November 7, 2007... it has now been 15 years... my story
I don't know where to start of even how much to tell. So I will just start with my story.
On a beautiful Saturday in Nov 1992 I began to have a very strange "thing" happen to me. For anywhere from 15 to 45 seconds I would not be able to speak. I knew what I wanted to say, I just could not say it. If I tried to speak all that came out was uuuuhhh. I also could not command my right arm to do anything. I worked in a hospital and had enough medical knowledge to know (after I had three of those spells) that something significant was wrong. The short list: I was either having a stroke, a hemorrhage, or had a tumor/cancer.
I was out in the countryside by myself and had to drive about 10 miles back to my mother-in-laws home where my family was gathering for my son's birthday party. I had 5 spells before getting to the house... 2 while driving. I never lost control of the car... I just pulled over and waited for it to pass. When I got to the house, I went and laid down on the bed in the guest bedroom. I did not tell anyone anything was wrong... didn't want to mess up the party. My wife came in and asked if I was alright. I first told her that I was tired (which was the truth). But then I thought better and realized that I did not know what was going on and if things should escalate, someone should know something! So I told her about my spells. She, of course, jumped up and did what any wise person would do... start making plans to take me to the hospital. Before we left, I had two more spells in the presence of my wife and others. That really freaked them out and they REALLY realized something was wrong.
Within one hour of being in the ER, I had an X-Ray, CAT scan, and the doctor had already started me on a Dilantin push. The ER doctor came in with my CAT scan and pointing to a quarter size bright spot said that he suspected that I either had a tumor or cancer. Within one hour of that, my friend who was an oncologist was at my bedside. He said that he suspected an Astrocytoma but would need further studies (MRI, biopsy) to be sure. Within a week, the diagnosis was made: Astrocytoma Grade II.
I went into the biopsy giving the surgeon full permission to take the whole cancer out. However, when he saw the exact areas of the brain affected, he opted for just a biopsy. As he explained it, in order to take out enough to make sure he had clear margins, he would have to take out so much that I would not be able to speak and probably not be able to use my right arm. He recommended trying chemo first with close MRI follow up.
I had 13 months of CCNU/Procarb. At first I also had Vincristine (sp?) but it caused some neuropathy in my feet, so it was discontinued after 6 months. After the 2nd cycle of chemo, the MRI could not detect any living cancer. We gradually decreased the number of MRIs I was having until I was only having one a year. The last MRI I had was in May 2003.
One Monday in June of the year (2005), I awoke having one of my "spells". They were never really diagnosed as seizures. My neurologist always called them "pseudo seizures". I am not sure that is a correct medical diagnosis. I have a spell about every three months or so... and usually because I did not take my medicine... which by then also included Phenobarbital. However, it was highly unusual for me to awake having a spell. I took my AM meds (plus self medicated myself by adding one of my afternoon pills). This did not stop the spells. At first, I was having one per hour. However, as the day went on, the frequency increased to the point that I was having one every 10 minutes.
I live alone with my elderly father who was recovering in a nursing home from a fall. So I drove myself to the ER. Again, within an hour the MRI showed an active area. However, this time it was about 3 inches long, 1 inch wide, and 1 inch deep. My neurologist added Keppra to the meds and I have not had any more partial seizures... the new name for what I am experiencing.
Since I am the only person who has seen all of my MRIs, I could tell before the doctor even said anything that something was wrong... from its location, it was probably a recurrence of the cancer... after almost 13 years disease free! A biopsy revealed that it was a glioma, not an Astrocytoma but an Olegodendroglioma. I don't know what Grade it is yet. Whether it was misdiagnosed or whether it has changed I don't know and it really doesn't matter. They are both gliomas and it was not there two years ago.
The malignancy is in the same area as the first... in the "pre-motor strip." The doctor did a genetics test and found that the cancer is the subtype that has shown greater response to chemo. Currently, I am finishing my first cycle of CCNU/Procarb. On Nov 1 I will have an MRI to see if it is helping any. My surgeon is hoping that the chemo will kill a large section of the cancer. He says that he is really concerned about doing surgery because of the depth of the cancer. Again, he is afraid that I might loose my ability to speak if the chemo does not work.
Well, that is enough for now. I am here to find support and to give support... as much as can be done over the Internet.
Well, my only warning of my glioma was waking up in the hospital with my wife telling me that I had multiple grand mal seizures and that she found me on the floor. They gave me a CT scan and an MRI before I was fully aware of what was going on. The seizures tore me up and my kidneys shut down for a few day. I had surgery for a biopsy Wednesday of the next week. They had to give my body time to recover. I gained about 35 pounds by retaining water and I was having trouble breathing. I actually went home Friday after after the surgery on Wednesday. I was thrilled to be able to move on my right side and still be able to talk. The tumor is on the left.
