And TDM-1 #2 since I am completely behind 😛
I don’t remember where I left off in my last post so a quick recap. All hell was breaking loose. There was a lump in my right breast, a mass in my right armpit, a lump in my shoulder, skin involvement in several spots which had even started to break through the skin so I had some open yucky sores, my right arm was totally swollen to my fingertips, and the motion in my shoulder was so limited I couldn’t raise my arm to shoulder height.
On November 8th, yup THAT day, I had my first cycle of TDM-1, also known as kadcyla. (Last time I started a new treatment was on federal election day in Canada in 2015 so starting this treatment on election day in the U.S. seemed fitting.) My oncologist didn’t have my final Her2 results yet but we decided that I was not going to be the first patient at the Victoria site of the BC Cancer Agency to go from triple positive to triple negative biomarkers so TDM-1 was the best choice of treatment.
For my first treatment the infusion ran for an hour and a half and then I had to wait through an hour and a half observation time. About half an hour into the observation time I felt a sharp little pain in my armpit. I felt a few more before the observation time was complete. I have had similar pains in the past, I think they are the final death throes of cancer cells. Either I was still Her2+ or I was having the Best. Placebo. Effect. Ever.
About an hour after getting home from treatment I received an email from my oncologist, I am still Her2+. Yay! That means not placebo effect, that was actual cancer cells dying. What a fabulous birthday present!
Over the next 5 days or so, including my birthday, I felt pretty much like crap. The primary side effect of TDM-1 is flu-like symptoms. I definitely had those. No energy and gross feeling. But lots of those wonderful little shooting pains of dying cancer cells.
Within a few days I was already seeing improvement in the skin lesions and the lump in my shoulder was shrinking. When 3 weeks was up and it was time for my 2nd dose of TDM-1 my energy level was the best it had been in months, the skin involvement was almost all healed, the lump in my breast had shrunk, the lump in my shoulder was gone, the mass in my armpit had shrunk, and the motion in my shoulder had improved significantly. My arm was still very swollen but I had noticed a little bit of improvement. I figure I will have to wait for the mass in my armpit to shrink a lot more before the lymph fluid can really start to drain.
In the midst of all of these fabulous changes I had a whirlwind weekend trip to Toronto for an advocacy workshop put on by the Canadian Breast Cancer Network. This is an organisation that has been very involved in patient education and advocacy. As I have not been volunteering since Ian and I moved to Victoria I thought it was time to make some new connections and find a new project.
The workshop was designed specifically for metastatic breast cancer and some of the most significant issues faced by MBC patients. One of the most important issues is access to drugs. We learned about the actual steps involved in a new drug getting Health Canada approval and then eventually reaching the market. It turns out that once a drug is Health Canada approved (which can take up to 2 years) it can take up to another 2 years before a drug may be accessible by patients. This is because each province has to go through its own process to work with a drug company on price and coverage.
For an MBC patient that has run out of treatment options waiting 4 years for a new drug is not feasible. I am fortunate that I am only on my 3rd treatment option and there are a few more still available. But, it would only take a few failed treatment regimens and I would be at the end of the line. Based on how rapidly my progression happened over the last couple months waiting 4 years for a drug is a death sentence. This is where advocacy comes in.
The goal of the drug access campaign is to ensure access to life saving drugs for MBC patients whenever they are needed. Right now, special access to not fully approved drugs can be achieved through a few different routes. New drugs are initially available to MBC patients during drug trials, often trials are only offered to MBC patients especially in the early stages. To give patients access the trials are occasionally artificially extended so patients that have been benefiting do not lose access while the drug is moving through the approval process. Sometimes a drug company will offer compassionate access to a drug so patients can remain on the treatment. And sometimes a province will be pressured to make the drug available before it has gone through the entire approval process.
While it is good these routes to a drug are available, none of the routes are automatically available. The onus is on a specific patient or a patient advocate to request this special access and even with the request it is not a guarantee that the patient will be approved or approved before it is too late.
It is essential that new drugs are made readily available to MBC patients every time they are needed, even before full approval by provincial health systems is complete.
And I’ll jump off my soapbox now. 😉
Back to me, since I’m really important to me……my 2nd dose of TDM-1 was uneventful. I was down to a half hour infusion and a half hour observation. And no problems were observed.
I had a few days of ick feeling after but overall no complaints. These are side effects I am happy to deal with. My lumps and bumps continue to shrink, maybe some day soon my elephant arm will shrink too. At least it doesn’t feel like it weighs 20 pounds any more. It only feels heavy when I raise my arm above my head (woo hoo, I can raise my arm above my head!) which made putting up Christmas lights a bit of a challenge but I got it done. Christmas baking is done and most of my shopping. I don’t think I have ever been this prepared this early for Christmas before. Next up is the tree.
We did get actual snow in Victoria. It really is a rare occurrence. Here are pictures for those of you not on Facebook:
Orchid is really enjoying the snow day.
It is 11 days until my next treatment. I’ll try to post again after that, but if I’m too busy, Merry Christmas, everyone!