Another Update
Lyns The Firecracker
by lynsthefirecracker
3y ago
Since I last posted we have received more crappy news… I started the immunotherapy which Dr. Perry seemed so positive about. Steve’s health insurance is covering most of the cost of this very expensive medication. An amazing organization, The Ryan Saturno Patient Amentities Fund, stepped up to help with the rest. The immunotherapy is received through an IV at a private clinic in Cambridge and takes about an hour every two weeks. After 6 rounds of immunotherapy I had an MRI, and we were once again devastated with the results. The treatment was working on the large front tumour and keeping ..read more
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It’s been awhile . . .
Lyns The Firecracker
by lynsthefirecracker
3y ago
It’s been a long time since I last posted but, now an update is needed (long overdue actually). 2016 had been a great year up until two weeks ago… I returned to work and loved it! I gave birth to a beautiful baby girl, 6 weeks ago, Aubrey Things were really looking up, and then I had my regular 3 month check up scan and that all changed. I wasn’t expecting anything to come of it as I was attributing all of my headaches to being pregnant and then not sleeping great since Aubrey’s birth. Unfortunately, that was not the case. The scan showed a significant new growth behind my right eye. It a ..read more
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Great News Today!
Lyns The Firecracker
by lynsthefirecracker
3y ago
Great news today! The tumour is stable and is the exact same as it was 3 months ago (very small). Feeling better than I did three months ago and continue to get stronger and get my energy back. With this good news today I will be returning to work next week as event coordinator. Very excited about these steps forward and some good news for the first time in a few weeks. Thank you all for your love, support, prayers, and positive energy! Xoxo ..read more
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Happy New Year!
Lyns The Firecracker
by lynsthefirecracker
3y ago
Hello All, Hope you had a great Christmas and New Years with friends and family. We have had a very challenging two weeks for those who haven’t heard. While away on a pre-Christmas vacation in Florida, my Nana (Mom’s Mom) was placed in hospice. Steve and I had a great visit with her on Dec 22, however the morning of Dec 23 we got a call that things were not good. The whole family spent the day at hospice and she passed away that evening. Meanwhile, my Dad got a call that his mom was not well, the doctor anticipated that she had a couple days left, however, overnight of December 23-24 she ..read more
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Great Article about my awesome Cancer Centre and a new procedure that might help me one day
Lyns The Firecracker
by lynsthefirecracker
3y ago
Very interesting read. I hope this turns out to be a breakthrough! http://www.theglobeandmail.com/life/health-and-fitness/health/sunnybrook-doctor-first-to-perform-blood-brain-barrier-procedure-using-focused-ultrasound-waves/article27171384/?click=sf_globefb ..read more
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No More Chemo
Lyns The Firecracker
by lynsthefirecracker
3y ago
No more chemo!!!!! My scan today showed continued improvement in the shrinkage of the tumour and Dr. Perry, Steve, and I decided it best to stop chemo. He assured us that the studies have shown that two rounds of PCV chemo have the same long term positive results that three or four rounds do. Most people (90% in the two recent studies) only do two rounds as it is so hard on the blood system (which I was really struggling with). He is also writing an appeal letter to the ministry to get my licence re-instated, as I am 7 months seizure free, and dare I say it…. in stable condition. Thank you all ..read more
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Here we go again!
Lyns The Firecracker
by lynsthefirecracker
3y ago
Well after a very lengthly delay due to dangerous blood levels and a mystery infection I am restarting chemo (the shitty ancient one, not Temodal, which I get through just fine). Not thrilled, but happy that I am healthy enough to do another round. The oncologist has lowered the dose, so hopefully it doesn’t hit me as hard this time and I don’t end up in hospital 3 times (GRRRRRRR). We really wanted to talk to my oncologist about changing treatments but he seems very confident this is the route to go. I will have a MRI after this cycle to see what is going on. Until Monday I will enjoy my deli ..read more
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Another Quick Update
Lyns The Firecracker
by lynsthefirecracker
3y ago
Hey Friends, I have been getting lots of texts and messages asking how I have been doing (which I LOVE and APPRECIATE)! So I wanted to update everyone. I have been going for bloodwork every three days since my blood levels dropped off about two weeks ago. My platelets have recovered to healthy levels, however my white and red blood counts have dropped significantly to “critical” levels. There really isn’t anything they can do at this point… 1) wait till they drop more and I have a transfusion (which I am pretty close to) 2) wait till I get sick and need antibiotics and a transfusion or 3) let ..read more
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A Challenging Week
Lyns The Firecracker
by lynsthefirecracker
3y ago
Hi Friends! Hope you are all having an awesome summer! Ours started out really great, with the amazing news of my tumour shrinking, but this past week things have turned into a bit of a challenge for me. This has been the most physically demanding week since getting sick, and for the first time I actually feel like a “sick” person. I finished my first cycle of this new chemo almost 3 weeks ago and since last week my blood levels have been dropping very quickly. My white and red blood counts are low, but most concerning is my VERY low platelet counts. I have had uncontrollable bleeding and brui ..read more
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In case you haven’t heard already…
Lyns The Firecracker
by lynsthefirecracker
3y ago
I am getting a paper written about me! Never has my doctor seen anyone respond so well to radiation. My tumour went from almost a quarter of my brain to only a few very small clumps in the middle. UNREAL!! I am starting a new type of chemo to try and go after those cells (as they are resistant to Temodal at this point). This chemo will be 4 – 6 week long cycles, also done at home. One downside – can’t drink and can’t eat certain foods on new chemo BUT we can’t let that overshadow the AMAZING news we got yesterday. Thank you all for your support, love, prayers, and encouragement ..read more
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