March 15, 2017 at 3:00 am #92666
Dear Googily, I am truly sorry to read about Bill. I pray he is comfortable and that the end of the journey goes smoothly as well. Keep hold of his hand and telling him you love him as he will hear you. Sending prayers and giant hugs.March 14, 2017 at 11:51 pm #92665middlesister1Moderator
I’m very sorry to hear that Bill could not win this battle, but unfortunately we know that even with a strong will and being supported by love, this cancer takes too many from us.
I hope that hospice is keeping him comfortable and allowing you time to focus on your love and the time you can share together and left them be the caregivers.
My thoughts and prayers are with you,
CatherineMarch 11, 2017 at 6:43 am #92664debnorcalModerator
Thank you for taking the time at this very difficult time, for posting your update. I am so sorry that Bill’s health has taken this trajectory. You and he will be in my prayers.
DebbieMarch 10, 2017 at 11:32 pm #92663marionsModerator
googily…..I am so very saddened by your news. Bill and you fought a vigilant fight and together you will walk the path at hand. Although the unthinkable is coming true, know that the days, weeks or months ahead are the most precious of your life. Take it in, dear googily, with the help of hospice you will be able to focus on each other only.
My heart is with you,
MarionMarch 10, 2017 at 4:43 pm #92662darlaParticipant
I am so sorry to hear of Bill’s current situation. Hospice will be a great help to both of you and keeping him as pain free as possible is a priority. Know that my thoughts and prayers are with you both and that we are here to help and support you in any way that we can.
DarlaMarch 10, 2017 at 4:35 am #92661
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.January 31, 2017 at 9:14 pm #92660marionsModerator
As always, dear googily, thank you for all the information provided.
Please let us know how you plan to move forward.
MarionJanuary 31, 2017 at 4:00 pm #92659
Here’s the ClinicalTrials.gov page for the Georgetown trial:January 31, 2017 at 3:49 pm #92658nycdaughterParticipant
Do you have any information on the Georgetown trial for Keytruda, specifically the name of the person running it?January 29, 2017 at 2:04 pm #92657
Dear Googily, so happy to read that hubby now has a good leg to stand on! As is usually the case things need to be taken one step at a time. No pun intended! You are both amazing and I hope for you both to get over this bump quickly. Best wishes for a quick healing.January 29, 2017 at 2:01 am #92656
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.January 20, 2017 at 11:05 am #92655middlesister1Moderator
Thank you for the update-
Lots of good wishes coming your way,
CatherineJanuary 18, 2017 at 1:46 pm #92654
Dear Googily, best of luck on Hubby’s radiation and sure hope it does some good for him. The way you 2 plug away at this is amazing, you are a ‘poster couple’!January 18, 2017 at 1:33 pm #92653
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….)January 11, 2017 at 11:03 pm #92652
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.
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