googily

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  • in reply to: Husband’s Case #92661
    googily
    Participant

    Alas, when someone goes quiet, it’s often not good news, and that is the case in our world.

    Bill was trying to get onto the dual checkpoint inhibitor trial at NIH, but was delayed by the need to insert the rod in his tumor-weakened femur. He kept complaining about pain after the surgery, and it was determined that in all of two weeks post-op, he had grown a new 2 cm lesion in that femur. There was then a week of radiation on the leg, but CT scans at the end of that week–two months since he ended the FGFR2 trial–showed considerable expansion of his disease, in terms of larger liver tumors and new suspicious spots in his lungs and bowel. And his bilirubin had finally risen out of the normal range.

    We were getting ready to start him on Folfox, but he ended up hospitalized for four nights last week because his pain was not getting managed. They eventually did a nerve block to beat back the leg pain and a steroid injection for his lower back pain.

    He came home Saturday, and while the pain interventions actually seem to have worked to improve if not erase his pain, we are facing the reality that his liver is failing. Bouts of confusion are becoming more frequent, he’s sleeping more, and we are now focused on keeping him comfortable, and hospice has been called in.

    I’m sad beyond measure about what has happened to the man who means everything to me, but I’m also sad that his version of this cancer just was not interested in being batted down. and that the options and possibilities that I learned about through this wonderful community ended up not yet being able to conquer Bill’s disease.

    Thank you to everyone for the advice and the support along the way.

    in reply to: Stressed, scared spouse & caregiver too. #94165
    googily
    Participant

    Hi there,

    I’m so sorry–my husband was diagnosed Stage 4 with bone mets after nothing much beyond just kind of feeling some burning in his stomach that wouldn’t go away. Hard to go from thinking that at worst he had an ulcer to this.

    Be sure you get a biopsy of his tumor sent off for genomic testing, to see if he has any mutations that are responding well in clinical trials.

    It’s a huge burden for you, to not only be sucker-punched with such awful news about your DH but to now have to be the “general” going into battle. One day at a time is all I can say.

    in reply to: REMINDER! Conference 2017 starts now! #94050
    googily
    Participant
    marions wrote:
    googily….Dr. Valle enjoyed the compliment with a great smile.

    Hugs,
    Marion

    I’m embarrassed and happy at the same time!

    in reply to: REMINDER! Conference 2017 starts now! #94046
    googily
    Participant
    marions wrote:
    googily….ha, ha, would you like me to pass this on to him?

    Yes. tell him that I will buy any audio book he ever makes! And I am rapt listening to his annual meeting presentations.

    (also tell him that, honestly, I’m not an insane person)

    in reply to: REMINDER! Conference 2017 starts now! #94040
    googily
    Participant

    Oh man, I adore Dr. Valle’s voice.

    in reply to: Husband’s Case #92659
    googily
    Participant

    Here’s the ClinicalTrials.gov page for the Georgetown trial:

    https://clinicaltrials.gov/ct2/show/NCT02982720

    in reply to: Husband’s Case #92656
    googily
    Participant

    Unfortunately we’ve had a bit of a speed bump–the radiation on DH’s neck went fine, and the pain lessened a good bit quickly, but in the meantime the pain in his leg just above his knee started increasing markedly. They hadn’t imaged it since the summer, and when they did they found a sizeable lesion, with a stress fracture already having occurred and the bone itself looking very weakened. Less than 24 hours later, he was in surgery having a rod implanted in his femur.

    It appears the tumor was mostly necrotic (it took three separate biopsies from three samples to find any easily identified cancer cells, which happened because the orthopedic oncologic surgeon didn’t want to proceed without being sure it wasn’t a separate primary bone cancer). The doctor feels the pain was less from a fast-growing tumor and more from the bone just being extremely fatigued from holding his weight while weakened. We dodged quite a bullet–if it had broken, it would have been a much worse surgery and recovery. He’ll need a short course of radiation on the leg in a few weeks.

    This does put us in a bit of a bind about next steps–he’s already gone three-plus weeks without treatment, washing out from the ARQ 087 trial in anticipation of joining the dual-checkpoint-inhibitor trial at NIH. But NIH says he will need now four weeks from surgery before he could start the trial, which would put him at seven weeks without any sort of systemic treatment. So then the other option would be FOLFOX, which could also take a lot out of him and leave him unable to qualify for trials down the road.

    We’ll have some decisions to make, but right now we’re just concentrating on letting his leg heal. At least the doctor says that his pain should definitely be improved, even before radiation, once the post-op pain lessens.

    in reply to: Husband’s Case #92653
    googily
    Participant

    Just to keep the diary going here…. :)

    He’s going to have a quick five-shot course of radiation for the bone met that’s at the base of his cervical spine–it’s not really that big, and isn’t impinging on the spinal cord or any big nerves as far as can be seen on MRI, but it has fired off all of the muscles around it and his neck and shoulder muscles have been spasm’ed for three weeks now, and even muscle relaxants and an upping of his pain meds haven’t settled it down, hence the decision to zap it. He’s also now getting a steroid pack to help with the inflammation.

    I asked the radiation oncologist about his other numerous bone mets, and she said that none of them have any look that is currently concerning to her, so that’s a ray of good news.

