Mom's Oncology Appt

Ginny_B
Ginny_B Member Posts: 532
in Esophageal Cancer #1
We finally met with our new Oncologist. My brother and I liked him. He concurred with Dr. Nagourney's assessment and will begin chemo. I think it will be low dose 5FU and Carbo via picc line. We can proceed with both chemo and rads.

He said she is Stage 3. I asked for the TNM numbers and he wrote it for me on a post-it: Stage 3(TxN2M0).

Our goal is to shrink it, stop the spread, and kill it. 40% cure rate. That's not a really high number, but it gives hope.

He asked mom some questions and she told him she has horrific pain eating especially in the a.m. He jumped on that. He said you have Morphine Sulfer - are you taking it. Mom then told him she sort of self-prescribes when she takes it, and that she only takes 1 pill in the evening and nothing else until the next evening. He was all over her for that (in a very very gentle way). He said it's effects only last 12 hours and she must take it every 12 hours. She said she hates the woozy feeling. He said she needs to eat more to avoid that feeling. She balked at that. He then told her if she doesn't eat, she'll weaken, and then treatment will have to stop. She didn't like that. He said you must take your meds! He asked her about Vicodin and she said she won't take it because it constipates her. He said she has to take it 30 min before eating! I told him that she has an Rx for constipation. He told her to take everything as prescribed.

Man! This has been my biggest battle with my mom. She refuses to take meds! When I cajole or even argue, she tells me I'm mean. He asked if she takes Ensure. I told him she takes Boost Plus - the she said she only drinks 1/2 can and dilutes it because it has too much sugar. He told her she needs to drink the whole can and that right now sugar is not her enemy. Again, this is my mom self-prescribing what she should/shouldn't eat/drink. She hears the news and then sort of goes overboard with all the media do's and don'ts.

That's it for now. At least we know a stage!

Comments

  • TerryV
    TerryV Member Posts: 887
    #2
    Progress! Whew....
    Ginny,

    It sounds like you've found a great oncologist. Someone to help you in the meds and food battle with your mom. His reasoning is sound. She needs to eat to maintain strength. She needs strength to complete treatment. and for once in her life, sugars and calorie counting be damned :) They don't matter!

    I'm glad for you. You're on the path now. We here with you.

    Prayers and lots of positive thinking!

    Terry
  • chemosmoker
    chemosmoker Member Posts: 501
    #3
    MOM got staged and is on to treatment now!! YAY!
    Ginny,
    Terry is right! Your mom has a good oncologist thank God! Stick with him and talk to him a lot and get his number for YOU to use!

    I would HIGHLY recommend that you call this doctor and ASK him if he could try your mom on OXYCONTIN for the 12 hour pain med and OXYCODONE for any breakthrough pain if even needed. I taken them. I TRIED Morphine. Woozy is right! Sleepy was worse. Felt sick and didn't want to take it. That said, the Oxycodone and Oxycontin (same drug different lengths of time they last is all) do NOT make me woozy or sleepy and don't mess with my vision as your mom is so sensitive to, and understandably so...
    The LAST thing I want is to lose my independence and Morphine would make me more dependent on Michelle as it had bad side effects. Every drug effects everyone differently for sure, but I would love to know if you mom might have the same GOOD experience with OXY and then NOT mind taking her meds, despite there not really being a choice. I would want her to be happy AND be able to see too.
    I am glad to finally know what her stage is, as I am sure you are, too.
    Now on with the treatments! She can't self-prescribe the IV chemo, but if they give her any PILLS such as 5FU (I am NOT a chemo kid as you all know, so forgive me if I have this wrong) but if she is fighting taking PAIN pills you are going to need to count and monitor her chemotherapy pills at first anyway to make sure she is taking those for sure! Hate to say that but I DID. I care as you do.

    Vicodin and Hydrocodone are worse than the Morphine if you ask ME. Oxycodone is in a class of its own after taking every drug they have for pain. I am hoping this will mean a possible solution. Worth a try.

    Hey, 40% sure does beat 3% (my original possibility with chemo for survival at 5 years) and I am at a 0% as of right now. That's a low number! LOL. I am in great spirits. I just have to face facts and I think I like Mom's better for sure! Run with them numbers!

    I am so grateful that she has you to go with her and help her. I KNOW it must hurt when she gets mad at you. But don't let up, she loves you and needs you and you are doing her such a great service being there for her and with her and to remember what was said and remind her to do as she was told! She is going to BE mom. She sounds VERY independent. I applaud her, until she is not taking her meds or eating. Just keep doing what you are doing. I am so proud of you and I will give you the kudos you need and deserve, we all will here. Mom will be mad, we will be supportive and proud.

