Blogging in B Minor

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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For those of you who may wonder what it is like to undergo radiation treatment, I had the radiation technicians take some photographs for me. For anyone about to go through this – it looks frightening but you get used to it. For others who are curious, the mesh “mask” you see is to keep my head still. It is uncomfortable but you get used to it after using it 5 days a week for so many weeks. It fits firmly to every contour of my face and I cannot make any movements in my face at all once it is on – even if I wanted to smile I couldn’t! When you go through what is called the Radiation Simulation they fit this – it’s a warm wax mask that is more or less “melted” to your face and then carefully contoured.  I’m going to keep the mask when radiation is completed for Halloween to scare all of the children in the neighborhood.  Kidding. 

The large disc you see is part of the linear particle accelerator. Its responsibility in this application is to deliver the radiation to my brain tumor. As you may recall, I am using IMRT radiation which is fairly cutting edge. Of course, I cannot tell you how the radiation experience is for other types of cancers but the same types of machines are used – the orientation of the body is going to be potentially different based on the location of the cancer, etc.

All in all I am doing well – I’m feeling much more up lately and my energy level is good. At this point I think I am much more acclimated to the radiation and the chemo than I have been through the entire process. Side effects are minimal. I thank God for all of this. I will be heading to work next Tuesday for the first time since surgery and am looking forward to it. I will put it the time I can but plan to work every day. Here are the pictures:

Site Search Tags: brain tumor, radiation, imrt, side effects, surgery

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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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