Discussion Board Forums Introductions! Hello from Houston, first post, sister with Cholangio

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  • #95253
    marions
    Moderator

    Jonas….good to hear that all test results came back as normal. I wonder, have they checked her potassium level? Just thinking out loud. It may or may not provide some answers re: Myrna’s occasional state of confusion.

    Thinking of you and sending a tidal wave of good wishes your way,

    Hugs
    Marion

    #95252
    lainy
    Participant

    Jonas, I am happy to read Myrna is having the drain changed today. These infections can really bring one down and I am hoping that with the drain change and all the meds kicking in that she starts to come around much better. My thoughts and prayers and everything good is sailing out to you and your family. Hang in and hang on CC is always a bumpy ride.

    #95251
    jjgunny
    Member

    Hi Lainy,

    Thank you for your reply. They are treating Myrna for a presumed infection, although all of her cultures have been negative thus far. She has been on broad antibiotics since admission. She has been stable, out of the ICU for the past 2 days, unfortunately her mental status has gotten pretty poor. She has trouble recognizing us sometimes and pretty much just says “yeah” to most questions. I’m hoping it’s temporary, because all of her labs are actually getting much better, but supportive med is telling me that this sometimes just goes hand in hand with advanced cancer. She is getting her biliary drain exchanged today and also going for a head CT to make sure she didn’t have a spontaneous bleed while her platelets were very low. Regarding hospice, the thought had certainly crossed my mind, but that is something I will need to discuss with my family, including Myrna hopefully if her confusion resolves. She has a great supportive medicine team and the topic has been breached. She is definitely at a low point right now, the lowest so far, and we are hoping that she can come back from this for at least a few more good months.

    Lainy wrote:
    Dear Jonas, I am so very sorry to read about your wonderful Sister, Myrna. My husband, Teddy fought a good fight with CC for 5 years and then “relocated” 6 1/2 years ago. He may be out of sight but he is with me all the time, even approves that I am not alone anymore but with a wonderful companion as life is for the living.
    Myrna is being treated at a good place but I have just a couple of comments. I am curious about the recent trip to the Hospital. Did they ever do a blood culture to make sure there was no blood infection which can happen so easily with Biliary drains. Teddy used to get them often and it turned out the drain was clogged or infected. A simple IV of Levaquin took care of the problem. But a blood culture is needed.
    Please, try to look upon Hospice as an aid not an end. Most of them will start coming to homes a year out. They will not only help Myra in every way but will also help the family. I have recently retired from this Board but check in now and then as I cannot stay away and I had to answer your Post. It is so important that Myrna does not use up what little energy she has by being stressed and Hospice will help with that as well. They can only help. If you are not happy with them, of course you can cancel the service.
    I am hoping for the very best for Myrna and your family. In the 6 years Teddy has been gone great strides have been made and we do have some hefty Miracles on our Board!
    #95250
    lainy
    Participant

    Dear Jonas, I am so very sorry to read about your wonderful Sister, Myrna. My husband, Teddy fought a good fight with CC for 5 years and then “relocated” 6 1/2 years ago. He may be out of sight but he is with me all the time, even approves that I am not alone anymore but with a wonderful companion as life is for the living.
    Myrna is being treated at a good place but I have just a couple of comments. I am curious about the recent trip to the Hospital. Did they ever do a blood culture to make sure there was no blood infection which can happen so easily with Biliary drains. Teddy used to get them often and it turned out the drain was clogged or infected. A simple IV of Levaquin took care of the problem. But a blood culture is needed.
    Please, try to look upon Hospice as an aid not an end. Most of them will start coming to homes a year out. They will not only help Myra in every way but will also help the family. I have recently retired from this Board but check in now and then as I cannot stay away and I had to answer your Post. It is so important that Myrna does not use up what little energy she has by being stressed and Hospice will help with that as well. They can only help. If you are not happy with them, of course you can cancel the service.
    I am hoping for the very best for Myrna and your family. In the 6 years Teddy has been gone great strides have been made and we do have some hefty Miracles on our Board!

    #95249
    bglass
    Moderator

    This discussion among mostly caregivers raises the following thought for me.

    I guess each family dynamic is different. My doctors have outlined treatment options, and I enjoy tremendous support and counsel from family members and friends. So far, however, my treatment decisions have been 100% taken by me. But there is always the possibility that I will need to rely more on others to take a more direct role in making treatment decisions for me in the future. I don’t look forward to that scenario.

    One of the horrible aspects of cancer is it makes you feel a loss of control over your life. Speaking as a patient, I would find it important that family members and caregivers not inadvertently manage things in a way that would make me feel like I have little say. I know this is hard if a patient is very ill, but preserving some sense of control would be valuable to my own well-being should that day come.

    Caregivers are heroes and make all the difference to patients, but at the same time as a patient it can be hard to speak up when you don’t feel well and life is spinning out of control. That was behind my earlier point about listening hard to patients for spoken and unspoken signals on treatment preferences.

