Discussion Board Forums General Discussion 36 year old with CC update

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  • #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.

    #99808
    bglass
    Moderator

    Hi Katherine,

    The medical literature appears to think that brain mets are exceedingly rare, but there seem to be a few more cases out there among our patients than the journal articles would suggest.  I recall a conversation with some colleagues about this and we were wondering if a very occasional brain scan might be part of our routine surveillance, especially for longer-term survivors.  I am not sure how doctors would react to this idea given brain mets are not common, and of course, additional scans mean more radiation exposure, so that was just a thought.

    While it was not the best news that a tiny new met has appeared, your surveillance regime is impressively well tuned to be detecting small changes as they happen.  Your doctors’ optimism that it can be addressed and the fact that good treatment options are under consideration are positive points.  Hopefully this is a momentary bump in the road.

    Take care, regards, Mary

     

     

     

     

    #99800
    kbyrnz
    Participant

    Since my last update on this discussion board in June 2019, there haven’t been many changes in my condition until recently. I am still on systemic chemotherapy of gem/ox every 3 weeks in order for my WBC and platelet levels to have enough time to recover and return to a value that I am able to receive treatment. I sill have multiple mets to my lungs as well as in the bone of my L1 vertebrae (which we had decided to hold off on radiating because it gives me no pain). Last months routine scans showed that the lung mets have increased in size but only by 1-3mm and none of them are currently over 1 cm in size. Unfortunately, a new 2mm lesion was noticed on my cerebellum. My oncologist and radiation oncologist put on a very optimistic face, both stating that it is very small and can be treated with radiation. Both doctors suggested that we wait on the radiation and re-scan in 2 months to see if it grows. They said ultimately, it is my decision on how to proceed. I know the possible side effects of radiation to the brain are not pretty but at this small a size I prefer to zap it now as opposed to gambling that it will not grow or spread. I have also asked about initiating radiation to the vertebrae for the same reason.

    Last week I had a meeting with a doctor at Columbia hospital in NYC to discuss potential clinical trials. I have the ATM mutation. There is one specifically that I had read about that injects chemotherapy directly into tumor cells which would hopefully then turn on the body’s immune response to systemically attack other cancerous tumors. Right now I would not qualify because they do not inject into bone and the tumor has to be at least over 1 cm in size. Before knowing about the brain met, the dr said I would qualify once my lung mets grew to over 1 cm. But, brain mets are an exclusionary criteria unless stable.

    Has anyone had a situation similar to my current one? I know brain mets are considered uncommon, however I have met several people with cholangio with spread to the brain.

    Thanks for any input.

    Katherine

    #98703
    bglass
    Moderator

    Hi Kathy,

    It is nice to hear from you and thank you for posting an update.  It is great that your headaches are resolved and treatment is going well.

    I don’t have personal experience seeking approval for abraxane but wanted to pass along a tip for discussion board readers wondering if insurance will pay for a treatment.  Some insurers post their medical policies on their portal.  A former insurance I had offered no explicit links on the portal to its medical policies but if you typed “policies” into the portal search engine a page came up with a directory to policies.  Another route is to do a general internet search of the treatment in question and “medically necessary.”  “Medically necessary” is insurance-speak for “we may pay for this.”  I tried this searching “abraxane” and “medically necessary” and several insurer medical policies came up, including some that seemed to define circumstances where abraxane could be medically necessary for certain cholangiocarcinoma patients.

    Fingers crossed that your next scans bring positive news.

    Take care, regards, Mary

    #98689
    kbyrnz
    Participant

    I haven’t written on this page in a very long time so I will update my story from December when Billy posted that we had just learned about my recurrence. I had 5 radiation treatments to my skull and tolerated it pretty well. The radiation oncologist and I decided that the bone mets to my lumbar spine would continue to be monitored and we wouldn’t pursue radiation to that area since I had no pain, there were no neurological symptoms and there is a risk of compression fractures with radiation to the vertebrae. Thankfully, my headaches resolved after the radiation to the skull. When radiation was completed, I was put back on Gem/Ox. I have the ATM mutation and it seems to respond well to the platin drugs. I have completed 5 months of this cocktail. My latest scans show stability. There are still no lesions in the liver but the lung nodules remain present. The metastasis in the vertebrae seem to be improving. I went for a second opinion at MD Anderson with Dr. Javle in April and he agrees with my current course of treatment. He agrees with my MSKCC oncologist that immunotherapy is not recommended due to my UC and PSC and it would be too dangerous to risk infection if I were to have a flair-up of those diseases. There may be a possibility in the future of incorporating abraxane to my chemotherapy drugs. Has anyone had trouble getting abraxane covered by their insurance? I have my next set of scans for the entire spine to monitor any progression of the mets to my spine at the end of June, thankfully I have no pain.

    #97944
    beatriz
    Participant

    Billy,

    I am so sorry to hear about these recent developments. I came to this site 2 years ago when my father was diagnosed with it and Marion and everybody else here were key in pointing us the needed resources and education.

