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  • in reply to: Votrient (pazopanib) working wiht FGFR2 mutation #94953
    bglass
    Moderator

    Hi Cary,

    I am sorry to hear your father is having such a difficult time. It is encouraging how he responded to the pazopanib with some improvement in his gait and cognition. You are spot on in thinking about next steps.

    I do not have direct experience with the symptoms your father has experienced. My understanding is that liver illnesses such as hepatitis and cirrhosis can affect cognitive functioning because of the role the liver plays in removing toxins. Symptoms can apparently include balance, which may affect gait. I have not heard anything specifically tying such symptoms to cholangiocarcinoma, but it seems possible to me there might be a link. (Systemic treatments can also affect cognition, e.g., “chemo brain,” as can some pain medications.)

    Hopefully the doctors you will be seeing have ideas on how to mitigate these symptoms. As you describe, they really impact your father’s quality of life.

    Regards, Mary

    in reply to: Treatment Has Begun // Week 1 #93448
    bglass
    Moderator

    Dear Joe,

    Please accept my condolences and prayers at this difficult time. You and your family did everything in your power to help your mom face and cope with this terrible illness, and bring her comfort and peace.

    Regards, Mary

    in reply to: Riding the roller coaster #94415
    bglass
    Moderator

    Dear Gail,

    Please know my thoughts and prayers are with you as you navigate these most difficult circumstances.

    Responding to Marion’s call for ideas on coping approaches, your messages reminded me of the following: I am a single parent and when my kids were small we went through a very difficult period during which I worried I was so distracted by a family crisis that I might be missing their issues and needs. I also suspected my kids might try to hide problems from me not wanting to make the situation more difficult. I decided to put another set of eyes on them to be sure nothing was getting missed. We were living far away from family at the time, so I had them meet each week with a child psychologist to talk about how they were doing. Her help was valuable in keeping our family dynamic healthy and positive. Had I been living closer to family I might have organized the “extra eyes” differently, but the arrangement left me somewhat less worried that I would not notice their needs.

    Reaching out to a mentoring organization is a great idea. I hope you are able to find the support you need, it sounds like there is a good circle of help reaching out to you.

    Regards, Mary

    in reply to: Rejected by Mayo? #94888
    bglass
    Moderator

    Jeff, let me chime in with some observations on the criteria used in determining if surgery can be performed in a case of intrahepatic CCA, based on my own experience as a patient.

    What I was told during my medical consultations at the time is that to be operable, the cancer generally must be confined to the liver, in other words it cannot have spread. In my case, my recent colonoscopy and mammogram results were considered to verify no other cancers were going on and I was sent for an endoscopy, in addition to the scans of my liver. There is also a calculation made of how much of the liver would have to be removed, as there needs to be enough left behind for healthy liver functions. The doctors also must look at how difficult the surgery would be, e.g., is the tumor wrapped around major veins or are there other features that would make surgery highly risky.

    In my case, the tumor was large, spanned both the right and left lobes and was near a major vein. These factors were why I was originally deemed inoperable and was advised to have chemo first to shrink the tumor to a point where surgery would be less risky. Subsequently, a surgeon took a second look and felt surgery could be possible. As a first step in the operation, he examined the area laparoscopically to be sure there was no spread and that the planned surgery was feasible.

    The advice to try chemo when surgery is not immediately possible is not uncommon, and as you can read in postings on this board, a number of surgeries were made possible by the initial chemo. In addition, other liver-based treatments may be possible should surgery not be an option.

    It is also my experience that outside of doctors who specialize in liver cancer, most others have seen few or no cases of CCA.

    I hope your mother-in-law’s upcoming medical consultations are fruitful, and result in a clear treatment plan.

    Regards, Mary

    in reply to: Rejected by Mayo? #94884
    bglass
    Moderator

    Hi Jeff,

    I am sorry you had to find us, but you will discover a warm, welcoming community here and tons of good information.

    It is very important to get good surgical opinions up front. Some surgeons are more willing to operate than others if the cancer is borderline resectable. In my own case, for example, I was initially told by a tumor board I was inoperable but then a surgeon came forward who felt surgery would be feasible.

