Lepto meningeal involvement. No further treatment. Palliative radiation?

[Biobro]

Spouse 10 weeks post Pluvicto and about to embark on a Hail Mary trial of androgen receptor degrader. But yesterday's brain MRI showed spread to dura and leptomeninges.

So my lovely light and love of my life is coming to the end of the road we have walked, too briefly, together. Oncologist has already put him on dexamethasone and, as I understand it, will discuss palliative radiation early next week. (heavens help you if anything major happens on a Friday night, which, of course, it always does. Not once in our lives has an emergency taken place on, say, Wednesday at 10 am so discussions can take place Wednesday at 2pm.)

Has anyone here had experience of the palliative radiation? Or any advice? Reading pub med, it seems to me that the benefits are slight for someone with rapidly worsening underlying disease, and the radiation comes with its own problems.

He was in terrible head /skull pain after the MRI, and I was told to throw an elephant felling dose of oxycodone at him, plus a wallop of methyl prednisolone to get him over to the dexamethasone this morning. Pain has gone this am, nausea remains, but not as bad. Does anyone have suggestions for the best comfort care? We hope to have a zoom consult with his pain doc this week.

[NickJoy]

I am so sorry to hear about this situation. I am not sure if this is of any interest to you but just in case:

endeavor.moffitt.org/archiv...

[Biobro in reply to NickJoy]

NickJoy, thank you so much. Will reach out to them Monday just in case.

[Kaliber]

my friend Mark, Urang on this group …had many “ pallitive “ radiations of debilitating spinal cancer spots , for years, and all of them relieved his spot pain and worked well except for one that paralyzed him from the waist down once. In short order he learned to walk again and went about his business. Not sure if this directly relates or not.

About the “ elephant felling dose “ of oxy. Be sure to check with your medication prescriber first, but I’d suggest that every very strong dose of opiates be accompanied by some Senna ( docusate sodium ) stool softener - bowel lubricant . This to avoid nasty bowel plugging issues , commonly caused by the use of strong opiates. These can turn into bowel obstructions that can require E.R. Visits and surgery if not addressed.

Hope everything smooths out and that gets better / stabilized.

❤️❤️❤️

[Biobro in reply to Kaliber]

Kaliber, Yes indeed, thank you. In fact my culinary creativity has been spent today trying to figure out how to sneak senakot gummies into his avocado toast. 😁. Alas, he was clearly a cat in a former life and can extract microns of medicine from the most glamorous surroundings!

[Kaliber in reply to Biobro]

I truly hope you can make some adjustments and keep him comfortable moving forward. I know it has to be such a drain on you too. Seems like much of the time that the SEs are much worse than the initial problem. Heavy opiates will plug about anyone up ….you have to be especially careful with the higher doses.

Sounds like you are handling everything really well. People are very resilient ….more than we oftentimes expect .hang in there …. I’m sending out positive thoughts / vibes ( transfer of merit ) for both of you.

❤️❤️❤️

[Biobro in reply to Kaliber]

Thank you Kaliber. It means much to us. I found this board way too late -- so wish I'd been here at the start as he would certainly have been treated much more aggressively early and most likely would have had a better outcome. But I did find it eventually and you all have been such a support.

[Kaliber in reply to Biobro]

❤️❤️❤️

[j-o-h-n in reply to Biobro]

Dear Ms. B.B.,

Regarding the former cat....

I solved this issue when I was married to the WotW (ex-wife/Witch of the West) with a rubber mallet and a wooden tongue depressor (of course, I made sure the depressor had splinters)....10 years of this, but hey who was counting?

I wish you both, God's blessings...and love.......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/24/2023 2:57 PM DST

[Biobro in reply to j-o-h-n]

Thank you John. Your humor is a leaven on difficult days!

[Benkaymel in reply to Biobro]

I would also recommend prune juice to keep things moving for your spouse. One glass in the morning and one in the evening works wonders for me while on strong pain killers.

[Biobro in reply to Benkaymel]

Benkatm, Brilliant. Thank you. Most effective and he actually likes it.

[Tall_Allen]

I'm sorry to hear about this downturn. Tumors in the brain can cause all manner of havoc (my father died of it), and while radiation of the brain (as my father had) can cause its own problems, his net quality of life may (or may not) be better. Sorry to be so equivocal, but it is very much a judgment call.

[Biobro in reply to Tall_Allen]

Tall_Allen, thank you. From the small amount of reading I've done thus far, I feared this was the case. At the moment, nausea is the major problem, so whatever can address that will get priority.

