Brain Tumor Survivor: Lilliana

Diagnosis: Anaplastic Astrocytoma, 2008

Last Updated: 1/15/2022

Spacer My story begins in September 2008 with, what I refer to as, dizzy spells and a heightened sensitivity to bright lights. Something just didn't feel right. Upon visiting my family doctor, he ordered blood work and for me to wear a holter monitor as he thought it may be my heart. I was 43 years old and other than having low blood pressure, I was in good health. I ate a healthy diet, walked regularly and was not overweight. I didn't smoke nor did I drink excessively.

Spacer Fast forward to October 2nd. I woke up at my usual time, 6:30 a.m., went about my routine, got the kids up, made breakfasts, lunches, etc. feeling fine to this point. At about 8:00 a.m., I felt dizzy again and began banging into door frames and tripping as I walked from the carpet onto the hardwood floors. My daughter, 11 years old, was talking to me and I couldn't understand what she was saying. I didn't know where I was for about 30 seconds. I started to panic and I was sweating. I had to get my daughter to the bus stop and figure out what was going on. I came home from the bus stop shaking and afraid. My left side went all tingly. I thought I was having a stroke.

Spacer I called my husband at work and told him I needed to go to emergency as I thought I was having a stroke. He immediately rushed home and took me to the hospital where I was taken for an ECG right away. They told me I had not had a stroke, there was nothing wrong with my heart and were getting set to send me home, thinking I may just have had a fainting spell. My husband went outside of the hospital to call our family doctor at which point he bumped into our doctor coming out of a different door of the hospital. He came in and spoke with the doctor in Emergency and suggested they do some further tests and take a look at my head. I was sent for a CT scan and not long after, the doctor and nurse came in and dealt us the news. YOU HAVE A 3cm TUMOUR IN YOUR BRAIN. The tumour was located close to the surface in the left parietal region, just above my ear. We were told to go directly and immediately to Trillium Hospital (the regional neurological centre), room 211, climb into the bed and wait for the Neurosurgeon to come and see me. Shocked and dazed, we first went and picked up our children, at high school and elementary school, told them what was happening, had a group cry, dropped them off at home and then went to Trillium. Sure enough, room 211 had clean sheets on the bed and was waiting for me just like I had been told. I had surgery 5 days later on October 7th. The surgeon was able to remove only about 25% of the growth as the tumour mimicked the appearance of the brain and in places he was unable to differentiate between the tumour and healthy brain tissue. While we were obviously distressed by this, the surgeon told us to take heart because in these types of cases, surgery is not the primary determinant of the final outcome. After a week in hospital I was sent home to recover and wait the results of the biopsy. I was ultimately diagnosed with an ANAPLASTIC ASTROCYTOMA Grade 3, and was referred to the Juravinski Cancer Centre in Hamilton Ontario Canada, for further treatment. Especially in the early days, it was sometimes very disheartening, especially as we tried to learn more about this disease. In particular, while the internet can be a tremendous source of information, it can also contain information that may be misleading. One of the scarier things to read about was the statistics, which can seem very grim. I made a conscious decision not to even think about that, and I encourage anyone going through this to do the same, because we are not statistics. Every individual person's situation is unique and I was not going to let statistics lessen my resolve or hope. My initial assessment at the cancer centre was on October 30th. Both my radiation oncologist and the medical oncologist felt that because I was young and strong I could handle the most aggressive treatment as my tumour was now approximately 4.6 cm in size.

Spacer On November 17th I began a treatment regimen of radiation and chemotherapy together. I had radiation treatments Monday to Friday and took a low dose of temozolomide (140mg) 7 days a week. I had a four day break from radiation over Christmas and finished this phase of treatment on January 5th 2009. Overall, I tolerated it very well. Other than losing my hair, the biggest effect I felt was increased fatigue. Also, the steroids I was taking to relieve headaches and pressure in my brain caused bloating and affected my sleep patterns.

Spacer After a four week recovery period, I had an MRI which showed that the tumour had shrunk to 1cm. This result had not been expected as we had been cautioned by our doctors that the first MRI often does not show any improvement. The radiation oncologist had never seen results like this in his 20 years of practice!!! That day I began the next phase of my treatment which consisted of higher dose chemotherapy (temozolomide) for 12 months, on a 5 days on 23 days off cycle. The amount of chemotherapy that is prescribed is determined by body weight. My target was 360 mg, however I was not given that level to start off with. The doctors wanted to gradually work me up to that level so I started on a dose of 270 mg, which I took for the first three months. Other than some nausea and vomiting, I tolerated this dose fairly well and my blood levels stayed within acceptable limits. In April, the dose was raised to 360 mg, and in my case, I felt the change almost immediately. I got very itchy over my entire body, was a lot more nauseous and incredibly tired. Blood tests the following month confirmed that my level of platelets was greatly reduced, so my next cycle of treatment had to be delayed for about three weeks to let my body recover and get my blood levels back up. For May, June and July I was given 270 mg of Temozolomide which I tolerated fairly well, although I still suffered from fatigue and some nausea. I was told that this was completely normal in this stage of the treatment, and given that my blood levels were good, in August my dose was increased to 300 mg. An MRI showed that the tumour continued to shrink and was now only 2 – 3 mm. I remained on 300 mg until my treatment finished in January 2010. I have had no further treatments since then.

