bglass

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Viewing 15 posts - 16 through 30 (of 646 total)
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  • bglass
    Moderator

    Hi Gap,

    Thank you for your posting.  Your note is a reminder of one of the challenges of having a rare and serious illness.  We wind up doing a great deal of research, trying to figure out an unfamiliar vocabulary.  I learned that my busy doctors did not always have the bandwidth to be constantly looking for new research – they had many patients with different cancers, and never enough time.  I usually bring some research with me to my appointments – not the whole library of course, but I usually pick one item I want to ask about.  At my last meeting, for example, I brought a graph showing cholangiocarcinoma  recurrence rates after five years because I wanted to defend the point that it is not yet time for me to stop having scans.

    I try to be careful to recognize I am not a doctor and my doctors are the experts, but our roles as patients and caregivers in keeping an eye on medical developments are important and no doubt appreciated by our medical providers.

    Big thanks to Gavin in helping our community stay up to date with the rapid advances in the field.  Gap, I hope your husband gets good news from his upcoming scan.

    Regards, Mary

    bglass
    Moderator

    Hi Gavin,

    This is a really interesting research study.  How fast adjuvant treatment can start after surgery often reflects how quickly the patient recovers from surgery.  We have heard from several patients posting here over the years about delays due to their own hesitancies about chemotherapy.  Now that many patients are offered adjuvant capecitabine in pill form which is easier than coming in for chemo infusions, options for adjuvant chemo are easier.

    The reasons given in the literature for not delaying adjuvant treatment mainly relate to a need to quickly “mop up” any stray cancer cells that were not removed by surgery.  Resection or Whipple surgeries are big ones, and your immune system may not be fully up to speed in the weeks after surgery to battle these stray cells.  The trauma to your body involved in having surgery (this is GOOD trauma, it is getting the tumor out) could also serve to activate any remaining cancer cells.  Hence surgery followed by adjuvant treatment, if recommended by your doctor, is viewed as a “one-two punch” in treating cholangiocarcinoma.

    Since I mentioned capecitabine, a reminder about the rare enzyme deficiency called DPD deficiency is important.  DPD deficiency, if you have it, means that capecitabine may be more toxic for you and less safely tolerated.  If your oncologist is offering capecitabine (xeloda), please tell him or her if you know you have a DPD deficiency.  You may want to ask whether you are a candidate for DPD deficiency testing well before starting adjuvant treatment because the test results may take a week or more.  If you start taking capecitabine and experience side effects that are more severe than what your oncologist said to expect, this must be immediately reported to your medical team.

    Take care, regards, Mary

    in reply to: 7 year survivor! #101641
    bglass
    Moderator

    Hi Mike,

    It is great to hear from you and thank you for the update.  Seven years is certainly something our community celebrates with you.

    Your starting point, as you describe, was fighting for the best possible treatment plan.  It is important if the cancer is only present in the liver, particularly if there is just one tumor, to get an expert surgical opinion (or several) to see if a skilled surgeon can perform a resection.  My story is similar to yours in that respect – initially told surgery was not possible, but one of my doctors found an expert liver transplant surgeon who thought he could get the tumor out. I just got my own scan results yesterday, and I am now at the 6.5 year mark since surgery and very gratefully still with no evidence of disease.

    Please stay in touch, we look forward to hearing from you when you celebrate your 8th year anniversary.

    Regards, Mary

     

    bglass
    Moderator

    Hi Pcw183,

    Welcome to our community.  I wish your husband had not received the diagnosis that brought you to us.

    Experience with our cancer varies a lot from patient to patient because of differences in how and where it turns up in your body, and differences in patient starting points, such as age and general health. Sometimes the cancer is aggressive, while in other patients it can move slowly.  There is no way to generalize because a very specific feature of a patient’s case may result in different treatment options and outcomes compared to other, seemingly similar patients.   Doctors are hesitant to offer specific timeframes about life expectancy for these reasons.

    I am hoping your husband is being seen by doctors with experience with our rare cancer, and who are giving guidance about what to expect. If treatment is not possible due to liver damage from cirrhosis, their efforts will be oriented to preserving your husband’s liver function and avoiding infections.  Signs of liver failure and/or of sepsis resulting from blockages in the gastrointestinal tract are adverse developments to look out for.  Maintaining general good health, e.g., with a nutritious diet, having some exercise and staying engaged with daily activities, as possible, is important for our patients.

