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.

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hiding out of fear

Well I know I’ve been kind of absent from everything, school, family, social media… The fact is I’ve been hiding. Trying to avoid crying or getting angry. For over 2 months now I’ve had some medical issues that when combined are looking like my cancer may have spread. It could be side effects from not having a thyroid and not having my meds regulated still after all this time. But my doctors are concerned, which makes me scared. So I was scheduled to have some very invasive tests done and they begin tomorrow.

I’m not sure why I do this. Just when I need people the most I pull away and hide. I wish I was better at asking for help, I wish I was better at letting people in when things are rough. I’m not good at these things.

Tomorrow I have a bunch of blood drawn so they can start looking at my Thyroglobulin (Tg) again. but the real facts will come after my tests on Monday. It’s not pleasant and I wish I could avoid it but frankly uncomfortable tests last a short time, the discomfort you feel from having cancer is much worse so better to just get it over with. I’ve hated waiting to have the tests done but now at least I’ll have answers.

Again it could be nothing but the feeling I have in my gut is just like the feeling I had in the beginning, right before I was officially diagnosed with cancer.

Sadly as I was looking at the calendar to mark Mondays appointments off I realized something. By the time I am getting the result it will be my 2 year anniversary since the day I was diagnosed. It was June 30th 2009. For some reason once I recognized that date was close last year, I fell into a rough patch of depression. I am scared that I am at the beginning of the same slide right now.

I spent a large part of the day crying today, my crying turned to rage. I know now that I am angry again.

Angry that I have cancer
Angry that not all that long ago I was told there was only a trace amount of cancer showing on my scan.
Angry that it has ruined a lot of parts of my life.
Angry that it nearly destroyed my marriage.
Angry that my treatment is on hold because the drug company fucked up and the drug I need has been on shortage for a very long time.
Angry that my cancer might have spread
Angry that I have to be scared for the rest of my life (even once I am cancer free)
Angry that I have had cancer for almost 2 years when many people with the same cancer are cleared in a much faster time.
Angry that I feel so angry, when I have been blessed with so much in my life.

I am so sick and tired of being scared. I just want my life back. It’s my life!!!!!!!!!!
Is that really so much to ask and pray for?

?

Thyrogen shortage

So after tonnes of digging, I knew I would find something in writing about this shortage. There is nothing to be found on either Genzymes website nor ton the Thyrogen website. I as a patient requiringthis drug find it somewhat shady that this info has to be a dirty little rumour floating around. So you don’t know anything for sure until you go to your pharmacy to fill your script only to be told some genaric info about it not being available. Then what? Treatment is rescheduled? Cancelled?

So I finally got my hands on the info, the letter is addressed to healthcare professionals and was dated in Nov 2010. Causually mentions a the delay will be for a “short period” and advises Dr’s to “consider this when scheduling patients”.

I spoke with a local Thyrogen rep, who told me I will not be able to fill my script until AFTER May when shipments resume. She could not tell me the reson for the shortage. Her carefully scripted answer let me with more questions than answers.

Here is the letter:

What’s your take on the issue?

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Edited on Feb 15 2011 to add this recently found letter with a slight bit more info. Thanks to Thyroid Cancer Canada for posting it