Blogging in B Minor

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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I am nearing the end of my first cycle of chemotherapy (1 cycle = 1 month). Although this hasn’t been as hard as some people have experienced, it has definitely not been a cakewalk. I have continued to work which of course is important but I have just been really tired and have felt that same flu sort of underlying feeling. I am on the 7-days on / 7-days off cycle so each month is split – I’m on chemotherapy for half of the month.

My dilemma is that during week 1 I really didn’t feel great but it was manageable. Week 2 (which was an “off” week) was not good – this was the week that everything hit me – I had chills and other symptoms that were more reminiscent of a cold. Now I’m in week 3 and I don’t feel that great. It’s really been a struggle this week to get to work and to be “up” when I get home. I want to be there for Aidan, help out with dinner – all of the responsibilities with the routine in the evening and it’s hard when you feel so energy-sapped. I complete the 2nd week “on” tomorrow night so I’m anxious to see how the 4th week will be which will be an off week. If I don’t feel so great. that will be 4 weeks of feeling under par.

What does this mean? I’m not sure just yet because I know the positives associated with the Temodar. I also know that quality of life is extremely important to me and my family. In the other column is the statistics associated with longevity. So the question for me is how long will I maintain the dose before I experience a diminished return. If it’s six months, do you gut it out? Will I adapt to it and will these symptoms lessen? Lots to think about.

For now, I’m focused on getting through the first cycle and then meeting with my medical oncologist and talking over this first cycle, looking at my counts and how I fared and what the strategy is moving forward – the immediate strategy for cycle 2.

We’ll see what happens…

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For some reason I hit a wall yesterday. I’m not sure why but it is eerily reminiscent of the way I felt on several occasions while going through radiation and taking daily chemo. I feel fatigued and have just a general malaise. It’s hard to describe. It feels like you have a flu but not so bad that you have to lie in bed all day? That’s the best way to describe it. Perhaps delayed radiation effects but based on my discussion tonight it’s more chemo-related. This is the tough part – as long as these side-effects are few and far between, I’m okay with them. If they started becoming more consistent, I’d have to start evaluating them in terms of quality of life. What return are we getting from the Temodar – by taking it for six months vs. how it’s impacting my life because for the 2-3 day period this hits me, it’s unpleasant enjoying life is not easy to do. Anyway, it’s not an issue now so I can fortunately table all of that. For now, I’m just pushing through this short period and maintaining life as normally as I can. No calling in sick for this guy!

The UCSF film review will take place tomorrow and although I shouldn’t be anxious about it I do have some anxiety. The last time I spoke with Dr. Berger I was quite surprised – I expected him to concur with the Tumor Board here in Sacramento and of course he had a dissenting opinion and before I knew it I was having brain surgery. I do not think anything like that will be happening tomorrow at all! Surgery as I now know leads to hemiplegia, however, if he sees growth where others have not I have a new ballgame on my hands. I will post results when I have time.

I met with my oncologist today. It was a positive meeting for the most part. We discussed the current course of treatment and future strategy – perhaps adding another chemotherapy drug and taking a cocktail approach. There is a theory that you attack primary brain tumors by throwing a combination of drugs at them to more or less keep them guessing to keep it in simple terms. There are drawbacks in terms of side effects though. One issue is that you trade one evil for another, such as Leukemia. Chemotherapy drugs can result in a secondary cancer in some cases. This may not happen, and if it does may not happen until down the line but it could. What choice does one have really? We talked about the merits of continuing the current course longer than six months. There are studies related to how effective the drug can be after six months.

All in all, it was a good discussion. I will get a CBC at the end of the fourth week and if my blood work looks okay, I will start on my second cycle.

It’s late (yeah, 9:45pm is late for me!) so I’m going to bed. Well, if you have to take chemotherapy pills you just take them and go to sleep as soon as you can! It’s something you adapt to…

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I haven’t written for a few days – it’s been quite busy and I’ve been getting used to this new program. The first few days were a bit trying. The good news for me is that the dose hasn’t resulted in the nausea I was concerned about. I have a lot of what I will describe as tightening in my stomach area – it happens right after I take this drug, almost immediately. That continues all night and into the next day but tends to subside in the afternoon. The more difficult side effect is fatigue and I’ve talked about that before – it’s a very common side effect. Finally, dry mouth – it’s more of a nuisance. I just drink a lot of water for this.

