Looking at liver failure, and can't find the words.

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Comments

  • pajim
    pajim Member Posts: 2,785
    edited February 2019

    Well ugh on the flu but I'm glad they took good care of you and that you're feeling better.

    I don't have any really great ideas but if you can travel you could look into CAR-T programs. Since your liver function is coming back you should be able to qualify for most trials.

  • Bestbird
    Bestbird Member Posts: 2,818
    edited February 2019

    Jennifer, I am so sorry that you've been through such a tough time, and am relieved to hear that you are responding well to your therapy.

    When I was in SABCS 2018, I learned that Kisqali (in combination with hormonal therapy) can be particularly effective for liver mets. Also, if ever push comes to shove, Y-90 therapy can also be quite effective.

    Hoping you'll need neither!

    Sending hugs.


  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2019

    You guys are the best! I'm in the middle of my second cycle with Gemzar/Carboplatin, and, whew, is it kicking my fanny. It's doing the number on the cancer cells too, so I shouldn't complain too much.

    However, I am looking forward to the day when I can go to the restroom without breathing heavily, and having to plan the expedition up the stairs at night.

    Has anyone splashed out and gotten those stair chairs? I imagine they are very expensive, but it would be nice to have access to the upstairs again. We have a small place, and all the bedrooms are upstairs. I'm lucky we have a half bath downstairs, otherwise I'd have to camp out upstairs.

    Also, a shout out to my amazing spouse. They have taken on all my chores, their job, and are a pro at being my nursemaid. Today, they are balancing several important work meetings, getting my inert self to chemo, and working on a super big project for the blessed job with the great insurance. How lucky am I? Well, besides the cancer and all that.

    I fear they are going to hit a compassion fatigue wall, so I need to get some help in. That is the downside of living very far away from family. Have any of you managed to find meal and household help outside of the family/friends network? I have two besties. One has severe MS, and the other is taking care of her Dad with dementia. I used to be able to help them, and they are in no situation to come help me. Our local cancer resource center doesn't really focus on pragmatic daily needs for cancer patients. They do a good job in support groups, and have a lovely wig boutique, but when I asked them if they had a resource list of trusted cleaners, they really didn't know what I was talking about.

    Onward. Upward.

  • HLB
    HLB Member Posts: 1,760
    edited February 2019

    There is an org called Cleaning for a Reason. Maybe do a search to see if they have any local people involved in it. Free house cleaning for cancer patients. I think it's specifically for breast cancer.

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2019

    After making me go through getting a letter from MO to prove that I had cancer, it took them a few weeks to tell me that they had no partnership in our town.

    It was a disappointment, and I felt that - maybe - they could have told me straightaway before I had to bug MO's office staff for an atypical letter. But, I have been feeling fussy lately, so they were probably just lovely.

    It is a grand idea, but they are constrained by having to get a local cleaning service to agree to partner up with them. Where I live has an awesomely low unemployment rate, so I'll bet their reimbursements were too low for the local cleaners, who could all go out and get higher paying jobs if they so chose. For example, I've been pricing cleaners, and the average hourly rate is $35 for a single person. I'm cool with it, as I'm a living wage advocate, but it does keep me out of the marketplace as much as I would like.

  • HLB
    HLB Member Posts: 1,760
    edited February 2019

    Yeah that is pretty ridiculous to make you get that letter when they didn't even have the service. I would have given them he'll for that one! No one knows how to do their simple job anymore.

  • Iwrite
    Iwrite Member Posts: 870
    edited March 2019

    Jennifer,

    How are you doing? Did Mayo get your results back? Hadn’t heard from you in a bit and hoping it’s because life is currently marvelous :

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited March 2019

    IWrite,

    Life is pretty darn good. Gemzar/Carboplatin is doing the trick with my liver. Yesterday, all liver values were in normal range. Bilirubin went from 2.6 (ouch) to 1. Now, if only I could get my platelets to behave so that I could get treatment . . . .

    Even on the reduced and skipped doses, it is decreasing the TMs, so maybe this is just what Gem/Carbo and I do.

    Mayo did get my results back. I sent them to MSK. I've had to deduce for myself that I don't produce enough mesothelin because MSK simply won't respond to my four (as of now) various emails and phone calls. Can I pout about that? I mean, just let me know. I had to self pay for the blood test. Sulk. Whine. Grimace.

    My SIL lives in Colorado Springs. I visited her about 18 years ago, and was the fattest person in the entire city. You guys are fit and beautiful. SIL is the kind of person who tells you that the plan for the day is to go for a little bike ride. My large fanny! We got back at night time, and I found out that CS is not flat.

    How are you doing? I hope well, and that every day you wake up in that beautiful city, happy.

    Jennifer

  • Melle83
    Melle83 Member Posts: 6
    edited March 2019

    when you were having all those liver problems what was your bilirubin number

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