    I posted an article yesterday which I attach again below that describes a list of possible treatments that can be considered when intrahepatic CCA is just in the liver and surgery is not possible. Some of these are used after or in conjunction with chemo. This may suggest questions you can ask the doctors when consulting on your MIL’s case.

    http://hbsn.amegroups.com/article/view/13987/14591

    It is interesting your oncologist was “surprised” there were no symptoms or affected liver functions. This is one of the insidious features of this cancer – intrahepatic CCA can be symptomless in the initial stages. In my own case, I had had a very thorough physical several months before I was diagnosed and there was not one sign of anything amiss. A large mass in my liver was then found accidentally in a scan related to pain from a pulled shoulder muscle. It is positive that your MIL’s cancer was found before it had started harming her liver functions.

    It would be good to ask who in Mayo was consulted by your local doctor – there are very few true experts in this cancer. I agree the reaction from Mayo seems strange.

    Wishing your MIL and family all the best as you pursue treatment.

    Regards, Mary

    in reply to: Mad at oncologist #94787
    bglass
    Moderator

    Dear 76%,

    I am sorry to hear that your CCA may have recurred.

    The question of surveillance after resection for our rare cancer does not seem well defined, and different doctors approach surveillance differently. I am not a doctor or medical researcher but did try and look into surveillance as a CCA patient.

    The research evidence on the value of regular CA 19-9 testing post resection for CCA is pretty sparse. I found one study that seemed to suggest that CA 19-9 will rise and predict recurrence maybe half the time, while the other half of the time, CA 19-9 may not move even if the cancer is recurring. Also there is no evidence one way or the other that catching a rising CA 19-9 early improves survival for CCA. This type of study has been done for other cancers and their tumor markers, and the results are mixed from cancer to cancer.

    The small amount of research on this suggests that a rising CA 19-9 can in some cases precede any other visible manifestations of recurrence by a few or even many months, which leaves the doctors with a quandary of whether to treat based on CA 19-9 alone, given that CA 19-9 can fluctuate or rise for benign reasons. If there is no visible evidence yet of where the recurrence may be hiding, then steps to determine appropriate treatment, e.g., biopsies, are not possible.

    Doctors tend to consult the NCCN guidelines on surveillance which recommend considering imaging every six months for two years as clinically indicated. The European ESMO guidelines are more aggressive and recommend scans and tumor marker blood tests every three months in the first two years. Doctors do express concerns that more aggressive surveillance may raise issues with insurance companies.

    Here are the ESMO guidelines: https://academic.oup.com/annonc/article/27/suppl_5/v28/1741490/Biliary-cancer-ESMO-Clinical-Practice-Guidelines

    The plan for surveillance should be discussed between doctor and patient. In my own case, I am now 18 months out from resection, and have a CT of chest-abdomen-pelvis every 3 months, and a monthly CA 19-9, which will be the plan for the first two years. This reflects that my pathology report after surgery showed high risk features.

    I hope the diagnostic studies you are having find something that is treatable so your good results post-resection continue. Fingers crossed that the news is good.

    Regards, Mary

    in reply to: TO MY CHOLANGIO CARCINOMA FAMILY #94738
    bglass
    Moderator

    Lainy,

    After 12,593 messages of hope and inspiration to our community over the past ten years, you truly are someone who has made a difference in this world.

    With your own experiences of the hope, resourcefulness, grief and determination this disease brings to patients and caregivers, you manage to find just the right turn of phrase, reference to needed information, poetry and words of encouragement to lighten the burden and keep us moving down a good path.

    You will be greatly missed, but your remarkable contribution stays available on this board (thanks to the great search engine) for us and the next patients and caregivers to come. I hope your next endeavors bring you joy and comfort.

    I was so thrilled to meet you in SLC and hope our paths cross again.

    Best regards and thank you, Mary

    in reply to: question about pursuing trials #94681
    bglass
    Moderator

    Hi Jocelyn,

    Welcome to the discussion board. I am sorry to hear that your brother has been diagnosed with this complicated cancer.

    I do not have direct experience with trials so regretfully cannot address your questions about them, but I did want to offer a little information on the trial you referenced. Like you, I found the write-up intriguing and tried to find out more, but saw that the only location seemed to be Mongolia. It is difficult to know how valid the reporting is on treatments only available in distant places.

