Finally!

Yesterday I FINALLY had the cancer treatment that my doctors wanted to give me a year ago! Thankfully, mine is a slow-growing, chronic cancer or I doubt I’d be here to tell the tale.

When my neuroendocrine tumours (NETS) were diagnosed last September, the doctors at the Cross Cancer Institute in Edmonton would have preferred to start me on a radioisotope therapy, known as Lutetium-Octreotate, that they had been using very effectively since 2010. Unfortunately, shortly before that time, the government had cut off funding for that treatment citing a need for more evidence of its safety and effectiveness. That necessitated the setting up of a clinical trial, a very time-consuming process.

Unlike many NETS patients, my tumours were equally receptive to a second, similar treatment, so rather than waiting for Lutetium to become available again, I received injections of mIBG in November and January. It wasn’t long after that that my second cancer was diagnosed and treating it became a higher priority. My NETS was put on the back burner while I underwent surgery and radiation to rid me of the acinic cell carcinoma in my salivary gland. In fact, my neuroendocrine tumours weren’t looked at again until a CT scan was done in late July. Dealing with a second cancer was bad enough but not knowing what was going on with the first one was equally disconcerting.

While all of that was happening, the Lutetium-Octreotate clinical trial was finally approved and as of yesterday, I’m finally a participant. So, what does that mean? I don’t feel like a guinea pig because the treatment isn’t a brand new, untried one. Having heard the success stories from Dr. MacEwan, chair of the Oncology Department at the University of Alberta and head of the Nuclear Medicine Therapy/Neuroendocrine Tumour Clinic at the Cross Cancer Institute, a man who I trust completely, I have no doubt that it is both safe and effective. Simply put, participating in the clinical trial is the only way that I can access the treatment that Dr. MacEwan feels is the best one for me so it’s clearly a no brainer. I will remain in the study for up to seven years and will be followed up for another year after that. Data that’s gathered along the way will be retained for 25 years and will hopefully be used to improve patient care over the long term.

For me, there are several advantages to taking Lutetium instead of mIBG. From Dr. MacEwan’s point of view, the fact that it will probably be less harmful to my bone marrow was the deciding point, but I’m happiest about the difference in the precautions that I have to take after each treatment. They’ll still leave me radioactive but the effect of that radioactivity isn’t as far reaching. I didn’t have to stay shut away in the lead lined room after yesterday’s injection and Richard was allowed to visit me. Instead of being in virtual seclusion for two weeks afterward, now it will only be one week and the restrictions within that week are much less limiting. Following an mIBG treatment, I had to stay at least 10 feet away from Richard for all but 3 hours a day. For those 3 hours we were allowed to be just 3 feet apart! I still have to have my own bedroom and my own bathroom for the next week but we can be 3 feet apart at any time which definitely makes life easier. I’m also more free to mix with other people as long as I keep a bit of distance between us and I’m careful to stay away from pregnant women and children under the age of 12. Though there’s still the need for several blood tests between treatments, there will also be periods of several weeks when I’m not required to have any blood work done. I definitely see a winter holiday in our future!

I was told that I’d be very tired for the first week after each treatment but I really haven’t felt tired today at all. I suspect that that might have something to do with the exciting news that we received following this morning’s post treatment scans. They confirmed what July’s CT scan appeared to show. In the 7 months since my last mIBG treatment, my neuroendocrine tumours have remained absolutely stable. There are no new growths and the existing ones have not grown! In addition to that news, the scans also showed very clearly that the cancer in my face is completely gone. We were already quite sure of that but seeing it on the screen was absolutely wonderful!

Now I think I can FINALLY breathe a sigh of relief and begin to live a somewhat more normal life again. I still have cancer. In fact, without a miracle, I always will have, but I also have high hopes that the year ahead won’t be quite as crazy as the one we’ve just come through!

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11 Comments (+add yours?)

  1. Jan Bergseth
    Sep 10, 2014 @ 21:11:31

    YAY!!!

    Reply

  2. crazyanneca
    Sep 11, 2014 @ 09:55:41

    That is wonderful news. Now it is your “new” way of life – hopefully.
    big hugs.

    Reply

  3. Mell
    Sep 11, 2014 @ 12:57:04

    Great news Elaine, one cancer gone, the other one stable! Just wondering, since it is a clinical trail, will you be definately getting the Lutetium-Octreotate or could it be a placebo?

    Reply

    • edebock
      Sep 11, 2014 @ 13:45:11

      Excellent question, Mell! In this study, all participants will receive the Lutetium-Octreotate. There are two groups: Group A is made up of participants, such as myself, who are receiving this treatment for the first time (primary therapy) while Group B is made up of those who were already on it before the government requested the clinical trial (maintenance therapy). If there had been any doubt as to whether or not I’d receive the medication, I would have refused and continued treatment with mIBG instead.

      Reply

  4. Mrs C
    Sep 15, 2014 @ 05:36:01

    This is definitely a good news! I am really happy to read this Elaine. I pray that you will benefit from this new treatment. Take care and a hug 🙂

    Reply

  5. Isa Folkes
    Sep 24, 2014 @ 11:47:30

    Simply wonderful news Elaine! 😊 Isa

    Reply

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