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  • in reply to: meds not working on my sister anymore #100008
    vtkb
    Participant

    was your sister ever considered for just a resection instead of transplant? If the cancer hasnt spread outside the liver she may still be a candidate.  My wife has UC, PSC (diagnosed during her resection) and ICC diagnosed when she was 36.  Shes now 39, and the resection gave us 1.5 years of NED before it came back with mets to the skull spine and lungs.  Granted, the extent of the PSC may make your sister inelgible/not a surgical candidate, but its worth asking surgeons in the area.  Good luck.

    • This reply was modified 3 weeks, 4 days ago by vtkb.
    in reply to: 36 year old with CC update #99938
    vtkb
    Participant

    So 10 days ago, Kathy’s left neck looked swollen so we went to the MSKCC urgent care clinic- I was praying it wasnt SVC syndrome, and it wasnt, but it turns out kathy has another blood clot.  Same spot as last time. It seems the port (since removed)/picc/central line  that she had back in Oct 2017 likely caused some vessel damage making that the spot prone to DVTs.  We had just returned from a flight from the Bahamas, but that wasnt a long flight by any means.  At least she was able to still get the brain spot radiated (1 day only).  Shes doing well now, on lovenox but has to get blood draws frequently to check her platelet counts.

    As an aside- with the Covid19 virus going around (coronavirus), I hope all of you are taking care to self distance/isolate as much as possible.  But I also hope your care givers are doing the same. Make sure they are washing their hands and self distancing as much as possible so they dont spread anything to you.  I’ve seen how this disease has affected even young previously healthy patients, so please protect yourselves.  I’ve also seen firsthand how its overwhelming our hospital systems. If a family member has decided to socialize (church, bar, big gatherings, working with someone who now has flu like symptoms) recently, don’t allow them to come over for a few weeks.  They can spread the disease before they even know that they have it.

    in reply to: Pemigatinib compassionate use #99854
    vtkb
    Participant

    Although I haven’t had to deal with this directly, I’m pretty sure in the US the process goes like this- patient asks doctor, doctor agrees its worth trying, doctor asks/petitions company (and may at the same time petition patient’s insurance), then the FDA has to grant approval if not already done for that drug.   So the doctor has to contact the pharmaceutical company.  The doctor may think it’s not worth the risk and if so that’s the end of the plan (before it ever gets to the pharm company or FDA).   Also, in the US, most insurances will not cover experimental treatments, which include compassion use drugs.  That’s why the doctor has to petition for insurance coverage also.  A lot of pharmaceutical companies will provide some type of relief or vouchers though if they believe their drug may help you.  If I remember correctly one patient here was able to get Keytruda for free after the first couple of infusions showed benefits.  You can probably ask this same question on the cholangio warriors patient facebook page for a more detailed response from patients who have taken this route.

    in reply to: Survived very long #99510
    vtkb
    Participant

    Catherine,

    I am so sorry for your loss.  Your mom’s story inspired many (including me and Kathy) to have hope beyond the initial grave diagnosis given to most.  You have our deepest condolences

    in reply to: Introduction / Welcome #99471
    vtkb
    Participant

    https://www.cancertreatmentsresearch.com/community/immunotherapy/dr-williams-clinic/   This had a patient perspective thread with a patient (meech) who had a similar cancer to cholangiocarcinoma.  Not sure if reading the thread will give you the answers you seek.

    There is a clinical trial now recruiting that wants to combine intratumoral chemo (cisplatin/vinblastine) and immunotherapy in some centers in the US- that may be an alternative to what you suggested with Dr. William’s Clinic.

    Good luck in your journey

    in reply to: Mom Diagnosed in April #98957
    vtkb
    Participant

    Im sorry to hear of your moms diagnosis.  You didn’t mention where you are being treated, so I think the first step is to seek a second opinion at a major cancer center (MD Anderson, Sloan Kettering, etc) if you are not at one already.  Browse the posts on these sites as much as you can tolerate to learn more about the disease and how people have handled it.  Was your mom’s tumor biopsy sent for genetic testing? If not, push your onc to do it or have them send it to Foundation One- those results may open up a whole new set of treatment options for your mother.  Good luck!

    in reply to: MD Anderson – Cooper #98424
    vtkb
    Participant

    I have no experience with md anderson cooper, but if you live close enough to it you should also be close to Fox Chase, where some former members have been treated.  We went there for a second opinion and liked the drs we met, but kathy stayed with mskcc as they offered the same things.