Spacer Initially, I had follow-up MRI's every three months which have consistently come back as "clear". These were scaled back to once every 4 months and now once every 6 months. As much as is possible, I am back to living the life I had before my diagnosis. The biggest changes that I have experienced are that I get tired a lot quicker than before, I am still sensitive to loud noises and bright lights, I have difficulty dealing with multiple things going on at the same time, and I have problems with short term memory, which means I have to make notes for everything. This is my "new normal" but I am not complaining.

Spacer One thing I did not mention, which I think is very important is having a positive attitude, and for me personally – the power of faith. I was surrounded by people who kept my spirits up and always encouraged me. Also, these same people and many others, some of whom I didn't even know prayed for me. I never lost my faith in God, and I believe having a positive attitude and always believing and hoping for the best are so important as part of anyone's journey with this illness. I thank God each day for the miracle of healing that I have received.

Update: 2/8/2013

SpacerMRI continues to be "all clear"!

Update: 8/18/2013

SpacerI had another clear MRI scan in May 2013, with the next scan scheduled for November. However, I also had to have hip replacement surgery in March. This was the result of bone degeneration caused by the steroids that I was on during radiation/chemotherapy. The surgery went well and I am on the way to full recovery.

Update: 1/25/2014

Spacer MRI continues to be ALL CLEAR, praise God.

Update: 10/26/2014

Spacer I am well. My last MRI in May, 2014 showed no change and I continue to be "all clear". Thanks be to God.

Update: 2/2/2015

Spacer I had my six-month MRI on November 17th and, the following week, my visit with my Oncologist for the results. I had a clear scan, thanks be to God, and the great news that I don't have to go back for a year as I am now officially clear for 5 years! Yeah!

Update: 10/7/15

Spacer All is well, no changes. It was 7 years last week since my initial diagnosis and I now go for yearly MRI's. My next one will be in November with a visit to the oncologist the following week. God willing it will be a clear scan.

Update: 6/19/16

SpacerEverything is good on my end. My last MRI in November, 2015 showed no changes, so that was fantastic news. I do continue to struggle with my memory and am told that 35 treatments of radiation will do that to you! I also developed Avascular Necrosis in 2013 as a result of the dexamethasone, and had to have a hip replacement. I still have issues and pain with my hip. Don't know if anyone else has had this? All in all, I am blessed to be here and thank God everyday for his blessings.

Update: 3/26/17

Spacer I continue with good health and a positive attitude. I had my yearly MRI in December of 2016 and it continues to be clear....praise God. I am still struggling with my hip that was replaced due to the steroids, so I will be seeing another orthopedic surgeon in the next few months, with a possible reconstructive surgery. But.....I am still here, still watching my children, now 20 & 25, do great things and having fun in retirement with my husband, Roman, traveling and crossing things off the "bucket list". Wishing that all outcomes were as positive. God Bless.

Update: 2/8/18

SpacerI had a bit of a set back last September. As I was preparing to have a hip surgery on the hip that has already been replaced due to Avascular Necrosis from the steroids, I had what we thought was a stroke. Turned out to be a seizure due to scar tissue from the radiation. Since then, I have had two MRIs that are showing a tiny irregularity. I am back to MRIs every three months to monitor and make sure it does not start to grow. I continue to live life to my full potential and thank God everyday for his blessings.

Update: 9/3/18

SpacerIn October, 2018, it will be 10 years since being diagnosed with an AA3. I continue to go yearly for MRI's and they continue to be clear, thanks be to God. I still struggle with my balance and have short term memory loss, but that just means I can watch my favorite movies as if it is the first time! LOL. All in all, I feel extremely blessed to be here 10 years later having seen what this dreadful disease takes from you! God Bless all of you going through this. Keep strong and believe!!

Update: 7/3/2021

Spacer Hello everyone. It has been a trying time, for everyone I'm sure, with COVID-19 and whatever we have to deal with. Since my last update, I have been diagnosed with SMART Syndrome (Stroke-like migraines after radiation therapy), which is what I described in my last update. They are infrequent and debilitating but not life threatening. l am seeing a neurologist to help with the causes and treatment but, as they are infrequent, there is not much I have learned to date. They can strike at any time of the day or night with no warning whatsoever. They totally knock me off my feet. I cannot move and my left side is totally paralyzed. Then I am overcome with a massive migraine headache that hurts so bad it makes me throw up. The symptoms eventually go away after a few hours sometimes days. It is a new syndrome that they have discovered in people that have had maximum radiation and are still living after 10 years! So, not only are we blessed to be alive, but lucky to experience this lovely syndrome.

Spacer When one of these attacks happened during COVID-19, my husband called paramedics. When they arrived, I had a fever and no Tylenol and the only thing we had was robaxacet that has Tylenol in it. I took two and within an hour I was fine again. Coincidence? Since then. I have had three attacks and have taken two robaxacet at the onset and none of the migraines have lasted more than a day! Coincidence? Not sure! I see my neurologist in a week and maybe I'll have more answers. I have balance issues because of the radiation and have not been able to do my walking to strengthen my hip, but I am still kicking and able to do many things. Praise God for small blessings.

Update: 1/15/2022

Spacer Hello to all. Nothing much has changed since my last update. I continue to live my life to the fullest extent possible, and have not had any neurological events linked to my SMART syndrome diagnosis since the summer of 2021. Occasional fatigue, short-term memory issues and some challenges with balance and mobility are what affect me the most on a day to day basis. I am also dealing with some issues with my digestive system which are unrelated to my brain cancer journey; however, given how much worse things could be, I am never going to complain and give thanks to God for each day.


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