Blogging in B Minor

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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I wanted to take a minute and post some information related to some books I’ve picked up over the past months that have really been invaluble to me in researching my condition. I did a lot of research in picking and choosing the books I wanted to dedicate time towards and these have been excellent. For those that are visiting my site for purposes of gaining knowledge regarding brain tumors, I hope you’ll find this information helpful. The first book listed by Dr. Peter Black is outstanding. Dr. Black is one of the Neurosurgeons that reviewed my film as a second opinion and he was right on the mark in telling me that I should proceed with surgery. This led to the diagnosis of a grade 3 oligoastrocytoma when others had thought I had a low grade glioma.

• Living With A Brain Tumor: Dr. Peter Black’s Guide to Taking Control of Your Treatment by Dr. Peter Black – Dr. Peter Black is a renowned neurosurgeon. As the Chair of the Harvard Medical School of Neurosurgery and several Boston area hospitals, he has credentials that speak for themselves. I was fortunate enough to have him personally review my case and films. His book is invaluable and I would highly recommend it to anyone diagnosed with a primary brain tumor.
• Brain Tumors: Leaving the Garden of Eden–A Survival Guide to Diagnosis, Learning the Basics, Getting Organized, and Finding Your Medical Team by Paul M. Zeltzer – This book is invaluble. It provides you with information that is relevant but for those that are not as organized as most, it will equip you with techniques to organize your case, allowing you to be more effective in managing your care and being your own advocate which is essential.
• Brain Tumors – Finding the Ark by Paul M. Zeltzer (Companion to the above the above book) – you need to obtain this book that is the companion to the above book. It is a continuation and provides more detail.
• Coping With Chemotherapy and Radiation Therapy by Daniel Cukier – a good primer regarding the topic at hand.
• Surviving “Terminal” Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won’t Tell You About by Ben Williams – Don’t let the “name” of this book frighten you. You don’t have to have a “terminal” diagnosis to benefit from this. Ben Williams is a GBM survivor of 15 years – a dx that typically only affords a 1-2 survival rate. He has an amazing story and this book outlines what he did. His story is amazing and the techniques he used are a reminder to all of us that anything is possible.
• Navigating Through a Strange Land – A Book For Brain Tumor Patients by Tricia Roloff. This is a book of testimonitals from patients, caregivers and doctors. For me, it helped identify the feelings I was going through.

If anyone who is reading this has other recommendations in terms of reading materials I would love to hear from you. I would also be happy to add them to this post in addition to obtaining them myself. I am a big researcher – knowledge is power so please contact me.

Site Search Tags:  brain tumor, oligoastrocytoma, chemotherapy, radiation, cancer, gbm, oncologist, glioma

Regards,

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Keegan is doing really good. He had a bit of an issue with jaundice for several days that we were monitoring closely but that seems to be ok at this point. We took him to the doctor just to have him checked out. Everything looks great but he had us go to the lab on Wednesday for the counts – they came back a little high so we went back again yesterday and they are stable so all is well.

Rachael is doing ok – she’s starting to get a bit of her strength back and just getting used to the new schedule. Even though we have done this before, it’s been almost five years! So, it’s kind of new again. It’s a little bit more complicated this time around too because of my condition. My seizures are subsiding, mainly because I’m getting rest and Rachael has agreed that since she needs to be up anyway to feed Keegan that I may as well sleep. How nice is that? I have to say though, I had seizures each day (small focal seizures, totally manageable) but the first night I had I slept for 6 hours or so I didn’t have one the following day. We both agreed this is worth it and I’m also trying to prepare myself for the chemo and radiation so we are making sacrafices. She is being so supportive. To compensate for what she is enduring at night, during the day I’m taking care of all the meals and handling his needs so she can sleep. On the 30th I start chemo and radiation which is really why I’m off work in addition to the surgery I had on the 29th of June anyway so we’ll see how that impacts things but all in all we are walking through it all and have a lot of support. More to come and I’ll be posting more pictures when I can.

Brain Tumor Treatment

I’ve been doing a lot of research on treatment options and have uncovered some interesting information. Of course I’m not ready to be as bold as some people have and completely buck the medical science world and forego radiation and chemotherapy – that would be foolish in my view but some people have actually done this. However, there are some natural therapies that seem to be very promising. In particular, a doctor named Dr. Johanna Budwig from Germany made some very important discoveries related to the use of flaxseed oil.

