my husband wants to stop chemo and opt for alternative. help!

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ilivebyfaith
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Joined: Mon Oct 27, 2014 8:18 am

my husband wants to stop chemo and opt for alternative. help!

Postby ilivebyfaith » Sun Jun 21, 2015 8:47 am

My husband is scheduled for his ctscan tomorrow, I don't know if this is anxiety talking, but he spoke to me today and said that after the scans, he wants to get a second opinion, I thought he was referring to another oncologist, but he said he is done with chemo, he said that its killing him, his tongue has black spots and is experiencing fatigue. He said he wants to go alternative, change into vegan if needs too, he is just tired to receive chemo.
I know that he has every right to decide what he wants as it is his body, but how can I support him if I know that medically speaking (based on the studies I've read), chemo and surgery is the best chance for cure.
He has been a lot, 1 surgery, 6 folfox with vectibix, 6 folfiri plus erbitux and 6 folfirinox plus avastin. He has a very rough journey since he was diagnosed... and now I don't know how to give my support.
Who am I to stop him from trying alternative? He might respond with it better or maybe he just really cannot bear to have 1 more chemo. I am really lost and don't know how to react.
We changed from folfox twice already as his lung mets keeps on showing progression despite the strong chemo mix that we give him.
Any advice? I have just put my 8 years old to bed and now watching over our 2 years old, while my dear hubby is sound asleep. I am now sitting at the corner of our living room, my face expressionless, though inside I'm really screaming :(
Carer to DH 42, DX MCRC IV mets liver,lungs 9/9/14;Wild type, KRAS/NRAS nonmutant; Folfox 3x Folfox+Vectibix 3x CTscan, liver mets gone, colon tumor 12 to 15cm, lung mets inc (31-R, 19-L); Change: FOLFIRI + erbitux 6x, colon and liver clear, progress in lungs. Change: folfirinox + Avastin 12x, lung metastasectomy, molecular profiling, folfiri + erbitux, progression, will be switched to stivarga PRAISE GOD FOR HIS FAITHFULNESS!

KWT
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Joined: Thu Jul 11, 2013 7:22 pm

Re: my husband wants to stop chemo and opt for alternative. help!

Postby KWT » Sun Jun 21, 2015 9:54 am

At some point we may have to face the fact that chemo so not cutting it, I'm my opinion that would be the time to try an alternative. The question is which one? So much snake oil out there. At least with marijuana you would be getting other proven benefits even if it's no cure.

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Maggie Nell
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Location: Central Highlands, Victoria, Oz

Re: my husband wants to stop chemo and opt for alternative. help!

Postby Maggie Nell » Sun Jun 21, 2015 10:06 am

In Australia, back in the mid 70s, there was a veterinarian and athlete who developed
bone cancer in his leg. Given only weeks to live, he began studying meditation and
following a strict diet, pursued an intense regime of research, introspection and
personal development. His legendary bestseller, You Can Conquer Cancer was published
in 1984. Today this one-legged, former veterinarian is a world-renowned pioneer in
the therapeutic application of mind-body medicine, integrative medicine and meditation.

I don't know what sort of profile the australians Ian Gawler, his wife Grace Gawler, Petrea King or
Julie Stafford have in the northern hemisphere, but Google those names and surf their
websites. Most likely there are affiliates in your part of the world.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

MSJC
Posts: 158
Joined: Sun Jan 26, 2014 10:31 am
Location: Ashland City, Tn.

Re: my husband wants to stop chemo and opt for alternative. help!

Postby MSJC » Sun Jun 21, 2015 10:17 am

Looks like he has had a positive response with the colon and liver, maybe something in addition to chemo for the lungs?
Mike, 49 y/o at Dx 1/14 stage 3c
low rectal cancer 7 nodes positive
2/14 5 weeks chemo/rad. 5-fu
4/14 Lar gallbladder removed,
temp ileostomy
5/14 8 rds Folfox
10/14 reversal surgery
5/15 clean colonoscopy
6/15 clean ct scan

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: my husband wants to stop chemo and opt for alternative. help!

Postby KWT » Sun Jun 21, 2015 10:23 am

Pheobe, one has to wonder if lopping off his leg had a thing to do with the outcome and not meditation and diet. I have no doubt those things are beneficial, but cure? Don't know.

MSJC
Posts: 158
Joined: Sun Jan 26, 2014 10:31 am
Location: Ashland City, Tn.

Re: my husband wants to stop chemo and opt for alternative. help!

Postby MSJC » Sun Jun 21, 2015 10:34 am

Yea, I would gladly buy his book and follow his advice if I knew he had amputated his own leg while meditating...seems that surgery is still the best first line of defense.
Mike, 49 y/o at Dx 1/14 stage 3c
low rectal cancer 7 nodes positive
2/14 5 weeks chemo/rad. 5-fu
4/14 Lar gallbladder removed,
temp ileostomy
5/14 8 rds Folfox
10/14 reversal surgery
5/15 clean colonoscopy
6/15 clean ct scan

Kiwi Debz
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Joined: Fri Aug 22, 2014 9:42 am
Facebook Username: Deb Goldby

Re: my husband wants to stop chemo and opt for alternative. help!

Postby Kiwi Debz » Sun Jun 21, 2015 12:32 pm

Hi. I kind of understand where your DH may be coming from. While I have had only one round of chemo for me the past year has been non stop, surgeries, scans, chemo, biopsies, more surgery, more biopsies, more scans and another surgery and biopsy coming up in the next weeks.

I realized yesterday, I am so tired. I am physically tired in trying to resume some normalcy, I am so tired of the never ending procedures, never ending poking, prodding and needles.

It seems never ending. It is hard.

I know for myself I am not ready to quit and will continue as long as I have QOL but it really beats you down and just when you think you could be getting somewhere, bam it is back.

I am choosing to breathe, ride it out and hopefully my lethargy will pass.

I guess what I am saying is maybe he is there too, just so tired and done. Whatever he chooses I am sure it will be the right thing for him. As a caregiver that must be so hard when you want him to continue on the path you believe is the right one. Hang in there maybe he will regroup but no matter your love and support will mean so much.

Deb
6/14 DX mCrc stage 4
7/14 R. hemicolectomy; 4/17 LN; liver res. peri met; repair to illiac artery
8/14 FOLFOX
10/14 PET recurrence LN; liver ? Peri met Continue FOLFOX
12/14 PET: stable .Liver only! FOLFOX
02/15 Liver resection. NED
03/15 foundation One testing - BRAF mutant
05/15 progression; Hilum node; both lungs?
08/15 NED !!!!
Age 51 Mum to Tom (RIP) and Jose 18
KIA KAHA - Be strong!

Val*pal
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Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: my husband wants to stop chemo and opt for alternative. help!

Postby Val*pal » Sun Jun 21, 2015 12:41 pm

It is probably your husband's pre-scan news anxiety talking.

However, I strongly believe that there is often a good argument for stopping chemo if it does not appear to be helping very much. I saw firsthand what the side effects did to my husband, and I found it hard to believe that he wanted to keep at it. Of course, it was his decision and he put up with all the attending complications because he felt the chemo could cure - though at Stage IV chemo only delays the inevitable. Even when his oncologist repeatedly told him chemo is not a cure, he chose to believe it might be.

I definitely do NOT believe in alternative treatments in any way, shape, or form as a cure for cancer. Though I do think some alternative treatments might help one improve the immune system to a slight degree, all the vegan diets and extracts, etc. do not cure cancer. However, each cancer patient has to handle the disease the way they see fit, so if your husband wants to go for alternative treatments, then perhaps that will help him navigate the journey. Whatever helps him psychologically is worth a try.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

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Maggie Nell
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Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: my husband wants to stop chemo and opt for alternative. help!

Postby Maggie Nell » Sun Jun 21, 2015 12:56 pm

kennytwisted wrote:Pheobe, one has to wonder if lopping off his leg had a thing to do with the outcome and not meditation and diet. I have no doubt those things are beneficial, but cure? Don't know.


Well, Kenny, I kinda wrote a truncated bio of Ian's experience and left out the secondaries to his pelvis, lung and chest
which developed after he had his leg taken off (osteogenic sarcoma). The alternative therapies he pursued was for
the metastatic cancers and included acupuncture, TCM. Gawler's latest book is The Dragon's Blessing (2008), where
he looks back on the whole deal.

His first wife, Grace Gawler, is in the trenches with colon cancer after working in the arena of cancer management for 40 years.

Image


http://www.gracegawlerinstitute.com/
http://gracegawlermedia.com/2013/12/08/ ... e-america/

For sure, Ian and Grace were absolutely bollocked as fish slappers, chicken twirlers and snake-oil peddlars back in the 70s.
but they do not diss science-based Western medical treatments.
http://gawler.org/inspiring-stories/

Anyway, I've noticed the content in this Forum is mostly US/Canadian so I'm just tossing in some information about what's
cooking down here. Goanna oil not snake-oil. :twisted:
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

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vilca11
Posts: 730
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Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: my husband wants to stop chemo and opt for alternative. help!

Postby vilca11 » Sun Jun 21, 2015 2:36 pm

Buy Dr. Ralph Moss report on colon cancer - he spells out there what alternatives truly might work (or might not, but his recommendations do have scientific basis, so at least he will be trying what does sometimes work. I hope your DH knows that only 5% of people who try alternatives have enough time to find what is working for them....they have to try at least 6-7 alternatives in the hope to stop progress of cancer, not even cure.....all available "snake oils" (about 400 various "recipes" or techniques or regimens or devices, etc against cancer) are on internet.... I bet there is a thing or two that is working for some people....

Do read Dr. Ryke Hamer - another alternative.... This one - mind oriented.... They say he proved that the cause of cancer is in our brain and the treatment must be slow and psychological too - they say he proved it on more than 30k cancer patients brain scans.... I have no idea if that is true or not, but I am just saying that people like Dr. Hamer or Dr. Simonchini are not crooks, they are physicians who happen to see a result of their attempts... So they have strong convictions about etiology of cancer " cancer is our emotions and thoughts and experience we go thru", "cancer is a fungus", "cancer is a result of poor oxygenation", "cancer is the result of our technical progress", "cancer is a result of poisoned Earth", we can continue naming everything what is wrong on Earth and find places on Earth where they NEVER have cancer - like one province in Panama or one area of Pakistan where apricot trees are growing... why is it - is it laetril in the seeds of apricots that they eat for breakfast, lunch and dinner, or antioxidants in cacao that they drink 6 times a day? Today the most honest (and correct, imho) answer about cancer is probably "we still do not know much/enough"

I support your husband in his feelings. I do believe that at this point chemo is actually more harming than helping. I think, he will live longer and better without it. And the main thing, of course, is that it is his wish... You just have to remember this one thing - nothing will cure right now, we are talking about prolonging - and if you think about how you want to live that "prolonging" period, you will find your answer... Hugs and light your way. Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

Laurettas
Posts: 1606
Joined: Tue Jun 21, 2011 9:49 pm

Re: my husband wants to stop chemo and opt for alternative. help!

Postby Laurettas » Sun Jun 21, 2015 5:16 pm

ValPal, wise words indeed.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

ilivebyfaith
Posts: 116
Joined: Mon Oct 27, 2014 8:18 am

Re: my husband wants to stop chemo and opt for alternative. help!

Postby ilivebyfaith » Sun Jun 21, 2015 11:29 pm

Thank you everyone for your replies. Would definitely do some more research regarding alternative medicine. If this is the road that he wants to travel, as his carer, I should be able to show him the best options.

I love my husband so much that I don't want to force him into something that he doesn't want, it is his body, he is the one suffering and feeling every effect of chemo.

We are preparing for ctscan, just waiting for the crea result. Will update all of you here. Please pray for positive scans.
Carer to DH 42, DX MCRC IV mets liver,lungs 9/9/14;Wild type, KRAS/NRAS nonmutant; Folfox 3x Folfox+Vectibix 3x CTscan, liver mets gone, colon tumor 12 to 15cm, lung mets inc (31-R, 19-L); Change: FOLFIRI + erbitux 6x, colon and liver clear, progress in lungs. Change: folfirinox + Avastin 12x, lung metastasectomy, molecular profiling, folfiri + erbitux, progression, will be switched to stivarga PRAISE GOD FOR HIS FAITHFULNESS!

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Maggie Nell
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Location: Central Highlands, Victoria, Oz

Re: my husband wants to stop chemo and opt for alternative. help!

Postby Maggie Nell » Mon Jun 22, 2015 12:26 am

vilca11 wrote:.........people like Dr. Hamer or Dr. Simonchini are not crooks, they are physicians who happen to see a result of their attempts... So they have strong convictions about etiology of cancer " cancer is our emotions and thoughts and experience we go thru", "cancer is a fungus", "cancer is a result of poor oxygenation",



....I would like to see Drs Hamer & Simonchini stand in a paediatric oncology ward and say that to the parents of the very young children.
German New Medicine, I should have known without needing to Google. Caveat emptor

In his home country, Tullio Simoncini was banned from his medical profession for life. Also, he was convicted for fraud and wrongful death in 2003. For several years he has been practising alternative medicine in Italy and the Netherlands. Sometimes he rents room in ‘the Clinic for Preventive Medicine Berg en Bosch in Bilthoven’, Utrecht region, Netherlands. In this clinic, several alternative healers provide scientifically unproven therapies for cancer.

https://anaximperator.wordpress.com/200 ... lvia-dies/

Oopsy daisy!





ilivebyfaith,
Seek out psych-oncologist services for your husband, and yourself, can access for additional support surrounding the
discussion about treatments. That's a big expectation you are placing on yourself with thinking you 'should be'
able to show him the best options. Will you blame yourself if you, from a willingness to provide unconditional
support, lead him to a poor one that does not yield a desired outcome?
Don't go there, hun.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

Val*pal
Posts: 860
Joined: Sun Feb 10, 2013 1:24 pm
Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: my husband wants to stop chemo and opt for alternative. help!

Postby Val*pal » Mon Jun 22, 2015 8:32 am

Just my two cents worth, but I honestly believe that people who subscribe to alternative therapies are people who are control freaks. They need to believe there is some way to control what is happening to their bodies. The truth is, we often have no control over many things, especially our bodies. Heck, we can't even stop the aging process, dang it! :?
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

ilivebyfaith
Posts: 116
Joined: Mon Oct 27, 2014 8:18 am

Re: my husband wants to stop chemo and opt for alternative. help!

Postby ilivebyfaith » Mon Jun 22, 2015 9:03 am

Mydogphoebe wrote:
vilca11 wrote:.........

ilivebyfaith,
Seek out psych-oncologist services for your husband, and yourself, can access for additional support surrounding the
discussion about treatments. That's a big expectation you are placing on yourself with thinking you 'should be'
able to show him the best options. Will you blame yourself if you, from a willingness to provide unconditional
support, lead him to a poor one that does not yield a desired outcome?
Don't go there, hun.



Hi Phoebe,

Thank you for the link.
I actually told him this afternoon that I don't know whom to consult with regards to alternative medicine.
As per me aspiring to show him the best options, I'm not an expert in any way, though the responsibility actually falls on my shoulders as he is most of the time too exhausted to research about his own condition. I normally do everything, all he has to do is go into the hospital, talk to his oncologist (if he wants to), and everything is already taken cared of by me.

What I will probably make him do, is to consult 1 or 2 new oncologist, let him hear their opinions, make him hear first hand, how we are doing and what road suits him best.

If he wants to go to an alternative doctor, I will accompany him and probably convince him to do both? We are at a crossroad now, and everything will be dependent on tomorrow's scan results. I will keep you all updated. Bless your hearts for taking the time to read my post and hear me out.
Carer to DH 42, DX MCRC IV mets liver,lungs 9/9/14;Wild type, KRAS/NRAS nonmutant; Folfox 3x Folfox+Vectibix 3x CTscan, liver mets gone, colon tumor 12 to 15cm, lung mets inc (31-R, 19-L); Change: FOLFIRI + erbitux 6x, colon and liver clear, progress in lungs. Change: folfirinox + Avastin 12x, lung metastasectomy, molecular profiling, folfiri + erbitux, progression, will be switched to stivarga PRAISE GOD FOR HIS FAITHFULNESS!


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