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[cancer] Things I forgot in my previous post

Two things I meant to say in my previous post today, and just plain forgot.

The first is that while the NIH treatment didn’t work for Jay, the NIH docs did say that the data they got from his participation will be of great help with future patients. So Jay’s other stated goal of this trial was met: SCIENCE! This pleases Jay.

The second is that while we originally stated that there was a second trial that Jay would participate in if the first didn’t work, the reality is that his condition is so poor now that his participation in that trial would be miraculous. He would have to recover to the point of being almost normal again, and given how the tumors have progressed, I think this is highly unlikely. Not impossible, mind you, but not likely. None of us, the NIH docs included, realized just how debilitating the first trial would be for Jay.

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[cancer] Well, the news isn’t good

We heard back from the docs at NIH, and the news isn’t good. The treatment is not working, so they’ve released Jay back to the care of his doctors at OHSU.

We are working with his palliative care doc and a team of hospice workers to make Jay as comfortable as possible for as long as he has. We’re still hoping to build up his strength as much as possible, but that’s the most we are trying to accomplish other than comfort.

People have been asking about visiting Jay. All I can say at this point is: we’re working on it. His energy level is extremely low, and visitors drain him terribly. I think it is this right now that is breaking my heart the most, how this most social and gregarious of men has been drained to the point where a simple conversation is exhausting.

Fuck cancer.

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[cancer] Slightly better news

Jay actually ate something today. It wasn’t much, but in the grand scheme of things, it was huge.

I’m hopeful again that we’re finally seeing a climb out of the rigors of the treatment.

Fingers crossed, everybody, that this is a trend, and not just a blip.

CT scan tomorrow and MRI on Monday, which along with the bloodwork done this past Monday constitutes the next set of scans for NIH. More news on those as I know it.

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[cancer] Another dreary update

It’s been a discouraging week here.

A little over a week ago, Jay went off the the one drug that helped his appetite but blunted him mentally, and while his cognitive and mental focus have improved dramatically, his appetite has disappeared. He is now completely on a liquid diet, save for 8 grapes a day. I’d estimate that this shift has reduced his daily caloric intake to about 500 calories.

We saw his palliative care doctor at the end of last week and there was some conversation with the NIH doctors as well. The NIH docs recommended moving up the date of Jay’s next scans so that they can tell sooner whether the treatment is having any effect. The reason for this is that the best drugs to help him with the appetite and nausea and cough issues contain steroids, something he’s not allowed to have on the trial.

So if we discover that the NIH treatment is not being effective, then we can move on to these steroid-based drugs and see if they help.

If the NIH treatment turns out to be effective, it’s not clear to me what the next steps are for alleviating Jay’s misery.

We also saw Jay’s home (OHSU) oncologist today as a follow-up from the palliative care doctor visit, and got a prescription for Haldol (recommended by the palliative care doc) to add to Jay’s repertoire of nausea inhibitors.

Jay’s CAT scan also got moved up to this Thursday from next Monday. The MRI is still next Monday.

We spent a couple of hours today at OHSU while Jay got some IV hydration. I asked him if it made him feel any better, and he said not really, but he certainly looked better and was more mobile on the way home.

We’re looking into home health aides, to give me a much-needed break.

So that’s the lay of the land as it stands now.

I don’t know how long it will take us to hear back from the NIH docs once the scans are done, but rest assured I’ll let everyone know as soon as we know anything.

Thanks for all your good thoughts – they are very much appreciated.

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[cancer] Latest update

So, things are still pretty grim and quiet on the homefront.

 Jay is still having food issues, and is sleeping almost all the time now.  He wakes up well enough to have a snack or to take his pills, but if he’s in the chair, he’s asleep.

He’s also having issues sleeping at night; I think some of that is physical comfort issues and some of it now is medication withdrawal.

This week he went to a hypnotherapist, which I think did wonders for him, and an acupuncturist. That latter was just this morning, so no way to tell if it had any effect. He’ll continue seeing both of them for the foreseeable future.

After the positive effect he saw from the hypnotherapy and his daily guided meditation from the hypnotherapist, we decided to take him off the anti-nausea drug that makes him so stupid and see how that went. It was going pretty well until today, with his three-times-a-week antibiotic dose.  We’ll see how it goes from here. But this is what’s affecting his sleep, as going off this drug has insomnia as a side effect.

