Cancer Drug-Thyrogen in continued shortage

It’s been a while since I updated on the Thyrogen shortage happening in Canada. I am including all the letters so that new readers can see the situation from beginning to the current announcement.

I am now at a point that I will be making an appointment to speak to my Dr’s about allowing me to go “hypo” under close medical observation. Hypo is not a safe option for me because I have a heart condition, however sitting here with cancer still in my body for months and months of doing nothing is (in my opinion) also not a safe option. I stress constantly that the cancer is growing and that I’ll get terminal before Thyrogen is available. Now I know that seems dramatic, and scary, but it’s where my mind goes and I can’t help having these kinds of fears. I just want to move forward in my treatment and at least feel like we’re doing something, anything to keep moving in the right direction.

I am really disgusted that this shortage is continuing this long. Does anyone even care that people like me are sitting here with CANCER doing NOTHING to get better? They need to get their shit together and get this shortage solved. AS it sits now We could be waiting until spring of 2012. If my hunch is correct, we’ll get  ANOTHER shortage letter at that time.

Now for the letters the first is Dated Nov 2010 with the most recent being July 2011. For the current status please skip right to the last letter.

Prayers need to be specific

I got the results today… I did get good the news that I prayed for, but it was topped with bad news.

THE GOOD NEWS: The cancer has not spread to my bones or blood. Thank God. I am relieved about that. this is the best news in terms of progression of the disease.

THE BAD NEWS:  My thyroglobulin level was off the charts. This means I still have too much cancer in my neck and that the cancer is extremely aggressive and resistant to the radiation. Now I start prep’ing for radiation all over again… My schedule is now as follows:

Feb 21st start low iodine diet for 10 days,
March 1st and 2nd two more doses of Thyrogen
March 3rd  Arrive at the Hospital at noon for a small dose of radiation (like super small, just enough for an uptake to help the body scan to be read) 4mci is the dose for this appt (when I was in for radiation it was 200mci) Then I have limited contact with the kids for 2-3 days only.
March 5th Whole body scan to determine how much cancer has been killed since the last scan.

Then I get a small break until:
March 28th start low iodine diet again for 10 days.
April 7th and 8th Thyrogen shots AGAIN (as long as our benefits will cover it it twice in a calendar year) The alternative is I stop taking my meds for 4 weeks to force my body to go hypo. Not nice.
April 9th back into the hospital for 3-4 days for 2nd treatment of radiation.

I just don’t know how to react. I am devastated. I was so sure I was going to get a clean scan and be able to start getting back to our old lives. I am going to going lay down, My head is splitting and the computer has made it worse.

Radiation – Round One

Friday I went in for my RAI (radiation) treatment. Once the Nuclear Medicine came, my family was asked to leave. I was given a pile of garbage bags and some signs that I would use as a makeshift sorting system for discarding waste in a safe manner. She quickly explained to me how to use the system. She explained theat I might feel quite ill, but encouraged me NOT to throw up if I could avoid it. Vomiting would result in a top up dose of radiation. Then I was brought a cast iron pot containing radioactive pills to swallow. My dose was 200mci (relatively high). As soon as I swallowed it they left, sealing me in my room alone for the duration of my isolation. Mostly I felt very ill as I was warned. I tried to sleep through it as much as I could.

My meals consisted of:

Roast Beef slices, a fruit (only apples or bananas)rice cakes, horrible fruity juices, and black coffee.

This was what was brought to me for 3 meals a day for al lthe days I was there. After it was actually brought to me for BREAKFAST of day two I started declining the meal trays with one exception, the fruit. Fruit was the only thing I could stomach and only small bites of them. I now have a huge aversion to roast beef.

My room was like a fishbowl. People were constantly looking in at me to see what my room was on lockdown with radioactivity signs plastered to the window. My view was of the hospitals bleak roof, not a person could be seen from it. That was hard because I am, by nature, a people watcher.

WHile I asked for friends and family to call me to keep me from getting lonely, I didn’t hear from many of the people I expected to hear from and that was disappointing, but the people who did call were willing to spend lots of time talking with me and encouraging me to stay positive.

I watched TV and read a bit, but I lacked the focus to commit to anything that require real attention. In an effort to ensure my release from the hospital ASAP I really stuck with drinking the water and eating the sour candies. Monday morning the Nuc Med team came back and took my readings- finally I was good to go home.

It was a horrible experience and I pray I don’t have to do it again.

My Christmas spirit is still MIA……

Bad news

This week I had a pretty bad blow with some news from my Dr’s. It seems the cancer has spread. They know it is in my lymphatic system on the right side, but a recent ultrasound shows it may also have moved to the left side. They have once again scheduled me for a rush surgery. The surgery is less than 2 weeks away. Aug 28th. THis week I have a pretty invasive biopsy appt. I will be having a bunch of lymph nodes biopsied so the surgeon can have a better idea of what she’s dealing with. I have some blood work being done to see how my body is handling missing a thyroid, and a CT scan to get better images of everything.

I was also scheduled for radiation on Oct 23rd. With the cancer being in my lymph nodes it’s become manadatory that I do it. I will be in the hospital for 4-6 days (depending on how quickly my body can get rid of the radiation- most people are only 4 days). Once I have been discharged I have to stay anywhere but my own home. The slight bit of leftover radiation in my body poses a risk to my kids, mostly my daughter, Ruari as her organs are still developing and the radiation can cause problems.

It will likely be Mid December before they can do a full body scan to see if it has spread elsewhere.

I really thought this would be much easier and much faster but now I understand why cancer is so horrible…

My heart is breaking for my son because he has had a pretty lousy summer and now I will be in the hospital the last weekend before school and his first few days. I can’t believe I will miss this day. I have always been with him on the first day of school to make a special breakfast and drive him to school.

I really hate this…