What’s next

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  • #56449
    mn
    Spectator

    Hi Shar,

    I’m glad your mom is feeling better now that her stents were replaced. The Dr’s should advise on what to do next. In my mothers situation they wanted to start a new treatment. However, He also stated that it was going to be tough on my mothers system and that when the tested the tumor, it didn’t have any reaction to it. The Dr. did know that my mom wanted to keep fighting this.

    When we went for the second opinion, the dr. suggested the same thing, but then offered two different pills to help prolong life, since they figured my moms quality of life would suffer from the chemo. My mom had both chemo cocktails your mom was on. They wanted to do Irenok…(not sure about spelling). My mom chose to focus on quality of life than trying to deal with the chemo. Since my moms original surgery to have her gallbladder removed she only had one problem after another.

    Hope that information helps. The one thing I wish we knew earlier was knoing about palliative care. My mom needed lots of shots after her chemo treatments and she didn’t want to do them herself, so we would go down to the hospital every day to do this. After awhile, she wasn’t able to make the trip by walking. We had to get her a wheel chair. However, had we known about palliative care, a nurse would have come to the house to do the shots. On a bright note, it got us out of the house and we always went to lunch afterwards.

    Take care of your momma and yourself during this time.

    Hugs to you,
    Michelle

    #56448
    lainy
    Spectator

    Hi Shar, glad Mom went through the exchange ok. Sorry but I don’t think most of your questions about chemo have an answer. We just don’t know. I do know that when the ONC felt Teddy would not gain anything by having chemo he did offer Palliative chemo and Teddy said no. Not sure they will say you can’t have it but will let you know instead that it probably will not help. Our ONC was excellent and guided us all the way and helped us make decisions eventhough the final was Teddy’s decision. Try to take each day and not jump so far ahead. The ONC will guide you, you are not alone.

    #56447
    shar
    Member

    Mom had another ERCP yesterday and they did replace her stent. Unfortunately they also found that the tumor had grown and had in fact pushed the old stent out of place. This time they tried putting in two stents but did tell us that if this doesn’t work they will have to go with an external stent.

    Mom is doing okay although I don’t think the “fog” has cleared enough for her to completely understand everything she was told yesterday.

    My question is what should we expect the oncologist to say about another type of chemo. Mom is 75 and has tried Gem/Cispl and was currently on 5fu/Oxipl because of tumor growth during the initial chemo. The GI dr said that chemo doesn’t stop CC but the hope is to slow the growth. However how do you measure slowed growth. There is no way to no how fast it would have grown without chemo. My point is the chemo hasn’t stopped it from growing but how do we know it hasn’t slowed it down? At what point do they stop recommending chemo? Do they ever tell you it is no longer an option?

    #56446
    wallsm1
    Spectator

    Shar, I agree you should ask them. You have a right to know the treatment plan and what options you have. I’m sure you must be so frustrated. Thoughts and prayers are with you.

    Best wishes,

    Susie

    #56445
    mk
    Spectator

    Shar, I also think you should ask the doctors. It might feel a scary thing to do, especially if you are worried about their answers, but it’s better to have an answer than not knowing. Also, do ask them about the fluid retention. No matter what it is, they might provide her with medication straight away in order to tackle the problem. Perhaps you could ask about that over the phone even rather than have to wait until the next appointment?

    My warmest wishes to you and your mum. Keep us updated.

    #56444
    lainy
    Spectator

    Shar, I am wondering if you should ask the Doctors if they are giving up? You have a right to know that and you have the right to another opinion. I would just bluntly ask, ‘what do we do now?”. We were kept aprised of Teddy’s CC all along the way.
    I just noticed that you are from Wisconsin. I am from Milwaukee. Well, I lived there for 35 years.

    #6179
    shar
    Member

    Things seem to be changing with my mom. We have noticed that the MD’s don’t seem to be moving as quickly to get her appointments for tests. We currently were told that it will be a week or two before she can get an appointment for an ERCP. Her bili is climbing again (7.4) and last time this happened they moved so quickly to get it resolved.

    I asked if we couldn’t move faster because she is getting weaker and I was told that replacing the stent will not bring her strenghth back that is the cancer progressing. We are also seeing the fluid retention which she has had before but this time it seems to be in her belly also. Is this ascities? She tells us that she is in no pain just minor discomfort in her back.

    No one has told us that there is nothing more that can be done, but there is no talk of restarting chemo (it was stopped two weeks ago due to a blood infection) and the pace that we are moving seems to have slowed way down.

    I wonder if they are giving up.

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