    I don't expect to see mom posting here at 84. I also understand not going for surgery with her age. I am glad they are doing "gentle" chemo to start. Do ME one favor, and if it gets to be too much and you see it taking mom down too fast, stand in the gap, as Michelle says, and say something then, too. That's my 2 cents worth.

    I am here for you and so glad you got this far. Looking forward to more from you two soon.

    God bless and here's to a better weekend.
    -Eric
  • Ginny_B
    Ginny_B Member Posts: 532
    #4
    chemosmoker said:

    MOM got staged and is on to treatment now!! YAY!
    Ginny,
    Terry is right! Your mom has a good oncologist thank God! Stick with him and talk to him a lot and get his number for YOU to use!

    I would HIGHLY recommend that you call this doctor and ASK him if he could try your mom on OXYCONTIN for the 12 hour pain med and OXYCODONE for any breakthrough pain if even needed. I taken them. I TRIED Morphine. Woozy is right! Sleepy was worse. Felt sick and didn't want to take it. That said, the Oxycodone and Oxycontin (same drug different lengths of time they last is all) do NOT make me woozy or sleepy and don't mess with my vision as your mom is so sensitive to, and understandably so...
    The LAST thing I want is to lose my independence and Morphine would make me more dependent on Michelle as it had bad side effects. Every drug effects everyone differently for sure, but I would love to know if you mom might have the same GOOD experience with OXY and then NOT mind taking her meds, despite there not really being a choice. I would want her to be happy AND be able to see too.
    I am glad to finally know what her stage is, as I am sure you are, too.
    Now on with the treatments! She can't self-prescribe the IV chemo, but if they give her any PILLS such as 5FU (I am NOT a chemo kid as you all know, so forgive me if I have this wrong) but if she is fighting taking PAIN pills you are going to need to count and monitor her chemotherapy pills at first anyway to make sure she is taking those for sure! Hate to say that but I DID. I care as you do.

    Vicodin and Hydrocodone are worse than the Morphine if you ask ME. Oxycodone is in a class of its own after taking every drug they have for pain. I am hoping this will mean a possible solution. Worth a try.

    Hey, 40% sure does beat 3% (my original possibility with chemo for survival at 5 years) and I am at a 0% as of right now. That's a low number! LOL. I am in great spirits. I just have to face facts and I think I like Mom's better for sure! Run with them numbers!

    I am so grateful that she has you to go with her and help her. I KNOW it must hurt when she gets mad at you. But don't let up, she loves you and needs you and you are doing her such a great service being there for her and with her and to remember what was said and remind her to do as she was told! She is going to BE mom. She sounds VERY independent. I applaud her, until she is not taking her meds or eating. Just keep doing what you are doing. I am so proud of you and I will give you the kudos you need and deserve, we all will here. Mom will be mad, we will be supportive and proud.

    I don't expect to see mom posting here at 84. I also understand not going for surgery with her age. I am glad they are doing "gentle" chemo to start. Do ME one favor, and if it gets to be too much and you see it taking mom down too fast, stand in the gap, as Michelle says, and say something then, too. That's my 2 cents worth.

    I am here for you and so glad you got this far. Looking forward to more from you two soon.

    God bless and here's to a better weekend.
    -Eric

    Eric--thanks for the tip on
    Eric--thanks for the tip on the Oxy info. Two different types. Pardon my ignorance but what is "breakthrough pain". Is that the pain that hits fast and hard like when she's eating? And why does she have so much pain at breakfast than at lunch or dinner? Who should I ask about those drugs? The Oncologist, Radiologist, or her Internal Med doc? I think I'll ask the next doc I see.

    I think mom sometimes lashes out and I'm kinda the person on the spot. Tonight she was sweet and grateful and thanking me.

    She also takes 25mg of Atenolol (beta blocker for HBP). I know that drug causes dizziness because hubby takes it for his bum heart. 10mg made him very dizzy so he cuts his pills in half. I am going to call her primary doc and ask about the dizziness. I thought Oxy was a really really strong pain killer - like the Mercedes of all painkillers.

    Eric, I don't know how you can be so cheerful and helpful and uplifting. But then why not, eh? My brother and I are pleased with the 40% number. I think that's a good high number that we can hold on to. My fear is that it goes away and everyone is happy, but then it will come back and she'll feel so down. (Like the movie Brian's Song.)

