Some more good news
It’s finally a week of good news and good feelings.
1. My cancer continues to melt away - it’s down to less than 80% than it was at the start.
2. The next best targeted treatment for my cancer - Kadcyla - has been released in Canada and is already in process for funding recommendations. It will be available if and when I need it.
3. The BCCA, my employer, union and insurance company are “aware of my situation” and talking about me at “high levels” thanks to my letter writing and our local media. All I can hope is that it has a favourable impact on getting permanent funding for Perjeta for myself and all those who need it.
4. An amazing group of women threw the BEST EVER family fundraiser and raised $40000. Now I can relax and focus on healing and overcoming my cancer.
Now for some details.....
Over the last few weeks I’ve been full of fear and anxiety related to my last CT scan. Us cancer folk call it SCANXIETY and it’s known to evoke PTSD.
My cancer continues to shrink! I knew that a week ago but I didn’t believe it until I went over the report with Dr. Tequila. He’s very happy with the results. Like “hop up and kick his heels together with a twinkly smile” happy. The biggest lump has gone from 15x11x5.5 cm to 5x1.7cm. The other big one melted from 5cm to vaguely 1 cm. The numerous tiny stars aren’t mentioned at all and the lymph node involvement is gone gone gone. The big mama tumour sits near my gall bladder and is likely causing most of my digestive issues. Yes that’s still a drag. I am missing some dimensions on the reports so I can’t do an accurate shrinkage percent but all in all it my cancer has reduced by at least 80%.
I still have evidence of disease. I tried sleeping with NED (No Evidence of Disease) but he turned me down this time. Perhaps I need to wear the fake boobs and wig more often?
I need to kick some more ass. After 6 months of full dose brutal Taxol treatment I’m reaching “terminal toxicity” so I have to drop the dose. I’m scared about that because I want those tumours melted into oblivion. But I can’t risk getting killed by the chemo. And the Herceptin and Perjeta stay on forever to prevent any spread or growth.
I still can’t have surgery. If the tumours shrink some more they may be able to “thermo-ablate” them. That means melt them with heat in a surgical fashion. But not at this time.
Some more good news has come my way. Kadcyla, the newest member of the HER-2 ass-kicking family, was released for use in Canada by Health Canada on September 12, 2013. It’s also known as TDM-1 or “Super-Herceptin” - yes, cape included. This drug increases overall survival and progression free survival of those with metastatic HER 2 cancer significantly. Just like Perjeta. However, just like my Perjeta, it is NOT FUNDED. Currently the federal review board (pCODR) is making recommendations and then it will go to the provinces for consideration.
I have been working on my Perjeta funding one dose at a time. We are currently carving into Jeff’s extended benefits with a lifetime maximum. Big Pharma is picking up the 20% of each dose his insurance doesn’t cover.
I started my letter writing campaign this summer but have been unable to acquire any more funding from my insurance company, employer, union or from the BCCA to date. However I think the message is loud and clear and my issue is now being discussed at “very high levels.” Sing Elvis’ “a little less conversation, a little more action” here. My next step is to ask for action with time frames.
With respect to Perjeta, the federal review is complete and the BCCA is currently in negotiations with the drug company to come up with “a plan.” They reportedly have the drug “high on their list” and are hoping to provide it in the new year pending negotiations.
I was thrilled to be selected and funded to attend metastatic breast cancer advocacy training with the Canadian Breast Cancer Network in Halifax a couple of weeks ago. What an amazing group of women - all with their inspirational stories and feisty, never give up attitude. The timing was impeccable and the day after I returned I gave my first newspaper interview. It was mostly about my fundraiser however my advocacy message came across thanks to some great reporting.
That article has made it’s way to the top of the BCCA. No, I didn't forward it to them. Hopefully it helps. Not just for me but all those other women who need access to most effective treatments for their metastatic cancer. I still shudder when I think of all the women who couldn’t even think of using Perjeta or other new drugs because of financial issues.
Finally, I am unbelievably lucky. My community of friends, acquaintances, and even strangers has stepped in to help at my recent Harvest Hoe Down fundraiser. We raised over $40 000 in one evening!!!!!! With the first fundraiser and recent donations, that puts me over $50 000 towards future treatment. What a HUGE relief. What really surprised me about the event was that I felt my cancer could have been cured with just the love and support of the people in the room. Pretty special.
With my cancer continuing to shrink and the arrival of another miraculous HER-2 kicker and a nest egg to rely on for treatment my future looks brighter and longer. I have to send out a mountain of gratitude to my family, friends, colleagues, treatment team, acquaintances and the community of Whistler. Love you all.
Check out some photos from my event
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