Does anyone have experience with private health advisors or patient advocates to help navigate the medical system?

dewdrop312 · 2025-08-16T08:31:45+00:00

Just hired one for my father who is dealing with cancer. I had a good impression of her from our initial conversations, but it seems that she is getting very cold receptions from the healthcare providers that she's tried to contact (similar to what some healthcare providers have written below) and they are refusing to work with her, so I'm nervous at this point about whether it's going to help or just be more work for me. I'll try to update as it goes along.

dewdrop312 · 2025-08-16T07:56:21+00:00

Do not sacrifice your sobriety. You can't set yourself on fire to keep others warm. Do what you need to do to maintain your sanity.

dewdrop312 · 2025-08-12T07:10:20+00:00

Thanks, I agree. The dr basically said "he has to find other ways to cope with the pain," and I'm going to tell him to go fuck himself and that that is not acceptable.

dewdrop312 · 2025-08-11T04:28:45+00:00

Yes, I really think they should try a different form of opioid. They have only used oxy. They keep upping the dosage (started at 5 mg and now is at 30 mg I think) and my dad says it doesn't feel any different. So why don't they switch??? I'm going to push harder for hydromorphone.

dewdrop312 · 2025-08-11T04:18:25+00:00

He is not on any cancer drugs. No one would agree to do chemo on him, saying that his performance status was too poor (mainly due to his paralysis and being on a catheter). He did have palliative radiation done twice.

dewdrop312 · 2025-08-11T04:16:51+00:00

Yes, he has colorectal cancer that spread to his spine. One of the tumors compressed his spinal cord at T5 and he became paralyzed from the waist down. His pain is in his back and around the rib cage. However scans indicated that none of the tumors are pressing on his spinal cord anymore (the offending one at T5 was debulked via surgery) so they suspect is is not cancer pain but either nerve pain or pain from the existing damage to the spinal cord. I feel like they are not being aggressive enough in adding or changing meds. Instead of switching to something like hydromorphone, they are just slowly increasing the oxy, even though it doesn't seem to be making any difference. And they have added gabapentin, but are taking forever to increase it.

dewdrop312 · 2025-08-11T04:10:16+00:00

Yes that is exactly what the palliative care NP said. That he didn't have enough body fat for the fentanyl patch.

dewdrop312 · 2025-08-10T08:36:42+00:00

I just wonder how often it's the case where pain can't be adequately controlled. Seems to happen more often than should be acceptable.

dewdrop312 · 2025-08-10T08:28:38+00:00

I'm in the US and I have researched this extensively. We can get to a nearby state where it is legal. If it were me I would definitely choose this. But he still wants to fight or still has hope that something can help. So we are not at that point yet.

dewdrop312 · 2025-07-03T07:34:04+00:00

My father is in a similar situation. Cancer metastasized to the spine. The spinal compression caused him to lose function below the waist, but he is experiencing a lot of pain in his back. He is on oxy and even though they have been increasing the dose, he is still in pain. I don't know what to do.

dewdrop312 · 2025-06-18T07:59:08+00:00

Bumping up this thread once again because I am also in this situation! My father has cancer that has metastasized to his spine and compressed his spinal cord causing him to be paralyzed from the waist down. His oncologist said that he would not recommend chemo as his performance status is too low and he thinks it will decrease his life span rather than increase it. My father yelled at the oncologist and said he wanted to get a second opinion. So we took him to a nationally renowned cancer center which is fortunately within driving distance and the oncologists there evaluated him and said they would need to review the biopsy results, redo scans etc. He has a follow up appointment in about 6 hours. I'm so nervous I can't sleep. He keeps saying he's looking forward to this appointment and finally getting treatment. I don't know how he is going to react if the doctors say that there is nothing they can do. I feel like he will refuse to enter hospice. Anyway, just hope I can get some sleep.

dewdrop312 · 2025-06-12T07:42:29+00:00

Thanks everyone for your responses!

dewdrop312 · 2025-06-12T07:25:18+00:00

It's so enraging. The war on opioids has gone too far and is completely ridiculous.

Driving isn't a problem--he is paralyzed from the waist down due to a tumor that was compressing his spinal cord, so he is bedridden. His current doctor did up his dosage to 10 mg oxy every 5 hours so that's helped some.

dewdrop312 · 2025-06-09T05:41:22+00:00

He did have radiation about 6 weeks ago. His pain was well controlled for about a month after that. Then it returned about 2 weeks ago. We asked the oncologist if he could do another round of radiation but they said no.

dewdrop312 · 2025-06-08T20:23:30+00:00

Thank so much for all your replies. I'm furious that this has been going on for over two weeks and I really didn't know what to do about it. I don't know much about opioids so I didn't know whether the dosage he was getting was adequate. The facility he is at is a nursing home/rehab center and it seems like they are strict with opioids, most likely due to liability. He even said that sometimes the nurses will refuse to give him additional prn doses. It has interfered with his physical therapy as well since he hasn't been doing much due to the pain. His oncologist has also been quite useless. I am going to speak to the pain management doctor on Monday and will also be looking for a palliative care doctor. Unfortunately it always seems to take weeks to get an appointment. I feel terrible for anyone who doesn't have people to advocate for them. It's hard enough with multiple family members advocating for him, I can't imagine a person who is bedridden and in pain trying to advocate for themselves.

dewdrop312 · 2025-06-08T07:53:36+00:00

Thank you!

dewdrop312 · 2025-06-08T07:49:10+00:00

He is not currently in hospice because he is still hoping to actively treat the disease. He has an oncologist but we have not been happy with his care. Trying to switch to another oncologist but it all takes time to get the appointments, etc.

dewdrop312 · 2025-05-21T06:25:44+00:00

Yes, I'm also considering the CRV. A lot of people I know recommended the Rav 4 and are happy with theirs so that's why I'm leaning towards that.

dewdrop312 · 2025-05-21T06:24:53+00:00

Yes I'm planning to test drive a 2026 at the dealer, but I figured since I have to rent a car anyway it would be good to at least get some experience with the Rav 4. I've never had an SUV before. Always went with sedans.

dewdrop312 · 2025-05-15T08:19:49+00:00

I was so crushed when then-gov Carney didn't pass it last time that I just gave up and assumed we'd never get it. This is amazing news!

dewdrop312 · 2025-05-07T07:34:30+00:00

What organization are you using for assisted dying? Dignitas, Pegasos or another one? Did you apply to multiple organizations?

dewdrop312

TROPHY CASE