    Regards, Mary

    #95248
    positivity
    Participant

    Very well expressed Mary and Marion. Each individual is unique from how a person responds to treatment and the choices they make. It is crucial as caretakers or family members to determine what is best in our situations. That is the challenge to choose what works best for our loved one, and have hope, but also be realistic. Doctors had no problem stating the facts and letting us know that this is not a good prognosis, and I have accepted what can develop in the future. It has not been an easy acceptance, but I am at the stage.

    Of course, I would like some amazing treatment to develop in the near future which has a success for many with CC, and always keep looking for possibilities. As of now, dealing with two severe conditions, we have chosen palliative care and quality of life. She gets blood transfusions, stent replacements, and maybe will have some sort of treatment to support anemia(not definite at this point). I don’t know what lies ahead, but with available information know what could happen. I am looking into pain management when the time arrives and waiting for molecular testing results.

    I think it is fantastic that chemo and radiation has been successful for many. Doctors should be honest and upfront and after seeing a handful, it was nice to have confirmation that the standard treatment would not help her case. This doesn’t mean not helping other cases, but her unique situation.

    Thanks everyone for sharing. I am grateful to have a community of people who share at the most sensitive moments.

    #95247
    bglass
    Moderator

    This chain has brought up so many fundamental questions that cancer patients and their families and caregivers confront.

    Let me add a patient perspective to the mix.

    Marion is spot on that the patient’s wishes regarding whether to pursue aggressive treatment (or not) must be listened to. Caregivers and family members are heroic in their support to a loved one with cancer, but please listen hard for and take note of stated and unstated signals regarding treatment preferences. It is also important to insist that doctors give a straight story. Sometimes in an effort to maintain hope, potential negative scenarios are not fully discussed. I sometimes say to my doctors “tell me straight about risks or downsides” and once or twice I heard something different or new in response, information that has helped me make plans for a possible worse case which I hope won’t happen, but I want to be prepared.

    The other observation speaking from my own experience is to look into hospice care early. This cancer takes unforeseen twists and turns and knowing as much as possible about all treatment options even the ones we don’t want to think about is important. There seems to be a fair degree of evidence that hospice can extend life in the end stages. It is a standard of care, not an act of giving up, that can help stabilize a patient, and enhance quality of life. In certain cases, patients might stabilize enough to resume treatment. This is not something I thought I would ever have to think about, but it is good to have this information as part of any research being undertaken, just in case the day comes when hospice becomes a consideration.

    Jonas, Myrna is so lucky to have you helping her through these difficult times. I hope she regains her strength and well-being.

    Regards, Mary

    P.S. As a patient, I want to add a shout out for chemo. Yes it is harsh and difficult, and may not be an appropriate choice for some patients. But chemo has extended life for many CCA patients with side effects that while unpleasant, are tolerable. Some patients become operable after chemo treatment. It is true that other treatments are on the horizon that may someday be more effective and easier to tolerate. In the meantime, chemotherapy is an important tool, and it is helpful for patients to get correct, evidence-based info about their chemo options — information that can address any fears rather than incite more fear.

    #95236
    marions
    Moderator

    positivity…..This board was developed for sharing of opinions, glad to see that you bring your point of view to our attention.

    My personal experience with this cancer as well as what I have learned as a member of this board for 11 years in additional to my professional function as clinical research/patient navigator and patient advocate has taught me to fully support the wishes of the patient. And, this leads me to the expression of “hope” and what it means to me.

    Simply said, having hope is to imagine a positive outcome.

    Again, this varies from person to person. As far as I recall, your Mom is not healthy enough to undergo cytotoxic (chemotherapy) treatments and also she is underweight. You choose to focus on building her immune system and the implementation of nutritional changes best suited to her. So, you are doing what you feel is right for her. Makes perfect sense for your Mom.

    However, this approach does not fit everyone and I wonder whether you would have a different viewpoint if things were different for your dear Mom. Would you consider chemotherapy if indeed your Mom could tolerate it?

    Myrna, wants to fight this cancer in a different way, that is understandable as well.

    And, what about the thousands of patients choosing active treatments with the variety of drugs available to us? We have seen some incredible responses to currently applicable treatment. Yes, there are side effects (some people experience it more than others) but most recover and are here to talk about it.

    Ultimately, we must remember that due to lack of funding rare cancer suffer from research neglect. Unlike the major cancers (breast, prostate, lung, etc) we simply don’t have enough data to fall back on. Phase III clinical trials are difficult to conduct (too few patients and too many late stage diagnosis), but we need the data of Phase III studies, which proves the advantage of one particular treatment vs the other.

    The good news is that the current research is focused on biologic agents such as immune checkpoint inhibitors and molecular drugs, which in turn addresses the molecular underpinnings of tumor growths. Immune checkpoint inhibitors allow T-cells to recognize cancer cells and thereby support the body to fight off these unwanted cancer cells. This is Personalized Medicine.