    Please stay in touch with our community.  I hope you have had the opportunity to look at the resources for patients and caregivers available on the Cholangiocarcinoma Foundation website.

    Take care, regards, Mary

     

     

     

    bglass
    Moderator

    Hi Gap and Hesw,

    Thank you for your messages.  As you point out, nutrition is a topic that can be a worry for our patients.  Here are some resources from the Cholangiocarcinoma Foundation website:

    Five for Friday – 5 ways to use nutrition to fight cancer

    Regards, Mary

     

     

     

    in reply to: Miss you Dad… #101600
    bglass
    Moderator

    Hi Laura,

    I am so sorry for your loss.  It is painful to lose a beloved parent, and that pain stays with us mixed in with all the happy memories.  Please count on my prayers for you and your family.

    Take care, regards, Mary

    in reply to: 1 yearversary of my diagnosis #101599
    bglass
    Moderator

    Hi Patrickf,

    This is indeed wonderful news!  Thank you for sharing with us.

    Regards, Mary

    bglass
    Moderator

    Hi Alcyon,

    It is a pleasure to meet you, although we have heard a lot about you through Hannaha’s postings.  Hannaha is an amazing and wonderful voice on this board.

    I looked around a bit but did not find much information for you.  Here is the final article from the trial for Ivosidenib (AG-120). https://pubmed.ncbi.nlm.nih.gov/34554208/  You can look at the tables and graphs on this report to see some characteristics of survivors although I don’t think it is specific to the “long tail” as you describe it. The information is not written for laypersons, but it looks to me as if individuals in better initial health did better than those less so.  It also looks as if the researchers looked to see if the individuals in the trial had other mutations, but that there was no strong finding about the impact of the presence of other mutations.  At any rate, that it what I think I saw in there.

    Also, we had a few folks who participated in the AG-120 trials who posted on the board at the time.  I looked through their posts but did not find anyone reporting a long survival.  This is not to say none were in this group, it is just that no one with that profile posted about it.

    I wish I could be of more help with your question.  It is really inspiring how well you are doing with your treatment – my fingers are tightly crossed that your good results are here to stay.

    Regards, Mary

    bglass
    Moderator

    Hi Thrashm20,

    Welcome to our community.  I hope your medical team can find a path to figuring out if you have any treatable mutations.  If your current treatment stops working, there are other treatment approaches your doctors can turn to if the mutation-linked treatments are not yet an answer for you.  It sounds from what you describe that you have had good results from your treatment so far.  Let’s hope any new growth is minimal and slow, but if not, your doctors will have other treatments to try.  I imagine they are already discussing them with you.

    I hope you have had the opportunity to look at the wealth of resources for patients posted on the Cholangiocarcinoma Foundation website.

    It is wonderful to meet you.  There are good medical resources for our cancer in Philadelphia, reflecting on past posts by other patients in your area.  (BTW, I was born there, and have fond memories of the city.)

    Take care, regards, Mary

    in reply to: Husband scheduled for Laparoscopic Whipple #101548
    bglass
    Moderator

    Hi Ski4fun,

    Welcome to our community.  It is wonderful news that your husband’s cancer can be addressed with surgery.  A Whipple operation is a big surgery, but it sounds like he has a well-experienced surgeon.

    There are a lot of postings on this board about experiences with Whipples, which are accessible using the discussion board search engine.  There are also a lot of good resources on the Cholangiocarcinoma Foundation website for newly diagnosed patients.  If the surgery can be accomplished laparoscopically, hopefully that will lead to an easier recovery.

    From my own experience with a liver resection, my suggestions would be: to get walking as soon as this is feasible while in the hospital – the hospital staff will help with this; to have a big roll of plastic wrap ready when he gets home – to wrap around the torso before showering to keep the incisions dry; and to accept that the surgery rearranges one’s insides sufficiently that it will take some time to get used to a new normal – like occasional twinges around incisions, or figuring out what foods to avoid for awhile.

    I hope everything goes well with your husband’s surgery and best wishes that his recovery is uneventful.

