[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.

35 thoughts on “[cancer] Another dreary update

  1. Sorry he’s suffering so much. I hope they’re able to figure something out that’ll help him get at least something approaching enough food. Love to both of you.

  2. Gil B says:

    *sends love and hugs*

  3. Laurie Mann says:

    I’m sorry to hear things are going the way they are. I hope Jay finds some drugs to improve his comfort level.

  4. Rick Moen says:

    Deirdre and I have you both in our thoughts every day, and hope things improve. (I also offer one my mother’s favourite expressions: ‘Do the best that you can for as long as you can.’)

    Best Regards,
    Rick Moen
    rick@linuxmafia.com

  5. Sorry to hear this. Hoping for speedy news and an upturn in how Jay’s feeling.

  6. Suzan Harden says:

    Take of yourself, too, Lisa. Love and hugs.

  7. SubmarineBells says:

    Thank you for the updates. They are very much appreciated. Best of wishes for all of you… here’s hoping that something materialises soon that will make things a bit easier to deal with.

  8. Erica says:

    Sorry he’s having such a hard time. I do hope there’s something that can help, as it’s miserable to not be able to eat. Best wishes to you both.

  9. Simone Cooper says:

    Sending much love to both of you.

  10. lisa says:

    Have you all considered marijuana. It can help tremendously for appetite. Someone skilled in medical marijuana can help with the best types to help with nausea. At this point, the “high”, would be the last thing I worry about.

    1. Hall says:

      I would second this comment. Years ago when there weren’t dispensaries, we made it so a good friend got edible marijuana at a time when he was wasting away unable to eat from chemo. It was pretty immediately effective and his mother called thanking us from the bottom of her heart. You are in Oregon; this should be quite doable.

  11. Lisa, I would like to offer to hang out with Jay. I have some experience with respite care. you can get my number from the parent handbook at school. really want to help.

    1. Will do – and thanks.

  12. Albatross says:

    Strength to you.

  13. You folks are in my thoughts daily, for whatever it’s worth. {{hugs}} A home health aide would be a great relief.

  14. Joe says:

    Sending hugs and love to you both…

  15. Here’s a piece where a similar treatment to Jay’s seems to have helped.

  16. SoonLeeNZ says:

    Thank you for the update. Been thinking of all of you and sending best wishes FWIW.

  17. Peter Hollo says:

    So sorry to hear of Jay’s ongoing misery. Hope things can see an upturn soon. Sending love from Australia.

  18. Stevie says:

    Thank you for the update; I’m sorry it’s still fraught with uncertainties, and hope you can get a home health aide sooner rather than later.
    Might a Peg be possible to help with Jay’s nutrition? I know a lot of people with CF and ALS with them and it seems to help, though Jay may not want another operative procedure.
    Best wishes from across the Pond!

  19. Stacia says:

    I’m so sorry to hear about Jay’s continuing appetite issues. I hope the scans show something that can help change his course for the better. My love and best to you both.

  20. pelican says:

    Thank you for updating, sorry it’s not better news. Best wishes that solutions to increase Jay’s comfort are found. I’m wondering if in home IV hydration might help a little?

  21. I am so very sorry that Jay is having such a wretched time. My only piece of advice, and really it’s only encouragement, is to use all the pharmaceutical and alternative tools available to you.

  22. Barbara Neighbors Deal says:

    Thanks so much for the update. Reading Jay daily for years created a “check his blog first” daily routine; still do, grateful for when you’re able to update, and knowing strength and peace for both of you when you aren’t. Hugs.

  23. Alexis says:

    <3
    Thank you for keeping us all updated.

  24. monica mcnally says:

    Sorry to hear about the struggle latelely. Hopefully, it will pay off in the long run. Also, please be careful with use of Haldol. Please read side effects. Best wishes to you and your family.

  25. Nellie says:

    If you’d like, I can see if the aide who helped with my grandmother is available and still doing that work. Marilyn was very caring, diligent and trustworthy, but my grandmother’s case was her first time working with someone who died, and she was pretty broken up over it and looking for other work.

  26. Harald Striepe says:

    Thinking of you daily and sending heart!

  27. Fuck cancer, man.

    Keeping you all in my thoughts.

    <3

    1. Daniel Abraham says:

      I’m not a praying man, but I’m hoping that good comes to you all out there. I’m sorry this part’s as hard as it is.

  28. Diane says:

    I understand.

  29. Terry says:

    I’m so sorry to hear this. I hope they can figure it all out soon and his suffering can be alleviated. Send him my love & hugs, and save some for yourself. I’m glad to hear you’re going to get some help.

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