Discussion Board Forums General Discussion 36 year old with CC update

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  • #101260
    bglass
    Moderator

    Hi Katherine,

    It is good to hear from you.  Thank you for the update.  With covid on top of everything else, you have been through a lot.  I hope the small chemo break puts you in a good position for your next round of treatment.  Fingers crossed the clinical trial works out for you.  Your updates are very appreciated – they add a lot of good information on treatment for our community.

    Take care, regards, Mary

    #101257
    kbyrnz
    Participant

    Update from my last post in March 2021. As VTKB mentioned, in between the mapping for radiation to a cerebellar met and the actual treatment, I tested positive for breakthrough COVID-19. I am convinced that the only reason I had very mild symptoms was because I had been fully vaccinated already for a month at that point. After home-quarentine and the antibody infusion, I successfully completed a one time radiation dose to the brain. What my doctors and I find very coincidental is that the next week I developed a pretty bad case of ascites and had to have approx. 5L of fluids drained from my abdomen. I was placed on a diuretic and it has not returned. My hepatologist stated that she has seen liver changes post-COVID but more so with her liver transplant patients.  I continued with Folfiri through July 2021 when my next set of quarterly scans showed a mets on T6 and L3 vertebrae. We decided to radiate T6 since it had grown in the three months since my previous MRI despite having no symptoms. We decided to hold off on radiating L3 since I had no symptoms in that area either and the met was not near the spinal cord, only in the vertebral bone. I normally tolerate radiation very well but this time I had the “pain flair” a few days after treatment as well as horrible heart burn. When these new mets were discovered, I had the conversation with my oncologist that the Folfiri was keeping my lung mets stable however it wasn’t preventing new bone mets to my spine. Folfiri, for me, was tough to tolerate and having been on chemo of some sort since 2018, my liver (according to labs) was getting “tired”. We decided to look into a clinical trial at MSKCC for the drug RP-3500 (an ATR inhibitor). The trial Doctor thinks I am a good candidate for it and someone who presents with mutations close to mine has been having good results. The first week of the trial involved a lung biopsy which was uncomfortable since I was still experiencing the pain flair from radiation. Twice that first week involved 10-hour days of repeated EKGs and blood draws.  When I went back for week two, I had very low WBC counts and low platelets as well. We had to hold the drug. The same thing happened for week three. I looked back at labs that I had after previous radiation treatments and my platelets always dropped significantly but not so much for the WBCs. Looking back I think I should have given myself more time in between radiation and starting the trial. I don’t want to be thrown off before I practically even get started. That is where I am currently. I am waiting to see what next weeks labs look like before we decide what to do. It has been about a month since I had radiation to my spine but even longer since I had any sort of chemo and in the back of my mind I fear that there will be growth somewhere. Oh… and now I am having low back pain which I am attributing to the L3 met. UUGH, I hope everything falls into place soon.  Thanks for listening. -Katherine

    #100894
    vtkb
    Participant

    Just another update- despite both of us being vaccinated, kathy caught covid – her only unmasked exposure was ironically enough for the MRI for radiation mapping.  She’s doing ok, was able to get monoclonal antibodies which I will post about separately.  Hopefully this will allow her to continue her treatments uninterrupted.

    #100885
    bglass
    Moderator

    Hi Katherine,

    Thank you for the update – it is good to hear that your current treatment is keeping your cancer pretty much at bay, and that each concern that has come up has found a good solution and response.  I wish there was a better way to reduce your side effects, and hope a trial opens that you can join.

    Fingers crossed that the new brain met is quickly behind you.  Take care, regards, Mary

    #100883
    Hannaha
    Participant

    Thanks for the update Katherine! I’m glad to hear that you’re doing well and managing new road bumps as you encounter them. It seems like your experience, like my mom’s, has been a story of recurrences outside the liver. Your story gives me hope. Fingers crossed that you’ll be able to find the right answers to your questions about trial eligibility.