    Hugs and more power to all,

    Marion

    #95235
    positivity
    Participant

    This is only my opinion.
    I would think that chemo at this point would be too harsh and toxic for a body who is trying to fight and keep nutrients in the body and building immunity. Replenish her body with these nutrients through IVs, even if she needs blood transfusions or platelets, maybe this can be offered. Chemo compromises and lowers the immunity too much and can’t see how that will help. Definitely seek palliative care. Again, this is only my view. I know many choose to continue aggressive treatment.

    #95246
    karend
    Participant

    Hi Jonas,

    I am really thankful for your response, and to hear that Myrna has responded well to supportive treatments. The human spirit is awe-inspiring to me, and it must be so wonderful to see Myrna more alert.

    There are many postings on this forum which discuss single agent treatment with Gemzar, and from my knowledge, it is much easier to tolerate for some patients than the Cisplatin.

    I know that every day will be a challenge, but I hope that this forum is able to lend you some support even if virtually.

    -Karen

    #95245
    jjgunny
    Member
    KarenD wrote:
    Sometimes step 3 to 10 comes rapidly, and sometimes is does not. We cannot predict an individual’s lifespan. One of THE most difficult things working in oncology is the inability to prognosticate perfectly, because no one can. I am of course not there to see what is happening, but I do not think that the physicians are trying to hide anything in anyway. When it comes to having difficult discussions with patients/families, there is no script with which to follow.

    Jonas, Myrna sounds very sick, but there is absolutely no harm in getting her records together and getting second/third/fourth opinions because you never know what you will hear. You will have the peace of mind knowing you have done all you can as a brother/physician as well. If Myrna is afraid to receive hospice services, which is common, please do consider palliative care. As she is at MD Anderson, ask for consults from pain specialists for appropriate dosing, which as you know, will need continual assessment. Request a palliative care physician if this service is available so that they are a part of your sister’s team. She sounds very symptomatic, and palliative care specialists work hard to manage symptoms to avoid hospitalizations due to issues such as the dehydration induced by treatment/dysphagia/dehydration.

    I am speaking only as an experienced oncology nurse, but do be cautious and carefully consider chemotherapy if your sister’s performance status is poor. Chemotherapy absolutely can do more harm than good, and any oncologist worth his salt will tell you this as well. Gemzar/Cisplatin is however, the standard of care treatment for this cancer. Oncologists offer this because the current research supports this treatment. Another thought, if Myrna rebounds, think about other agents that she could have which are perhaps less taxing on her, other chemotherapeutics, or oral agents. Ask the oncologist. MD Anderson is one of the top hospitals for CCA in the nation, I have no doubt that they would be open to your educated questions.

    Is she doing better after having fluids/etc. in the ICU? Did her pressures come up? Is she more awake? I do so hope the admission helped her. I am thinking of you all.

    -Karen

    The information provided is not intended nor implied to be taken as medical advice. Please consult your health care provider if you have questions or concerns.

    Hi Karen,
    Thank you for your input. She is doing better today, she is off pressors, getting aggressive fluids and albumin, she is being moved out of the ICU to the floor tonight. They also placed a dobhoff tube to give her some tune feeding while she is in the hospital to try to get her weight up a bit. She does have supportive medicine, they were brought on board last time she was in the hospital, and they have definitely been helpful. She is more awake, and lucid most of the time. Her oncologist told me he is not giving up, and plans on proceeding with single agent gemcitabine in a few weeks if she gets better, which isn’t ideal but seems to be the only way forward. Myrna still wants to fight , she has a strong spirit and all the support in the world…but I can tell she is getting tired and disheartened.

    #95244
    karend
    Participant

    #95243
    marions
    Moderator

    Jjgunny…it’s so difficult to accept the seriousness of your sister’s current health condition. But, given the fact that they physician administered chemotherpay despite the high bilirubin count (7) when normally it should read 2. only shows how hard he is trying to change things for the better. You must know that all toxins are filtered by the liver and a compromised liver is incable of doing it’s job. Your sister must regain some of her strenghts and feel much better prior to moving on to another regimen.

    Hugs and love,
    Marion

    #95242
    jpmski
    Participant

    Jonas,

    You are in a shitty, shitty position. If you feel that they’re pushing hospice on you kind of out of the blue, which is probably pretty accurate, then it’s because they don’t want to have a hard conversation with and they know hospice will. Frankly, you should not be left guessing at this point as to what is the definitive opinion of Myrna’s doctors.

    If they jumped from Step 3 to Step 10 in your opinion, then you need to corner one or all of them and tell them to give it to you straight. My experience is that they will not do that unless you make it clear that they have to.

    The flip-side of that is you might not like what you hear. You’re sister needs some good luck to find its way to her.

    #95241
    jjgunny
    Member

    Myrna’s doctors are subtly trying to push hospice care on us, but she is not ready to give up and neither are we. I know she isn’t doing well but she has only had one round of chemo and I feel like she hasn’t even had a chance to really go through treatment yet. I think I am going to get all of records together and at least send them out to a few other centers just so I feel like I have exhausted all resources. Does anyone have any recommendations for physicians? Particularly ones who won’t shy away from aggressive treatment in these advanced, difficult cases? Again thank you all for your support and advice, I can’t even begin to express how comforting this group has been for me.

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