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  • in reply to: Financially #96101
    bglass
    Moderator

    Joy,

    Cancer treatment can be financially toxic, and as you note, there are many costs such as travel which are in addition to treatment costs.

    JH has reduced cost options for long term parking.  It looks like you may be able to get the parking cost down to about $6 per day using JH parking discount stamps.

    Please check the IRS publication on medical expense deductions.  Some parking and travel costs may be deductible if you qualify.  This may help defray your costs.  (In 2018 this may no longer be possible as some versions of the tax reform bill would end deductibility of medical expenses.)

    It is also possible to look for ways to avoid or reduce travel once surgery is over and you are back at home, via having follow up care coordinated between JH and your local doctors

    Please let us know how your appointments go and if surgery is decided.  This board is a welcoming community possessing a wealth of information and experience on this rare cancer.

    Regards, Mary

    in reply to: INCB 54828 #96096
    bglass
    Moderator

    Hi Sandy,

    Thank you for the update.  From what you describe, this all sounds very positive.  Fingers crossed for more good news in December.

    Regards, Mary

    in reply to: has anyone been treated at John Hopkins Hospital #96095
    bglass
    Moderator

    Hi Joy,

    Welcome to our discussion board.

    I had my resection surgery at JH Hospital in Baltimore in 2015, with a good experience overall.  Do you have any specific concerns?

    Regards, Mary

     

    in reply to: cisplatin with gemcitabine #96079
    bglass
    Moderator

    Hi Rev. Wayne,

    Thank you for your note and hope that all is well.  Good to hear you have linked up with a major cancer center.

    Is the chemo you mentioned adjuvant, namely a precautionary treatment after surgery?  Or did your doctors find a recurrence?

    If adjuvant, gem-cis is a common choice but there are other regimens that patients have followed.  The BILCAP (capecitabine) regimen that showed good results in a recent study would be one – it has the advantage of being entirely in pill form which is more convenient than infusions.  Gemcitabine alone, gemcitabine plus capecitabine, and gem-cap plus radiation are among other adjuvant therapy options that have been used.  Oncologists will have very specific reasons for the regimen they recommend – but it is important that as a patient you ask about the choice and review what other options may be out there.

    If the treatment is not adjuvant, gem-cis is the usual first go-to chemo for CCA.  As Gavin noted, there are a lot of posts on this board about gem-cis experiences that can be found via the search engine.

    If you will be having chemo infusions, your doctor will likely discuss your getting a port, an option that many patients find helpful in reducing any discomfort from the infusions.

    I hope your appointment at Mayo goes well and brings you a great way forward.

    Regards, Mary

     

    in reply to: Scan results #96057
    bglass
    Moderator

    Brigitte,

    This news is so encouraging!  Thank you for sharing it.

    How soon will you be scheduled for the ablation procedure?

    Take care, regards, Mary

    in reply to: INCB 54828 #96052
    bglass
    Moderator

    Hi Arapro,

    I am sorry to hear that this trial did not work out for you, but happy to know you have another treatment option lined up.  Hopefully the next treatment will do better for you.  Is the Keytruda part of a clinical trial?

    Take care, regards, Mary

     

    in reply to: Just diagnosised #96044
    bglass
    Moderator

    Hi Kasia,

    Fingers crossed that the planned chemo will do the trick and get you to surgery.  I don’t think there are good data on success rates given the small numbers of patients with our rare cancer, but there have been quite a few folks on this board who were able to have surgery after some chemo cycles.  The chemo will also lower the risk of the cancer spreading, which also helps get patients to surgery.  If you want to look through internet info, try searching “cholangiocarcinoma,” “neoadjuvant,” and “downsizing” or “downstaging.”

    When the CCA is only found in the liver, there are also localized treatment options patients look at with their doctors.  Some of these have good track records in shrinking or eliminating tumors.  I have copied a citation that reviews these treatments below.  If you search the treatment names using the discussion board search engine (e.g., “TACE”), you should find some patient stories about their experiences.  Some are in the radiology realm, so you may wish at some point to consider a consult in that specialty if your treatment center is not already using a team approach to determining treatment.

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

    The most common chemo mix used for cholangiocarcinoma is gemcitabine with cisplatin.  Some oncologists may elect other but similar chemo regimens (e.g., gemcitabine plus oxaliplatin), for example, if they believe the patient will better tolerate the potential side effects, since side effects can vary from one chemo drug to another.

    Be sure to ask lots of questions as you proceed with treatment.  It sounds like you are in good hands and you are doing  lots of research into treatment options.

    Regards, Mary

     

    in reply to: My MIL – loved and missed by many #96027
    bglass
    Moderator

    Dear Angela,

    Please accept my prayers and condolences for your family’s loss.  Rosemary was surrounded by love and comfort throughout her CCA journey, as well as the devoted care and attention by her family and medical caregivers.  Your persistence in pushing for answers regarding her care certainly made a difference for preserving Rosemary’s quality of life during this difficult time.

    Thank you for sharing Rosemary’s story on this board.  Please stay connected with this community – your experience with CCA and all you have learned will be valued and appreciated by others coping with a CCA diagnosis.