    in reply to: CC in Delaware #98210
    vtkb
    Participant

    Karen,

    Is the mass confined to your liver or has it spread to other parts of your body?  If it is still only in the liver, go to one of the surgeons experienced with CC- the general surgeon at jefferson may not have been experienced enough for a resection but if you are a surgical candidate, you should seek out surgical opinions quickly.  YOu may be able to send your scans to some surgeons to see if they will see you for a second opinion. Seek out one of the liver surgeons at Fox Chase in philadelphia, Johns Hopkins, and in NYC ->MSKCC (Dr. jarnagin), Mt sinai (Dr Schwartz) and Columbia (Dr. Kato).  Worst case you have a second opinion which says surgery is not an option.  Best case you get an experience surgeon giving you a better chance at beating this cancer.

     

    Billy

    in reply to: New Here #98168
    vtkb
    Participant

    Maryrita,

    My wife has both PSC (found out at her liver resection) and ICC, as well as UC.  She was diagnosed sept 2016. There are multiple posts on here to help people get started in fighting this disease, but the main/common themes are: Get copies of your scans.  Get a good surgical resection opinion (although it depends on which lymph nodes are involved, where your tumor is etc, usually with lymph node involvement you wouldnt be a surgical candidate up front). Get a medical oncologist who treats this disease and also a second opinion – the first chemo they try is usually gem/cis.  Ask to get your tumor and blood tested for genetics.  Based on the genetic profile of your tumor there may be targeted therapies available or clinical trials that you can be eligible for.  You’re likely in good hands at Mayo, but there are other major centers that are also good if you want second opinions- MD Anderson, MSKCC, etc.  You may want to also join the cholangiocarcinoma warriors facebook page which is for patients only and ask some questions there as well as on this board.  Good luck in your journey.

    -Billy

    • This reply was modified 1 year, 3 months ago by vtkb.
    in reply to: Her2 amplifier ICC Treatment Option #98147
    vtkb
    Participant

    Try this website:  https://ccr.cancer.gov/Surgery-Branch

    I believe the trial is still open, if you fit their criteria.  Kathy was rejected (because she has UC) but we had originally reached out via email with her story and they got back to us in a timely manner. There should be a link on the website above with the clinical trials at NIH

    in reply to: vomits #98107
    vtkb
    Participant

    Gavin, ondansetron(zofran) comes in sublingual forms as well- I think that’s the anti nausea med you were referring to.

    vtkb
    Participant

    Interesting.  I know with other cancers (breast , ovarian) they have studied if there was any benefit to using propofol instead of inhalation agents during resection surgery but the results proved inconclusive.  When Kathy had her surgery, Mt Sinai was part of a randomized clinical trial comparing the same thing.  I must also warn though in the article above they mentioned  cellular exposure to propofol for 24-72 hours- prolonged exposure to propofol in humans (especially over 48 hours) can lead to severe complications such as  propofol infusion syndrome.

    in reply to: MD Anderson Cancer Center at Cooper #98037
    vtkb
    Participant

    I’m not sure if they would do anything differently but when my wife was first diagnosed we went for a second opinion at Fox Chase near Philadelphia.  There was another person who used to post here (unfortunately she passed away, I think) who switched her treatments from Sloan to Fox Chase if I remember correctly.

    in reply to: avelumab + talazoparib? #97932
    vtkb
    Participant

    Thanks Mary,

    Her oncologist is going to try to get compassion use for the PARP inhibitor as he strongly believes in it unlocking some benefit for Kathy, but I’m not sure which inhibitor or if we don’t get it how much it would cost to try it.  I’ll update as we get more info.

    Billy

    in reply to: avelumab + talazoparib? #97930
    vtkb
    Participant

    We heard back from Kathy’s oncologist- unfortunately after he spoke with the Dr in charge of the clinical trial it was decided that Kathy cant participate in it due to her ulcerative colitis.  I fear this will keep her out of any potential immunotherapy trials as they dont want to risk worsening the colitis although I have read anecdotal stories of people with UC getting benefit from immunotherapy  in other cancers (such as melanoma) without worsening the UC.  I wonder if any other cholangio pts have UC and were able to participate in these type of trials.

Viewing 15 posts - 1 through 15 (of 72 total)