Discussion with Panwalker

I have been reading and reading and reading and reading about Herceptin and Tamoxifen, the two drugs that the doctors still want me on after chemo and surgery. There is so much information out there- it make my head spin! I think I mentioned before that I told Dr. Panwalker that I should be the Poster Child for a "No Drug" Campaign. I really want to be off as many medications as soon as possible and not even take some if they aren't absolutely necessary. He told me, "we'll see". What he doesn't realize is that I am a Mother of four and I know what "we'll see" means. It really means... I have one idea and you have another and I will give it some time before I tell you that. Hah! I have him all figured out! LOL
After all my hours and hours of reading, I have come to the conclusion that they (the medical world) know nothing about cancer! OK... they know a whole lot but... nothing for sure or at least everyone has a different idea of the best thing to do. It's so confusing!
I did set up a special meeting with Dr. Panwalker today with the intent of telling him that I'd like to get off all the meds. He was surprised to see me until I started to explain my "No Drug Campaign" position. After a long discussion of statistics of re-occurrence and side effects, I have opted to NOT take Tamoxifen (even though I think Dr. Panwalker may be beginning to see me as a pain-in-the-behind patient). But I guess to insure Dr. Panwalker doesn't write me off completely- I will continue with the Herceptin for a little while longer. Perhaps until we leave for Colombia (we are still hoping that is happening) or until the end of the year? Which ever comes first. We'll see! There is debate in the "study" world over whether 9 weeks of Herceptin is just as effective as a year but not enough to convince my doc that I have done enough. Dang! I'm pretty convinced but also realize that I do NOT have a medical degree... However, I should like to petition that any Cancer Survivor should be awarded an honorary degree of some kind! LOL

Here's a few things I've learned that most people will never read unless you unfortunately ever get breast cancer. (I know... who has time to read everything I write, right? See... I have you figured out as well. LOL) So, let's hope you never have reason to read them! ;):

Herceptin

Trastuzumab (trade name Herceptin) is a monoclonal antibody that interferes with the HER2/neu receptor. (I tested positive for the HER2 receptor) Its main use is to treat certain breast cancers.
The original studies of Herceptin showed that it improved overall survival in late-stage (metastatic) breast cancer from 20.3 to 25.1 months, but there is controversy over whether trastuzumab is effective in earlier stage cancer. Herceptin is also controversial because of its cost, as much as $100,000 per year, and while certain private insurance companies in the U.S. and government health care systems in Canada, England and elsewhere have refused to pay for herceptin for certain patients, some companies have since accepted herceptin treatment as a covered preventative treatment.
Herceptin is an IV drug administered every 3 weeks for a year.

Herceptin Links

Here's some general information page about Herceptin:
http://en.wikipedia.org/wiki/Trastuzumab
This is an article from 2008 about a debate over whether Herceptin should be administered for 9 weeks or 12 months:
http://www.pharmac.govt.nz/2008/08/07/Herceptin%20media%20release%207%20August%202008.pdf
An article about the heart benefits of only doing a 9 week course of Herceptin:
http://www.cancer.org/Cancer/news/News/short-course-of-herceptin-may-limit-heart-damage
This one is way long and mentions tons of stuff:
http://www.aetna.com/cpb/medical/data/300_399/0313.html
I love this chart. It's a bit confusing but it's all colorful and has information on both ideas:
http://www.fmhs.auckland.ac.nz/sms/oncology/_docs/NZSO10_Poster.pdf

Tamoxifen

Some breast cancer cells require estrogen to grow. (I also tested positive for the Estrogen receptor) Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor. Hence breast cancer cell growth is blocked.
Tamoxifen is usually prescribed in a pill form and taken for 5 years.
Tamoxifen Links
General information:
http://en.wikipedia.org/wiki/Tamoxifen
Talks about other drugs that inhibit tamoxifen:
http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp
A more pro-tamoxifen site:
http://www.chemocare.com/bio/tamoxifen.asp

Here's the reasons why I am opting to NOT take Tamoxifen. Keep in mind that Tamoxifen is used to block the estrogen in breast tissue- which I now do NOT have. (or may have 2% left)
The most common side effects of tamoxifen are:
increased tumor or bone pain
hot flashes
vaginal dryness
nausea
fatigue
mood swings
depression
headache
hair thinning
constipation
dry skin
low or loss of libido
And these are some side effects that I found of people actually on tamoxifen (not the doctor's recommended side effects but real people):
* chemobrain, muscle cramps, hot flashes, and night sweats
* I feel nauseated
* insomnia
* hot flashes- they are very severe, insomnia, irritability, depression. I gained 15 pounds.
* memory loss, bouts of confusion, unable to verbalize things that are so clear in a conversation or things that I see but just can find a word for it such as apple, car, Walmart etc.., of course hot flashes, lite to moderate vertigo, pain in my right calf but lately more in the left, a very uncomfortable feeling in my throat, headaches around my eyes moving up to my forehead and around and the list goes on.
* anxiety, headaches, making terrible and costly decisions, forgetting words (I have a big vocabulary), hot flashes and feeling sorta crazy and unable to cope
* Teeth problems- receding gums, infection resulting in teeth pulled
* Then AFTER getting off tamoxifen a few reported worse pain than when they were on it. This was the explanation for that- "What is happening is that you body is going through withdrawal from the Tamoxifen and at the same time, your natural hormones are flowing back with a vengeance. The flood gate of estrogen is now open! It should get better with a little time. Your body has to "normalize" itself, again, after all these years of blocking the estrogen. In the meantime, your body is relearning what the estrogen is supposed to do."
SEE??? NOT fun and NOT interested. Thank you very much!