bglass

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  • in reply to: Newly Diagnosed #98891
    bglass
    Moderator

    Hi Shshaw,

    It is good to hear from you and that your doctors have treatment plans in mind.

    My understanding is that the patient outcomes from chemotherapy delivered via a hepatic arterial infusion (HAI) pump generally have been positive when compared to other chemo options.  As you mention, one benefit is lighter side effects given that the chemo goes straight to the liver.  There are two cholangiocarcinoma patient blogs I am aware of by patients who were treated using the pump.  Both patients reported a positive experience having chemo delivered via HAI.  Here are the links:

    https://becauseicansir.com/  (Look at the posting for April 7, 2018).

    http://nowwithouthesitation.blogspot.com/2016/09/me-and-my-pump.html (Look at postings around September 2016)  Sadly, the author of this blog passed away earlier this year.

    I hope this is helpful.  If you have any additional questions or concerns, please send them our way.

    Regards, Mary

     

     

    in reply to: Intro – Intrahepatic CCA found by coincidence #98879
    bglass
    Moderator

    Hi Derya,

    My experience after surgery was similar to what Hannah reports.  A liver resection is a major re-plumbing, and it can take a while for the digestive tract to settle down and for patients to adjust to the new normal.  Also, my recollection is that recovery from the anesthesia and the post-surgery pain medication also affected my appetite.  The usual recommendations for small meals, avoiding hard to digest foods and supplementing with juicing or protein drinks are helpful.  If there are severe disruptions to eating, this should be reported to the surgeon.  My recollection was that it took maybe three weeks to get back to semi-normal eating, and I was not eating much at all in the first week after surgery.

    I hope your mom recovers quickly from her surgery and is feeling better.

    Regards, Mary

    in reply to: Newly Diagnosed #98878
    bglass
    Moderator

    Hi Shshaw,

    Welcome to our community, but I am sorry that your diagnosis brought you here.

    I am a patient myself, not a medical person, but can provide some general information in response to your questions.  The gem-cis chemo treatment you are receiving is standard of care for our cancer when surgery is not possible.  You raise a good question about radiation.  Radiation is used with our cancer, but it is used with care to avoid harming the liver.  A principal goal of treatment is to preserve good liver function.  The geography of a patient’s tumors is an important consideration for treatment recommendations.  If tumors are too large, too numerous, or near major veins, or if the radiation would have to also affect nearby organs in a risky way to get at your tumor, then it would not be recommended.  Sometimes doctors try chemo first because in many patients it will shrink the tumors or eliminate small ones, and this can open the door to surgery or ablation or radiation.

    Also, the liver-directed therapies tend to be used in patients whose cancer is confined to the liver.  If there is suspicion cancer is moving beyond the liver, systemic therapies are more commonly used.  This is not always the case, so again, good medical advice should be sought to identify the best possible treatment approach.

    It is imperative with cholangiocarcinoma to be seen by experienced doctors, which generally means in major cancer centers.  The Cholangiocarcinoma Foundation website has a tool – a specialist map – posted on its website for finding doctors, which is based on insurance data showing which doctors are treating a lot of our patients.  This tool (link provided below) can help you locate doctors who are specialized in cholangiocarcinoma.

    Generally the major cancer centers will have a team of doctors of the different relevant specialties (“tumor board”) review cholangiocarcinoma cases, to determine which treatments (you listed several of them) are the best options.  You may wish to consider seeking an opinion from an experienced radiologist about whether you are a candidate for some of the treatments you are interested in.

    Please take a look at the many resources for newly diagnosed patients on the Cholangiocarcinoma Foundation website.  I hope you will stay in touch, and send any questions our way.  Patient stories posted on the discussion board are a valuable source of information to others who will walk our path in the future.

    Take care, regards, Mary

    Specialist Map

     

    in reply to: YELIVA – ABC294640 Trial #98863
    bglass
    Moderator

    Hi Fred,

    Thank you for your note.  I looked through the discussion board and while there is discussion about possibly seeking this treatment, I did not find any patients who wrote about being treated with Yeliva.  I also contacted a caregiver who was looking into it, and that patient did not in the end pursue Yeliva either.  Hopefully, if a patient or caregiver who is under Yeliva treatment sees this string, they will post on their experience.

    If you do enroll in this trial, I hope you will keep us posted.

