Alternative or CAM therapies

[pecwae]

I'd like to hear what others are doing in this area whether as a stand alone or, as in the case of CAM, as adjunct to conventional therapies.

I've had Stage 0 and Stage 1 breast cancer. First time I did lumpectomy and 33 rads. Last time I did bilateral mastectomy with chemo. I could only tolerate 9 of the 18 recommended Taxol infusions and just stopped Herceptin infusions after getting 8 months of the 12 recommended. I just feel like my body has had enough right now.

I'm taking LEF Mix, turmeric, green tea, quercitin, COQ10, D3, flax oil, reservatrol, DIM, digestive enzymes, thymulus, magnesium, kelp and have just stated Femara. I've ordered Immpower as a friend with Stage IV SCLC is doing so well with it as CAM to Taxotere/Gemzar.

[Stepup2]

1. Hi

I am a BC survivor and I found these sites to be very informative. The fist link is to Sloan-Kettering's integrative cancer care website. The second is a site that contains nutritional info from a 3 time survivor. This site contains many links to CAM related, somewhat well vetted, information.


http://www.mskcc.org/mskcc/html/1979.cfm


http://www.cancerrd.com/

[katinmn]

2. Thanks for these resources! n/t

[pecwae]

7. Thanks!

I have seen the second link, but never the first one. I bought Diane's book not long after my last recurrence and it is a treasure of information.

Good news about your survivorship! How long has it been for you?

[Stepup2]

11. You are welcome

It was four years for me this spring. I have had a few biopsy scares, bit so far so good for me.

[OzarkDem]

3. Information about CAM clinical trials

Here's a link to the CAM clinical trials at National Institutes of Health

http://nccam.nih.gov/clinicaltrials/

[katinmn]

4. Thanks. Printed some out to show the family

In my mom's type of cancer there are almsot 2 dozen studies recruiting; some are recruiting in MN.

Too soon to look closely but good to know about.

[pecwae]

8. This is a great resource

I got very excited about the hot flash study for BC, but the distance makes it impossible. It was one of the few studies for those without active disease. I've heard from local acupuncturists that it really does lessen or eliminate hot flashs. If only acupuncture was covered by my insurance:(

[OzarkDem]

10. It will be if research shows it works

Hot flashes are a pain! I used to get them so bad when driving my windshield would fog up completely and I had to turn the defroster on.

:grr:

[OzarkDem]

5. You need to stay on the Herceptin if you can

It works very well and I know many Her2 positive women w/ mets who have been taking it for several years.

Did your doctor recommend you stop?

[pecwae]

6. No, I made the choice myself

Being Stage 1 with no mets and with no conclusive studies that show how long it is required in the adjuvant setting I decided to stop after getting the 7 months worth. Both my breast surgeon and onc concurred with my decision since there's no definitive studies showing how long Herceptin protects in the adjuvant setting. I just felt it was the right time to quit and not take a chance on becoming Herceptin resistant if I should ever need it down the road.

I agree heartily with staying on Herceptin if one is dealing with mets. I know one woman who has been on it since clincial trials began, something like 6 years, and keeps her mets stable. The Her2 online support group has many woman like her who have had awesome results with it. In my case it was prophylactic.

Thanks for your concern. This is what this group is all about and I appreciate your post.

[OzarkDem]

9. Ok, I understand

For some reason, I thought you had mets (whew!)

You're right, seven months may be ok for Herceptin in the adjuvant setting. Our organization is bugging Genentech to do more trials to determine the optimum length of time for adjuvant Herceptin. Its so expensive ($95,000 for 1 yr) and if women can get full benefit from less than a year, they should know that. Our group worked on the BCIRG 006 trial for use of Herceptin in the adjuvant setting, helping accrue patients. I'm glad it turned out so well.