Anyone heard from EdBacon?

[GSDF]

He had just started pluvicto but hasn't posted an update in over 2 months... I miss him.

[Gl448]

I miss him too.

He was moving into end-of-life medicines to go out on his own terms.

I’m not sure he’s actually taken them but the last time we chatted he suggested he wouldn’t be posting here any longer.

If you’ve left us Ed, RIP. You were one of the best contributors here.

[Gl448 in reply to Gl448]

This was a popular post he made in the topic shortly before he disappeared:

healthunlocked.com/advanced...

[GSDF in reply to Gl448]

Thank you for this info... So sad if this is what indeed transpired... Good man he was....

[Carlosbach]

Unfortunately, I’ve reached the same conclusion. I messaged Ed 3 weeks ago and got no reply. If indeed he is gone, at least it was on his own terms. I sincerely appreciated his courage at stepping up to discuss and raise awareness of death with dignity.

To a courageous man- rest in peace

[Adlon57 in reply to Carlosbach]

Yes I was in touch via PM last about two months ago, as you say Carlosbach if he has departed "To a courageous man- rest in peace"

[CAMPSOUPS]

I came to that conclusion a few weeks ago. I hope he's comfortably hanging in there still but if not rest in peace Ed. I enjoyed having PM chats with him too.

It puts a reality in my face when this happens that I normally feel I have dealt with until another brother passes. A lot of us have similar paths. If not in actual treatment sequences in years of survival.

[EB6653497]

It is with great sadness that I have come to the same conclusion and report that my husband - Richard - was on the same plan as Ed Unfortunately we lost his battle of 10 years (aggressive - Agent Orange) April 2023 When his pain increased post 2nd treatment after posting better results and feeling better (full of hope and promise) We had just returned home from traveling to our family 800 miles away for 2 weeks and seeing granddaughter perform in a play. Eleven days post treatment he wanted to go to the hospital as I explained it was the bone pain so we phoned Moffitt Cancer Center - they advised how to change pain management. That worked only to realize he lost the use of his left leg due to the negative effects of chemo that did not work - neuropathy. we then went to the hospital Sodium stroke level at 120 but no stroke CT showed again mets but no organ involvement They held him for 6 days sodium improved another CT so they suggested an acute extensive rehab for 12 days Mistake on my part but since he was in a facility Moffitt Cancer nor his primary care would help me - give any advise - as he had to be discharged first Unbelievable Finally I found an oncologist that would agree to take a PSA His PSA had increased by 1100 points in the last 4 weeks and his pain was unmanageable And was explained the cancer changes the hormone that controls sodium levels with hydration So home with hospice for 3 weeks Please note that Richard and I had one of those one of kind marriages / relationships / perfection for almost 43 years Now he is pain free and I have all the pain (heart broken) I never in a million years thought I could experience this and still be alive to write about it 4 weeks later Good luck to everyone just hold onto each other a little longer.

[Carlosbach in reply to EB6653497]

So sorry to hear of Richard's passing. I'm glad that you got to see your granddaughter perform together and had a last visit with family. I'm even more thrilled with your description of your 43 years together. Now, take care of yourself the way Richard would have wanted for you. Blessings, Ron

[Tinuriel in reply to EB6653497]

My condolences to you on your loss, EB. That's truly a traumatic experience, and I hope you are surrounded by people you care for you as you walk thru the next weeks and months. Your love for each other is inspiring. Hugs and prayers...

[Gl448]

He discontinued pluvitico because he developed some severe liver mets, that’s why he was ordering the end-of-life drugs.

He didn’t want to post his plan because he didn’t want to get a bunch of you should-should-keep-fighting responses.

Ending on his own terms while pain was still manageable is/was more important than milking out every little bit of extended life at all costs.

I have much respect for that point of view.

[middlejoel in reply to Gl448]

Which drugs are end-of-life and how does one qualify for them?

[Gl448 in reply to middlejoel]

I linked his thread on the topic earlier...go read about them there.

[middlejoel in reply to Gl448]

Thanks GI. I also live in California and have an Advance Directive. I have discussed the posibility of going with the "end of life" option with my daughters as well. I knew that the law requires a doctor to declera that the patient has 6 months or less and then he would write a prescription for the "cocktail". Was wondering about which drugs are used to mix the cocktail and instructions.

[Muffin2019]

I was following him also, I respect his choice. I also have liver Mets for about a year. Back to chemo, so far the PSA is going down, my third is in a couple of weeks. Had a consult for the use of SIR-Y90 today so if this does not work then that is my last resort for treatment unless plvicto becomes more available. The liver is in good shape and healthy with all tge chemo ovet the past 5 years, that is what the last blood work said last week. I am in very good health other than the Mets, he said I have a tough liver and tough kidneys. I eat healthy, cut back on sugar, cut back red meat to one and two times s week and no alcohol beverages so not to compromise the liver. Keeping my fingers and lots of prayer test this chemo will work for months and the Mets will shrink and stabilize with no new mets.

[j-o-h-n]

LATEST POST I COULD FIND (MARCH 14, 2023)

Pluvicto Update: Second Treatment Coming up

EdBacon profile image

EdBacon•

2 months ago•52 Replies

Will be getting my second treatment on Tuesday.

Unfortunately, my PSA has not dropped a whole lot. It went from 248 to 222. My Alk Phos shot up from the mid 300s to almost 600 now. Hoping things improve after the next infusion. Hope it's just dying cancer cells affecting the PSA.

I still feel better than I did before the first infusion, but pain levels have been fairly steady with Norco needed pretty much around the clock. I did get a little pain relief initially.

Written by

EdBacon profile image

EdBacon

Male66 years oldUnited States

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/25/2023 11:34 AM DST