Advice re. Cancer Treatments

[MuranoJo]

My cousin recently discovered she has Stage III colon cancer. She wants to avoid chemo so has committed to trying the Burzynski Clinic.

Not my decision to make, but I thought Stage III was fairly treatable with standard Chemo, etc. So last week I was doing some online investigation and found not many, but a couple of negative posts, including this one.

I'm just hoping it's the right decision for her, and I'm also hoping anyone who has experience in this area might be willing to share.

 

[gpurtz]

You should do what you can to get your cousin to go to MD Anderson.

 

[Jestjoan]

www.quackwatch.org Lots of info there. Good luck.

 

[MommaBear]

If the Burzynski Clinic methods were more effective than chemotherapy, it would be the treatment of choice. Medical treatments are recommended based on extensive research and results interpretation. Cancer treatment is based on clinical guidelines that are derived by both prospective and retrospective studies of thousands of people undergoing treatment. The Burzynski methods are not part of those guidelines. I would strongly encourage your cousin to follow research validated treatment, not experimental treatment.

 

[funtime]

I agree that she should only follow the treatment of legitimate oncologists and cancer centers. Also many chemos have been given a "bad rap" from years and years ago when everyone got violently sick with chemo - that just is not the case anymore and no one should draw the line in the sand at "no chemo." And if a chemo does not agree with you, the oncologist usually has another one that will.

Once you are in the system you are much less likely to fall prey to scams like this but she is at the door of a legitimate treatment center and does not want to go in. That is a huge mistake, probably a deadly one. Probably one of the best things you can do is ask what type of chemo was recommended, go with her to the doctor for more explanation and/or tell her you will accompany her to her first chemo treatment (that is if you are geographically able to do so.) Also, ask her why she is so scared of chemo? What she may be is in denial that she has cancer and wants to avoid coming to terms with that assessment.

I believe that the American Cancer Center has a buddy system where they try to hook up a person with the same or similar cancer with the new cancer patient and you should look into that.

Please keep us posted of any efforts that are helpful as in my view she is making a potentially deadly mistake with no information or recent experience with cancer treatments. Funtime

 

[MuranoJo]

Thanks to all of you for your comments and suggestions.

Unfortunately, she does not live within driving distance. She's kept this very quiet and she's not been responding to calls and emails, until she announced this decision. And she has a history of avoiding doctors and trying alternative treatments.

My fear is if she goes down this path and it doesn't work, then it may be too late to turn back.

I am going to collect as much information as I can get and try my best to reason with her. At some point, I'll probably have to back off as the bottom line is it's her decision.

 

[TSchmidt]

I have a friend who was also diagnosed with Stage III colon cancer. She did extensive research and decided to go here: http://blockmd.com/ for treatment and has been very happy. She had surgery, chemo which was specifically designed for her type of cancer, and changed her diet drastically. She eats only fish, good carbs and no sweets. It has been almost two years now and she is doing very well.

Best wishes to your friend. These are hard decisions to make.

 

[MuranoJo]

I have a friend who was also diagnosed with Stage III colon cancer. She did extensive research and decided to go here: http://blockmd.com/ for treatment and has been very happy. She had surgery, chemo which was specifically designed for her type of cancer, and changed her diet drastically. She eats only fish, good carbs and no sweets. It has been almost two years now and she is doing very well.

Best wishes to your friend. These are hard decisions to make.

Thank you for sending this along. This place at first glance appears to be a balance of chemo and diet. I will check into this further.

 

[funtime]

Please give her encouragement from this group!

We are responding because we care even though we do not know your cousin. I suggest that if she does not respond to emails, print all of this information up and mail it to her including best wishes from TUGGERs including myself. She may have negative experiences tucked in her mind from someone who died twenty years ago - and life - and cancer treatments - have changed dramatically since then. Alternative diets can be a good thing and I doubt too many doctors would object to her changing her diet as most changes end up for the better. However, alternative treatments are deadly - not just a bad idea - but deadly. Whereas, with regular treatment - including chemo - cancer patients are living with cancer as a "chronic disease" and living for years after diagnosis or in the best of worlds, if they are not yet stage IV as she apparently is not, having the "traditional" cancer treatment entirely successful. Janette aka Funtime

 

[Hophop4]

Just last night on the Local Houston News was a story about Burzynski and his clinic.

Here is the link:

http://www.click2houston.com/news/H...ients/-/1735978/8581480/-/kvw9si/-/index.html

 

[bogey21]

She did extensive research and decided.......