    We have sent his records to NIH, for not only Melinda’s trial but also the trial that combines two checkpoint inhibitors (Tremelimumab and Durvalumab), and also can include either radiofrequency ablation or cryoablation, depending on which arm he’d end up in. So for now, given that he needs a four-week washout from his trial drug before moving forward with either of those, we aren’t doing any systemic treatment at the moment. But other than the neck stuff, he feels pretty good. Still eating well, which to me is always a positive sign!

    (I also started reading up more on the combination of checkpoint inhibitors with radiation, and there seems to be a lot of interest in the research community about how radiation seems to fire off positive immune responses that then checkpoint inhibitors can enhance even further. Very interesting….)

    in reply to: Introduction #93882
    googily
    Participant

    Welcome, but sorry you have to be here!

    You made a good decision by just getting started on chemo, if it was clear that resection was not a possibility. The second opinions will help you have potential next steps in mind, and it’s good to be ready with that info before you need it….

    in reply to: In Rememberence of My Beautiful Husband #93862
    googily
    Participant

    My deepest condolences, Lynn. His positivity and resilience were a wonderful gift not only for himself, but for you. Take care of yourself in these coming days, weeks, months….

    in reply to: Husband’s Case #92652
    googily
    Participant

    Hi Matt! I have read your posts during these past months, and it is so great to see you are doing so well! Your story gives such hope. (as does Melinda’s, and Colleen Wong’s mother’s, and and and…!)

    We are now talking to NIH, and they see a couple of immuno trials that Bill might qualify for, so we are starting the process there. (So lucky to live in the DC area, with Hopkins and Georgetown and NIH all within range.)

    These would presumably be able to happen faster than the Georgetown Keytruda one that is still a few months away, though we know that things don’t always move at lightning speed with NIH.

    Fingers crossed.

    in reply to: Husband’s Case #92648
    googily
    Participant

    Quoting from the ARQ-087 trial thread:

    marions wrote:
    googily……Don’t hesitate from reaching out to Melinda, she is here to help. Regarding Keytruda pembrolizimab) (Merck) and Opdivo (nevolumab)( Bristol-Mayer’s Scibbs) can be pescribed off-label, but difficult to receive insurance approval.

    What about the NCI Match trial? Could that be an option, or the ASCO TAPUR study?

    Hugs
    Marion

    Our oncologists at both Sibley and Georgetown seem to feel that the combo pembro/interferon trial, which is Phase 2 and specifically for cholangio, is worth waiting 2-3 months for, and that given Bill’s still very strong performance status, trying Folfox first should not knock him back too far.

    It’s a bit of a risk, since I know Folfox can be harsh, but he sailed through Gem/Cis, and even with a 10-cm main tumor and numerous smaller tumors, his liver functions are still very good.

    He also probably needs radiation on a met at the base of his cervical spine that is causing him trouble, so that might have an impact on the schedule of next steps as well. We meet with a rad onc next week.

    If you looked at him today, seven months after diagnosis, you would not suspect for an instant that he has stage 4 cancer. So I think that makes everyone feel like he has a little breathing room.

    (All this said, I am also now seeing a Keytruda phase 2 trial at Hopkins, which I’m surprised our Hopkins/Sibley oncologist didn’t know about. Asking about it now. But I wonder if they prefer the idea of a combo therapy for him rather than just straight Keytruda.)

    in reply to: ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor #91471
    googily
    Participant

    Thanks, Marion, and Lainy, and Kris.

    It sounds like the Georgetown Keytruda/interferon trial is probably 2-3 months away from enrolling, so I think we may go with second-line chemo in the interim, given how good he is still feeling overall. (except for the neck pain, so there might also be some radiation first)

    But we do also want to see what’s available at NIH, though we are a bit mystified about exactly how to go about that, whether we just find a trial we are interested in or try to get seen there and have them triage him toward what they feel are the appropriate trials. Maybe I need to send up the bat signal for Melinda B. :-) (Also need to tell her how much time I’ve spent in Billings over the years, despite being from DC!)

    I don’t want to muck up this trial thread further, so I’ll head back to my original thread:

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15012&p=2

    in reply to: ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor #91467
    googily
    Participant

    Unfortunately, Bill’s first set of scans, after 8 weeks on the drug, showed most of his tumors increasing in size, so his participation is over. We’re looking around now for other trials. He now has bone mets in basically every vertebrae, but they are small and not impinging on anything yet or having any structural issues. One may be causing a stiff neck, but otherwise he’s doing okay.

    He’s still only done gem/cis before this trial, so there’s always going to Folfox if another trial doesn’t leap out. (We are interested in one coming at Georgetown for advanced cholangio with keytruda + interferon, but not sure how long it’s going to take for it to actually get underway.)

    Sigh.

    But at least we did meet kris a few weeks ago!

    in reply to: Electrolytes #93325
    googily
    Participant

    Yes, electrolytes are a big thing, along with just general hydration.

    My husband is getting tired of me pushing bouillon on him, but it does a similar job of perking him up and also “priming the pump” for feeling ready to eat something. He also bought low-glycemic-index electrolyte tablets to put in water (since he is diabetic).

    He also now gets a bag of IV fluids once a week. (He’s on a trial drug/pill right now that doesn’t include any fluids, as you’d get with chemo.)

    Drink, drink, drink!

Viewing 15 posts - 1 through 15 (of 57 total)