That was at the end of July 04. I started the CCNU, Procarbozine and Vincristine chemo cycles in September after the neurosurgeon cleared me and my surgical cut was healed together. 15 or so months later, I had my last chemo treatment Thursday the 10th, 05. There were times when I dreaded the insertion of the IV needle every 3rd week. I did start to dispair of having to do this for the rest of my life. It was hard to get an answer from the oncologist about when I could stop. I found one awesome soul by the name of Sharon who found the vein on the first try every time. It's much easier to deal with when you have that trust. I finally got to a point where I could accept my treatments for as long as I needed to. My body was starting to age fast and have problems a 35 year old shouldn't be having yet. Last Thursday, without my prompting was declared my last. I was given a "Purple Heart" certificate signed by the IV staff congratulating me on "graduating". I don't have to pace my beers to one every 6 weeks anymore. I can have one every Friday, now.
The MRI's have shown my tumor to be stable for almost a year, now. Both the neurosurgeon and the oncologist agreed that it was the right time for me to stop. We just need to make sure by way of frequent MRI's initially that my tumor stays stable.
I haven't had any seizures since the one fit that got me sent to the hospital and I have been driving for over a year, now. I still have my job as an engineer. I guess most importantly, I still have my wife. I finally caved and we picked out a dog together. She quickly became part of the family. Walking her is also a good way to exercise.
Greg, I was ?fortunate? with the Vincristine. It caused neuropathy in my toes after about three cycles, so the Oncologist discontinued it.
I guess I'm fortunate that it didn't cause any problems for me that I couldn't handle and was able to stay on it. The real problems didn't start until right before I quit. Even those problems I can live with, but now that I'm off, I'm only seeing mild symptoms. I feel really good and I expect I will only get better.
I get an MRI this Saturday to make sure it's still stable, though I've only been off two weeks more than when my next treatment would have been. I think I'll ask the oncologist tomorrow about that when I see him and see if I can get it rescheduled to later in the month. A slow growing tumor isn't going to show anything in two weeks IMO.
Didn't you just have a surgery? If so, how did it go? You said in this thread that the doctor was concerned about doing surgery, which, from what I've read is ineffective and only buys you time unless you are on one of the chemos that can get past the blood brain barrier. Both of the chemo's you are taking are known to have that ability. If you haven't had surgery and they are considering it, you could get one of those PCV pellets placed near the tumor, which will be on the other side of the barrier. I don't know how the Vincristine on that side would affect you, though.
Well, God speed with the treatments you are currently on and keep in mind that it only seems like they last forever. If you're stable for a long time, you will be able to stop the treatments and enjoy better health again.
Greg, my story is complicated by the fact that you have always remember that I had a Grade II in 1992 tread with no surgery but CCNU and in 2005 a Grade III treated first with one cycle of CCNU followed by surgery and now I am waiting for radiation+chemo.
During surgery (2005), they did have a team ready to place radioactive pellets, but the surgeon made the decision that it would not be needed.
I am over half-way through with my 30 days of radiaton!! So far, so good. I have lost my hair on the left front quadrant and at different spots around my head. But if you knew me, (or even just saw me) you would know that is no biggie for me. My hair was going for a very long time. I keep it very short anyhow.
Yesterday, I had an MRI to check on the progress of my treatment. The doctor was very satisfied. The area of concern has diminished significantly with no signs of edema. That means he can refocus the radiation to target a smaller area… causing less damaging to healthy brain cells.
A funny thing happened to me on my way to radiation. I have an unusual problem in the MRI. My right shoulder begins to hurt. Not just this time... every time. The pain is not insignificant! I can hardely lie still. And the MRI only takes 10+ minutes! So, the anticipation of 30 minutes in radiation was not a welcome thought… especially since my head is clamped down to the table during that time. When I arrived in the treatment area, I informed the nurse of this concern and asked if she had some Advil-type pills. She left to go check and in a few minutes returned with two pills. She told me they were Tylenol (none that I have ever seen!). She told me they were 250mg each and I could take as many as I needed. 500mg total of Tylenol! I take that for a headache! With all the other meds I take, I am not concerned about 500mg of Tylenol further damaging my liver, kidneys, or the lining of my gastrointestinal track. So, I popped those two babies down without hesitation. That was at 10:30am. At 8:00pm I awoke in my own bed, vaguely remembering coming home and having no idea whether it was AM or PM. The pills I had so glibly take WERE TYLANOL 3 (Tylenol with codeine)!!!
But hey, I was feeling no pain. Should I ask for more today?