    Regards, Mary

    in reply to: Success with Oral Targeted Therapy #101547
    bglass
    Moderator

    Hi Hesw,

    Thank you for the update.  I am glad you are doing well, and appreciate that you are posting your story of treatment with pemigatinib.  Because this treatment is new, it is a big help to our patients to hear your first-hand experience.  It is great to hear you are able to travel, and are feeling well during treatment.

    Regards, Mary

    bglass
    Moderator

    Hi Gap,

    Welcome to our community.  It is very good news that your husband responded so well to his chemotherapy.  I hope his good results persist and he continues to feel better.

    If the biomarker testing shows his cancer involves mutations for which there are targeted treatments, they may be an option for the future if needed.  The newer treatments are much milder than chemo in terms of side effects for most patients.

    If  your husband continues to experience pain or discomfort, he should push his doctors for ideas on how to address this.  If your husband is being treated by a hospital, there should be a palliative care practice there that helps patients deal with discomfort caused by cancer or its treatment.

    I am sure your husband feels blessed to have your loving care during this tough time.  Please stay in touch and let us know how he is doing.

    Take care, regards, Mary

    in reply to: 33 yo ICC WA state #101533
    bglass
    Moderator

    Hi Celeste,

    Thank you for the update and for sharing your good scan news.  I hope your chemo continues to keep your cancer in check.

    I wanted to ask if your doctors have offered any explanations for your unsettling CA 19-9 result.  I imagine that they will keep a careful eye on that for you.  You mentioned more frequent scans, which sounds like a good plan.

    Take care, regards, Mary

     

    in reply to: My Father Passed Away #101520
    bglass
    Moderator

    Hi Guda,

    I am so sorry to hear about your dear father ‘s passing, and the ordeal he and your family went through seeking a diagnosis when he was so severely ill in the last several months.  From what you describe, his last two months were a race for his doctors to try a diagnose what was going on while his health was rapidly deteriorating.  This experience must have been heart-breaking for you and your family.

    Because cholangiocarcinoma is a very rare cancer, it may not be the first illness doctors look for when a patient presents with general gastrointestinal symptoms.  At the same time, our cancer can be notoriously hard to diagnose in some patients, who can go through multiple rounds of tests without conclusive results.  To give you an example from my own case, my general bloodwork including bilirubin and liver enzymes was all normal around the time I was diagnosed even though I had a tumor occupying more than half of my liver.

    Cholangiocarcinoma patients can have a higher risk for developing blood clots. Sometimes patients will report symptoms that lead their doctors to look for a blood clot, in other cases a symptomless clot will be seen on a scan.  Sometimes symptomless blood clots are not detected at all, until they cause a serious complication.

    I hope you and your family can find peace and take comfort in memories of your father’s life and your moments together.  Please stay in touch with our community.

    Take care, regards, Mary

     

    in reply to: 33 yo ICC WA state #101505
    bglass
    Moderator

    Hi Celeste,

    Welcome to our community.  It is great to meet you.  I am sorry to hear about your diagnosis, and that you are experiencing some pain.  I hope your doctors can figure out what is going on, and help you with the pain.

    CA 19-9 serves as a sort of early warning signal.  When the numbers move up, this triggers, as you report, imaging studies and other efforts to see what is going on.  During chemo treatment, CA-19 can rise because the cancer is progressing but sometimes it can rise when the chemo is working because dying cancer cells can cause CA 19-9 to temporarily rise.  The imaging studies will help your doctors determine if the chemo is still doing its job.   From what you describe, so far your chemo has been working.  Generally our patients start with gem-cis, and if it starts to lose effectiveness, they move to a different treatment.

    Don’t worry that you might be overreacting.  I felt like having cholangiocarcinoma turned me into a hypochondriac, hyper focused on how I am feeling physically and raising all sorts of things with my doctors.  But you do need to do this (and not feel guilty about it).  We are not doctors and may not know ourselves what is significant and what is nothing to worry about.

    While not very common, some of our patients have experienced heart-related side effects from chemo.  So if you are observing anything concerning with your heart rate, be sure to discuss this with your doctors.

    I hope you will let us know how your imaging turns out.  Fingers crossed you will get positive news from your MRI.

    Take care, regards, Mary

     

Viewing 15 posts - 16 through 30 (of 646 total)