    Regards, Mary

     

    in reply to: Intro – Intrahepatic CCA found by coincidence #98841
    bglass
    Moderator

    Hi Hatice,

    The decision you are being asked to make is very specific to the geography of your liver (namely, where the tumors are located relative to other features such as bile ducts, veins, other organs, etc.) so it is not possible to generalize.  But here are some thoughts:

    It is definitely possible to have a second resection.  I have read a few medical studies reporting results from second resections, and they seem to be in general similar to results from initial resections in terms of patient outcomes.  But it would take an experienced surgeon to give an opinion as to how this would work for you.

    If surgery is not possible, both RFA and Cyberknife are also effective in defeating tumors, especially if they are small.  You are fortunate that your cancer is only in your liver because, as you are seeing, there are more treatment options than if the cancer has spread.

    Recommendations as to whether a proposed treatment is a good choice in part depends on what the doctor feels comfortable with.  The surgeries needed for cholangiocarcinoma can be exceptionally complex, and sometimes one surgeon will say it is not feasible but a more experienced or specialized surgeon may be more positive.  In my own case, I was initially told I was inoperable, but subsequently a liver transplant surgeon was brought into my case.  He thought the surgery was feasible and was able to get the tumor out.

    The best path may be just as you are doing – seeking out multiple opinions from experienced doctors, asking a lot of questions including about risks, recovery time, and likely outcome, then choosing the course of action that seems best to you after hearing them out.

    I have sent you a private message with some additional information.

    Regards, Mary

    bglass
    Moderator

    Hi Trieneke,

    Let me add my best wishes to Gavin’s that your beloved son finds good treatment options that work effectively.  Please stay in touch with our community.  I hope you have found the many patient and caregiver resources on the Cholangiocarcinoma Foundation website.

    Take care, regards, Mary

    in reply to: Intro – Intrahepatic CCA found by coincidence #98838
    bglass
    Moderator

    Hi Hatice,

    Welcome to our community.  Thank you for relating your story.  It was, as you describe, disappointing to have your happily planned trip turned upside down with your diagnosis.  Cholangiocarcinoma can be symptomless initially, and it is a very unwelcome surprise when finally revealing itself through pain or jaundice.

    From what you describe, your doctors recommended very aggressive treatment and your results have been generally positive with a few bumps in the road.  Folfirinox is a tough chemo regimen, but it got you to surgery.  The more recent lesions are going to get zapped, and hopefully the RFA and Cyberknife will do their job for you.

    Best wishes as you pursue the next round of treatment.  Please let us know how it goes, and send any questions our way.

    Take care, regards, Mary

     

    in reply to: Our New Discussion Board is HERE #98837
    bglass
    Moderator

    Hi Michelelynn0305,

    Welcome to our community.  I am sorry to hear about your mother’s diagnosis and that she is feeling poorly.

    We are patients and caregivers here, so we are not in a position to offer medical advice.  Here is some general information, and there are additional patient and caregiver resources on the Cholangiocarcinoma Foundation website you may find helpful.

    Gemcitabine (Gemzar) alone is a chemotherapy sometimes offered to patients who are very elderly or in poor health, as it has fewer side effects and is easier to tolerate than other chemo options.  Gemcitabine alone has effectiveness in treating cholangiocarcinoma, but it is somewhat less effective than the more common chemo regimen that adds cisplatin to the gemcitabine.

    It can be difficult sometimes to know if adverse symptoms are side effects of treatment or due to the cancer itself.  These are questions best handled by doctors.  Cancer treatments usually include medications that address side effects and cancer symptoms, such as anti-nausea drugs or pain medications.  Sometimes the initial drug the doctor prescribes does not work very well, in which case patients should ask for a different option.  No patient should attempt to soldier through pain or nausea when there are many medication options that can help – it is just a matter of working with doctors in finding the best ones for each patient.  If the medical facility where your mother is being treated offers palliative care resources (which address discomforts and side effects of illness and medical treatment), they might be able to help her feel more comfortable.

    Concerns with diminishing appetite are often reported by caregivers.  The initial guidance for patients not feeling hungry includes steps such as trying frequent small meals, avoiding hard-to-digest foods, choosing nutritious foods that are high protein/high calorie, offering foods the patient enjoys (rather than going overboard on unfamiliar or unappetizing foods believed to be more healthy) and using liquid nutrition products like protein shakes.  If these types of remedies are not working, this should be reported to your mother’s medical providers as there may be a medication solution such as a better anti-nausea drug, or it may be important information relative to the progression of your mother’s cancer that might inspire a change in treatment.  There are medications available that can stimulate appetite.  We have not seem them much used with our cancer patients, but certainly this is something you can ask about.