    Here is a write-up about a person in Colorado treated for hepatocellular carcinoma with the HCC trial drug mentioned in the CCA trial description.

    http://www.bluefaery.org/blue-faery-stars/

    There should be answers and experiences related to your million questions among the postings on this board. The search feature works well in getting users quickly to needed info. Or just ask your questions to the group.

    Best wishes as your brother pursues treatment options.

    Regards, Mary

    in reply to: Treatment Has Begun // Week 1 #93437
    bglass
    Moderator

    Joe,

    The deep anguish you are feeling is a testament to the strong bond you have with your mom. She is so lucky to have such a caring, thoughtful son.

    Families in similar circumstances, as you may see from postings on this board, can find that entering hospice increases the patient’s quality of life and sometimes even the length of survival. Some patients might even come in and out of hospice as their conditions fluctuate. So it is not so much an act of giving up, but rather choosing a standard of care that may be more helpful in addressing your mom’s present needs.

    This is of course a difficult step to be thinking about, so I would encourage you to ask your mom’s doctors if you have not already done so, what exactly her care would be if she shifts to hospice. Your mother may find that the proposed care will help her regain strength or diminish pain. She may decide that she wants to try hospice, or she may want to find a different doctor who can come up with a plan for further treatment.

    Please know you, your mom and your family are in my prayers. Regards, Mary

    in reply to: 36 year old with CC update #93629
    bglass
    Moderator

    Marion,

    In my case, my doctors recommended adapting the SWOG S0809 adjuvant treatment for me even though my CCA is intrahepatic. In the SWOG S0809 reporting, it is clearly stated that intrahepatic was excluded and in fact, there is a review of the study I saw praising it for not including all types of CCA.

    The other (chemo-only) option I was offered is an adjuvant treatment used for pancreatic cancer that has a good study behind it. I don’t think there are many (or any) intrahepatic patients represented in the studies of adjuvant CCA treatments, or if so, the numbers are small. So doctors have to improvise!

    Regards, Mary

    in reply to: After Chemo Expectations #94663
    bglass
    Moderator

    Dear Red,

    I am sorry to hear your husband is dealing with so much fatigue. I think when treatments end, patients expect to return to normalcy, and lingering fatigue is disappointing against such expectations.

    I am now almost a year out from treatment, and in my case fatigue hung around for quite a while although it has slowly gotten better. The feeling is just as you describe – e.g., no energy and feeling exhausted from simple daily activities. Walking has helped me a lot plus I have tried to slow down my life and get more rest. I was very much an energizer bunny before CCA, so this has been an adjustment for me. I feel lazy, which I don’t like one bit.

    There are some good materials on the internet if you search “cancer-related fatigue.” Here is one piece:

    https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fatigue/what-is-cancer-related-fatigue.html

    Hopefully, the fatigue will resolve over time but important to discuss these concerns when you next see doctors.

    Regards, Mary

    bglass
    Moderator

    Dear Lola,

    Please accept my condolences and prayers for the loss of your beloved mother. I know it was a great comfort to your mother to have you with her through this long ordeal.

    Regarding your relatives who have not called – from my own experiences with illness and passing of family members, it is not uncommon for loved ones to react in unexpected ways, to seem as if they don’t know what to do. They may for example worry they don’t know what to say or that they would say the wrong thing, or have their own unresolved issues with the person who passed, or feel guilt they weren’t more engaged or present at the end, or may imagine erroneously that you need space and they should wait a bit. From my experiences, I came to accept that there is no way to predict how family members and friends will react when there is a death, and that even very inexplicable reactions are most likely NOT expressions of rejection.

    Sometimes I have tried taking a first step in reaching out to someone who seemed inexplicably slow in contacting me. It didn’t always fix things, but sometimes gave me clues about why their reaction was slow in coming or so impersonal.

    Regards, Mary

    in reply to: 36 year old with CC update #93625
    bglass
    Moderator

    Dear Katherine,

    How wonderful to hear you had a successful surgery!

    You asked about similar experiences. In my case (intrahepatic), I had clear margins but close in one area (also 1mm) due to a vein. My lymph nodes had not looked concerning in the pre-surgery scans and were not sampled as part of the surgery. I was told later this was because the surgery was difficult and the surgeon was “concerned about morbidity.” The pathology report cited that the tumor was large, poorly differentiated and showed vascular invasion. But the tumor was cleanly removed and no signs of cancer spread, so the surgeon was happy with the result.

