thing to get her help, many folks live well into their 90's these days, look at Jimmy Carter! When you get another opinion and choices then your mom and family can make an informed decision along with her doctors and the level of help she will need until she heals.

  • sm012023
    sm012023 Member Posts: 28 Member
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    Thank you for an encouraging response! And yeah I truly agree with you regarding Jimmy Carter🙏🙏

    We just got back after a second opinion from another oncologist.

    He has got my mother's blood drawn for various tests and wants to talk after those results are out regarding any deficiencies she may be having.

    After the above analysis, the onco wants us to do yet another PET scan and then depending on what portion of the cancer is remaining (if any) he wants to try a targeted approach.

    So keeping fingers crossed. But for sure, this doctor wants to help unlike the previous one where she kept pointing to my mother handling the chemo and I very much saw 'age bias' there! :(

  • jan9wils
    jan9wils Member Posts: 202 Member
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    I had balance issues when I was having chemo. It would last for a few days after having an infusion. I used to walk around holding onto the wall, countertops, furniture, etc. Two days after having my third infusion I fell in the bathroom and broke my foot. I remember feeling dizzy while trying to get to the sink to wash my hands and blacked out for a moment when I fell. I have low blood pressure and think I had a further drop in blood pressure which caused the dizziness. After that episode, whenever I felt that dizzy sensation I would get down on the floor and crawl to a chair or to my bed. It usually happened when I was getting up from a sitting position.

    I am glad your mother has a new doctor.

    Jan

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
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    Have her use a large Pad inside her pants. Eliminate using panties. If wriggling her way out of them is too rough, eliminate them. Pants a problem? put her in a house dress. Use pads.

  • sm012023
    sm012023 Member Posts: 28 Member
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    Thank you for the pads suggestion. Do you have any recommendations for good pads? Also, these days, I see that her pull-up (with a Poise pad) is not sufficient to absorb the nighttime urination. I wake her up at 5am and clean her and the sheets. Would love suggestions for a night time good pull-up that can absorb for say 7-8 hours.

    Thank you

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
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    Use two sets of pull ups! OR do this: put a large extra absorbent Poise Pad in the pullup.

    Next, get rounded tip scissors. When you take the wet pad at night, simply cut down both sices (at the hip) which makes the pull up easier to take off. No tugging and pulling. Lift her hips, or gently roll her and pull the pull up off.

    Get bamboo mattress pads, or something rubberized. Create a 'draw sheet' of the width of the bed, but only a third large, tuck it in both sides of the bed. Have several of these strips of draw sheets with rubberized pad underneath. Change that at night, not the whole sheet.

  • cmb
    cmb Member Posts: 1,001 Member
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    One of the problems with most of the pullups that I’ve seen is that the elastic around the legs is never tight enough to completely prevent leaks during heavy flows, even when a pad is also used. However, I have seen ads for water-proof incontinence briefs or “diaper covers” that someone can wear over the pullup or pads. You may want to give these a try.