Dr. Budwig found that the blood of seriously ill cancer patients was deficient in certain important essential ingredients which included substances called phosphatides and lipoproteins, while the blood of a healthy person always contains sufficient quantities of these essential ingredients.

She found that when these natural ingredients where replaced over approximately a three month period, tumors gradually receded, weakness and anemia disappeared and life energy was restored. Symptoms of cancer, liver dysfunction and diabetes were alleviated. Dr. Budwig then discovered an all natural way for people to replace those essential ingredients their bodies so desperately needed in their daily diet. By simply eating a combination of just two natural and delicious foods not only can cancer be prevented but in case after case it was actually cured. (These two natural foods, organic flax seed oil & cottage cheese) must be eaten together to be effective since one triggers the properties of the other to be released.)

In doing more research, I found a site http://www.flaxoflife.com/ that contains the amazing story of Tom Rolland, a man who was diagnosed with a GBM and utilized this method along with some other supplements to great success. His regimen is something I am going to apply to my treatment plan and has been covered in a book I am reading that covers a range of alternative treatments, some that originate in the world of medical science and some that do not.

The point to all of this is that you have to attack this from all angles. You can’t just sit back and rely on the oncologists to prescribe radiation and chemotherapy, accept that as your treatment and hope it all works out for the best. I have a binder full of material, it’s all assembled and I’m putting my own treatment plan together. This is but one small component but I wanted to place a post online about it because it’s received so much notoriety it’s worth mentioning.

I will be starting chemo and radiation on the 30th. I’m not sure what to expect – I do have ideas but everyone is different so although I have read up I’m trying not to read “too” much into this. Some people say it’s awful, others breeze through it. I won’t know until I do it and I’m in it. I have a strategy diet-wise and have prepared myself psychologically, just as I did for the surgery, as best that I can so at this point it’s just as it has been with everything else I have had to do since this has all started – walk through it. This has all been a test of endurance but as I go through each phase of this, I get stronger and it actually does get easier to deal with. When you think about it, after being told that you have a tumor, going through months of scans, told you have to have brain biopsy, then getting these harsh second/third opinions, facing surgery with neuro deficits, having a diagnosis of brain cancer, etc. etc, there is really not much that can bother me! You could tell me just about anything and just about anything could happen in my life and it wouldn’t phase me much. Flat tire on the car? Garage catches on fire? Oh well – there are ways to take of these things. Seriously – I have to say that this has all changed my perspective and there is a part of me that does wish I could have had this perspective on life long ago but I guess we just aren’t built this way. I’ve always had gratitude and have been grateful for the blessings in my life but I just don’t think we are fully capable of realizing how fragile our lives are until we are faced with something like this. Maybe it’s just me.

More to come.

Site Search Tags: keegan, brain tumor, oligoastrocytoma, cancer, chemotherapy, radiation, brain cancer

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Only have a few minutes but wanted to post a few pictures that I’ve taken over the past couple of days of Keegan. Aidan is very excited about being a big brother. Anyway, we’re doing good just trying to get Rachael’s energy back. She will be coming home Monday or Tuesday – just depends on how she’s doing. Keegan is doing well.

Site Search Tags: keegan, personal, pictures, picture, baby, Rachael, Aidan

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What a night! I have no time to write this but I have great news. Our son was born this morning at 9:45am via emergency c-section and weighed in at 6 pounds, 7 ounces – he’s a month early! Mother and baby are doing well. Rachael woke up at midnight with another bleed – the second in 3 weeks or so. She’s been on bedrest as you may know if you’ve been following things here. It’s been quite a crazy ride here between her and I. I’ve talked about how the timing of my brain tumor treatment / surgery and the birth of our son have been in lockstep. Well, at least we have one out of the way now!

I ran her over to the Sutter Roseville Hospital last night at 1am or so. She was stable but had a second bleed at 5am and that was the end of the line – time to intervene so the team was assembled and they took the baby. We have a final list of names but as of now we haven’t named him! We thought we had more time! As I said, he weighed in at 6 lbs 7 oz which is really great considering he’s technically 1 month early. So far, it doesn’t look like there will be a neonatal situation to deal with. He had a bit of trouble with some breathing, some blood sugar issues but he is doing great. Mom is doing well other than dealing with the pain issues.

Here are two pics I can share. Thank you all for your prayers and support. This will give us at least some normalcy. Having Rachael delivered, off of bedrest and us on a road with our new son is something that although hard at first as anyone with kids knows, will only get better. Our son Aidan is thrilled!

