positivity

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  • in reply to: Liver enzyme levels jumping up? #96985
    positivity
    Spectator

    I want to share when one does not have chemotherapy.  The liver enzymes still fluctuated and would get very high when the obstruction increased or the stents would no longer work.  They would also rise when person is given a lot of pain medication.  Does he use stents to relieve the biliary obstruction?

    in reply to: Scan results May 14,2018 #96984
    positivity
    Spectator

    I would definitely email the oncologist.  You must be proactive and not deny yourself open communication.  Never be in the dark and always ask questions.  Did he say why he wants to continue Gemzar if one tumor grew, even though the other shrunk?

    in reply to: Moral #96861
    positivity
    Spectator

    Hello,

    Thank you for sharing.  As I have stated before, it takes courage to share your story.  You will find the strength to be there for your daughter and be there for each other.  That’s what counts!  Pets, especially dogs 🙂  can be comforting and offer that peace one needs during the challenges.  Encourage her to join a support community for breast cancer survivors so she can share her experiences with others going through the same, and psychologically this will help her.

    All the best to both of you.

    in reply to: V3-X therapeutic vaccine #96821
    positivity
    Spectator

    Interesting that this is a vaccine.  I have never heard of it, obviously since it is a trial.  Let us know how effective it is.  Did you ask the researcher if there were any other studies or how other patients are doing in the trial, unless it just started.

    in reply to: Mom of Adult CC Patient #96774
    positivity
    Spectator

    Thank you for sharing your story. It is difficult for all loved ones to be part of the journey.  I hope he does also take control of his health, in addition to what is offered in the medical community.  It sounds like he has a strong family support which is very important.  Keep asking questions to your medical team and be part of his care by being informed.  This is a great place for the latest research and what symptom management has been effective for other individuals.  Keep us posted.

    in reply to: Replace of Stent #96664
    positivity
    Spectator

    Hello Aroha,

    Thank you for joining this forum and sharing your story. Congratulations on your marriage.  The more patients and caretaker, the better we understand this condition and more effectively we support one another.

    I can understand the frustration with stents.  My mom had plastic stents for about a year and were supposed to last three months, but after several months realized the life span of the stents were shorter.  It seemed to create more sludge and increase the bilirubin and jaundice and would need replacement every two months.  The more I understood stents the more I realized it probably inflames the area  and increases liver enzymes, but there was no way around it.  The GI doctor recommended the plastic stents since he thought metal stents would be harder to remove.  I don’t totally agree with his point as now that I have more knowledge telling us that metal is for shorter term survival (again this is his point of view and I have read studies that this is not the case)  Regardless of survival, better methods and studies need to be implemented for better quality of stents to last longer as they get occluded quickly and require hospital stays which was our case.  It got so bad that plastic stents were no longer effective and she has a percutaneous drain to drain the bile.  Those repetitive stents exchanges were hard for her body.

    Also, to address the weight loss, it seems to be a symptom of this condition, since it is in the GI area which has to do with bile and digesting food.  She did not have chemo or radiation and still lost an extreme amount of weight which is difficult to regain.

    in reply to: Hi Everyone #96551
    positivity
    Spectator

    Yes Joviony,

    It seems when one wants a break, it is short lived before something else comes along.  With my experience, observation time was every week which turned to every day and things could be stable one week then all of a sudden the following week a symptom reoccurs and medical attention is needed once more.  It is continuous whether one is on treatment or one is not on treatment.  The key is to be knowledgeable and keep up with the latest research and trials making the best decision for your case.

    in reply to: CCF Annual Meeting 2018 – Can’t make it to Salt Lake? #96550
    positivity
    Spectator

    Thank you! As much as I wanted to meet everyone due to financial constraints I cannot make it.  It would have been great to connect in person.  Everyone is lucky to attend and hopefully can learn a lot and perhaps connect to wonderful people that can help them along this journey.

    I will check it out!

