bglass

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  • in reply to: Hello from Houston, first post, sister with Cholangio #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

    in reply to: Hello from Houston, first post, sister with Cholangio #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.

    in reply to: Transplant not an option? #95218
    bglass
    Moderator

    Hi Kathy,

    I am also an ICC patient and have wondered the same thing.

    The experience with liver transplant for intrahepatic CCA has not so far been positive. My understanding is that recurrence rates tend to be high, which is problematic given the scarcity of livers for transplant. I believe that doctors strive for resection rather than transplant for ICC as the survival prospects are somewhat better.

    There are a number of studies of transplant outcomes where patients who had been diagnosed with hepatocellular carcinoma were discovered after liver transplant to have actually had intrahepatic cholangiocarcinoma. Sadly, a high proportion of these ICC transplant cases experienced recurrence.

    I think with time, doctors may get better at identifying subsets of ICC patients who may benefit from a liver transplant, but this is not the case today. This may involve certain patients at a very early stage who undergo a pre-transplant regime of chemo and/or radiation.

    Here is an article on the topic.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4598610/

    Best wishes as you pursue treatment options.

    Regards, Mary

    in reply to: 36 year old with CC update #93633
    bglass
    Moderator

    Hi Katherine,

    It is great to hear you are doing so well.

    You asked to hear about experiences with radiation. Here are some observations re my five weeks of IMRT radiation with capecitabine concurrently.

    I need to preface this by saying that the center which treated me was wonderful in every way: efficient with caring, patient-oriented staff, top notch doctors and modern facilities. So my description below should not be viewed as in any way complaining about the provider.

    I found radiation tougher than chemo. It is logistically different in nearly all aspects. Chemo was once a week with some weeks skipped. Radiation was every day. Chemo appointments were long, usually a couple of hours. Radiation was in and out within 30 minutes. Chemo was slow and nurturing: here is your recliner, have some tea, bring your family, do you want a magazine. Radiation was get down to business fast. Get in there, put on a robe, zapped and done.

    The radiation made me tired but it sometimes felt like it was not the treatment, but rather getting myself there every day while I was holding down a job. For me, radiation treatment took some patience – I found the experience a little unnerving til I got used to it.

    My treatment center had the patients change into gowns. I usually had one of the last appointments of the day, and the gowns left were either extra small or extra large. I opted for extra large, which made me feel I looked like the school nurse at Hogwarts.

    The patients file in and out pretty fast as the treatments last maybe 10-15 minutes from start to finish. When you come in to the treatment room, you first lay on a table on a mold shaped to your body. The technicians move you around until the beams line up to the small tattoo dots that had been placed during the treatment planning session. Once you are in position, they leave the room, a large metal door clicks shut behind them, and they speak to you via speakers in the room.

    Soft music played in the background. A large gantry with scanning and treatment functions rotates around you. It looks like a Star Wars weapon. The first step is a scan to be sure everything is lined up correctly, then the treatment itself which involves several passes by the rotating gantry.

    In my case, I had to hold my breath during the treatments, which is something the technicians practiced with me until I could time my breathing as needed. I figured out some prayers that matched the timing of the breath holds, which made that aspect easier.

    The technicians then tell you they are done, come back in, and help you off the table. At that point, you are finished, get redressed and head home. My abdomen felt warm after treatment and initially I would crave milkshakes and was hitting McDonalds on the way home.

    Other than fatigue, which deepened over time and hung on for a few months after, I had a little bit of a reflux problem which responded well to over the counter treatment. No nausea. I generally felt fine during the treatment other than some hand-foot problems from the capecitabine. The radiation lowered my lymphocyte count quite a bit – if I recall correctly to a level considered an adverse event – but it bounced back to normal range within a few months. I was initially concerned about this, but the doctor pointed out that my lymphocytes had not stopped the cancer in the first place so their temporarily lower levels were not something to worry about.

    The center where I was treated had a nutritionist on staff who recommended a high protein diet and plenty of water.