Again, we thank everyone for your help and support as we have moved towards this day. Rachael being on bedrest coupled with my surgery and issues has made this time challenging. One challenge is now winding down.

Site Search Tags: keegan, c-section, rachael, aidan, bedrest

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Just an update on the personal front. The River of Faith album is out there as you know – thanks to those of you who have purchased copies – I’m glad I can share my music with you. It really means a lot to me – I hope you are enjoying the music and the genesis of the songwriting.

As you know this blog has transformed itself into a personal update forum for the foreseeable future! Frankly, it’s actually working out quite well in this capacity so I appreciate everyone who has been using this as a means to obtain the information. It saves a lot of time given everything that is going on.

Again, we cannot thank everyone enough out there for the prayers and support! We are hanging in there. Things are challenging of course but we are inspired by everyone’s thoughts and prayers, the support we are receiving and everything we are pursuing in our strategy. Rachael is doing well and getting rest. It’s a foregone conclusion now that our son will be delivered via scheduled c-section. This will be scheduled for the week of July 22nd most likely.

As for me, I have had complications in the way of focal seizures. It’s something that occurs in 1 of 3 brain tumor patients and is either a complication of surgery or could be something else as a result of the tumor itself. Time will tell. A seizure is something that should be defined because many people have only one vision in their minds. A seizure can be as mild as a marching “numbness” in your hand or wrist to something as strong as loss of muscle control and all feeling/motor function on a side of your body. Last Wednesday I had an issue with my left shoulder – I couldn’t straighten my arm out to my side and then my shoulder started becoming irritated for lack of a better term. The short of it is my entire left arm and left leg became involved and I lost control of motor function – the most frustrating thing EVER!! Mine are referred to as simple partial seizures.

I knew going into this what I could be dealing with in terms of neurological deficits, complications and potential issues. We had the doctor on the phone and tried to deal with it medicinally but after awhile but had to go to the hospital. There they could IV something called Ativan that calms everything down right away. Since then, I’ve had 2-3 “breakthrough” seizures every day – talk about frustrating. These, however, are nothing like the incident on Wednesday. My shoulder will become irritated, I will relax myself and within 30 seconds or so it will resolve. Call it learning to deal with it! I have to say though it is frustrating and it’s getting me down. I have a great Neurologist who is working with me on the Rx’s necessary to manage it. The theory is brain swelling from surgery causes it and I’m currently tapering off of steroid medication that controls brain swelling, which is important to do as well. Kind of a catch 22.

The other bit of news is I had an appointment with my Radiation Oncologist today. You know, all of it is surreal at times. Sitting in a Radiation Oncologist’s office was, well, odd. No, it’s not like a feeling of I don’t deserve this or anything like that. It’s just a feeling of how did I get here? And how sobering it is that I am sitting here and sizing up what I have to navigate. Neurologists, surgeons, oncologists, radiation specialists, chemotherapists, neuro-pathologists……and you have to know about each of these specialists, what they do, what they know about you, how they can help you, how to HELP them help you and how to arm yourself with questions and research that allow you to be an advocate for yourself. SIGH.

Anyway, this appointment was like most of them. I have never met with a radiation oncologist. He was excellent, as are all of the doctors at the Neuroscience Institute here in Sacramento. We talked about my case and I found that the final pathology is a mixed glioma – the tumor consists of both astrocyte cells and oligo cells and is called an Oligoastrocytoma and has been graded as a grade 3 in my case. It’s a malignant tumor. Aside from that, we will move forward with partial brain radiation therapy at a high dose called 60GY – this is considered both a curative and adjuvant dose. In conjuction with this, I will have a chemotherapy called Temodar which was originally found to be very effective against grade 4 GBMs but has more recently proven to be effective against this type of Grade 3 tumor and variations including mixed gliomas. This will be administered concurrently with the radiation. The goal of course is to stop growth altogether, shrink it and ultimately eliminate it along with radiation. It has happened although realistically we are praying for control and management. The meeting was good – any neurological deficits resulting from radiation that I was worried about are not a concern – we can treat this.

It’s late but we’re marching on. I won’t lie – this is hard. Really hard. Our days are filled with ups and downs. Trying to juggle this, planning for the arrival of our son, keeping our soon to be 5-year-old son Aidan active and filled up – not to mention insulating him from a lot of this, controlling the revolving door of supportive family and friends and just this crazy life we have been thrown into is not something we can keep pace with but we don’t have a choice. And frankly, much of this is what we need but it’s a lot to handle.