     

    in reply to: Hi From Puerto Rico #96499
    positivity
    Spectator

    Joviony,

    Please receive my condolences during this difficult time.  All of us understand the tough fight against this illness and it takes everything we have got.  You have been an incredible support to her.  As family members, all of us want no suffering and want comfort for our loved one.  Thanks to this board you were able to share your courageous story as we continue to someday get promising advances to fight, as you mentioned CC and even pancreatic cancer.

    Peace to you and family.

    in reply to: CANNABIS OIL & CHEMO? #96485
    positivity
    Spectator

    Thanks for the question, as this is the same one I have.

    To briefly share the story, even though I have multiple posts.  Mom was inoperable and we decided on no treatment, only palliative care.  This is going over a year after diagnosis, but found out with research that she has had this awful tumor for about four years not, obviously getting worse.  The worst part was those stent exchanges!  Anyway, long story short, last recommendation was hospice.  She was prescribed Norco and Dilaudid for different levels of pain, Dilaudid when it’s unbearable.  Atarax for jaundice itching, which isn’t as effective anymore so relies on Norco.  Now since in obvious circumstances there is nothing to lose, I will check into cannabis for pain management.  This is something so difficult to even convince her to use.  Once she tries it, I will share. Seriously, if someone is recommended at hospice what can one lose? Either it works or doesn’t and that’s it!  This has been an endless challenge, and more power to everyone who is fighting this illness.  I really have to thank everyone, patient and caretaker who tries hard to help.

    • This reply was modified 5 years ago by positivity.
    positivity
    Spectator

    Hello,
    I don’t know how to help, but share my experience.

    My mom was not operable and when doctors spoke to her at the onset of diagnosis, a couple of them said she will eventually feel extreme abdominal pain.  The bad news of diagnosis was enough and to hear what will happen added to it.  She experienced pain always when the stents no longer worked or high bilirubin or just the nature of bile duct progression.  She was able to stay away from pain meds for about 9 months, but it got to a point where she had to take Norco for the pain.  It seems she gets it on right side and occasionally all over. I always recommend everyone to have a pain management program set up from the beginning, not to wait until experiencing pain. We looked into it later.  What have you discussed for pain management?  Explore and learn about pain management and ask your doctors about options.

    in reply to: Hello -Husband diagnosed with Cholangia Carcenoma #96438
    positivity
    Spectator

    Hello Kate,

    I feel for you as all do on this forum.  We start with the shock as most of us have not heard of this cancer until there is a diagnosis, and there are endless surprises.  It seems most people with CC have similar symptoms yet unique responses to treatment and other underlying health issues which add to the challenge.  I felt the frustration many times as the lack of treatment options and in my case had to accept, as it was difficult for my mom’s case.  It is so individual as no one knows what can work for one person may or may not for another.

    We could not do chemo as it would have been harmful for my mom since she had a simultaneous condition of chronic anemia similar to what people experience when under chemo, so we made the smart choice on not to do it.  I hit a road block many times and as her condition has worsened realized I still made a smart choice as odd as it sounds.  I understand the frustration of multiple stent exchanges through ERCPs also as I got to the point in thinking this must help control bilirubin levels, but at the same time harming the bile ducts and creating more disruption in the area.  I had a tough time tackling that one, so it’s interesting when I hear patients who don’t need stents as most CC patients do, demonstrating how unique each CC patient is.  Also, we did get different opinions over the course of a year from doctors, some saying chemo won’t help at all and some pushing it.  I hope these new clinical trials will make a difference in treatment options for everyone. My mom unfortunately won’t be part of it, but anyone who is afflicted in the future.  We need those bright scientists to keep the testing going.

    in reply to: New to this #96411
    positivity
    Spectator

    Hello,
    Thank for sharing on our site, it makes it easier for everyone to understand this challenging condition.  It is great that surgery worked for your mother.  Was the tumor close to any vein such as the portal vein or covering any ducts like the left or right hepatic duct?  What do they mean the tumor broke?  Does that mean it spread or there are remnants of the tumor still in the body?