He’s still not eating enough to keep his weight steady, and his appetite has definitely diminished after going off the one med, which is an expected effect.

Still hoping the hypnotherapy especially and the acupuncture will help to release him from the prison of not being able to eat.

More news as we know it …

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[cancer] Still not much improvement

I continue miserable, and thus does everyone around me. Been home for a week, still have not managed to either have visitors or go out. Next week is the sixth anniversary of my onset of symptoms. We will not be celebrating.

There’s a bunch of medical stuff going on, as usual. Don’t know where it leads, as usual. Will report more when there is more to report. For now, bleh.

Also, I continue to be off almost all social media including email.

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[cancer] Results of first follow-up at NIH

Jay went in for his final apheresis today and we met with the doctors to talk about the results of yesterday’s CT and MRI scans.

To cut to the chase: there were no new tumors present, and some moderate growth of the existing tumors. As we expected (and as the doctors led us to expect), it is too soon to tell whether the protocol treatment has had any effect.
We will be back sometime in mid-May for the second follow-up, at which we hope and expect to learn more.
The apheresis done today was strictly for research purposes; it had no direct treatment effect at all. It’s not clear to me what further research was being done, but we might learn that at our next visit.

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[cancer] Still here, still overwhelmed

Some basic nutrition and lifestyle issues got in the way of well, everything. They still are, but things get better. I had a major rebalancing of my medications, which has made me even more listless and goofy but has restored (more or less) my ability to eat.

Tomorrow I have CT and MRI appointments at NIH. I never mind CTs, but MRIs are the soul of tedium.

Tuesday morning I have a follow up apheresis appointment, my last I believe, then in the afternoon I see my NIH doctors in clinic for an initial analysis of the trial results.

We already know this won’t be a full and final declaration of whether the trial was a success or not and my status going forward. There are number of possible data artefacts both positive and negative. But we hope to get a trend. I’ll come back in mid-May where we should nail it down better.

My anxieties are easy to imagine, though mostly masked by the medication right now. Sorry to be so low-bandwidth, it’s very hard to focus lately.

Jay

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[cancer] Which way am I going?

Just had another slo-mo meltdown with the gracious Lisa. I am having a very hard time.

Part of the problem right now is we can’t tell which direction I’m going in. Most of my current health issues (other than the food, which is both dominant and a special case of conditioning and attempts at deconditioning) could point to either me slipping further into my terminal decline, or to me responding to the recent experimental immunotherapy protocol. Or both. And we won’t know for sure until mid-May, though it’s possible negative evidence will emerge in my consultations on 4/14 and 4/15.

So, yeah. Am I living or dying? What does all this exhaustion mean? How tired can one human being be?

Hence the lack of blogging and email. Fragile hope is under great duress, and my energy levels are similar to late chemo after six months of treatment. And we just don’t know…

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[cancer] Things improving, but slowly and not steadily

Just wanted to send out a update on Jay.

His energy is still low, although I think he’s doing quite well for what he’s been through. Now that we’re at the coast, he’s moving around more; it was difficult to get good exercise at the house we were staying at before. We’re hoping to get Jay down to the boardwalk for a short jaunt sometime during our stay.

 

The food situation continues to be difficult. Some meals are a relative breeze, some are painful beyond measure. It’s literally a bite-to-bite struggle. We’ve changed around his med schedule, and have added ativan and compazine before each meal. These seem to have helped, but since what little progress we’re making is not at all in a straight line, it’s hard to tell.

 

We’re also treating meals as quiet time, as he seems to do better when he’s able to focus completely on the act of eating. We are eating early, when it’s quiet, to try and help that. Being at the coast during the off-season helps with that.

 

I’ve got a couple of other tricks up my sleeve, including having him brush his teeth before each meal so there’s no issue with mouth taste, and putting some vap-o-rub under his nose to cut down on smell issues. Whether any of these things will pan out remains to be seen.

 

If you have advice, please address it to me (radiantlisa at gmail) rather than to Jay. He is still very suggestible around food and eating, and even reading this kind of advice can be devastating to his equilibrium.  And I welcome advice, as I’m rapidly running out of ideas.

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