    He did recommend, due to the bad pathology, that I pursue adjuvant treatment. I was referred to a radiation oncologist who felt that with the close margin and unknown lymph nodes (“we have to assume they may have cancer”) I should consider a protocol that had some success with extrahepatic patients, especially those with R1 margins or positive nodes. Below is the citation for the protocol. I had four cycles of gemcitabine and capecitabine followed by five weeks of IMRT radiation to the tumor bed and related lymph nodes, together with capecitabine.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4534524/

    I tolerated both fairly well. The capecitabine caused problems for my feet (hand-foot syndrome) that got pretty bad at the very end, but mostly cleared up later. Also, my lymphocytes dropped way low halfway through the radiation. They crawled back over the bottom limit of normal a couple of months after treatment ended.

    I have been NED now for 17 months post-surgery and have my fingers tightly crossed this continues for a good while. If I had it to do over again, I would still choose this post-surgery treatment.

    There is a debate (and not much clear evidence) over whether adjuvant treatment is worth doing. I didn’t understand why anyone would choose NOT to have adjuvant treatment until my lymphocyte level dropped, which gave me some insight regarding one potential risk, which is possible weakening of the immune system. Nevertheless, I personally wanted to feel I had pursued all avenues.

    Best wishes for a continued good recovery.

    Regards, Mary

    in reply to: Mucinous CC #94221
    bglass
    Moderator

    Fay,

    I am so sorry you and your mother are not getting the support you need from your medical providers.

    Your doctor’s assertion he cannot consider adjuvant or further treatment due to lack of evidence is concerning. Because this is a rare cancer and because our health system is very decentralized, there simply are not (and may never be) volumes of statistically strong studies with definitive results. For many, our treatment will be part of the research effort, for example, participating in clinical trials. There is a difference, however, between negative evidence (e.g., that a treatment won’t work) and lack of evidence.

    My impressions of the doctors who have been treating me is they combine the limited evidence out there for cholangiocarcinoma with what they have seen with other related cancers (e.g., pancreatic), plus the experience of other doctors they consult, plus their gut feeling about the patient at hand, in making their recommendations.

    In my case, I was offered adjuvant treatment (chemo plus radiation) starting two months after resection based on a study called SWOG S0809. This study excluded intrahepatic cases and only focused on extrahepatic CCA and gall bladder cancer. My case is intrahepatic – nevertheless, my doctors recommended following the same approach adapted to my case because the SWOG S0809 showed effectiveness for patients with R1 resections or positive nodes, and my case while R0 involved a very slim margin, unexamined lymph nodes and other high risk factors. If you read the study, while it is not randomized, it is persuasive that the protocol carries a benefit for many patients. The alternative adjuvant treatment mentioned to me was one (chemo only) that showed effectiveness in research for pancreatic cancer.

    Here is the citation for SWOG S0809 in case it is of interest. The study is also discussed in a webinar on this website presented by Dr. Abby Siegel.

    Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4534524/

    Webinar: http://cholangiocarcinoma.org/recent-advances-in-adjuvant-therapy-for-cholangiocarcinoma/

    This cancer is like being sent back to school. Sometimes I feel like I am researching term papers. This website has a lot of good info you can take to your doctor to look at if you think he is missing needed information.

    Best wishes and prayers as you seek better treatment options.

    Regards, Mary

    in reply to: Two types of CC? #94497
    bglass
    Moderator

    Dear crfisher,

    This is an interesting question. From what I have read, there are various factors that predict a less aggressive cancer. The term for this seems to be “indolent.”

    For example, some CCA mutations seem to be associated with a less aggressive cancer, e.g., FGFR.

    Another factor associated with aggressiveness is tumor grade. Well- or moderately-differentiated tumors are viewed as likely less aggressive than poorly differentiated ones.

    I have seen the same conjecture discussed, that more aggressive cancers may be more responsive to chemotherapy because chemo attacks fast-growing cells, I don’t know, however, if there is evidence on this point one way or the other for CCA.

    My own impression is that every CCA patient is unique because the cancer has a lot of diverse factors giving each of us our own “mix.” Like most everyone else, the specifics of my own case are a grab bag of positive and not so positive features, so I cross my fingers and pray for good outcomes. The trend toward personalized medicine is very favorable for us.

    Regards, Mary

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