Navigating the journey of a cancer diagnosis is a bumpy ride. Hills and valleys, sharp turns and steep embankments, long flat plateaus and an exhausting climb. Damned long drive, in my experience!
Things have been pretty quiet here the last few weeks as you may have noticed. I have been resting up from the busy holiday season, and preparing for more Toronto trips and various treatments and procedures in the next couple of months. Monday I am to have the Week 24 bloodwork, consultation with my Medical Oncologist, and IV infusion of my first in the next four ipilimumab (Pacman) doses scheduled in my participation in the clinical trial for melanoma.
Tuesday I see my new Endocrinologist, also at Sunnybrook, to learn more about what has happened in my body since thyroidectomy. I went yesterday to Meaford hospital for bloodwork to check my calcium serum levels and TSH/PTH etc, related to thyroid and the new thyroid hormone replacement (which I HAVE been taking religiously, as instructed, one hour PRIOR to my coffee every morning). My family physician will send results to the Endocrinologist, and he will determine further hormone dosage, calcium supplement dosage, and radioactive iodine therapy timeline and process.
All arrangements made, Grandma and Grandpa have the girls tonight as they are taking them to the theatre in St. Jacobs tomorrow afternoon, so then girls go to Dad's, he'll take them to school Monday etc, while I was planning to spend Sunday night with my big-city buddy from high school, as I have to be at Sunnybrook for 8am on treatment days.
For Monday night I had booked a room at the Lodge at Princess Margaret, to check out the facility I have heard such great things about, in case of future trips ie. during radioactive iodine treatment(s)? Staying at the hotel we have found near Sunnybrook is awesome, but this time around I feel ready to check out the Lodge option of this experience and see how that goes. Twin rooms with roommate, shared bathrooms, free shuttle to and from Sunnybrook, and three meals included with daily room rate, sounds very cool. I feel ready to meet some more people experiencing things as I am, and thought it might be a good opportunity to broaden my cancer horizons, so to speak.
Everything all set, meals planned, emergency backups for the girls in place, bags packed, and POOF. Got a call from Oncologist yesterday afternoon: she has decided to hold off on my treatment for Monday.
She wants to wait to see what Endocrinologist says about timeline of iodine radiation therapy. I am now six weeks post-surgery, and we had been originally told goal for this treatment was 4-6 weeks post-op. If I have my Pacman treatment Monday and Endocrinologist deems it too risky to do iodine right after, then my Oncologist would prefer we hold off in order to give opportunity for radioactive iodine treatment first.
Cancel visit with city friend, cancel girls' sleepover at Dads, cancel Lodge reservation, cancel cancel cancel... *sigh*
I get it.. I understand why she is holding off on the treatment, and I trust her judgement. I just don't handle the shuffle very well. I have had a relatively peaceful month resting and preparing for all of this. I'm ready - let's do it!
All that fuss in December fearing that I would be booted from the trial over the thyroid cancer treatment, and I am right back at that spot.
The clinical trial in which I am participating has a defined timeline to which every patient must adhere, I can only assume they all do? Must need to have some controls in place in order to properly monitor drug effects on us precious guinea pigs? My first four treatments had to be three weeks apart, +/- three days.
I checked my paperwork yesterday, the next four doses are to be given three months apart, +/- two WEEKS. Sigh of relief: two weeks, I have two weeks to play with to get my pacman treatment in if Endocrinologist approves. Sweet.. I can work with that! I go back to Sunnybrook on Tuesday the 27th for my three-month CT scan anyway, so I could re-book my plans and have my treatment then perhaps? Everything depends on the thyroid stuff, have to plan for the couple weeks of quarantine etc. as well. No problem... I have plenty of time on my hands!?!
If the timing does not work with the Endocrinologist's plan, then that's it for my melanoma treatment, I'm out. :-(
It has crossed my mind that it's too bad I hadn't been able to my pacman treatment last week or the week before, while waiting for the Endocrinologist appointment? Or perhaps the Endocrinologist consult could have been earlier, bump that puppy up a bit being as this issue is time-sensitive?? But I digress....
I am seriously trying to quietly come to grips with the fact that I may have to opt out of this clinical trial. That's bad. But it is a possibility that I can do nothing about. My Oncologist tried to assure me that I have had the most important of the treatments, the first four in rapid succession were the big deal, and the four maintenance doses are really just a bonus, an extra to continue to try to slow the metastases of my melanoma.