    The question of how to know if a patient is reaching end-of-life is a highly sensitive topic.  Some of the major cancer organizations have posted good information on this question.  If you internet-search “end of life signs” and “liver cancer” (or something similar) you will find information in reputable sites such as the American Cancer Society and the National Cancer Institute, that may help you assess how your mother is faring.  If there are changes to your mother’s health that are concerning to you, the oncology staff where she is being treated should be able to offer advice on what to do.

    Please stay connected to our community as you navigate your mother’s care.  We are here for you, and there is a great deal of experience documented on the boards.  I hope your mother feels better and that her doctors are responsive to your concerns.

    Regards, Mary

     

    bglass
    Moderator

    Hi Trieneke,

    Gavin can provide a better response from a European perspective, but here are some initial thoughts.

    The science of cancer treatment is evolving rapidly, and many of the new cholangiocarcinoma treatments now in testing are based on molecular profiling.  Generally our patients start with surgery if feasible, and/or chemotherapy but if the molecular profiling has been done, it can open other possible treatments based on any genomic defects that turn up.  This is especially important should the more traditional treatments lose effectiveness over time.  For our cancer, these targeted treatments are most often available through clinical trials because the drugs are new and still in testing.

    For this reason, having the molecular profiling is important for our cancer.  You may have seen this information already, but here is a link to the Cholangiocarcinoma Foundation website page on molecular profiling for our cancer.

    Patients Portal

    Finding good treatment options can be challenging with a rare cancer.  It can sometimes be difficult even to identify doctors with experience with cholangiocarcinoma patients.  Often the patient and family members do a lot of the research to find doctors and treatment options.  There is a community of researchers in the Netherlands for cholangiocarcinoma.  The website of the European Network for the Study of Cholangiocarcinoma (ENS-CCA) may give you some ideas about which hospitals have specialists.

    Should the time come when treatment through a clinical trial seems indicated, you can look for clinical trials using the U.S. website clinicaltrials.gov, which is a worldwide register.  For Europe, there is also the clinicaltrialsregister.eu.  There may be a Netherlands register as well.  For cholangiocarcinoma, I would recommend three different searches – “cholangiocarcinoma,” “biliary cancer” and “solid tumor” – as a start to find trials.  The trials information will show trial sites and you can search for trials a feasible travel distance for the patient.  If a trial looks interesting, then there are usually contact persons given whom you can call or write to and ask for additional information.

    Immunotherapy is also a newer approach in cancer treatment.  For cholangiocarcinoma, the most success so far (in my layman’s view) has been for patients with mutations called mismatch repair defect (dMMR) or micro-satellite instability – high (MSI-high), but immunotherapy drugs are being tested for patients with other genomic defects and even for patients in a general population.  In the U.S., most immunotherapy treatment for cholangiocarcinoma right now is offered through clinical trials.  The immunotherapy drug pembrolizumab (Keytruda) has been approved by the U.S. Food and Drug Administration for solid tumor patients with the dMMR or MSI-high genomic defects who have failed other treatments.

    Going to the specific case of your son, there is always reason for hope.  There is a lot of promise for patients in the new drugs and treatments under development.  Patient experiences vary, and you can read patient stories looking through the discussion board.  In my own case, I am a patient initially diagnosed in 2015, and have been in remission since after treatment with surgery, chemo and radiation.  My particular treatment followed a protocol for patients with high-risk tumors who have had surgery.  This protocol has been used in some cases for patients whose surgery could not remove all of the cancer.  Since I am not a doctor, I cannot give medical opinions but if you wish to raise with your son’s doctor the possible feasibility of this particular protocol, it goes by the name of its clinical trial which is SWOG s0809.  This can be searched on-line.

    Please stay in touch and send any questions our way.

    Regards, Mary

     

    in reply to: 1 year and six days post diagnosis #98811
    bglass
    Moderator

    Hi Jennifer,

    Your update on your husband’s progress is welcome good news after the ordeals he endured during his treatment.  Good scans are always reason to celebrate, but especially after so many rough spots.

    Your story about the improvised Thanksgiving meal made me smile.

    I hope the good news continues and that next rounds of treatment go easier for your husband.  Please keep us posted.  John is so fortunate to have you and other family and friends by his side.

    Regards, Mary

    in reply to: Folfirin #98805
    bglass
    Moderator

    Hi Brigitte,

    It is nice to hear from you.  Has your doctor advised starting Folfiri?

    If you search the chemo name on the discussion board search engine, you can find some patient stories.  Folfiri (for any readers not familiar) is a chemo cocktail that involves folinic acid, fluorouracil and irinotecan.  Folinic acid is a vitamin added to some chemo regimens to reduce side effects and it is thought to boost chemo effectiveness.  Fluorouracil is also called 5FU and is a chemo, as is the irinotecan.