God is at the wheel – that’s all I can say.

Site Search Tags: brain tumor, chemotherapy, glioma, oligoastrocytoma, pathology, seizure, temodar

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I wanted to post an update here even though I don’t have a lot of energy. It’s the easiest way to keep everyone up to speed instead of repeating everything over and over. I would like to thank everyone for your thoughts and prayers. It is so much appreciated. Your comments left here on my blog to posts such as this one have meant so much to me and my wife. They are uplifting and just add that much more to this situation in terms of inspiration and hope. I just want you to know that.

First off, aside from some weakness on the left side of my body, mostly in my left hand/arm, combined with headaches and some common side effects of this type of brain surgery I am doing well. Cognitively I feel on par.

Details: The intraoperative brain mapping showed that the tumor was fully involved in the primary motor cortex – not what we had believed entering the day. We had believed the secondary cortex was involved and if so, tumor resection to some extent would be possible with some deficits occurring, albeit potentially temporary. However, resecting any of this out of the M1 area (primary motor cortex – which controls all of your motor skills – left brain to right side of your body and vice versa) would result in a total, permanent deficit such as hemiplegia and we had an agreement prior to the operation that we wouldn’t play that card yet so early in the process. Therefore, we didn’t resect and that is of course disappointing because tumor resection is your first line of defense. But, you have to move on to the solution and not get mired in the problem!

On the positive, my Neurosurgical team, who did just an absolutely amazing job, spent the 4-5 hours getting there and having wide access to the area for more than that reason (resection). We were able to obtain three very good biopsy tissue samples – samples you wouldn’t obtain through standard biopsy procedures using a “burr hole” into the skull. The reason this is important is if you obtain a biopsy and have one sample and grade it, you “hope” that those cells are representative of the entire cell type makeup of the tumor. You see, you have to grade a tumor based on the highest grade cells you find. You could have cells that are grade 1, 2 and 3. You may only find one grade 3 cell, but if you do, the entire tumor has be graded as a 3. You have a much better opportunity to accurately grade the tumor by having 3 excellent samples, as we did in my case, then you do if you use the burr hole method. Ok, enough of an explanation!

Preliminarily, all of the biopsy results have come back showing this to be an anaplastic astrocytoma which is a grade III astrocytoma (a type of glioma). It’s more malignant in nature than a grade II which is considered “atypical”. Regardless of the pathological disposition, they are all treated with malignant therapies. I am now going to be heavily focused on Temedor and a package Chemotherapy called PCV that has shown amazing results in patients with this specific tumor, an anaplastic astrocytoma. Needless to say I am extremely disappointed. I will not be dwelling on it but the fact is, once it is confirmed through extensive pathology later this week, it’s grade 3 brain cancer and because we cannot resect the tumor – or we won’t at this point in time given the deficits (but that may be a decision later), I am going to have to keep it under control through other means. No, I don’t want to focus on stats and prognosis but you have to wade into that and I am starting to get into that because I have an important clinic on Thursday to discuss treatment options and like everything else, including my 2nd and 3rd opinions that drove our decision to get surgery done, I must continue driving for answers and solutions although a cure is not something that is going to be possible.

I’m having quite a lot in the way of headaches, tracking meds for post op brain swelling and pain relief, etc. but in my spare time, for 15 mins at a time or so, I’m pulling together info for a meeting I will be having at the end of the week with the entire case team at the Neuroscience Institute. These next two weeks are critical – strategy will be set and things will be set into motion and they must be right.

Rachael, Aidan and I really appreciate all of the thoughts and prayers during this time. Everyone around us has been absolutely amazing. Aidan was a little taken aback by the incision on my head when I first came home but I told him it would fade and I haven’t been allowed to shower – and somehow I convinced him it’s kind of “cool”. LOL! Rachael is doing well and that is also next on the calendar! She will be delivering, probably via c-sect as it turns out, the last week of July so I’m hopeful in gaining strength back to at least help a bit but with Chemo and so forth it’s going to be hard for a while. However, God has sent an army of supporters our way and we are so blessed.

More to come….

Site Search Tags: surgery, God, anaplastic, astrocytoma, brain tumor, chemotherapy, chemo, hemiplegia, pcv, primary motor cortex

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