The second item is I have sent my entire case, again, to the UCSF Brain Tumor Center. Dr. Mitchel Berger is the Chair of the UCSF brain tumor program and I have a lot of trust in him in terms of being a strong sounding board. He was instrumental and THE key in my decision to move forward with surgery in June. He will be reviewing my MRI scans from October 1st and comparing them against scans done 6/26, 5/18 and 1/18. He will also take a look at some dictation including the operative report from June 29th. I essentially want to see if he is in agreement with the assessment of the Neuroradiologists here that we have no change in the tumor and it’s stable. Last time we went down this road, we had Neuroradiologists here at the Neuroscience Institute that felt there was insignificant growth and that surgery was not the right call and Dr. Berger strongly disagreed. Dr. Peter Black at Harvard agreed with Dr. Berger. I had surgery. I expect that this will not be a repeat of that situation but I am a huge advocate of 2nd and 3rd opinions so I are going through the same due diligence. Again, you are your own advocate so you have to do these types of things. You cannot just take doctor’s assessment and accept it and move on. Had I done that back in May, I would have just been having an MRI in September and perhaps having surgery now! 5 months would have passed and who knows what could have occurred. I have treated this now so I cannot stress enough that if you are dealing with a brain tumor, please get 2nd and 3rd opinions. It doesn’t matter how good the doctor is – we are all human and doctors make mistakes.

With all of this, I am just remaining positive. I know why I am doing this and I am just sticking with the program. It’s chemotherapy, the side effects are unpleasant but I have to live with them. Most important of all – I have to and want to live and enjoy my life. Therefore, I need to forget about the chemotherapy from the standpoint of negative side effects and how they may effect my life and how I feel. I am accepting and grateful for what this is doing for me, that I can continue to be here and enjoy my life – and through the grace of God I can extend my life long enough so I can avail myself to a cure for this disease. In the meantime, I will enjoy my family and everything that life has to offer. This is the essence of what I am striving for every day. And I’m not perfect. None of us are but I’m enjoying my life as best I can and trying not to be distracted by this tumor. Sometimes it’s hard – just the other day I sat in my son’s room and this trial got to me. I saw one of those picture strips you get done at the fair of he and I – it says “Best Friends” and it’s 6 pictures on a 2″ wide by 6″ long card. We made silly faces in each picture – you know, tongues sticking out and just silly stuff. It got to me. Just thinking about the future. Things like this are hard sometimes. But I am now at a point where I can also look at something like this and realize that we will have so many more times like this to look forward to!

That’s all for now on the treatment front.

Site Search Tags: temodar, chemotherapy, faith, God, brain tumor

Best,

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It’s late so this is going to be very quick. Yet another change in the chemotherapy but this is how it is in the world of brain tumor treatment. I had a final set of research studies reviewed today and consensus is to move forward with a 7-day on, 7-day off, 7-day on, 7-day off program using Temodar to complete one cycle. The dose will be double the dose I was taking during the 6 week therapy post-surgery – 295 milligrams. I will be taking Zofran to control nausea and taking Bactram to prevent pneumocystis which is rare but can be life threatening if it develops. As before, I’ll just go in every Friday for a CBC to make sure my blood work all looks ok. It will be of paramount importance to stick to the diet plan. I have a plan that is documented in the Resource Library that is specifically developed to boost your immune system and fight against these problems plus fight brain tumors.

So, tomorrow night I will start the regimen. I have some trepidation about the dose but I also am keeping in mind that when I was on chemo before I was also undergoing concurrent radiation therapy. I will see how this goes.

That’s it for now…

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Quick post – I talked to my medical oncologist and we are reconsidering our approach with the pulse therapy. I mentioned in my previous post that we were moving forward with Temodar – 5 days on per month and the remainder of each month I would be off the medication. There is some research that has been uncovered that indicates that patient’s survival rates have increased by being on a daily dose of Temodar indefinitely (at least through 6 month checkpoints to see status) as opposed to the current standard of care which is the 5-day pulse therapy. There was a study done in Europe that involved patients with high-grade gliomas. These patients had glioblastoma multiforme tumors. Of these patients, half were given the 5-day pulse therapy and half were given the daily dose. Those given a daily dose instead of the 5-day pulse increased their survival rate two-fold.

