Blogging in B Minor

I’m definitely back on track now and it’s such a relief. This weekend was the best weekend I have had in over 6 weeks. It was great because I felt more more myself than I have in so long – even while I was going through radiation and chemotherapy concurrently. Of course I had the break in-between the initial treatment of 4 weeks but second to that, I’m feeling good now. I think I’m becoming more acclimated to the Temodar as well. All in all this is moving in a positive direction. I’m doing a few things that I’ll document here that I think are helping:

Chemotherapy

1. In the evening, I eat dinner around 5 or 5:30pm. This allows me to have something else around 7:00pm if I want – a snack, grapes or the like. Yes, I cheat sometimes and have sweets. Sugar is not good for tumors but at the same time, I’m going to live my life and not shackle myself.
2. I don’t eat anything after 7:00pm. This allows 2 hours to elapse prior the the start of chemo. At around 9:00pm, I take Zofran, an anti-nausea medication that is used to combat the primary side effect of Temodar which is nausea. I take it with plenty of water – 8-12oz.
3. After the Zofran has been given 30 minutes to be absorbed, I take the Temodar and I go to bed.

Rest

Rest and pacing myself is important. On the weekends, I try to take at least an hour nap at some point during the day. At this point, as of today, I can do some things although I’m gaining my stamina back from going through this period of radiation side effects. Over this weekend, I ran errands, I went to the mall, I planted plants out in front of the house and did other things which was fine. When I’m working, I backed off a bit after my surgery. Before surgery, I hammered away 10 hours a day, sometimes 11 or 12. I had to pull back on that. Basically, listening to my body. Rest is important.

Diet and Food

This is my challenge. Sticking to the right foods is hard, particularly when I am really hungry. Eating fish all of the time can be, in a word, boring! So, I am trying to find different and interesting ways to cook it. I have also never been a vegetable eater! Not so healthy!! I eat them but not like I should. My physicals always come out great as does my complete blood work but I need to do better in this area. So, if you read the documentation I put together in the Library section of the site here and if you read any book and Cooking for Cancer, vegetables are important.

The main point and what is important is to eat smaller meals throughout the day. Not to eat a big breakfast, big lunch, big dinner. Snack on things and this seems to help me. Smaller portions. It’s harder to do but it helps.

Water

I drink a lot more water than I used to do. Chemotherapy dehydrates you. I have water with me wherever I go. I drink 6-8 12oz glasses a day if not more. I get a dry mouth all the time. What also helps is sugar-free gum. I chew a lot of this – it helps quench your thirst a bit and just helps with this taste you get in your mouth that is tied to chemo – can’t explain it but it helps.

Supplements

Protect Healthy Cells

Remember, chemotherapy kills cells in your body. The goal of course is to kill the cancer cells in your body (brain tumor) but unlike radiation therapy, chemotherapy doesn’t differentiate between “good cells” (healthy) and “bad cells” (cancerous) cells. Therefore, the following list contains supplements to help protect healthy cells

1. Coenzyme Q10 – may protect the heart muscle from toxic drugs such as Temodar.
2. Antioxidant nutrients – Vitamin C, selenium, mix tocopherols and mixed carotenes – as part of an antioxidant supplement to provide protection from the free radicals used to kill cancer cells (friendly fire). These should be taken only after treatment starts, when cancer cells are vulnerable
3. Green tea contains strong antioxidants, and its tannins may prevent matastasis.
   Brew yourself a cup or two every day.

To Prevent or Slow Metastasis

In brain tumor patients, metastasis is not as much of an issue as it is with other types of cancer. The likelihood of a brain tumor metastasizing to another area of the body outside of the central nervous system is quite low. However, it could spread to the spine or another area of the brain. Therefore, these supplements are designed to prevent or slow metastasis based on my research.

1. The oil in fish has EPA and DHA, which decrease cancer cells’ ability to stick to blood vessels when they try to escape. During treatment, get these fats from fish, not supplements. I have used supplements here – mainly flaxseed capsules because I have trouble eating fish all the time. Again, you’ll have to judge for yourself and do what you can do. I’m in the process of moving more fish into my diet using different preparations.
2. Eat plenty of fiber-rich foods to keep blood sugar levels even. This will help to “starve” the glucose‐hungry cancer cells. Again, sugar is a problem. I cheat from time to time – it’s not easy to cut out all sugar from your diet. Try it. Look at the labels on everything. The key here is to try and minimize it. My oncologist told me a story that made me feel better. Two patients. One of them was “good” but lived his/her life – had some foods sometimes that were sweet – cheated here and there as it were. Another patient had a husband that cracked down – NO sugar, ever. She loooooved chocolate but it was not to be found in the house. The patient who is living life and letting go a bit is still here – the other one isn’t. Does this mean anything? I don’t know. But it’s something that I thought about. Does it mean that we go out and pound a Halloween-sized bag of M&Ms?! Well, I never did before! But the answer is obviously a resounding no.
3. Decrease polyunsaturated fats, which can increase inflammation.

