New member Stage 4 questions

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wardward
Posts: 5
Joined: Tue Jul 31, 2018 3:14 pm

New member Stage 4 questions

Postby wardward » Mon Feb 10, 2020 12:48 pm

Seeking advise.

My brother is a Canadian and in the hospital for Stage 4 colon cancer. It's gotten to the point that there's no conventional treatment left and he is in the hospital and he can't leave because he's hooked up to pain medicine he needs 24/7. They did surgery for hooking up the pain medicine but at least, he's comfortable without the pain. They won't allow alternative treatments while he's in the hospital but at this point, there's no treatment for the actual cancer itself even if it's unconventional. Is there anything that can be done?

Lee
Posts: 6099
Joined: Sun Apr 16, 2006 4:09 pm

Re: New member Stage 4 questions

Postby Lee » Mon Feb 10, 2020 6:03 pm

Hi and so very sorry for the reason you are here.

When you say stage IV, where has the cancer spread to? Am I correct to assume more than one location? Lungs, liver, etc. Many people have found success with a stage IV cancer diagnoses when they get aggressive treatment. There are many people here that went to Memorial Sloan Kettering in New York City when they were told there was nothing else that could be done. And are very much NED (No Evidence of Disease) today.

Sometimes, if the tumors are big enough to cause a lot of pain, radiation can help reduce the tumor size.

Sometimes if the pain is just to much, too many tumors, etc, making the patient as comfortable as possible is the best choice.

If it is the end of life for your brother, I pray that he is surrounded by family friends and love and is pain free.

Hugs to you and your brother,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

wardward
Posts: 5
Joined: Tue Jul 31, 2018 3:14 pm

Re: New member Stage 4 questions

Postby wardward » Mon Feb 10, 2020 8:39 pm

Thank you.

Yes, it's spread on the torso area around the original site and I'm not a doctor but it sounds like there's too many tumors. That's why he needs the pain medicine and can't leave. I wanted him to try alternative treatments but the doctors in Canada won't allow it while there in the hospital. If I'm not mistaken, in the US, we have a right to try. I'm not sure if it covers alternative treatments but in Canada, it doesn't sound like they have one there. The doctors over there have said there's nothing more they could do although I know other hospitals might be able to do something. I was thinking what's the harm in trying alternative treatments since they've stopped their conventional treatments.

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: New member Stage 4 questions

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
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

boxhill
Posts: 591
Joined: Fri Apr 06, 2018 11:40 am

Re: New member Stage 4 questions

Postby boxhill » Tue Feb 11, 2020 3:33 pm

What do you mean by "alternative treatments"?

There are treatments, such as acupuncture or medical marijuana/CBD oil, that might make him more comfortable.

There is immunotherapy, which has brought some people back from the brink, but he would have to have the right tumor genetics and his doctors would obviously know about that. If he has peritoneal mets there is cyto-reduction and HIPEC. If it is liver mets there is the HAI pump. I suppose that if you are visiting him in the hospital you could ask one of his doctors if these have been considered, or perhaps he has a partner who would know?

I don't think that your brother is going to be saved by so-and-so's oil or so-and-so's vitamin C or any of the other bogus "cures" peddled out there.

I'm deeply sorry your brother is so ill, but honestly, most people with cancer do not appreciate being approached by well-meaning people who think that if they only tried this or that "natural" miracle cure they would be fixed. Forums like this one have many threads complaining about it. And if he is as ill as you think he is, this is not the time to intrude with such suggestions.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

wardward
Posts: 5
Joined: Tue Jul 31, 2018 3:14 pm

Re: New member Stage 4 questions

Postby wardward » Tue Feb 11, 2020 4:35 pm

Thank you everyone for your responses. I'm really thankful for this board.

My brother is fine as long as he has his pain medication but that requires him staying in the hospital. He had been trying alternative treatments but that's been stopped ever since he went to the hospital that he's stuck in and they won't let him try alternative treatments while there. It's alarming since they've stopped all conventional treatments. I'm not familiar with Canada's health care system and about getting second opinions which makes it more frustrating but I'll go and ask about the treatments mentioned here.

boxhill
Posts: 591
Joined: Fri Apr 06, 2018 11:40 am

Re: New member Stage 4 questions

Postby boxhill » Tue Feb 11, 2020 7:15 pm

What are the alternative treatments he was trying?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

wardward
Posts: 5
Joined: Tue Jul 31, 2018 3:14 pm

Re: New member Stage 4 questions

Postby wardward » Tue Feb 11, 2020 9:08 pm

CBD/THC although the THC was a low amount. We had hoped to increase the THC amount like some news articles and TV interviews suggested. The CBD did help with increasing appetite especially when he was on chemotherapy.

boxhill
Posts: 591
Joined: Fri Apr 06, 2018 11:40 am

Re: New member Stage 4 questions

Postby boxhill » Thu Feb 13, 2020 4:07 pm

Any possibility of home hospice with a visiting nurse to check the IV daily? He couldn't get something like fentanyl patches?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment


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