    Folfiri is a second line chemo regimen sometimes recommended for cholangiocarcinoma patients for whom the first round of chemo (usually gem-cis) has lost effectiveness.   It usually involves a combination of infusion at the oncology center plus a pump that comes home with the patient.  The pump continues administering the 5FU over about two days.  The pump is small and is carried in a pack that looks like a shoulder handbag, so it does not unduly interfere with daily activities.  From what I have read in patient and caregiver reports, experiences with Folfiri vary a lot, with some patients having light side effects and others finding Folfiri to be more harsh.  For many patients, Folfiri can be effective at controlling our cancer.

    Hopefully if you pursue Folfiri treatment, it will do its job for you and keep the cancer well controlled.  Please let us know how you are doing.

    Take care, regards, Mary

    bglass
    Moderator

    Hi Mims1924,

    Your wife Jeanne is having quite an ordeal in getting to a firm diagnosis and treatment plan.  I know this is beyond frustrating.  I hope the upcoming surgery gives a resolution so that she and you can move forward to effective treatment.  Apologies for sounding like a broken record on this point (sometimes responses get repetitive but I try and think about other folks who read the board postings), but if the mass is determined to be cancer and a tissue sample is taken, please be sure to ask Jeanne’s doctor about molecular profiling.  There are new treatments in development and available through clinical trials and other means that can benefit cholangiocarcinoma patients who are known to have specific genomic defects discovered through profiling.

    Cholangiocarcinoma can be nightmarish to diagnose for many patients.  It can hide in bile ducts, and frustrate attempts to have good imaging or take biopsies.  But unfortunately, doctors cannot treat this cancer until they know its dimensions because the treatment options can go in very different directions.  They need to determine the feasibility of (or rule out) surgery, different radiation options and chemotherapy.

    If after open surgery, you and Jeanne feel doubts about the diagnosis or treatment options, a second opinion might be considered.  Your doctor will support your interest in a second opinion and may help you pursue it.  Another second opinion option is to look at the provider map available on the Cholangiocarcinoma Foundation website which can help you find experts in your area.

    Please stay in touch with our community, and best wishes that Monday’s surgery goes well.

    Regards, Mary

    bglass
    Moderator

    Hi Luis,

    Thank you for the update.  I was trying to research your question a bit.  Apologies in advance – this is a long message.  I know that available healthcare resources can vary a lot from one country to another.   Some of the information below may already be well known to you, but hopefully this is a little bit helpful.  Whether in the U.S. or in any other country, when dealing with a rare cancer, often it is up to patients and caretakers to bring the different healthcare threads together to have a good treatment plan, as you are describing your own efforts on behalf of your beloved mother Clara.

    From what I can tell, IMRT is available in Argentina and proton therapy facilities are in the works.  The on-line information on the status of proton treatment that I could look from here seemed to suggest treatment is hoped to be starting soon – it is established as a partnership between INVAP and CNEA.  I saw one report on line that seemed to indicate patients have already been treated with proton therapy in Argentina, but other reports indicate the facility is still under construction.  International reports suggest proton treatments will be available this year, but local press suggests it would be later.  I am sure it is easier to know what is going on when you are in the country.  (This is a correction to my earlier posting.)

    I found on-line references to radiology centers offering IMRT therapy, again, without much mention of liver cancer other than one mention of treating hepatocellular carcinoma.

    There are also some doctors and researchers working in Argentina who seem to have involvement with cholangiocarcinoma treatment, judging from medical journal articles published with authors who are attached to Argentinian institutions.

    What is not evident is whether the doctors and researchers are pursuing the types of radiation treatment you are interested in.

    If it were me trying to quickly pull together information, I would try several things in hopes something would work out.

    First, I would try to identify local doctors experienced with cholangiocarcinoma and see if I could get them interested in the case.  You can internet search “Argentina” and “cholangiocarcinoma,” then look at the medical journal articles that come up.  If you bring up articles, generally the authors’ identifiers will indicate what hospital they are attached to.  Looking at the names and hospital affiliations  might help figuring out where the expertise is resident.

    Second, I would try and make contact with the lead doctors associated with the local radiology centers and see what experience they have.

    It may be possible to have treatment in Argentina if you can pull together a good medical team.