    That is what I remember. The five weeks were tedious, but I got through it in good shape. It has been 13 months for me since I finished treatment, and I have no regrets.

    Hope this is helpful.

    Regards, Mary

    in reply to: My beloved MOM #95142
    bglass
    Moderator

    Alikemal,

    I am so sorry to hear of your loss. Thank you for sharing your mother’s picture.

    Regards, Mary

    in reply to: Riding the roller coaster #94461
    bglass
    Moderator

    Gail,

    Please accept my condolences for your loss. You and your family will be in my prayers.

    Mary

    bglass
    Moderator

    Dear Karen,

    I really appreciate your wise words on the complicated emotions we all feel with a cancer diagnosis.

    Our rare cancer is especially tough as it is so hard to find folks with first-hand experience, whether doctors, other caregivers or other patients, to help us navigate this incredibly difficult path. For example, in my own case, I only first met and spoke to another patient with CCA sixteen months after I was diagnosed.

    The Foundation is a lifesaver in this regard.

    You are spot on in calling on us to be educated and not to fear science. The information on this cancer is hard to find sometimes, tough to understand and digest. But I guess we all have to go to CCA school best we can, so when the moments come to make quick treatment choices, we can fully participate and know what we are getting into.

    Regards, Mary

    in reply to: My mom has passed #95061
    bglass
    Moderator

    Thank you for letting us know about your mom, and please accept my prayers and condolences.

    I recall reading her posts while searching topics on the board, and her story is one of great courage and spirit, as well as offering hope for other patients.

    Regards, Mary

    bglass
    Moderator

    Jeff,

    I looked at the list again, and only about 30 are likely medical doctors in the U.S. Other mentioned deaths are of other types of healthcare professionals who would not be included in an estimate using figures for medical doctors. Or they are people in other countries (UK, Honduras, Canada, etc.) hence not included in numbers for the U.S. I suspect that not all 30 fit what must be a narrow definition of “holistic doctor” if there are only 4000 of them out of a million doctors in the U.S.

    So nothing seems proven here – these deaths still seem to me nothing outside what death rate data would predict. The author does seem to be scouring published news reports and obits to find examples that fit her theory, so the 30 or so doctors mentioned are probably close to a full list, and are similar in number to your own estimate (32) of an amount of deaths we should not find to be remarkable.

    I don’t know what Snopes is, and took my numbers from reliable published sources. I can assure you I am not bought off by any large corporation. I do have a deep respect for evidence and statistics, and this reporting just isn’t convincing to me. I guess we can agree to disagree!

    Regards, Mary

    bglass
    Moderator

    Jeff,

    I looked at the article you attached, and want to make an observation.

    The U.S. is a very large country, and there is need to be cautious when looking at stories that try to generalize from a small number of cases.

    For example, there are about 1 million doctors in the U.S., and about 18 million health professionals of all sorts. The annual death rate for the U.S. population is about 0.8 percent, so in a given year, on very rough back-of-envelope average, about 8,000 doctors and 144,000 healthcare workers would pass away from all causes. If you divide this up by causes of death, then just for doctors, again with very rough averaging, there might be in the ballpark of 132 suicides, 101 gun deaths, and 419 accidental deaths in a year in the U.S. Widening this to more types of health professionals would expand the numbers even more.

    It would then be very easy for someone to troll the internet and selectively find cases that fit ANY possible theory about circumstances of death for any group because there are always big numbers of cases to pick through.

    Selectively picking a few cases that match a theory, however, is not proof of the theory’s correctness. Cancer is a terrible disease and it challenges people’s logic that a country that sent astronauts to the moon and figured out how to build an atomic bomb has not yet been able to solve the cancer puzzle, namely find a cure. My own belief is that cancer is just a much harder puzzle. Speaking for myself, this frustration is most intense when you are a patient or caregiver.

    Regards, Mary

    in reply to: I’d Hoped Not to be Back Here …. #94863
    bglass
    Moderator

    Dear Fred,

    It is important to seek good surgical opinions, as some surgeons are more aggressive than others. There are surgeon recommendations on this board, if you search a bit.

