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Viewing 7 posts - 31 through 37 (of 37 total)
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  • in reply to: UPDATE ON DISAILIBTY /CC #84011
    deadlift
    Participant

    curious what all did you have to send in for social security? i filled the web form out and it said to mail in medical records. like all of them?!

    in reply to: Gem/Cis – Weighing Options #93104
    deadlift
    Participant
    HelpForMom2016 wrote:
    Thank you Deadlift. She feels better when things coat her stomach but maybe not while on chemo.
    By dense I mean with calories, not necessarily the consistency. But very good point. Protein is the macro she needs the most. Her meals will remain few but they need to count. She doesnt drink tea, hates drinking water. It will be interesting to see how this goes.

    Cold sensitivity due to Oxaliplatin will actually nix the smoothies idea I had….. hot soups I guess. Not sure how long that lasts. Going in blind it feels like- hope I do well.

    :) Yes Marions. I have a bag packed. We will have our private room with TV, fridge, microwave.
    We will be there all day so I brought dominos, cards, our adult coloring books, snacks, warm socks for her. She may sleep if shes not too anxious so Ill bring her best pillow.

    understood via calories. problem is, fat is the most dense, but typically not a good idea on the diets that work for CC. That’s why whey and fairlife skim milk are great. loaded with protein, and no fat. Not thick either. sometimes I would even just mix with water for the wife, cause of the cold sensitivity. 8oz milk with the whey at room temperature also wasn’t very cold.
    good luck. Food is very tricky for my wife so I understand the feels.

    in reply to: Gem/Cis – Weighing Options #93100
    deadlift
    Participant
    HelpForMom2016 wrote:
    Thank you Deb! Nutritiously dense smoothies are a great idea.
    Ill check it out!

    Careful with dense, depending on what the calorie macros are. My wife has super issues with fat and fiber, which makes it harder to get dense food.

    also this summer is a discount at myprotein.com ; I get the unflavored whey isolate which is very very easy to digest for myself and my wife, and mix it with fat free fairlife milk(which is also no fat, not much sugar but extra protein. We add ripe banana or herseys powder or syrup. My wife lived on that during chemo.

    I say myprotein as they have wild discounts and it’s the cheapest high quality whey i’ve found (i have eaten a LOT of whey trust me) .

    fwiw isolate is also ok for people with dairy issues as it is lactose free.

    deadlift
    Participant
    bostonguy wrote:
    Marion, thanks for the suggestion. Fortunately my mother has minimal evidence of biliary obstruction with a total bilirubin of 0.4 (direct bili 0.1). That unfortunately means biliary decompression would be unlikely to be of much benefit. It is certainly something that is important in the management of CCA though, in particular if there are signs of cholangitis or worsening biliary obstruction.

    May or may not be helpful but my wife’s nausea these days seems to be fully tied to what she eats, and when she takes her meds and supplements. She has a ton of alarms to tell her to eat, then take a pill then to eat then take a pill. She is also on narcotics so that may also make a difference, as she also has to manage the side effects of the narcotics which also cause Gi issues.

    good luck

    in reply to: Hi new to site; caregiver #93048
    deadlift
    Participant
    Vallerina wrote:
    Hi Deadlift,
    I’m so sorry that you are going thru this. My dad was diagnosed in July after about 6 months of tests,etc. My dad has one large tumor and 5 small ones, all in the bile ducts. You mentioned your wife is in the AG-120 trial. Has she been diagnosed with IDH-1 mutation. My dad has that. He has done two chemo treatments of Gem/Cis, so far.

    Anyway, I will be thinking of you and your family. I’m glad that you found this forum. It’s been a huge help to me.

    Vallerina

    I believe the mutation is a prerequisite for the trial. I think she does yah

    in reply to: Hello #93009
    deadlift
    Participant

    Thanks for all the kindness here.

    I didn’t know about all the risks from the stents however it was either stent or jaundice so nothing much to do with that. I think her’s is titanium not plastic, or titanium and plastic coated? either way it’s non-ferrous as she’s had plenty of MRis in the meantime.

    She was getting Chemo fairly local, but we’ve since given up on that and are doing the ag120 trial. This is through MSKCC . She had seen the head of oncology i think, and also the chief of surgery but at the time they said start chemo as any surgical option would take too long to set up given how fast the tumors were growing. The head of oncology left for another office so she’s seeing someone else at MSKCC; all that really means to me though is she’s at the clinical trial. wait and see. Near as I can tell if the ag120 isn’t effective they would go folfuri(spelling) chemo next?

    I used to bike, i don’t like leaving the house much, cause i can’t leave wife in charge of kid as she is tired and weak, and I only want to leave him with baby sitters so much. We have someone for him from 230-7 or later on mtw, but I need to have time with him specifically to keep his love meter high so to speak.

    in reply to: Hi new to site; caregiver #93046
    deadlift
    Participant

    thanks jpmski ; tough spot for sure. Wait and see is not my best trait either.

    Thankfully the next two weeks while kiddo is out of school my mother is coming to visit to help with kid while I work. Kid is ASD so, we also get respite from the state to about 20 hours or so which helps a ton. Out of all of this seeing how he understands and sees what’s going on is the worst. I can deal with everything else in my own way but struggling on how to protect him is the worst.

Viewing 7 posts - 31 through 37 (of 37 total)