[tammymarie1971]

I realize this has nothing to do with employment, but it is certainly politically motivated. Quick overview...I was first dx's in '01 30 yrs old..Really felt that the BC cancer agency was doing everything it could to cure me...Great!!! Then in '04 I had a recurrence to the liver...still I thought that they were doing their best, I was 33 and had 4 kids 10 & under, I had a liver resection only after my case was put to a board for approval...I had to have all kinds of tests to show that the only met was this 3 cm tumor in the liver and respond to 3 rounds of treatment (herceptin/taxol) and get the approval from a surgeon...Then I was approved for the surgery!I also had another 3 rounds of taxol/herceptin. (IF only I would have insisted on staying an herceptin alone for a year) Then I had another recurrence in '05 to the spine...They were not going to give me herceptin and I really felt written off...I left the BC cancer agency and found a private onc(still covered by BC med) in Vancouver, I am in Abbotsford. He put me on herceptin and zometa right away,(summer '05) along the way we added navelbine to keep tumor markers down. Well they started to rise again in October '06. I was then ready for the hormonals (I wanted to get closer to 40 yrs old first)
I have responded great to lupron shots and arimidex. Last January tumor markers were 102 and now they are 31!!!!

Here is the problem, I would like to go off vinorelbine and then eventually herceptin. I am starting to get a bit anemic and I am losing sensation in my hands and feet..I need a break and I want to see if I can maintain on hormonals alone for a bit, well my onc informed me today that if I go off vinorelbine, the BC cancer agency who I guess has ultimate say in what is what all through BC will consider this a failure of protocol and I won't be able to get back on even at a later date. Bottom line is that once you go off a herceptin combo you can never get back on herceptin with another chemo or alone, they won't even consider a maintanence of herceptin alone, even though only 16 - 20% of us will respond to herceptin alone.(I think this is a new rule/protocol called Oscar.)
So I am just ticked right off that I have to stay on vinorelbine in order not to lose herceptin forever. I don't know if this is as enraging to others as it is to me, I just don't know what to do next. I have made peace with the fact that I will have to maintain this cancer for the rest of my life and it won't always be pleasant, but this is buying me more time with my family.
I was pregnant with my youngest when dx'd and he just turned 5 on Friday..I am grateful for these last 5 years..I would like to try for another 5 and then another 5 and then ....But the BC cancer agency is sending many of us to our graves too early...I know that you can sometimes get years from having many chemo options but the women of British Columbia are being short changed!!
Thank you for listening..I hope I made sense..
Tammy