    Third, if there is not much experience with your mother’s type of case in Argentina, another thing you might consider (which in fact was mentioned in a recent post related to another patient) is to seek a remote second opinion from a major cancer hospital in the U.S. or another country if this is offered.  A number of major cancer centers in the U.S. offer this service, where you send the medical records and their experts will take a look at the case.  The recent posting on this board indicated a cost of $700 for the opinion for one hospital.  I saw the same program in a different hospital with a charge of $750.  The remote second opinion could advise on a specific treatment option, or could help determine what treatments are available.

    The challenge will be in getting the various players to work together.  In speaking to medical providers, it would be good to continually ask does the individual have ties to the radiation centers?  Does the U.S. or other foreign hospital have any professional relationships in Argentina?

    Thinking about radiation, here are some further thoughts – I imagine you know this already but these postings get a lot of readers so I try to include information helpful to others as well.  One challenge with gastrointestinal cancers is there are a lot of vital organs densely packed together in this part of the human geography, so any treatment has to be carefully devised so as not to take out some other vital organ as collateral damage from the cholangiocarcinoma treatment.  Radiation can be targeted, but some cholangiocarcinoma tumors have unfortunate locations that defy even very skillful, high-tech radiation.  For this reason, it is important to have an expert opinion that radiation is possible.  This requires a careful look at any scans that have been done.  From there, if a patient is viewed as a good candidate for radiation, the radiology center will perform some modeling and planning.  This study will determine if more highly targeted forms of radiation must be used to avoid causing damage.  In my own case, IMRT was necessary because less focused radiation could not be safely done.  The radiologist then sent the planning studies to my insurance company to prove that IMRT was necessary, which can be a difficult approval to get because of the additional cost.

    For your mother’s case, it was not mentioned whether any planning studies had been done to determine if IMRT or proton radiation would be essential to safe treatment.  If not, this is something to consider looking into, possibly with a local institution.  I am not sure how this should be sequenced with seeking a second opinion from another country if that option also seems useful, but certainly the doctors you are conferring with would have an opinion.

    Finally, I wanted to comment on relying on medical journal articles about promising new treatments.  It is great to see potential breakthroughs related to our rare and difficult cancer.  It can be hard, however, to judge the effectiveness from initial studies.  The numbers of patients may be too small to make a statistical inference that would apply to a bigger population.  Moreover, sometimes in initial testing, selected patients may be healthier or younger or otherwise not representative of a general population.  If I were looking into a new treatment, I would use clinicaltrials.gov to identify the listed points of contact for any clinical trial studies of the new treatment, then would try and contact them by phone to have more detailed information about the treatment and early results.

    Apologies for such a long message.  I hope these ideas are in some way useful.

    Take care, regards, Mary

     

    • This reply was modified 2 months ago by  bglass. Reason: Provided corrected information
    in reply to: Choosing between two options #98781
    bglass
    Moderator

    Hi Dancer41,

    It is good news that your husband’s chemo has been effective.  The two treatment options both sound promising but they are very different.  Not being a medical person, I am not able to opine which is better but thought of some questions to look into.

    Surgery with hepatic pump:  The pump has proven very effective for many patients.  There are two cholangiocarcinoma patient blogs where this treatment is discussed.  Both patients had good results.  Please note that the author of the second blog recently passed.  One consideration is the hepatic pump requires tending (like a chemo port), and you should be sure you know what is needed in this regard.

    https://becauseicansir.com/

    http://nowwithouthesitation.blogspot.com

    Immunotherapy with radiation:  This option is newer cancer medicine.  I would ask for information on results to date seen in other patients with a similar genomic profiling to your husband’s.  My layman’s impression with this option (you should ask the doctor about this if he has not already commented) is it may be more systemic and might catch any metastases outside the liver that might be too tiny to see.  There is a Facebook group for immunotherapy patients with cholangiocarcinoma, which also might be helpful for information and questions.  Matt Reidy, who did well with Keytruda and who posts on this board, is the organizer.

    Even very promising treatments don’t work for all patients.  The other question I was wondering about is should the option you pick not work out, would the other of the two options still be on the table.  I know that in some cases, radiation makes it difficult to have subsequent surgery right away, for example.

    I hope this is helpful.  Regards, Mary

    bglass
    Moderator

    Hi Luis,

    I found an on-line publication called “Proton Therapy Today” that maintains a list of international proton therapy centers.  It is locatable through an internet search.

    Proton therapy can be challenging to have approved by insurance in the U.S.  In some cases, the radiologist must demonstrate that more traditional modes of radiation therapy cannot be safely delivered.    A few of our patients have reported having this treatment but it is not yet very common.  Is there a reason it is being prescribed for your mother rather than another form of radiation?

    Regards, Mary

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