Working on more story angles for BC article

[vpfeiffer]

(please refer to my post from yesterday entitled "YOUR INPUT NEEDED for breast cancer article"....)


THANKS!! Your responses have made me think of these other possible points to bring out in this story--so please post your thoughts on these topics as well. Please post your thoughts, experiences, opinions, whatever....I am in the brainstorming mode right now and have not solidified the entire direction of this story. I only get 2,000 words so I want to choose them wisely :-)


1. Difficulty getting cutting edge care in other countries (Lyn--I LOVED your comment about your health care officials perhaps thinking that you all are aliens that are different than humans in other countries--can I use that???)...and even having trouble getting treatment from providers in our country--there are several cases on this website of women who have not been able to get treatment protocols that are readily offered elsewhere in the country.

2. How the internet has empowered us and supported us (I need to get details from Christine about what was said about this website when she was in California).

3. The power of positive attitiude, faith, etc on our recovery and maintaining our health status.

4. The future will be individualized, targeted therapies based on the pathology of our specific cancer cells, staging, etc.


thanks!
Val

[StephN]

Val, I am inserting some thoughts and comments in between your questions which I have copied and pasted. Great that you get to write something on our common problem.

1. Difficulty getting cutting edge care in other countries (Lyn--I LOVED your comment about your health care officials perhaps thinking that you all are aliens that are different than humans in other countries--can I use that???)...and even having trouble getting treatment from providers in our country--there are several cases on this website of women who have not been able to get treatment protocols that are readily offered elsewhere in the country.

This is a strange one as we have had posts from others, such as a woman in India who said that a PET scan only costs $200 USD in her city. Granted, this is a lot of money for many people in India, but the fact is that one CAN have a PET scan over there.
Also the cost of Herceptin varies wildly from place to place across this country as well as other countries where it is readily available. (Recall Sheila's problem with her clinic charging almost 2 times the normal price.)
Abraxane only got FDA approval in this country this spring, but it still should NOT take anything like 5 years to be approved in Australia! It is a much more expensive drug, and this could be why a country with socialized medicine will drag its heels getting it.

2. How the internet has empowered us and supported us (I need to get details from Christine about what was said about this website when she was in California).

When I was first diagnosed my med onc sort of disuaded me from spending much time on the net or paying too much attention to cancer "cures" touted in the internet. That was 5 years ago, and he is no longer of that opinion because there is a lot of very good information one can find. He is an excellent practicioner and stays on the cutting edge in breast cancer diagnosis and treatment. He has also learned a lot in these 5 years, and the options are broader for all of us. If your med onc is stuck to treatments of 10 years ago, it is time to move on if there is a new possiblity for you! Patients are much more encouraged to find out about their disease and participate in all types of support groups.

3. The power of positive attitiude, faith, etc on our recovery and maintaining our health status.

Many of us here at HER2support.org are very positive types. Maybe a little stubborn as well! We are just not the type to give in so easily to anything, let alone a life-threatening disease. The phrase "life threatening" is a key here. We have to get used to the fact that our bodies have turned against us, and we must do what we can to reverse and block this process. Some of the treatments are harder on us than others, but those of us with more aggressive type disease (such as myself) can't afford to slack off.
My disease is chronic - I have had metasteses only 6 months after completing my adjuvent chemos of 12 weekly Adriamycin and 4 Taxotere. I was feeling just great, so it was quite a shock to learn that my liver was about 60% taken over by tumors and it was starting into my bones. This was only 3 months after my last normal bloodwork and tumor markers.
I had to enter a brand new clinical trial for hard-to-treat mets. There was virtually no data on this treatment and I was #6 enrolled.
Herceptin was not available to me as part of adjuvent treatment, but I got it as part of this trial using also Taxol and Navelbine. It worked for me - I had dramatic results in one month. After 7 months I was in remission with a complete response - also known as NED. Am still at this point over 3 years later.
When driving myself to my second weekly trial treatment, I had a little chat with God. I said that it was not my turn to "go" and all I asked was that my body would accept the drugs and they would do their work.
This year I have had to face a bout with tumors in my brain. Gamma Knife seems to have taken good care of those two tumors, one of which was one inch in diameter. I had no symptoms that these tumors were there, other then a slowly rising CEA tumor marker.
My husband has juvenile diabetes and we have a very good healthy diet. People who just meet us and learn this can't believe that we are both long-term survivors as we live such an active and satisfying life. For me stage IV cancer is just another "stage" - not the end of my life. As someone else once posted here - "I have cancer, cancer doesn't have me."

4. The future will be individualized, targeted therapies based on the pathology of our specific cancer cells, staging, etc.

This is accurate, but do not forget the work coming out on anti-angiogenesis drugs that block the tumor's ability to build a blood supply. Also there is more work on aromatase inhibitors which are essentially hormone blockers for tumors that are hormone positive. Most patients now have a few prongs pointed at their disease. There are bone building drugs which inhibit tumors in our skeletal areas. Researchers are finding more ways to interrupt cell growth as they get deeper into the genetic makeup of our bodies and tumors.
Then there are new blood screening methods such as the tumor cell counting tests. There are also blood screening tests in development that measure other tumor-related by-products. Some of these will be presented as early as next summer at ASCO.

[Lyn]

Hi Val, by all means use it. I can't understand why Australia is ready to jump in and do what America does except approve drugs. We can decide to go to war overnight, we can send billions to Timor, Indonesia, Iraq, everywhere, but the government doesn't want to give us the same drugs you can access, they would rather use all the protocols up first, maybe there is a lot of drugs in storage and they need to get rid of them first, stands to reason if we find the magic bullet a lot of drugs will be superceded, crashing the stock market prices and profits. I think we may just be a pawn in a money making scheme, all the research I have been doing lately I keep getting sites that discuss which pharmacutical companies are in front, cutting edge making money. What about us, I suppose if we never catch up with the winning drug we can at least invest in the stock market and die rich and be promoted to first class with our gold wings..

Love & Hugs Lyn

[*_Christine MH_*]

Hi Val,

Just wanted to write in about the situation here in the UK, which is a mess. Some of the private health insurance companies are paying for herceptin, but many are not. A few very high risk patients, such as those with hormone-receptor negative inflammatory breast cancer, seem to be getting it on the national health service, but most cannot. Quite a few people seem to be buying herceptin privately, although there are some really tragic cases where people are high-risk and can't afford it. The national health service and some insurers have been saying they won't act until herceptin has at least been properly licensed for early breast cancer, but since some insurers already cover it, the real problem seems to be money. My personal opinion is that the groups not paying for it now, even for really high-risk cases, are making a big mistake given how long her2 patients may be able to live in the future on herceptin and those therapies won't necessarily come cheap, but they are probably only thinking of the short term.