The sample was small – it involved only 100 or so patients. However, the results speak for themselves and when you are dealing with what I am dealing with, you will try certain things regardless – within reason. I am in the process of switching things up. The trade-off of course is quality of life but I handled the daily dose ok before. The concern will be long-term. My white cell count may dip pretty low. WBC is what helps your body fight infection. My red cell count may also fall – red blood cells carry oxygen and nutrients to all areas of the body. The other concern is platelets. Platelets help blood to clot. They are found in the blood flowing through your blood vessels. Platelets also line the inside of the blood vessels. When low blood platelet count is present, this layer thins and tiny drops of blood can leak through the spaces made when this layer thins, causing red dots on the skin called petechiae which leads to increase bruising, bleeding from the nose, gums, etc. The gist of all of it is that everything needs to be managed but certainly these are not risks that are reason enough to not do it! Double the survival rate, at least based on this small study? You have to move forward.

I haven’t seen this research before and I’ve dug a lot of holes and searched high and low. This is new and obviously oncologists have access to research banks that we just do not. I’m very grateful I have an oncologist that is on top of this and doesn’t just move forward with the “standard of care” and floats these types of approaches in front of me.

Site Search Tags: glioma, chemotherapy, tumor, onlocology, temodar, gbm

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I have completed radiation treatment 17 of 33 so I am officially more than halfway through this initial course of therapy. Of course the chemo is daily as I have mentioned. Same side effects as I have mentioned but they are getting better. The hair loss is new! Everywhere the beams enter my head (they refer to them as “ports”), I am losing my hair. Right now, the right side of my head, in a patchy spot about 4″x4″ is bald. Oh well! I really don’t care. Throw on a cap and go. The fatigue is getting a bit better as I’m out and walking and keeping as active as I can. Weight-wise I’m maintaining pretty well – staying right around 170# which is the right weight for me. Labs are coming back fine in terms of red blood cell count as well. The primary concern there is that chemo has a tendency to drive that count down. Since red blood cells are what carry oxygen from your lungs to the rest of your body, this can drive your fatigue up much much further if it dips. Mine is looking fine. Much of this I just attribute to nutrition and the supplements I am taking. I will list them here in another post but there are quite a few – Omega 3s, anti-oxidants and some others that are key for brain tumors.

I also received a copy of the results from my 1p/19q gene deletion test – it was really academic. This is just a test that is predictive of how effective certain chemotherapy will be in some cases depending upon how this test comes back – it also can help to confirm the original pathology. In my case, there was a “deletion” of the 1p chromosome but not the 19q chromosome. Current therapy is perfect and it confirms the tumor type identified in pathology – an oligoastrocytoma. If both chromosomes were deleted, the tumor would have to be strongly looked at as an oligoendroglioma which has a much more favorable prognosis. Anyway, as I mentioned it’s academic really and just another data point.

Mom and Keegan are doing well. He’s finally starting to settle down a bit at night. He was doing what all newborns do and had his days and nights mixed up. He still does to some extent but he’s waking up twice now most of the time – around 12:30 and again at 4:30 or so after being fed at 9:30pm so Rach is doing a bit better. He was staying awake until midnight every night, then up every 3 hours, etc. etc.

Rachael and I are continuing to pray every day about all of this and just trying to take things as they come. It is tempting to go far ahead and project, and to some extent you have to be strategic and think about the future but there is a difference between being strategic and dwelling on what is to come. The latter is not a place to be! Aidan is doing well too and has been such a trooper through all of this. With so many changes facing him, he has adapted so well – and kids are so adaptable. It’s amazing. He’s a great little boy with a soft heart – he tries to take care of his little brother when he’s crying by giving him little blankets and his prized possession, a small giraffe he’s had since he was about a year old! It’s pretty cool. Aidan will start at Adventure Christian in about two weeks for a transitional kindergarten class for just this year then it’s off to kindergarten the following year. He has the normal trepidation that most kids do before a new change comes. He was so used to his preschool but as he understood that none of his other friends would be there this year either, he’s becoming more comfortable with everything.