This is the secret as far as I am concerned. It is exactly what I did when I was diagnosed with prostate cancer 12 years ago. My goal was to try and know as much as my doctor about treatments in order to be able to have a meaningful discussion with him. The knowledge I gained was invaluable in making my decision how to be treated.

George

 

[judyjht]

Thanks to all of you for your comments and suggestions.

My fear is if she goes down this path and it doesn't work, then it may be too late to turn back.


Isn't that what happened to Steve Jobs. Did not want the mainstream path and look where he ended up!!

 

[funtime]

Another thought - have her look into Cancer Treatment Centers of America - there is one in Tulsa. While they are certainly not "cutting edge" her cancer might not be a tough kind of cancer. What they excel in is a lot of TLC - that is right - tender loving care and a lot of attention to the patient, a winning attitude and they have the ability to get the "fight up" in people. Food is also very good. This is from third parties but I believe it to be true. Funtime

 

[DavidnRobin]

Thanks to all of you for your comments and suggestions.

My fear is if she goes down this path and it doesn't work, then it may be too late to turn back.


Isn't that what happened to Steve Jobs. Did not want the mainstream path and look where he ended up!!

First - sorry to hear the bad news - cancer sucks...

I work in this field (for a biopharm org - so I need to be careful in what I say...)

With mCRC - there are Std of Care options that are very very good - First and Foremost... get to a major cancer care center (e.g. MD Anderson, but there are many others...) to find-out treatent options and start treatment ASAP - do not delay this as this is the largest determinate for survival time - you can do internet research concurrently while this is going on.

Second - insist the oncologist find out the KRAS status of the tumor (wild-type or mutant) as this will play a large role in the treatment options.

There are many clinical studies evaluating new treatments for mCRC - check out this web-site
http://clinicaltrials.gov/
most major clinical study centers are located in big cities, and associated with the research centers. The hassle (and expense?) of doing this may be the difference in seeing more birthdays, births, holidays, etc with loved ones (and they with you).

Steve Jobs had an unusual type of pancreatic cancer (called PNET) - if it was not PNET type of pancreatic cancer he would not have survived for more than 6-months (most likely). Regardless, mCRC is not PNET - and mCRC has great treatment options (whereas pancreatic and PNET do not).

best of wishes...

 

[MuranoJo]

Hop,
Thanks for the link to that recent news story on the clinic. That is exactly what I was looking for--some ammunition which isn't too old.

David,
It's so good to hear there is hope and there are treatment options with promise.

My sis (who's an NP) finally had a very tough discussion with our cousin the other night. Oncologist apparently told the cousin it would take ~6 mos. to complete chemo and she'd not be able to work. She does not trust conventional medicine and believes the testimonial videos on the clinic's website.

I am very touched you've all taken the time to send your encouragement and sound advice. Thanks so very much.

 

[DavidnRobin]

David,
It's so good to hear there is hope and there are treatment options with promise.

My sis (who's an NP) finally had a very tough discussion with our cousin the other night. Oncologist apparently told the cousin it would take ~6 mos. to complete chemo and she'd not be able to work. She does not trust conventional medicine and believes the testimonial videos on the clinic's website.

That is incredibly sad to hear - and an extremely poor decision on her part that in all likelihood will result in her being alive for a significantly shorter time. Sorry if this seems harsh - but this is not something to take lightly.

Believe me - I am all for people's right to end their life with dignity (and live daily with the harsh reality of cancer), but in this case she is essentially giving up months/years (based on well-defined clinical outcomes) for being inconvenienced with 6-months of periodic Chemo every 3 weeks (with bevacizumab most likely). If this was pancreatic cancer it may be better argued that the benefit from treatment may not be worth the time gained - but not with stage 3 mCRC.

The 2 chemos that she is likely to get one that contain Irinotecan or Oxaliplatin - look these up - and yes they are toxic (for good reason), but often not as bad as they read (depending...) - BUT not as bad as death.

Also if she is KRAS-positive - there may be more biologically targetted molecules to use.

OK - again sorry for being direct - this is not to be taken lightly - best of luck...

 

[funtime]

I agree with David - please share all of this information. Funtime

 

[Jestjoan]

Everyone has a different reaction to chemo and, of course, to the different kinds. I had mine over ten years ago and while it wasn't fun, it wasn't that bad. I felt worse after the first round but I never threw up at all. They put so much anti-nausea meds in it, that it just isn't as bad as the "olden days."
I'm sure it has probably improved even more by now.

I had a friend who threw up every time she had chemo. When I said something to my oncologist, he intimated that one's mindset/anxiousness can have a lot to do with it.