Naturopath Options

Rahab · 02-13-2009, 12:27 AM

My tumor markers have risen even though I have had 4 Herceptin treatments, I am disappointed because I thought the Herceptin would knock down the tumor markers. Oncologist wants me to use Gemzar or Navelbine, since it is synergistic with Herceptin. I don’t want to do chemo agents. I am looking into naturopath remedies. My cousin with advanced breast cancer has been successfully using Tetrathiomolybdate (with her naturopath) which I learned is now in a Phase II trial. Has anyone looked into this? Can anyone on Oahu suggest a good naturopath? Thank you.

DX 02/1990 – Stage II; 9 out of 13 positive lymph nodes. Mastectomy; 6 rounds CAF; 4 rounds 24/7 hospitalization with IV drip of Velban and Methotrexate.

Fall 1997 – Recurrence lymph node in neck. Surgery to remove lymph node. Radiation.
Fall 1997 through Fall 2004 on Tamoxifen (Ned).

Fall 2004 – Recurrence in lung. Biopsy indicated Her2. Femara. Lung nodule decreased in size; thoracotomy December 2005.

Spring 2008 – Recurrence in hip. Stop Femara. Start Zometa, Faslodex.
Fall 2008 – Scans show possible progression in liver and spine with rising tumor markers. Stop Faslodex. Continue Zometa. Start Aromasin, Herceptin (every 3 weeks).
2009 – Tumor markers rising. Need to find treatment.

Mary Anne in TX · 02-13-2009, 06:38 AM

Hi Rahab! Sorry you need more treatment. I found the herceptin and navelbine to be the easiest of all the treatments I took. It was also during that time that my tumor markers came down the most. Best wishes for finding what you need now, ma

freyja · 02-13-2009, 09:31 AM

Hi Rehab,
I send strong thoughts of healing energy to you. I haven't used Navelbine, but I've heard about a lot of good results from it. I also respect your feelings if it's just not acceptable for you. I have done chemo and also see a naturopath for more natural treatment of side effects. I haven't heard of the treatment you mentioned, but I highly recommend the book "The Complete Natural Medicine Guide to Breast Cancer: A Practical Manual for Understanding, Prevention & Care" by Sat Dharam Kaur, Naturopathic Doctor. It discusses very thoroughly traditional and alternative treatment methods.
I wonder if ElaineM has recommendations for a Naturopath in Oahu?

ElaineM · 02-13-2009, 11:18 AM

Aloha,
I have seen a naturopath on Oahu for 10 years. Please PM me or e-mail me for details.
I think Herceptin and Navelbine is relatively easy to tolerate, but I don't know much about the other combos.

CourtneyL · 02-13-2009, 03:03 PM

Hello Beautiful Hawaiian Ladies! I posted this on the YoungSurvival website and thought you may be interested in the info too if you don't already know about the U'ilani Fund:

My fabulous OBGYN, Mindy Goldman, just recently told me about an organziation she help found - The U'ilani Fund is a non-profit organization committed to providing support for complementary treatments for women with breast cancer in Santa Cruz, the San Francisco Bay Area, and Hawaii.

The U'ilani Fund has distributed over $100,000 to women undergoing breast cancer treatment since the organization was founded in 2001. If you are in treatment for breast cancer and your health insurance does not cover complementary care such as herbs, supplements, acupuncture or massage, you may qualify for U'ilani Funding.

Check out there website at www.uilanifund.org

I know I personally benefitted greatly from the massages, herbs and acupuncture treatments I receive during treatment. If you are in the SF Bay Area, Santa Cruz or Hawaii and do not have the financial means to enjoy some of these treatments, I urge you to apply for funds from the U'ilani Fund - it was formed in honor of a dear friend of Dr. Goldman's, a fellow doctor, who died of breast cancer in 2000 - Marina Lee U'ilani Bermudez.

I can think of no better way to honor Marina then to share information about this organization with you in hopes that some of you will be able to benefit.

With much love to you all,
Courtney

ElaineM · 02-13-2009, 10:10 PM

Thanks for the info Courtney !!

Rahab · 02-13-2009, 10:56 PM

Thank you for your postings. It is nice to know that people care. I would lurk on this site, but was hesitant to post. Everyone is upbeat and positive, but I struggle with my emotions a lot. I don’t want to be a downer, though by nature I am a worrier.

Has anyone had their tumor markers rise with Herceptin? I am concerned about the cardio toxicity of Herceptin and was wondering since my tumor markers are rising, maybe Herceptin isn’t working. And if it isn’t working on me, then is it just adding toxicity onto my heart?
I think my oncologist mentioned a lower dose on me, could that make a difference on the tumor markers rising?

Thank you for your help and advice.

freyja · 02-14-2009, 10:05 AM

Rehab,
I don't have any info on that question, but I wanted to say that this is a great site to vent those emotions to, also. We all have them, well we're all different, but there are common threads, and the best way to keep our sanity, I think, is to let our thoughts and feelings out, and share with each other. Never worry about bringing us down. We're a team and we do our best to hold each other up.

schoolteacher · 02-17-2009, 07:21 AM

Rehab,

My ELISA test did rise while taking Herceptin, Taxotere, and Carboplatin. Then they went down to the lowest they have been since taking the test.

Amelia

ElaineM · 02-17-2009, 11:33 AM

Tumor markers can rise and fall from time to time even when there is no evidence of tumors. Some tumor markers measure the amount of circulating cancer cells in the blood even when there is no firm evidence of a tumor.
You may want to discuss other non chemo options with your doctor like Tykerb that are in the same category as Herceptin if you are worried about Herceptin not doing its job well.
Please feel free to visit this site whenever you can. We are a wonderful bunch of people who care about each other.

ElaineM · 02-17-2009, 11:36 AM

I just noticed your original diagnosis was in 1990. You are a long time survivor. Congratulations.

StephN · 02-17-2009, 02:23 PM

Hi Rahab -
And congrats on fighting this good fight for so long. I do take a few supplements and made dietary changes years ago when I became stage IV.

I did take Navelbine, which in combination with Herceptin and Taxol, halted and resolved my liver mets. With the general spread you are fighting, you seem to need something new.

Remember that cancer cells are the hardest to kill and that is why a very effective way to interfere with their proliferation is necessary in getting back ahead of the game.

You may want to try Xeloda, which does have side effects, but is also synergistic with Herceptin. No one can tell you what to do, but it may be high time to get tough and put up a different fight.

There is also the Trastuzamab-DM1 trial that is doing a lot of good for many of our members here.

Rahab · 02-17-2009, 04:13 PM

Hi All,
Thank you all for your postings. I am not sure why I am stuck in this indecisiveness and having a difficult time moving forward. I just feel overwhelmed and a bit sad. I thought Herceptin would just work great on me. I still won't give up on Herceptin though. Back in 1990, there wasn’t even a test for HER2. I am not sure what an Elisa test is. My oncologist tests for CEA, CA 27.29, and CA 15-3.
So much has changed through the years…with other new drugs like Zometa too. I hope to find my footing soon and get back into knocking down those cancer cells. I am grateful for the support on this site. I hope I can get over my “stuck-ville” so I can support you guys too.

ElaineM · 02-17-2009, 08:15 PM

It is normal to feel overwhelmed. Just keep putting one foot in front of the other and take things one step at a time. There are alot of new drugs and alot to learn since your original diagnosis. You will find the best combo for you with the help of your doc.
Personally I believe in integrative medicine. Using the best of both worlds-------conventional and naturopathic.

Sheila · 02-18-2009, 06:04 AM

Rahab
Just wondering why they have not tried Avastin with a Taxane for you...it seems to work well.