More to come soon. I will be getting all of this out to UCSF when it’s done – the MRI at the end of radiation, their recommended treatment plan, etc. There is still something inside of me that says Dr. Berger can resect this tumor and if he can and I won’t be facing major neuro deficits, I may pull the trigger.

Site Search Tags: radiation, chemotherapy, oligoastrocytoma, brain tumor, aidan, rachael, keegan, UCSF

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Just a quick post and update. I started radiation yesterday and then followed that by chemotherapy last night using the drug temodar. The radiation was fairly uneventful. The cumulative effects of this treatment are not supposed to show effects until week 2 or 3 and then again in weeks 5 and 6. In terms of the chemo, I’m using a drug called Temodar. It’s specifically geared towards an astrocytoma and oligoastrocytoma which are two types of gliomas. The pathology returned from my biopsy from the surgery on the 29th of June was a grade 3 oligoastrocytoma. The most notable side effects of the chemo are fatigue, primarily caused by the dip in red cell count the chemo causes and nausea which is counteracted by using a medication called zofran, an anti-nausea medication. From the radiation standpoint, I am receiving something called IMRT radiation, or Intensity-Modulated Radiation Therapy.

Intensity-Modulated Radiation Therapy (IMRT) is an advanced type of high-precision radiation that is the next generation of 3DCRT.(Galvin et al 2004) Computer-controlled x-ray accelerators distribute precise radiation doses to malignant tumors or specific areas within the tumor. The pattern of radiation delivery is determined using highly-tailored computing applications to perform Optimization (mathematics) and treatment simulation (treatment planning). The radiation dose is consistent with the 3-D shape of the tumor by controlling, or modulating, the radiation beam’s intensity. IMRT also improves the ability to conform the treatment volume to concave tumor shapes, for example when the tumor is wrapped around a vulnerable structure such as the spinal cord or a major organ or blood vessel. In my case, the tumor is straddling the motor strip so the protocol is excellent. The radiation dose intensity is elevated near the gross tumor volume while radiation among the neighboring normal tissue is decreased or avoided completely. The customized radiation dose is intended to maximize tumor dose while simultaneously protecting the surrounding normal tissue. Because of this, IMRT allows for higher radiation doses to be delivered to the tumor while sparing healthy tissue as compared with conventional radiation therapy techniques (2DXRT and 3DCRT). This in turn results in better tumor targeting, less side effects, and improved treatment outcomes than even 3DCRT.

3DCRT is still used extensively for many body sites but the use of IMRT is growing in more complicated body sites such as CNS, head and neck, prostate, breast and lung. Unfortunately, IMRT is limited by its need for additional time from experienced medical personnel. This is because physicians must manually delineate the tumors one CT image at a time through the entire disease site which can take much longer than 3DCRT preparation. Then, medical physicists and dosimetrists must be engaged to create a viable treatment plan. Also, the IMRT technology has only been used commercially since the late 1990’s even at the most advanced cancer centers so radiation oncologists who did not learn it as part of their residency program must find additional sources of education before implementing IMRT. In my case, I have a cutting edge team in the Neuroscience Institute here in Sacramento, a BrainTumor Center, and they not only have the team but also state-of-the-art equipment including these radiation machines as well as a 4-year-old Gamma Knife machine that is one of the best in the world.

The chemo went great last night. I took the pills around 10:30pm which were preceded by the zofran by about 1/2 hour and I went to sleep. I had minor nausea this morning and had a breakfast and all is well. So the next hurdle is to see how the cumulative effects are, if any. It is a good sign how I responded last night so I’m happy about that considering I am taking this every day for 45 days and am having radiation treatment 5 days a week for the 6 week period.

That’s it for now. More to come. Again, I appreciate the support and prayers from all of you. Thank you so much. Rachael and I cannot thank you enough.

Site Search Tags: brain tumor, chemo, chemotherapy, oligoastrocytoma, radiation, side effects

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