    #100882
    kbyrnz
    Participant

    Update from my last post in Nov 2020. I continue on Folfiri every other week and I feel that it is more harsh than the gem/ox was. I definitely have more fatigue and nausea on this regimen. I ended up receiving radiation treatments to my  T10-T12 vertebrae in mid December because even though I was having no symptoms, there was evidence that some epidural encroachment had begun and it was better to radiate then as opposed to waiting. I tolerated it well. My next set of quarterly scans in early Feb showed no progression in the lungs and that the spine mets were calcified over and the epidural encroachment had completely resolved. The CT of my lungs did show that an already known pleural effusion had grown and my oncologist recommended having it drained. I had 0.7L drained from my right lung in mid February which thankfully showed no cancer cells in the fluid. My doctors think it might be the result of low albumin levels in my blood either from chemo or just from cancer in general. The MRI of my brain showed a new .4cm met in my cerebellum. Almost exactly a year ago I had a .5cm met in my cerebellum which was successfully radiated so that is the plan for this new discovery as well. I already had the simulation and a more detailed brain MRI with the plan of receiving one radiation treatment next week. I have no symptoms from this brain met and hopefully will have as good an outcome as the previous one.  I am still on blood thinners for my history of DVTs but I was changed to Xarelto instead of lovenox which is a little easier to manage. Surprisingly enough, even though I find Folfiri more difficult to tolerate, it doesn’t seem to have as much of an impact on my blood counts as the gem/ox did. My WBCs are pretty steady, as is my bilirubin, my platelets and my ALK-PHOS. They are all on the low side of normal but have never dipped into an unsafe range. Now if I could only get my albumin to do the same. I am trying to raise it with diet but may need an albumin infusion sometime in the future.  March 23 is my four year surgiversary where I had most of my right liver resected. Knock on wood, my liver has remained “healthy” through all of these episodes of metastatic spread so I am happy about that. I just keep on plugging along and deal with new things as they pop up. I continue to look at clinical trails for my ATM mutation but a lot of them exclude patients with brain mets or with auto-immune diseases (I have UC and PSC). Hopefully I will find something one day because life-long chemo does not sound appealing.  Thanks for listening. Any input is always welcome.

    -Katherine

    #100558
    kbyrnz
    Participant

    Sept 29 2020 was my 4 year “diagnosaversary” of ICC. Since the latest post back in March, there have been some changes to my journey.  I am still on lovenox for the blood clot and was told that I most likely will be until a year after I finish chemotherapy (which currently has no end date in sight).  In July, I had 5 treatments of radiation to my L1 vertebrae because a scan showed that it had grown and it was giving me considerable discomfort both at rest and with any sort of movement in the low back. Fortunately, the pain has disappeared after the radiation with minimal side effects (mostly acid reflux).  In mid-August, I had my scheduled quarterly chest, abdomen and pelvic CT scans which showed growth in the lung mets. (Currently all of my disease is in the lungs and spine, my liver is clear). Everything is still pretty small however some mets had doubled in size (from 0.3cm to 0.6cm or from 0.5 cm to 0.9cm). My oncologist and I decided to switch it up a little since I have been on gem/ox for over a year. (I have the ATM mutation which responds well to platin drugs which is why they think I have tolerated it so well and for so long).  I started Folfiri at the end of August and have had 5 treatments so far.  After 2 treatments, I had my regularly scheduled brain/skull and spine MRIs. They showed progression in the spine, now with mets in T10, T11 and T12 in addition to the one in L1 that had been successfully radiated. My radiation oncologist thinks it was too soon after the start of Folfiri to say that it it wasn’t working and we are waiting until my next set of scans to see what to do about these new spinal mets. So far I have no pain from them at all. I should have new scans sometime in November.

    I am still a patient at MSKCC but I keep in contact with Dr. Javle at MDAnderson as a sort of second opinion. He agrees with the reason behind switching from gem/ox to Folfiri. He mentioned if the Folfiri isn’t working I could also look into a PARP inhibitor trial, an ATR inhibitor with or without immunotherapy or specifically TC-210 trial which is both at MDAnderson and at MSKCC.

    I would appreciate any input from others in a similar situation. What else have you tried after traditional chemo gem/ox or gem/cis or Folfiri/Folfox? Has anyone been in the Yeliva trials? Unfortunately my ulcerative colitis (which is controlled) is preventing me from being accepted to many trials (especially the immunotherapy ones), even though my gastroenterologist doesn’t think it should be a problem.

    Thanks, Katherine

     

    #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 2 years, 9 months ago by vtkb. Reason: Added update
    • This reply was modified 2 years, 9 months ago by vtkb.
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