    My understanding is that re-resection is a preferred approach for recurrence if technically feasible and if the cancer has not spread. There are a number of discussion board colleagues who have had multiple resections. But many cases are not appropriate for more surgery, and other types of treatments are used.

    The fact that one surgeon with whom you have consulted sees potential for surgery seems encouraging, even if you have other opinions in the mix. Personally, I tune out when a doctor tells me “all the other doctors will say the same.” Most doctors encourage second opinions.

    Best wishes as you investigate treatment options.

    Regards, Mary

    in reply to: Starting Gemzar Tomorrow – Don, Edmond, OKLAHOMA #95027
    bglass
    Moderator

    Don,

    Welcome to the discussion board. It is good to hear your recovery is going well.

    When you say you are starting Gemzar, I am assuming this is an adjuvant treatment, namely post surgery to mop up any stray cancer cells. If so, if you have been reading through the discussion board, you may have seen the news stories this week about positive results from an adjuvant treatment using capecitabine. If you search “BILCAP” here or on google, you will see the press reports.

    You may consider bringing this info to your oncologist, especially if he or she is not specialized in this rare cancer.

    Best wishes for continued progress in your recovery.

    Regards, Mary

    in reply to: Latest Report on Chemo Treatment Xeloda #94997
    bglass
    Moderator

    Dear Tia,

    I agree with you that capecitabine seems a little overlooked. The BILCAP study results will likely change this.

    I took capecitabine as part of an adjuvant therapy after a liver resection. At the time one of my doctors asked the question “why not gem-cis rather than gem-cap?” since gem-cis is considered the standard of care as a first-line chemotherapy. But the study behind the protocol I was given pre-dated the big gem-cis trial, and included capecitabine not cisplatin, administered with gemcitabine.

    At the time I tried to read what I could find, which was a few small-sample studies. What struck me (this is a completely non-expert patient observation) was that the regimes that included capecitabine often had overall survival rates slightly longer than other chemo combinations. (As a patient, I tend to read past other end-point measures to look for overall survival.) By slightly longer, I mean by a month or two. Also capecitabine is in pill form, which is easier than a cisplatin transfusion. The adverse effects seemed less scary to me with capecitabine when compared to the platinums, although I had pretty bad hand-foot syndrome by the end (my experience, not everyone experiences this.). So I was fine with having gem-cap rather than gem-cis.

    I do not believe there have been any randomized studies yet directly comparing gem-cis with a capecitabine combination. The famous gem-cis study (also from U.K.) compared that combination to gem alone. Great Britain seems to me to have an advantage for medical research in that its care system is centralized. So for years apparently, CCA patients there who had liver resection surgery, if appropriate candidates, were encouraged to consider participation in BILCAP. This helped the study to recruit relatively large numbers of patients with this rare disease, and to produce results with statistical weight.

    I have been reading this board for nearly two years now and do not recall seeing many or any U.S. patients reporting having BILCAP-type adjuvant treatment, namely eight cycles of capecitabine.

    Regards, Mary

    in reply to: Scans coming up #94783
    bglass
    Moderator

    Julie, Cathy,

    I guess each practice does it differently. I usually get the scan and blood test results through a portal, so I see them before my appointment. And just as usually there is something weird in the scan report that causes mild worry until I see the doctor and am told “oh, that’s nothing.” One time for example my appendix was “prominent.”

    Not sure which system is better. I imagine that my doctors have to divert some of their scarce time answering freaked out emails over some of the odd and unimportant findings that get reported in scans reports.

    Julie, I so appreciate your postings, they contain so much practical and useable information. Thank you for taking the time.

    Regards, Mary

    in reply to: The long awaited results of the adjuvant BILCAP study #94973
    bglass
    Moderator

    Marion, thank you for posting. This is amazing news. I guess the docs can no longer say there is “no benefit” to adjuvant treatment after resection. Regards, Mary

Viewing 15 posts - 406 through 420 (of 446 total)
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