Postby Rock_Robster » Tue Feb 11, 2020 2:06 am
Hi Wardward, I’m very sorry to hear the news about your brother. I hope this forum can give you both some support through this extraordinarily difficult time.
A few thoughts from my side:
1. Given the stage of his disease, your brother should be being treated by a palliative care team. This does not preclude future treatment, but is focussed on managing his symptoms and maximising his comfort. They can usually do a lot more than regular hospital doctors can. This may also mean his pain can be managed to the point that he can go home. I’d be asking for a palliative care referral.
2. Indeed from your description it does sound fairly advanced. When you say there is “no treatment left”, does this mean he has done a lot already? Even with late-stage CRC, some people can live for a significant period with reasonable quality of life if they respond well to first- or second-line treatment. If he has not had any treatment yet (eg chemotherapy) then you might want to consider a second opinion from a major cancer centre. His disease may still be considered ‘incurable’, but treatment could improve both his quality and quantity of life.
Hospitals will not typically allow alternative treatments to take place under their care as they have not necessarily been proven safe and many have risks and their own negative side effects. This exposes the hospital to potential liability, plus malpractice, ethical breaches, and funding issues for non-approved treatments. He may have more flexibility here if he transfers to hospice care, although many hospice facilities also don’t allow active treatment other than palliative care.
I believe the right-to-try laws in the US apply to experimental conventional treatments that have passed Phase I testing (human trials) but not yet received FDA approval. I don’t think these apply to alternative/supplementary therapies.
Good luck to you both,
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial