CSN Forum

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gracie
Posts: 110
Joined: Tue Feb 23, 2010 10:37 am

Re: CSN Forum

Postby gracie » Tue Dec 13, 2011 1:40 pm

Oh My! I was not paying much attention when I saw this thread started by Grace14.
I thought to myself 'When did I do that?'
(Sorry Grace14) No offence meant!
The reason being I was treated very harshly there and I could have easily said what Grace14 said.
I was on there for over 2 years and yes (no matter how hard some try) there is always a big 'fight' every couple of months. If it is not religion, it is 'alternatives'
It appears they lost two long time 'members' One had been there since the beginning of CSN.
Both very intelligent and try 'Only' to help when it is ask for!

I agree families fight, but most are not ran off especially when they have been there many years longer than the others?

It is sad because a 'New Member' had only ask a one line question, and wow the 'War' was on.
gracie (and I will try and not get the two of us Grace's messed up again)
rectal cancer DX Sept 9th of 09 (stage 3)
chemo/rads 6weeks starting Nov 09
Surgery April 13 2010
chemo/ 5FU and Oxi starting 6 sessions (developed blood clots, heart and breathing problems)
suppliments with Naturepath Dr 2010

Grace14
Posts: 417
Joined: Mon Oct 24, 2011 7:42 pm

Re: CSN Forum

Postby Grace14 » Tue Dec 13, 2011 2:38 pm

No offense taken Gracie it's just sad that you can't even ask a question on there without the same 3 people jumping down your throat! God forbid you ask a question about alternatives.. I still don't think that those 2 certain people should not have left because of them they were on that forum for years.. I think one of them was just celebrating their 10 years being cancer free! Some people just need to calm the heck down!!
Diag Stage 2a R/C April 2010 at 38
Rad/chemo 6 weeks
Apr surgery July 2010
Folfox 4 months
Jan appendix removed
Feb diag papillary thyroid cancer no treatments stage1
Ned so far!!!
Mother of 4 boys 21 18 11 8

User avatar
very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: CSN Forum

Postby very worried husband » Wed Dec 14, 2011 10:52 am

Hi,

This is my first day of posting on colonclub and my 2nd post. I just reported my wife’s first clear yearly Colonoscopy, CT and blood work here.
I am still on CSN, but don’t post often or as regularly on CSN. The recent debate on CSN mentioned by some of you has brought me here!!!!It looks like any mentioning about nutritional or traditional supplements on CSN is given a v cold and aggressive response. 2 wonderful ladies from whom many of us learned a lot have left because of the bullying by few.......

I am outsider to that .... Thank God.....but YES, ITS NASTY!!!!!!!!!!!
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

gracie
Posts: 110
Joined: Tue Feb 23, 2010 10:37 am

Re: CSN Forum

Postby gracie » Wed Dec 14, 2011 6:15 pm

I have wondered about you 'Very worried husband' It has been quite some time from hearing from you.

I will look up the thread on your wife. I can say good about the colonoscopy.
I hope I don't have you confused with another husband?? As I remember you could not be with your wife (differences in countries) I do think I remember she at least had some family?
I really can't imagine the torment & worry you had to go through hearing her problems per phone only.
I am still wishing you all the best!
gracie
rectal cancer DX Sept 9th of 09 (stage 3)
chemo/rads 6weeks starting Nov 09
Surgery April 13 2010
chemo/ 5FU and Oxi starting 6 sessions (developed blood clots, heart and breathing problems)
suppliments with Naturepath Dr 2010

User avatar
very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: CSN Forum

Postby very worried husband » Thu Dec 15, 2011 8:58 am

Gracie.....You are wonderful. Yes I am the same ''very worried husband'' from CSN. She is in China and I am in Canada. And yes you are right I got the happiest news about her clear scans and colonoscopy on the phone day before yesterday!!! This is how I get the news about her!!. This year is the worst so far in my life...some time it’s not possible to balance all what is going on in your life unexpectedly. Sometime life is brutal. Had to go 5 times to china. once stayed with her after operation for 4 months as I had a longer visa and had left my job. But that is not always possible…
How you have been doing? Hope everything is good at your end...
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

MarkS.
Posts: 206
Joined: Wed Jul 21, 2010 9:19 am
Location: Chicagoland Area

Re: CSN Forum

Postby MarkS. » Thu Dec 15, 2011 10:10 am

I've never gone to any other forum, but if CSN has that much negativity to it then no thanks.
5/2010 DX'd Sigmoid CCr
6/2010 Colectomy. Sigmoid Colon
Stage 3C.T3 N2 M0; 6/14 Lymph Nodes
8/2010 FOLFOX: 12 Rounds
6/2011 NED
8/2012 Avastin/5FU Lung Mets
3/2013 CT/PET Normal
6/2013 Xeloda/Avastin Maintenance
2/2014, 9/2014 CT/PET Clear
4/2016 17mm Lung Met
5/2016 CyberKnife
6/2016 85% Tumor Reduction

gracie
Posts: 110
Joined: Tue Feb 23, 2010 10:37 am

Re: CSN Forum

Postby gracie » Thu Dec 15, 2011 6:49 pm

very worried husband I am so happy you told me all the good news about your wife.
I have looked on here but can't find your other (first) post.
So happy you got at least 4 months with her.
Any ideas when you will be together all the time? (thanks for remembering me)

I believe I am as good as I can be at present. I do feel so much better after going to a Naturalpath, and some TCM.
(this after Oxi nearly killed me and my Onc would not pay me any attention.) Heart problems, respiratory, blood clots. He finally paid attention when the blood clots showed up?

MarkS. Even though I had problems, I have to say there are some wonderful caring people on CSN. Please don't judge them all on what a few cause.
I had a lot of friends on that board and of course still do when I run into them.
gracie
rectal cancer DX Sept 9th of 09 (stage 3)
chemo/rads 6weeks starting Nov 09
Surgery April 13 2010
chemo/ 5FU and Oxi starting 6 sessions (developed blood clots, heart and breathing problems)
suppliments with Naturepath Dr 2010

dasspears
Posts: 12
Joined: Mon Apr 20, 2009 4:42 pm

Re: CSN Forum

Postby dasspears » Fri Dec 16, 2011 10:58 am

Would anyone share with the me cost range of going to a Naturopath? I want to try that route but only if it is affordable.

Thanks

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: CSN Forum

Postby NWgirl » Fri Dec 16, 2011 11:09 am

http://www.salmoncreekclinic.com/fees_and_services.html

Above is a link to a Naturopath I saw a year or two ago. His prices (in our area) tend to be on the higher side, but he is EXTREMELY knowledgable. He told me in our first visit "I can't cure cancer". That said, he has extensive knowledge about the body, the disease and how to best support the immune system and body function whether you're in treatment or done with it. I went to him due to problems I was having with my take down surgery (i.e. poop problems!) and he helped me with that. I ultimately ended up opting for a permanent colostomy, but I learned SO MUCH from this doctor. There are other Naturopath's in our area with lower prices - this is just one example. I'm sure prices vary by region of the country as well. Keep in mind that supplements the Naturopath prescribes will represent a significant cost as well - as much or more than their office fees in many cases. Of course this all varies by individual patient and doctor - so this is just a rough idea of costs.

My acupuncture therapist charges me $50 a visit as I don't have insurance. I saw an excellent chiro/Nutritionist the other day and I was charged $56 and she spent over an hour with me and my daughter. These are what I would consider to be on the lower side of costs.

I think the challenge with any alternative service provider, and this holds true for traditional doctors as well, is finding one that suits your needs, your personality and your budget. Once you find one provider - for example, for me it was my acupuncture therapist, who you know and trust, they can often refer you to other providers to fill in any other areas of treatment you want to consider.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

babs249
Posts: 223
Joined: Sun Mar 27, 2011 10:36 am
Location: Massachusetts

Re: CSN Forum

Postby babs249 » Fri Dec 16, 2011 11:15 am

I was on the CSN board for years - joined about a year after I found it in 2003- 2004. It was wonderful when I first joined. The vibe was great, everyone was very supportive and non-combative. A few of us even met for dinner a number of years ago when one woman and her husband were in the area from out of town. Unfortunately, almost a year ago I felt it was time for me to leave the board because of the issues that have been brought up on this thread. I am not the only one who left. Some of the other "old-timers" also didn't like what was happening and also left. It seems to me as though there are a number of people on that board now who are just lying in wait for someone to say something they don't like or find offensive, and then they pounce on that person. That's NOT what a board like that (or this) is supposed to be about! We all have one thing in common, this disease. Whether we have/had it, or a loved one has, we should all be able to put other differences aside and join together on that!