    I have found from experience you have to closely monitor symptoms on a weekly basis.  Choosing the available treatments is a personal choice and it would be difficult for anyone to give guidance on what you should choose as the best for your mom.  I have discovered CC has many similarities, but somehow is different for everyone.

    Since she is feeling well and healthy after surgery, offer her great nutrition support and anything else that will give her comfort and joy.  Again, keep monitoring for any symptoms such as pain or any discomfort.  Get another doctors opinion if anything needs to be done at this point or you can wait.  This is not an easy situation, but don’t act out of panic or feeling the need to act so quickly without looking at all your options.  You are right in that studies have shown that the standard of care which is gem/cis does not have a high success rate, but in your situation is this what is being offered?

    My opinion is that it is great the surgery was a success and if doctors said it is okay to monitor, why rush into a treatment such as chemo which will make your mom feel very weak and compromise her immunity and if she is already feeling healthy, wait until anything changes.  (only my opinion, not advice as you know your mom and her situation better)

    Keep researching our site and update yourself on this condition, it is definitely not something to ignore as it is a life changer.  You must monitor week by week and act accordingly.

    I hope something helped, and I know others will offer advice and tips.

    • This reply was modified 5 years ago by positivity.
    in reply to: MD Anderson #96408
    positivity
    Spectator

    Mary,

    You do the online research first and hopefully find a few possible oncologists.  It’s true that you will know at the initial consultation whether you want to continue with the doctor.  However, you can check ahead of time whether the doctor has experience treating CC patients.  Also, this can’t be the only factor.  I chose someone who supposedly is experienced in treating CC, but when meeting, he could only offer the standard treatment of gem/cis which I did not like.  He could not provide any clinical trial options.  So if this is important, check ahead of time if the doctor is open to clinical trials and whether their facility has access.

    If the doctor is far away, is there a way you can speak by phone or contact by email first?  I know this can be difficult as they like to bill for their time, but maybe you can get a few questions answered before spending the time or money for the visit.  Think of a few questions that are important before visiting the doctor and whether that will impact you choosing them as the treatment oncologist and see whether you can have them answered in advance.

    This is a challenge for sure, but you can choose the right doctor, and don’t be afraid if you decide you need to change.  Sometimes, I felt certain doctors did not know what to offer either and they were limited with resources.  Again, have them give examples of patients treated successfully, and keep doing your research on updates for treating CC.

    in reply to: MD Anderson #96405
    positivity
    Spectator

    Hello Fay,

    I don’t have experience with MD Anderson, but this is the criteria I have considered when visiting multiple doctors.

    1. They have to be patient and not pushy for a particular treatment while not offering alternatives.  This means one doctor was so pushy in his treatment plan and made it seem if we don’t start right away we will face poor consequences, yet mentioned there is no guarantee with any treatment working.  I don’t like pushy doctors who have nothing to offer, but one mode of treatment and aren’t realistic by looking at the individual patient and treating all patients the same.

    2. Easy communication whether calling their office, emailing them, and they being responsive and answering questions, not trying to dodge the questions or not being forthright.  Sometimes they can be negative, but if it’s realistic, so be it, but not in an effort to no longer help patient because they are at the end of stage.

    3.  Are you comfortable with them and are they listening to all your concerns or do you feel rushed like you are just another patient?  If they are rude or overly negative in a very difficult situation, then reconsider.

    4.  Find a doctor who is genuinely curious and wants to find answers or try clinical trials, not a close minded doctor.  Have him/her give examples of people they have treated with CC. Some can’t do this or not willing to give examples.

     

    Hopefully this helped as a starting point, but be open to several doctors.  Obviously there will be a team and it is not just looking for an oncologist, but a GI doctor, perhaps a radiologist or surgeon, or any other specialty doctor for any other condition you may be experiencing as well as the CC.  It’s great you are doing the research!  It is really up to you if you want to meet this doctor and judge for yourself.  You will know if you don’t want to work from her.

Viewing 15 posts - 16 through 30 (of 281 total)