Glad to hear things are progressing for you! Guess those ty-3's really did the trick huh!? Although you might want to mention it to the nurse that she gave you the strong stuff and not the regular Ty. They usually give tylenol because it's the 'safest', but ty-3 is a different story! Anyway, I'm glad to hear you're on your way to recovery and the tumor has responded to treatment. Hope everything continues well!
Thanks for the update. It is GOOD to hear that the tumor is responding to treatments. Tylenol 3, well it worked for your arm pain, sort of( ha,ha).
Hang in there and keep the good advice coming it is enjoyable to read your posts.
I have finished with my radiation therapy…. yeyyyyyyyyy
But, as you know if you have had radiation therapy before, the radiation continues to do it work. It will be several weeks before the doctors will do another MRI and have any confidence in what they see. This is the slow phase of the radiation.
However, as you have probably noticed, it has given me a lot of free time to be on Cancer Forums
It really has been a long time since I added anything new to my own story although since my last post to this tread I have posted over 800 replies
I continue to have some right arm and hand weakness. My neurologist attributes it to neuropathy and brain damage caused by the surgery and radiation therapy.
I have had many significant losses within the last 9 years: Death of my mother (GBM), loss of my job, divorce, inability to find meaningful employment, recurrence of my cancer, death of my father, and permanent disability. I have more than enough reasons to be depressed. I wish I could say that otherwise my life has returned to "normal." I am having to redefine was "normal" is. I still face times of greater than normal depression about life in general. Sometimes, surviving is all I can do. On other days, I am quite productive and actually feel like I have contributed something... especially to this community.
It always inspires me when I read about your "journey"....yet you are still able to offer love, support, comfort & great advice to others on this forum. You are a "rock" to all of us Jim. Your courage reminds me of the song "WHEN THE GOING GETS TOUGH THE TOUGH GET GOING!" You have such strength & a big, big heart. Bless you Jim.
I think of you often & will keep you in my thoughts & prayers always.
I am going to see my Bro this weekend & am sooo looking forward to it. I will keep you updated after I see him.
Cheers & many thanks & God's blessings, Aussie Angie.
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008 http://cancerforums.net/viewtopic.php?p=19227
Soon after posting my last reply less than 1 hour ago and deleting a bunch of new members who were clearly in violation of our forum policies, I logged out and went to check my regular email. When I turned on MS Outlook, I received a notice that I have an MRI tomorrow. I was sure it was on the 28th but I checked other calendars and sure enough it is tomorrow, or rather today. To say the least, I have the normal pre MRI anxieties... not about the MRI itself... I have had so many of them that I practically go to sleep through the test itself. What gives me anxiety is the "what ifs." What if the cancer has returned? I do have noticeable more difficulty with my right hand. Typing this message is significantly more difficult than it used to be. My life-situation is also drastically different than it was in 2005. My father was alive then and could help me during the post-surgical recovery. He has a lot of friends here that he could call on to help me. I have no local friends. I only have 3 cousins here... I rarely talk to any of them. So I have zip worth of support system, other than you, of course . My first ex-wife is my health-care surrogate (If you knew her, you would understand why I entrust her with my life). She has told me that if it ever came to the point where I am unable to care for myself that she will have to move me back to where she lives... about 4 hours from here and 2 hours from my doctors.
My brain will not slow down and let me sleep. I need to get up in 5 hours. But the "what if" question still runs through my mind. I do know exactly what I will do. I will go to Montgomery, AL to tell my oldest daughter first (and to hold my first grandchild for several hours). Then I will travel to Paducah, KY to tell my son and second daughter.
I am inclined to not do any treatments whenever it recurs... whether tomorrow or ten years from now. Other than the right-sided weakness and having to take anti-seizure medications, I am asymptomatic. So, why risk surgery or radiation damage again? And I know how chemotherapy destroyed one year of my life. Do I really want to spend another year so sick that I would rather die or would I rather spend my asymptomatic life as long as I can and die a peaceful death like my mother did? I don't know and will not make a hasty decision. Certainly, I will consult with my medical team before making any decisions. I do not even know if the cancer has returned. This appointment was scheduled several months ago so it is not something new.
I guess I am writing this for two reasons:
1. To vent my anxiety so that maybe if I write it down I can drop it and go to sleep.
2. To tell all of you who might face the same difficult decisions that you are not alone. This happens every time to me... although usually I have more time to deal with my feelings.
Well, I am back. The MRI was clear of any cancer or other abnormalities. I don't know if that is good news or bad . However, for the foreseeable future anyhow, you are stuck with me My next MRI is next February.
It is late and I just read about your MRI being today. I don't know how long it takes to get an MRI result, but I hope all went well today for you. I hope some anxeity has been relieved for you tonight. I just joined this site a few days ago (mom has GBM) and I wish to send you the caring support that you gave to me on my first day here.
My thoughts and prayers are with you. You are a wonderful person.