Two months after my mom’s diagnosis

Discussion Board Forums Introductions! Two months after my mom’s diagnosis

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  • #77371
    kris00j
    Spectator

    Caroline,
    Only a few more weeks of patience! Then you can find out the choices going forward. I have to say I love Dr. Fong, and will probably go back to him IF I am ever deemed operable. I no longer go to Sloan for my treatment. He is a wonderful, caring man. And I like Dr. Brown, too. She is another “straight shooter” who will tell you what is going to happen and how she feels about it.
    Your mom us in good hands with them.

    #77370
    kris00j
    Spectator

    Sister,
    I was on gem/Ox and did have nausea and diarrhea for a few days after each infusion. And exhaustion. But they all went away after a few days.
    I would talk to the doc about the side effects. If she is being honest when they ask, they will either give her meds to try to control it or change the chemo. There are meds out there for both side effects.
    I would talk to your sister about getting another opinion. It doesn’t hurt. It can only help. I will add, tho, that liking your onc is much more helpful when it comes to the care.

    #77369
    marions
    Moderator

    sis….you had mentioned that your sister’s fluid is drained. Is that still the case? Has the fluid increased in volume? Is she still drained as frequently as before?
    Hugs
    Marion

    #77368
    holly22a
    Member

    ps, you should definitely post a new topic of your own so people will see your post — it is kinda buried here under someone else’s post.

    #77367
    holly22a
    Member

    Dear Sister, I can only say the same as others will – – you should get a second opinion. There are many different chemo regimens and there are ways to deal with mets. I would make it top priority to see another doc or two. You will be surprised how helpful it is. Let us know how it goes for you. So sorry for you and your sister that she is suffering so….
    Holly

    #77366
    sister
    Member

    It sounds like your mom is getting great care at Memorial Sloan. My sister, on the other hand , I feel is getting terrible care but she loves and trusts her oncologist and refuses to go for a 2nd opinion. She was diagnosed at the end of September with metastatic (to bones and nodes) intrahepatic cc and put on GemOx. She’s lost 25 lbs, is completely fatigued, no appetite and no quality of life. Diarrhea so bad that she is in depends. It just doesn’t seem right. Has anyone had this sort of experience with Gemox or other chemo? She’s had 4 cycles so far and just gets so sick from it. How do I know the chemo is working?
    I am so frustrated! Any and all suggestions are welcome!!
    Thank you!

    #77365
    kvolland
    Spectator

    Yeah I think a little too much but that’s okay. I try really hard to make small batches and remember I am not cooking for 6 any more, just the three of us plus one small grandbaby that doesn’t eat much. I thought the sauce tasted a little sweeter but I liked it.
    And I am sure it was destiny Lainy. There are lots of things about Mark that make me think he was the one.
    And then after dinner tonight which he hardly ate, he finally tells me he has that strong metallic taste from the chemo and nothing really tastes right and that anything with meat in it tastes bad. Would have been nice to know. Now I know why he eating so much Top Ramen because it still tastes pretty good….yeah I know totally gross to eat but at least I got him to put an egg in it for protein.

    #77364
    lainy
    Spectator

    Oh I am so glad the baking soda worked. I use about a TLBS to say 4 large cans of sauce. We don’t know how to make small batches of sauce. BTW you put it in the sauce before adding the beans etc. the only thing that ever tasted diff to me was it sweetened the sauce. If that is the case just up the seasonings. You know there are a thousand ways to make red sauce and when T and I met we made it exactly the same! It was destiny!

    #77363
    kvolland
    Spectator

    I tried the baking soda in chili tonight and it worked great….no heartburn so far. I may have used a little too much for what I made. A coupe of people in my house complained that it didn’t taste quite right but I liked it. Maybe I will use a little less next time.
    Thanks bunches Lainy.

    KrisV

    #77362
    bananaf1sh
    Spectator

    These are all wonderful suggestions. Thanks so much, everyone! Lainy, I’m excited to try the baking soda trick. Thank you again!

    Caroline

    #77361
    kvolland
    Spectator

    Okay, I will have to give the baking soda a try since having my gallbladder out I limit the acidic foods since it give me heart burn. That would give me one more thing I could add back.

    Caroline –
    Welcome to our little family here. So sorry you had to join but you will find the support above par.
    As for traveling and eating out, my husband and I have been fairly regularly although we try to limit his being out from days 7-11 after chemo as our ONC told us that is when his counts would be the lowest. And we try to stay away from any place that has crowds so sometimes we limit family interaction during that time (all of our immediate family had their flu shots to that helps and NO ONE is allowed around it they are sick). Hand sanitizer is great although I might suggest one more….some sort of anti-microbial wipe…there are a lot of different wipes even something like Lysol bleach wipes or something like that. We use them to wipe surfaces down such as grocery carts and things like tabletops at restaurants. They can be used once and tossed.
    The other thing I might suggest is making sure that meats are well cooked rather than anything that is on the rare side.

    KrisV

    #77360
    lainy
    Spectator

    Ah. Sorry. Well it can still work for those who can’t take the acid. I know, you prefer canned sour kraut eggrolls!

    #77359
    kris00j
    Spectator

    Lainy, I just didn’t like the taste while I was on chemo…

    #77358
    lainy
    Spectator

    Hi Kris. You do not have to give up Spaghetti sauce because of acid. When Teddy and I met, turns out we made our sauce the same exact way. Yep that must have been the attraction! When the sauce is almost done cooking add baking soda. I would say for 4 cups of sauce I would sprinkle oh, 1 TLBS sauce and you will see it froth and bubble up and that is the acid coming out. And you do not have to add sugar as the baking soda actually sweetens it. Wallah! Magic. Also can do this for jarred sauce. Jarred? Sac religious! Although Ragu is pretty good. Now I am hungry for sauce!

    #77357
    kris00j
    Spectator

    Caroline,
    Let me also welcome you to our little family. I think everyone has good tips, but here’s a little bit that I had to worry about when on chemo because my blood counts dropped.
    Some food restrictions depend on the blood counts because of risk of infection… I was restricted to only cooked veggies. I wasn’t allowed to eat raw veggies because of the risk of contamination. Same goes for fruits, although if I washed the outer layer and peeled it I could have bananas, oranges, apples, etc. I washed them WELL and washed the knife constantly while cutting.
    I found I lost my taste for certain foods. Tomato sauce was one, maybe because of the acidity? Not sure. I’m okay with it now, but never got my love for plain old spaghetti back.
    Oh, and try to cut down on processed sugars. Sugar, sucralose, fructose, high fructose corn syrup, etc. I try, but refuse to give up my chocolate!
    I hope you have a wonderful trip, and can leave SOME of the worry behind, if only for a short while.

Viewing 15 posts - 1 through 15 (of 26 total)
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