    I was and I am rooting for Kathy as she is a young brave soul. One thing that I have learned when dealing with this disease and others is that doctors often don’t address the possible roots. Let the doctors do their part but if you can look at the factors they are not allow to discuss like nutrition, supplements, water quality and filters (shower heads included), air quality (if you can get a small portable filter for her room), declutter her room from all electronic items and turn off wifi at night while she sleeps, etc…it may sound silly but any help you can provide her own body and immune system which may need a support or break to their job efficiently. Sometimes I felt like we put too much emphasis in the cancer and not enough emphasis in what was working on the body and how to support it.

    You are a great advocate for her and she is in good hands. I am sure everybody in here is behind you and wishing for a healthy outcome.

    #97923
    vtkb
    Participant

    We met with kathy’s surgeon yesterday, and he was a little surprised that no PET scan was ordered, but went over kathy’s abdominal mri with us which showed nothing in the liver.  The CT scan did now show multiple small nodules in both lungs, which sloan’s radiologist believes to be the metastasis that we were worried about last year (when she had her first lung nodule).  There were no spine lesions on that scan though, so it seems like the cc decided to go to the skull + lymph node+ lungs.  We are set to meet the radiation oncologist tomorrow for the skull, I wonder if they can also zap kathy’s lungs too or if that would cause too much damage to her lungs. In 2017 when Kathy had radiation and just one lung nodule it was too small to be considered for radiation, and we were told its likely nothing as long as it doesnt grow quickly.  Her oncologist is away until the new year, and I do not want to wait that long for some type of systemic treatment- its annoying that we cant see other oncs at Sloan unless her onc requests it, which we are trying to have done. I know someone in the past mentioned having VATS instead of biopsies for lung mets, but I dont know if that was limited to one lobe or all over. I also think with the lymph node biopsied and the rest of her picture a biospy of the lung wont show anything new.   I guess our year of treatment free is now over.  Sometimes I wonder if maybe we had done chemo a little longer (we did 5 months preop, then off a month to prepare for surgery) if it would ve changed anything, or if the mets would’ve shown up earlier and then we wouldn’t have had the year treatment free that we were able to have.  I also wonder if the meningitis which caused an interruption in radiation and a complete stop to chemo (xeloda, she was only able to take one dose of then stop bc it was felt to be too risky post meningitis) allowed whatever strangler cancer cell to survive last year.  Sorry now I’m just venting. I’m also worried kathy’s PSC/Ulcerative colitis diagnosis will prevent her from joining some trials.  Has anyone had RFA to lung mets?

    happy holidays,

    Billy

    #97903
    vtkb
    Participant

    Unfortunately we got news today that Kathy’s cancer has recurred.  In October we noticed that she had a palpable left supraclavicular node and told her oncologist who then sent kathy for labs.  Her Ca 19-9 was in the normal range for her and she was experiencing a cold so they didnt feel that it was anything worrisome. She then had an ear infection so we kind of brushed it off as likely due to that since kathy was feeling ok and her liver labs werent rising.   It stayed the same size though so eventually kathy had an ultrasound which then led to a biopsy last week along with her abdominal and chest scans.  The biopsy came back as positive for cholangio.  The weird thing is I asked if they were going to send the lymph node biopsy for genetic testing and her oncologist said no, bc he knows kathy has the ATM mutation in every cell of her body.  Should I push to have the biopsy genetically tested as well? Shes also been having a bad headache the past two weeks that hasnt gone away, but they held off on a scan of her brain until today so we are not sure what the cause of the headache is.  we are also waiting for the official read of her scans and will see her surgeon in 2 days who usually goes over the scans with us.

    Her onc thinks she can either try the chemo again since it was working before her surgery, or she may be a candidate for a Clinical Trial at Sloan trying out two drugs in combination (avelumab and talazoparib) because she has the ATM mutation in all her body cells. Has anyone used these drugs or know of anyone who has? Its a phase 2 trial targeting pts with BRCA or ATM mutations.  We will have to wait to see if kathy is eligible for the trials, but I wonder if its better to start chemo again to get something fighting the disease while we research the trials more,  or if its better to just start trying to get into any trial that will take her.  I know if the cancer progresses then there will need to be a washout period for any trials to start.  Has anyone had any long term success with just continued chemo indefinitely?  I feel like I’ve read it in the past but cant find the posts now.  I’m also worried about the headache and if its something more sinister, but hope not.  Thinking back the only potential things on past scans were lung nodules that were small and stable and non specific. I’ll also have to wait and see what her surgeon thinks as well.  Any ideas are appreciated, and thank you all.