This post ended up being longer than I had planned! If you don’t have a brain tumor I lost you a long time ago. For those that do, I hope this is helpful in some way.

Hope those of you in the US enjoyed your Thanksgiving Holiday…and for everyone else, hope that you are well…

Site Search Tags: chemo tips, chemotherapy, brain tumor, brain tumor resources, my story, temodar, nutrition, diet

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After feeling awful for the better part of 5 weeks, I am finally feeling better! On Thursday I was really starting to feel somewhat normal – it was a day after coming off of a week on chemotherapy so I wasn’t sure if it was tied to that or not. Of course, the last week on transitioning into a week off had no effect – I spent that weekend completely out of commission. So, I had a good weekend and actually went out for a nice dinner on Saturday night, food tasted good, I had energy and I’m not sure what to think it’s been so long but I will take it. On Sunday I played soccer in the backyard with Aidan. Saturday he and I went and picked up plants and some other items. Completely different situation…

I really have to believe at this point that this is radiation recall. How I am feeling now is more reminiscent of how I felt before on Temodar while going through the 6 weeks of radiation. I had three occasions while going through radiation that I felt this same bad feeling that I have felt over the past 5 weeks but the episodes only lasted for several days. Therefore the radiation recall theory really makes sense. I start up again on chemotherapy for a week on Thursday night so I will certainly be able to judge a lot more come the following week.

I cannot explain how good it feels to feel normal. To be disinterested in food and even have water taste bad is the most frustrating and awful experience but it comes with this. I didn’t like it but I also had to look at it as best I could positively. I don’t think I would have been able to go past the 8 week mark without moving to a 5-day pulse chemo regimen – but as it turned out that would make no difference. This is also unpredictable. I could have other radiation symptoms return – at 6 months, a year. It’s unpredictable but now I have experienced this and know what to look for.

I’m looking forward to the Thanksgiving Holiday. I’m just going to spend a quiet holiday with family. I have a lot to be thankful for. I’m blessed with many things and as our pastor has said so many times, if you have change in your pocket, a place to live and food on your table you are wealthier than 99% of the world’s population. How we can forget as we are a product of what society has created so often.

At the moment, I’m very thankful I am feeling good and we have some normalcy in life.

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I’m glad the holidays are here and I just finished the first week on in chemo #2 on Wednesday night so last night I slept much better – yesterday I felt better and today I’m feeling pretty good actually. I don’t have to go back on until next Thursday night so I know I will enjoy Thanksgiving dinner! I’m going to see this through to the end of this second cycle. At that point, I’ll see what the next step is based on how I feel. Again, the standard of care is the 5-day pulse. What I am doing by being on a regimen of 7-days on / 7-days off repeated twice monthly is somewhat experimental. There are studies based on small sample sizes that show increased survival rates – the studies out there are based on taking it every day. That just isn’t in the cards for me and that is clear based on my struggles here.   We decided to half-way in between.   Normal survival rates for a Grade 3 Oligoastrocytoma are 3-5 years.  Temodar on a daily regimen based on these studies (small sample sizes < 500 patients) and in GBM patients only resulted in doubling their survival rate – 6-10 years if extrapolated to a Grade 3.  It’s a bit of a stretch because again, the study was focused on Grade 4 GBM patients.  Further digressing, Grade 4 and Grade 3 gliomas are typically treated the same – with malignant therapies.  So we settled in between.  If this isn’t something that will square up with my desired quality of life, we will decide if I need to go to a 5-day pulse after weighing everything out.

I’m still trying to eat as best as I can – I call it more pushing the food in – food hasn’t tasted that great. I’m going out to dinner on Saturday night and I’m hoping that by being off for a few days it will be nice. Haven’t been out to dinner for a few months – have to try it out though. I’m also going to start juicing I think. I was talking to a friend and her son went through cancer treatment and they did a lot of juicing for him – the gist of what she was saying is when you feel as lousy as you can feel while on chemo and you don’t feel like eating, you can juice and drink the equivalent of 2 or 3 apples quite easily whereas you would never accomplish the same by way of eating. Anyway, I appreciated her input and enjoyed catching up with her.