    I do like the Oncologist very much. A nice young man with a great sense of humor and so kind to my mom. All of her doctors have been super kind. They gave me a packet of info at the front desk and it's overwhelming. Then front desk staff is also very nice. We lucked out with the great people we've come in contact with.

    I'm going to go watch UCLA lose to Arizona. Poor Bruins.
  • chemosmoker
    chemosmoker Member Posts: 501
    #5
    Ginny_B said:

    Eric--thanks for the tip on
    Eric--thanks for the tip on the Oxy info. Two different types. Pardon my ignorance but what is "breakthrough pain". Is that the pain that hits fast and hard like when she's eating? And why does she have so much pain at breakfast than at lunch or dinner? Who should I ask about those drugs? The Oncologist, Radiologist, or her Internal Med doc? I think I'll ask the next doc I see.

    I think mom sometimes lashes out and I'm kinda the person on the spot. Tonight she was sweet and grateful and thanking me.

    She also takes 25mg of Atenolol (beta blocker for HBP). I know that drug causes dizziness because hubby takes it for his bum heart. 10mg made him very dizzy so he cuts his pills in half. I am going to call her primary doc and ask about the dizziness. I thought Oxy was a really really strong pain killer - like the Mercedes of all painkillers.

    Eric, I don't know how you can be so cheerful and helpful and uplifting. But then why not, eh? My brother and I are pleased with the 40% number. I think that's a good high number that we can hold on to. My fear is that it goes away and everyone is happy, but then it will come back and she'll feel so down. (Like the movie Brian's Song.)

    I do like the Oncologist very much. A nice young man with a great sense of humor and so kind to my mom. All of her doctors have been super kind. They gave me a packet of info at the front desk and it's overwhelming. Then front desk staff is also very nice. We lucked out with the great people we've come in contact with.

    I'm going to go watch UCLA lose to Arizona. Poor Bruins.

    Breakthrough pain and morning pain...MY OPINION...
    Ginny,
    This is my opinion of course. Just so you know, I am not a doctor. And I don't play one on here! lol

    Yes breakthrough pain is the pain that BREAKS THROUGH the 12 hour medication and comes on out of nowhere. It is the kind she gets after breakfast I would say. Any time there is sudden pain or pain before time for the next dosage of the 12 hour pain meds.

    As for the worst pain at breakfast, mine is the exact same way.
    My pain is worst in the morning than it is at ANY other time, by a long shot. I wake up hurting and have to take my long-acting, short-acting and usually an ativan as well, then I sit there for 30 minutes or more, not moving, and as the pills start to work, I start to become Eric and human again, slowly. It is a daily battle. Then I get another blessed day as Eric, no drugged feelings, no euphoria, no 'buzz', just no pain, thank God!

    I think it is because I have just been asleep and my body has gone the longest time that it does with no circulation or movement, and no pain medication going in since bedtime or before, whenever it was last due. As a result, my pain level in the morning, and after my stomach and esophagus has 'rested' all night long, and now I am asking it to do work again (eat, swallow) the pain is worse. It's like having a sore throat in the morning that clears up as you are awake for a while, or getting any other part of your body going again after laying still all night and not moving or working.

    NO other drugs by the Oxycodone has provided me this without some type of side effect, Morphine being the WORST for side effects. So DO ask. Oxycodone is not the strongest drug by a long shot, just a really good one. Morphine is 'stronger' for what that's worth. So is Dilaudid.

    Ask her ONCOLOGIST EVERYTHING, especially about these drugs. Tell him about her not wanting to take the Morphine as it makes her vision worse, and she might not have these side effects with Oxycodone, and would he be willing to try her on that for a chance at something that will work AND make her happy as well?? Willing to TAKE it is the key here, but ask her Oncologist everything from now on. Tell the internal medicine doctor all this as well, but from HERE ON, I would HIGHLY recommend telling everything to her oncologist, and leaning on him to be the PRIMARY doctor in her life, until she is released from his care. PERIOD.

    Make sure HE knows about the other BP medications you mentioned and ANYTHING else that she takes. ANYTHING!! Herbal, over the counter, anything, as some of these things can cause major problems with chemo and with pain meds and so on and so forth, and this one doctor is going to have her LIFE in his hands, he MUST know EVERY single thing that she takes, including herbal teas, fish oil, vitamins. Everything. Enough said? I learned SO much from sharing stuff with my Oncologist and also saved myself a LOT of heartache that I avoided thanks to this honest sharing.

    I am so proud of you for standing in the gap for your mom. You are doing great.
    -Eric

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