    Regards, Mary

     

    in reply to: Husband of 35-years-old ICC patient #96023
    bglass
    Moderator

    Dear JH,

    Thank you for the update – I am sorry to hear that the original biopsy submission for genomic testing did not produce the information you need.

    Not being a medical specialist, regretfully I do not have a good answer to your question regarding the biopsy.  If you look at the Foundation One website, there are detailed instructions on how to prepare the biopsy specimen (“Specimen Instructions” and “Specimen Guidelines”).  I assume your treatment center would be following these.

    How is your wife finding the chemo treatment?  I hope this is going well for her.  Please keep us posted.

    Regards, Mary

     

    in reply to: Heartbreaking – the end of life is near #96008
    bglass
    Moderator

    Dear Hopeseeker,

    Your posts are very appreciated by the board community.  Your mother’s path with this cancer has been a tough one, and she is blessed to have you and your family looking out for her and keeping her as comfortable as possible.

    A board colleague posted some good information on end-of-life some time ago.  I copied the link below for you.

    https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/care-fact-sheet

    Sending many prayers for Rosemary and for you and your family.  Please continue to let us know how you are doing.

    Regards, Mary

     

    in reply to: Now in Hospice #95988
    bglass
    Moderator

    Dear Hopeseeker,

    Thank you for such a sensitive description of your visit with your MIL.  It sounds like, despite how tough this all is, you and your family were able to create lovely and happy moments for her.

    I was wondering about one reflection you have made – about your MIL feeling unready and fearful.  Does she articulate specifically why she feels this way?  Sometimes people find it hard to explain their fears.  For example, if she is fearful of pain or worried about unresolved business or about other family members, there may be ways to comfort her, through her medical providers or through actions or reassurances your family can make.

    Your MIL must be very comforted by you and your husband’s care and devotion.  Please count on my prayers.  I am hoping the hospice care brings her many good weeks and months ahead.

    Regards, Mary

    in reply to: 6 year survivor #95965
    bglass
    Moderator

    Dear Genevieve,

    Thank you so much for sharing this wonderful and inspiring news about your husband.

    And congratulations to you as well, for helping your husband through a journey of multiple treatments and all the ups and downs they entail.

    You are both heroes!

    Regards, Mary

     

    • This reply was modified 2 years, 7 months ago by bglass.
    in reply to: Surgically difficult tumor #95961
    bglass
    Moderator

    Hi Kasia,

    Welcome to the discussion board.

    Your question sent me looking as I had not been aware of this form of liver surgery for cholangiocarcinoma.  There is always something new to learn about.

    The surgery you describe seems to go by a number of names, including “liver autotransplant,” “ex vivo hepatectomy with autotransplantation” and “ex situ liver resection,” (as well as variations of these terms) for purposes of internet searching if anyone is interested in learning more.

    This is a very uncommon form of resection where the liver is removed from the body, resected to remove the tumor(s), then part of the liver is returned to the patient – as you describe, it is like a living donor partial liver transplant except the living donor is the patient himself (or herself).  It has been used for cases of liver cancer or metastasis where the location of the cancer in the liver makes a more standard resection infeasible.

    One article I saw described this surgery as the most complex liver surgery available.  It is described as high risk, has rigorous criteria for patient eligibility, and demands a level of surgeon skill only available at very experienced liver transplant centers.  So few of these operations are performed that there do not seem to be much long-term data yet on patient outcomes, although there are individual cases of good results.

    Gavin recently posted an article on this type of surgery on this board – here is the citation.

    https://www.ncbi.nlm.nih.gov/pubmed/29022283

    Please let us know if you learn more about this procedure, and how you are doing in your path to treatment.  There is a great and welcoming community of patients and caregivers here, and we learn from one another.

    Regards, Mary

     

     

     

    in reply to: UnitedHealthcare Medicare Advantage #95947
    bglass
    Moderator

    Hi Bruce,

    Welcome to the discussion board.  Vectibix is a less common treatment for CCA.  Hopefully there is experience with Vectibix among our board readership.

    If you use the discussion board search engine and look for Vectibix or panitumumab, you will find a few past discussions of this drug.  I read through some of these postings, and one board member (“jessrose”) does mention insurance issues.

    Please note that the messaging feature on this board permits you to send a private message to another board member, if you would like to ask a direct question.

    You may have already explored this, but I wanted to note that some drug manufacturers offer (limited) financial assistance to patients meeting their criteria, or may offer assistance in securing insurance approvals.  This information would be available on the company website, if such assistance is offered.

    With a rare cancer, sometimes our medical care providers have to make a strong full-court press with insurers, particularly if a less common treatment is recommended.   The hours spent by patients and caregivers on the phone with insurance and doctors are not much fun!

    I hope this works out for you – keep us posted, it is so helpful for others facing similar concerns.

    Regards, Mary

    in reply to: I’d Hoped Not to be Back Here …. #95928
    bglass
    Moderator

    Fred,

    Thank you for sharing your great news!

    Regards, Mary

     

     

Viewing 15 posts - 391 through 405 (of 513 total)