Again, I get that, but I would be more comfortable with that suggestion if they could tell me they know they got it. The trouble with this melanoma is that it is the sneaky-sneakerson of the cancer family... one of those silent killers that is intangible; it cannot be measured nor detected or tracked, nor placed into what is commonly known as remission.
SO. There.. short story made into a long one, thanks for listening. All I know right now is that I am going to see my family Dr. on Monday to discuss my list of questions for the Endocrinologist and get my bloodwork results to take to Toronto with me. And Tuesday I will head out to meet the Endocrinologist himself, in the main wing of Sunnybrook, then head over to the Odette Cancer Centre to discuss the whole thing with my Medical Oncologist. I will be home Tuesday evening. And I will have a lot more information at that time.
If you're still with me on this long-winded monologue, I'd like to share a few things I have learned about the trial drug I have been taking. Until now I have kept a pretty tight lid on Google and I have not been permitted - or willing - to independently read up on my situation (in fact, I have a friend specially dedicated to being my personal researcher if something I'm told sounds just too wonky to comprehend - I text my friend and she is expert at looking it up and sugar-coating whatever reply she deems plausible to satisfy my inquiry). Well, since my treatment cancellation call yesterday I have found a bunch of stuff about ipilimumab, highlights include:
- Ipilimumab is a type of immunotherapy known as a monoclonal antibody. A monoclonal antibody is a man-made version of an immune system protein that fits like a lock and key with a certain protein in the body. Ipilimumab is designed to seek out and lock onto CTLA-4, a protein that normally helps keep immune system cells called T cells in check. By blocking the action of CTLA-4, ipilimumab is thought to boost the immune response against melanoma cells in the body. (source)
- Ipilimumab works by stimulating T-cells in the body’s immune system. T-cells help to fight cancer and disease. CTLA-4 is a molecule found on the surface of T-cells and it switches them off. Ipilimumab blocks CTLA-4 so that the T-cells stay switched on and active and can attack the cancer cells. (source)
- Yervoy - Ipilimumab website
- Yervoy - Ipilimumab - Canada: The medicinal ingredient in YERVOY is ipilimumab. What the important nonmedicinal ingredients are: Tris-hydrochloride, sodium chloride, mannitol, diethylene triamine pentaacetic acid (DTPA) and polysorbate 80.
- The cost of the drug itself, the four treatments I have had, are approximately $120,000.00 to date. Holy moly- grateful to be Canadian. Imagine if I lived in the States? The cost of the drug plus the surgeries I have had, CT Scans etc... yikes. Unfathomable.
Just
a small update, Mon. Jan. 19, 2015:
In response to my comments in this post about why couldn't I have had my Pacman treatment sometime in the last two weeks? I was gently reminded today that they wouldn't have allowed me to have my treatment any sooner than today's scheduled infusion, due to my recent thyroid surgery. DUH I guess it slipped my mind that I am still recovering from thyroid surgery, only six weeks out.
Right.. yes, how quickly we forget. Though I don't know how I could forget, it still feels like I am wearing a very tight scarf at all times! Though I am happy to report that my mobility is better and the scar is healing well, with just a bit of lymphedema in the left side of my neck and under my chin. Anyway, just thought I would add that. I was not criticizing or questioning my Oncologist as much as I was berating myself for not having thought of asking her to have my treatment sooner.
This cancer journey is such a balancing act of self-directed participation constantly questioning your care, AND, being patient/listening/doing as you're told/just hoping you don't slip through the cracks.
In response to my comments in this post about why couldn't I have had my Pacman treatment sometime in the last two weeks? I was gently reminded today that they wouldn't have allowed me to have my treatment any sooner than today's scheduled infusion, due to my recent thyroid surgery. DUH I guess it slipped my mind that I am still recovering from thyroid surgery, only six weeks out.
Right.. yes, how quickly we forget. Though I don't know how I could forget, it still feels like I am wearing a very tight scarf at all times! Though I am happy to report that my mobility is better and the scar is healing well, with just a bit of lymphedema in the left side of my neck and under my chin. Anyway, just thought I would add that. I was not criticizing or questioning my Oncologist as much as I was berating myself for not having thought of asking her to have my treatment sooner.
This cancer journey is such a balancing act of self-directed participation constantly questioning your care, AND, being patient/listening/doing as you're told/just hoping you don't slip through the cracks.