Some comments were deleted from the blog for some reason. Not a big deal but I noticed one I posted recently had an issue. Anyway, if you notice anything off just email me.

That’s it for now…

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This weekend turned out no better than the last unfortunately. This notion of radiation recall is starting to fall to the wayside for me and I’m starting to believe that my condition is really attributed to chemotherapy. I’m now coming up on 5 weeks into this and although I feel like I should just be “gutting it out” and that everything should be going along fine, I am not feeling good and the weekend was not enjoyable. I can’t explain the feelings – food doesn’t taste good, sleep doesn’t help, I don’t feel like going out to places really – it’s a drag. Frankly, I’m tired of people asking me the question “how do you feel today?”. And it’s not because I don’t want them to! I appreciate everyone around me – my wife, my family – but I feel like a broken record at this point because although I had a brief period of feeling ok, I have generally not felt so good.

I’m giving this 7-day on / 7-day off regimen another 3 weeks which will be the blank week starting Thursday and one more week on and week off. If I feel like this through that period, we’re going to switch to a different regimen – probably look at the 5 days per month cycle. That regimen is a much higher dose but it’s for 5 days and you’re done. There are the drawbacks in terms of why I was doing the 7 on/off program with regard to survival rate but people have done the 5-day per month regimen as a standard of care for a long time and frankly, if I feel like this all the time and I need to do this for 6 months, there is no point to it because I am not enjoying my family right now. I know that the drug is important for my overall treatment. However, I’ve got to find a balance.

I’ll post more later but I’m tired and burned on talking about it. It does help to write it down though. I was talking to Rachael last night and there are times still when it is still surreal that you find yourself navigating through all of this. It’s not an avoidance technique at all, but it’s just another circumstance that puts it all in perspective and really shows you that in life, there are problems and struggles and then there are problems and struggles. These things just take time and have to be worked out. Health is something we take for granted I think. I know I did but now when I’m fighting this day in and day out, it’s a lot different. So, I need to strike a balance here and find the right treatment regimen that works for our lives.

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I met with my medical oncologist yesterday afternoon and I was very tired as we met. People have told me they just see this tired look in my eyes and that I don’t look the same. However, both my case manager and oncologist say they did not see the “defeated” look in my eyes. No, they won’t see that. I’m not sure why that was said other than to encourage me through this time. I know this will pass and interestingly enough, this is the first day I am feeling better. And, all of my blood work came back perfect! So, this all points back to this concept of “radiation recall”. Most of what you find online about this doesn’t speak to feeling awful – it speaks to skin irritation but there is something about the chemotherapy setting off the radiation that I received in terms of side effects. It could last for a month, eight weeks – I’m hoping I am at the tail end of it. I will start cycle #2 on Thursday night – tomorrow, so we will see. I am feeling a bit better today, probably the best day I have had in 3 weeks. Is it because I am further out from the last time I took Temodar? Or, is it because this radiation recall is finally subsiding? Only time will tell. I was surprised too that I lost 10# but my interest in food lately has been really low. Things will be just fine – I’m not concerned. We’ve been praying about it and I never forget that the tasks ahead of me are never greater than the power that I have behind me.

I have a few pictures that I am placing out here. Some from Halloween. Aidan, Rachael and I had a good time and Keegan even dressed up – as a red chili pepper! Aidan appreciates that I dress up with him – I feel like a nut but who cares – it’s for him and we enjoy it. There is also a series of pictures here that I took when he and I were up in his fort in the backyard. He was being really goofy so I decided to start snapping pictures and they came out really good.

I hope to start feeling better. I think I’m getting there.

Site Search Tags: chemotherapy, temodar, radiation, Aidan, Keegan

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Well, I am in the exact same place I have been with the added component of one of my medications used to control seizures, topomax, adding some additional fatigue. I’m trying to dig myself out but it’s a battle. I’m seeing my medical oncologist today which is good. I’m sticking with the program – 7 on and 7 off with the Temodar. Rachael and I don’t want to give up on the plan yet. And the alternative is 5-days a month and that’s a 400mg dose per day over the 5 days which isn’t exactly appealing. No matter what you do you have to walk forward.

It’s strange – it just makes you feel like your sinking. I went to bed the other night at 7:30pm and woke up the next morning at 7:00am – and I was still tired. It’s that sort of thing.

We will get it figured out. My goal and prayer is that I will acclimate to this. That some of this is the radiation recall phenomena that I have talked about. Whatever it is, I need to get to the other side. I’m hopeful that today I can get some pointers from my oncologist…

Site Search Tags: temodar, chemotherapy, fatigue, tumor, dose

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