     

    – update- kathys headache was still bad after seeing the onc so she checked into sloans urgent care.  The dr there told her that they saw likely skull mets which is probably what is causing her headaches. I always thought skull/bone mets was rare for icc, but it seems like any rare thing that can happen has happened. Kathy stayed overnight, and this morning we found out that the brain MRI showed no brain mets (good), but we also found out the CT chest showed growth in the lung nodules they were monitoring and lymph nodes, but no mets in the liver itself.  I’m guessing that means that these mets were from some cancer cells that were left over from before the surgery since there are none in the liver- I wonder if more chemo preop wouldve changed anything but I do remember we were very fearful of staying on chemo too long and letting a chance at resection become inoperable.  Kathy did have gem/ox post op with radiation .  Now the question is do we try chemo again with the radiation for the skull, and if so which type since gem/cis worked well the first time but who knows how these metastases will react now? Or should we just do the radiation and then go for a clinical trial?  I dont like waiting while we know the cancer is growing.

    • This reply was modified 1 year, 6 months ago by vtkb. Reason: Added update
    • This reply was modified 1 year, 6 months ago by vtkb.
    #97570
    middlesister1
    Moderator

    Good morning,

    What great news.  Thank you for sharing-  it gives hope to others.  And, we love sharing in your happiness.  You went through so much to get here, and we look forward to hearing the positive reports in the future-

    Take care,

    Catherine

    #97569
    bglass
    Moderator

    Hi Katherine,

    Thank you for posting an update, and kudos on continued good scans and that you continue to feel well.

    I read back through your postings, and was reminded how aggressive your treatment plan has been.  It is great to see the positive results so far.

    Regards, Mary

    #97568
    kbyrnz
    Participant

    I am approaching the two year anniversary of my diagnosis and thought I would post an update on my current status.  (background info: diagnosed 9/2016,  five months of chemo Gem/cis, liver resection, two months chemo Gem/ox,  five weeks radiation)  This past July, I had another round of scans. Abdominal and pelvic MRI as well as chest CT. I am happy to report that I continue to have no lesions, lymphadenopathy or ascites. The mild intrahepatic stricturing and dilation that is associated with my underlying PSC is unchanged from February. I see a hepatologist every six months and she says I am doing great. My oncologist still sees me for labs every three months and “just to see my face”.  My next set of scans is scheduled for the end of November with my surgeon. I will probably continue with this schedule of appointments for a while. For now I feel good and continue to count my blessings while keeping everyone with this disease in my prayers.

    #96772
    middlesister1
    Moderator

    Dear Katherine,

    Happy surgiversary!  Milestones can mean so much.  One thing very different from when Mom was first DX in 2013 and her recurrence, is that the doctors are not giving her a dire prognosis.  Our hope is to put it back into remission and enjoy living.  Ideally, it stays under control long enough to give treatments options time to improve even more.

    Best of luck- keep the good news coming,

    Catherine

    #96770
    kbyrnz
    Participant

    Well… 3/23/18 marked my one year “surgiversary” .  I had my latest abdominal MRI on 2/28/18 and it continues to show no signs of cancer.  My PSC has gotten a little worse though, as seen by mild intrahepatic structuring and dilation as well as generalized inflammation of the liver that was not seen in my MRI three months ago. My Ca-19 has been relatively stable but my liver enzyme labs have increased. My GI put me on Ursodiol because I have been feeling “itchy” for over a month now. My bilirubin values are still in the normal range. This past MRI was only of the abdomen with another scan scheduled in four months which will include the lungs too.  I can’t believe that this time last year I was in the hospital recovering and would never have guessed what the year ahead would have in store. Looking back on all that I have been through I can honestly say that I now appreciate the small things. I don’t take time spent with friends or family for granted and I certainly don’t have time for petty disagreements that would have been a big deal before. I remain positive for the future and try not to worry about the “what ifs”. Who is to say that I can’t be one of the lucky ones that doesn’t have a recurrence, right?!

    #96399
    bglass
    Moderator

    Billy,

    This is such positive news for Katherine.  Thank you for sharing it with us.

    Regards, Mary

    #96393
    vtkb
    Participant

    Just updating for the new year (Happy New Years) – no news has been good news so far for Katherine.  Katherine finished radiation in October, and both her surgeon and med oncologist rejected continuing Xeloda for her since she’s has so much chemo (5 months preop, 3 months post op).  They figure if the gem/cis preop and gem/ox post op didnt kill off the cancer cells, xeloda wouldnt do much more. Considering the meningitis episode happened while on radiation/xeloda, I can see the risk/benefit thinking of her doctors.  In November kathy had another scan, and still nothing showed up in the liver! She still has the nodule in her lung but it remained unchanged.  Her Ca 19-9 lowered to 20-60 since the end of treatment, but I’m not sure when her next check will be.  Her med onc recommended a scan again in 6 months but we are listening to her surgeon and will have another scan in 2 months.  She’s also back at work. It does feel a little weird to be in the 3 month/ no treatment/ just scans cycle now, considering for the past year and a half its been constant treatments, following labs, side effects, etc.  .

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