[Tall_Allen in reply to Biobro]

My father took steroids and either Compazine or Zofran to help with the nausea. But there are a lot more meds now.

[Biobro in reply to Tall_Allen]

He's doing Zofran currently, but it seems to be getting less effective.

[Rev214]

If you want to minimize collateral damage to healthy tissues surrounding treatment areas near brain, consider Proton Beam radiation. I had y original prostate cancer done there and the met that showed up three years later. No bowel or urinary issues. I did it at Procure.com in Somerset, NJ. I started with G9 disease and poor prognosis. Still here 7 years later, b<t recent progression in pelvic bones. Proton hits cancer tumors equally effective to x-ray/photon radiation. What makes it better is it produces way less sideffects to healthy tissues because it only touches tissues in path to the treatment site and dumps the remaining energy completely in the target tissue and desired margins.

Xray/photon on the other hand enters body at 100% energy, doses entry path , target, healthy tissues past the target until it exits body opposite of its entrance.

My dad and many friends had terrible sideffects from radiation, three that became fatal years later, UTI's from radiation Cystitis of Bladder, radiation induced cancers, incontinence both urine and bowel. Hence I sought out more advanced tissue sparing Proton Beam Radiation Therapy.

There are now Proton centers across the country, however I found Procure provided the best price for self pay when Insurance from Obama's creation refused to cover it, not even to the level they would pay for regular xray radiation.

Best wishes going forward for peace and comfort in the battle.

[HopingForTheBest1]

I've been on Oxy patch 12.5 mg every ery 3 days for past several months. Recently uped to 25mg and is helping, for now.

[Biobro]

Update: oncologist consult on Monday established that he is not a candidate for any radiation. The cancer is in his spinal fluid, so will just reseed. He upped dexamethasone dose to 4mg 4 times a day and he feels better. Absolutely no pain and no problem sleeping at the moment, but we have a teleconsult with a fabulous Pain Management doc here in town to get a plan on place for when /if he needs it. We're trying to do opiate alternatives since it became apparent last Friday that he has awful nausea and hallucinations on high doses.So we're comfortably at home, with dim lights and friends and colleagues visiting and reaching out. Palliative care is delivering durable equipment and he has been put on Medicare home help. Not quite sure of the extent of that but for the moment it means PT and OT to help him retain function as long as possible. Wound care team is coming by to instruct me on bed sores. And, if we want, aides to help him shower. So pretty much all that hospice offers, just not 24/7. Also on Palliative care you MUST have an out of hospital DNR signed because you call 911 upon death .

[Biobro]

Should have said: rather more than hospice offers in the way of services, but only during normal business hours.

[Biobro]

Update: palliative care is not working alas. Durable equipment ordered repeatedly but never turned up. Still haven't had mandated nurse visit. Did get pt assessment but no pt yet. Supposed to receive supplies for wound care, didn't receive. Oxygen concentrator to be delivered whenever -- certainly not tomorrow or even this week. Nothing but problems with the pharmacy/insurance. His important prescriptions come without refills and are being tweaked, Walgreens holds them for insurance approval each time despite instructions to go ahead and fill and charge cc on file if insurance approval denied. But a new pharmacist was happy to scold me yesterday because he wasn't taking a statin that he hasn't taken for 4 years prescribed by a doc that he dumped 3 years ago. I pointed out to her sharply that with lepto meningeal involvement, his cholesterol (which is well controlled) is hardly his major concern. She hung up.

On the bright side private home care company marvellous. Our aide, who is happy to work extra hours, is a physician trained in Cuba and hoping to qualify as an RN here. We couldn't be luckier.

So reluctantly, but because I am terrified of not getting the meds he needs when he needs them rather than 4 weeks after the fact, we are shifting over to hospice after he has had a pain consult today. Hospice will honor any plan his pain doc suggests. We'll lose his oncologist, but the FP can see him for the next 4 weeks until he retires.

Apart from supplies, they probably won't do much as the aide will do bathing etc. Friends and family have offered to spell me if necessary for the remainder of the care.

Again, these are local problems. But I suspect that they are widespread. It is quite clear that the medical system is not set up for the avalanche of patients nearing their ends except to milk every last dime from Medicare while providing as little "care" as they can get away with. Let's face it, the victims are, by definition, in no position to complain - threats of future haunting notwithstanding 🤪.