Next Steps & Enjoying Life
My Story February 9th, 2008
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In discussing my scans with my oncologist, there were no revelations of course. However, I did get into a lengthy discussion about the 6-month decision point. I also talked with her about my fatigue and we discussed some options. At the 6-month mark, I will likely stick with Temodar for another 6 months. At one year, I would come off of chemotherapy altogether and then just watch it and see what happens. This is all assuming there is no growth detected and that I continue to be asymptomatic. If there is growth, then other options would be brought to bear. After a year of Temodar, the effectiveness of the drug is really called into question when balanced against the effects it has on one’s body. There are people that are on there 20th, 25th or even 30 some odd cycle of Temodar but my oncologist really believes this is far beyond the drug’s ability to be effective.
In terms of fatigue, she suggested I could try the 5-day a month chemo – it does fly in the face of what I’ve been doing in terms of studies that have shown increased survival rates when taking the drug every day (I opted every other week due to my lifestyle and families’ needs) but nonetheless, it was placed on the table. There is also a regimen of 21 days on – she said most don’t even realize you are on it. I can try both but I’m in a routine and am not sure I want to. The 21 day is definitely not something I want to do. The 5 day increases the dose from 295mg to 400mg – not sure how that would be. Fellow survivors that I know who are on that regimen have varied success – some are just fine with it, some have some issues with stomach aches/tightness and others have very bad nausea. I have done fine with Temodar so I may be ok but I might stick it out.
Today was a good day – we packed a picnic and went to the park. Keegan was happy on the blanket and Aidan enjoyed himself. For Rachael and I it was good to get out and enjoy some time – the weather here is unseasonably warm – in the high 60s so that makes it perfect for an outing like this. Seeing Aidan grow is amazing. He has no fear. He’s going down steep hills on his Razor and picks up such high speeds that it makes me nervous! He starts wobbling and correcting his steering and I’m just ready for a major wreck but he pulls it off every time. He’s fallen but he always gets up and dusts off his pants and keeps going
It was a good day.
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Hi Mark,
I also just hit my six months anniversary and seem to have stable disease also. I was diagnosed August 23rd with 8-10 metasized tumors in my brain from a freaky lung tumor that was undiagnosed even though I had seen a pulmonologist every month for the previous 6 months.
I am grateful for getting to the “stable disease” designation (after Stage 4 brain cancer) after radiation on the brain and lung, chemotherapy, a crainotomy to remove the largest tumor and two cyberknife (concentrated gamma rays) procedures.
Unlike you, I didn’t fare too well with chemotherapy – I got blood clots and couldn’t walk and was weak as a kitten and had to use a wheelchair to get around my house. Getting to the bedside commode with help was an accomplishment. Now I go into work 3 afternoons a week and can make it on my own power around the grocery store. I’m glad that you are working and seeing your business increase.
I too am trying to appreciate every day – I’ve got a great husband and we’ve got a middle and a high schooler with soccer and pom practice so we are coming and going and couldn’t possibly go on a picnic to the beach – but it sounds like your attitude is great and you are enjoying your family and have a positive outlook. I also have a very positive outlook and have a tremendous support network with my friends. I don’t normally surf the internet about the cancer – but I was curious about living in the “stable disease” stage and your site popped up. Congratulations and here’s hoping for a victory celebration for each of us. Cindy
Cindy,
Your story is an inspiration to anyone walking this journey. Thank you for sharing some of it here. I applaud you for your perseverance and strength in what has been a difficult battle for you. I know that having that support system around you is so vital and it’s wonderful you have that. There is absolutely no replacement for what that provides as you well know. Getting back to work in the afternoons – that is GREAT.
I wish you continued success and stable MRIs.
Best regards,
Mark