I just want to say how much I appreciate this board, and the fact that the "vibe" here is so good. While everyone might not agree on everything, and that wouldn't be possible anyway, at least everyone is kind to each other.
Stage II CRC - 2001
Resection May 2001

gracie
Posts: 110
Joined: Tue Feb 23, 2010 10:37 am

Re: CSN Forum

Postby gracie » Fri Dec 16, 2011 12:40 pm

dasspears, so great to see you! I find it a shame that our FDA only regonize Chemo, Radiation, and Surgery? They don't do studies on nutrition and other things?

Some American Hospitals now are using 'Both' Medicines from other countries and our own common medicines. My Naturalpath was resonable (about $50 for 45 minutes) All the suppliments he had me get were under $100.00 and I still have much left, but it is about time to get it again. I did not find that too bad. (I only wish out insurance would really wake up and help us)
In some areas Insurance will pay for acupuncture.
I have a friend that goes to one that offers all NWgirl gave in her link. The lady is very sick and really has no options left with Chemo or trials. Very hard for her but she is so optimistic. (I wish her well)
I really wish our Insurance Companies would help us with some of these other options.
I know one man that has done TCM for years and his cost is a tiny fraction of what Chemo is. I think he was given only a year with Chemo, but his surgery wounds had not healed and they said 'It is too late for the chemo to work right'
None of us know, we can only do what is right for ourselves.
Keep us posted!
babs249 you are so correct, but there are a few left intelligent, compassionate, caring. I will never forget them.
gracie
rectal cancer DX Sept 9th of 09 (stage 3)
chemo/rads 6weeks starting Nov 09
Surgery April 13 2010
chemo/ 5FU and Oxi starting 6 sessions (developed blood clots, heart and breathing problems)
suppliments with Naturepath Dr 2010

Seriously, WTF?
Posts: 602
Joined: Wed Nov 17, 2010 10:48 pm

Re: CSN Forum

Postby Seriously, WTF? » Fri Dec 16, 2011 2:42 pm

A-W-E-S-O-M-E AWESOME, AWESOME, AWESOME ARE WE!!!!!!!!!!!!!!!!!!!
ALWAYS IN MY HEART!
5/7/2013

User avatar
very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: CSN Forum

Postby very worried husband » Fri Dec 16, 2011 2:45 pm

Gracie!

So happy to see that you are doing well. My first post was on ''STAGE 3 NED for how long''. Hopefully she will come permanently in April, after her blood tests in March. :D
I see TCM and naturopath as the remedies to reduce the side effects, and I hope it also increases the chances of being NED. Actually my wife is under treatment of TCM who is a doctor (western medicine) and PHD in TCM (best of both worlds!), which is great. It gives me a lot of hope as I have seen quite a few of his patients who are actually doing great despite advanced cancers and grim prognosis. I would do anything possible to prevent this monster coming back. And for that I think its better if my wife gets the best of both world. Here is hoping. My wife also had neuropathy because of oxiliplatin, but i think as long as she does not have that C word, we are both fine with that....I am so happy that you are also following the same kind of treatment as my wife and are doing well.....
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

sweeny
Posts: 149
Joined: Fri Jul 15, 2011 8:24 am

Re: CSN Forum

Postby sweeny » Fri Dec 16, 2011 8:55 pm

i check out CSN from time to time, though i never post there. my only issue with the site is that it's so much slower than this one, and at times (such as right now) it's down due to server overload. also, this site has more advanced features such as being able to search all the posts from a specific member that i find useful, which CSN doesn't offer.
in fact, now would be a good time to say kudos to all the techies that keep this site up and running 24/7. In all the time i've been visiting i've never experienced a problem, and as an ex-geek i'd like to say good job guys !
Diganosed Nov 2010, Aged 35 / Male
T3N0M0 CC
colon resection
12 rounds of FOLFOX - finished May 2011.


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