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Issues caused by Astrocytoma...anyone else been there?

tommybear
Posts: 112
Joined: Oct 2009

I have been diagnosed with a grade II Astrocytoma in my left temporal lobe since August 2009. I actually had a partial resection and a stereotactic radiosurgery done, no chemotherapy. I have been doing relatively well since then. I work full time and am a single mom.

During the last year, I have been through a few things – headaches, absence seizures once in a while, some numbness on my right side. During September and October, I took steroids because I was having brain swelling that I was told was caused by the radiosurgery – which was terrible! I mean the steroids!

Anyhow, within the last couple of weeks, I have had some issues with a couple of absence seizures, headaches, increased numbness and tingling, but I am also have problems with my vision. I have a couple of floaters in my right eye that have been there for over a week. I also have a problem of getting blurry, funny vision periodically. Sometimes, when I get up and walk to another room, or just move slightly, I can feel my heart beat in my head – around my eyes – and my vision gets funny – kind of blurry or like a tunnel vision or something. It lasts for a few seconds – maybe a few minutes and then goes away for a while.

Has anyone else had these issues? I have called my doctor and will have an mri on Friday just to check everything. Sometimes I feel like I am overreacting to what is going on with me physically, but then I used to never have any problems. I went to my general practitioner and she did a regular check up on me and I am basically healthy other than my brain tumor. Does anyone have an easy time relaxing with issues, or is it better for me to follow up on these things? I get very frustrated with how I feel….

Any response I get is appreciated....

Michele S.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

I am sorry to hear of these new issues. I feel I often repeat myself here, but I hope people are ok with that. My hubby has AAs, although PET in October shows no cancer cells after a year of treatment. He started having vision issues in November. MRI reveals what is most likely radiation necrosis on optic chiasm. It appears they are going to start HBOT on him soon, as his vision seems to be getting a tad worse. He has fields vision loss. He can read and some of the words disappear on the page. Thankfully, he's had no seizures or headaches, but his AAs were on cerebellum and brain stem.

I am glad you are getting an MRI. You are doing the right thing by not waiting. They cannot biopsy the enhancement they see or it would render him blind, but they really feel confident this is necrosis. That is still very serious, but HBOT has shown to improve and ideally reverse symptoms.

Please let us know how you are doing. All the best to you. You are a brave person, and keep up the good fight.

tommybear
Posts: 112
Joined: Oct 2009

Thanks for your comment. I hadn't even thought about the necrosis. And so, I am glad that I am getting the MRI, too. I had never even read about the HBOT, so you have given me something to look into - even if it doesn't pertain to what I have going on at the time, I think it is a good thing for me to be aware of and it is interesting!

So, your husband's tumors are gone? I hope he is feeling well!

Thanks again...and I am sure I will post something about my MRI when I get the results.

Have a good weekend!

Michele S.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Hi Michele,

His October PET was completely cold. That means no cancer cells. After three Avastin treatments, even the scar tissue had shrunk with his December 30th MRI. I love Duke because we go in for an MRI that late morning/early afternoon and have a full report that afternoon by our doc about the findings. I have been spoiled by the fast service, but it does allow us to breathe easier each time.

I never thought of necrosis either, but boy are we worried about it now. Hubby is feeling so good other than the eyes. He is back on Ritalin to give him energy for teaching. Are you aware of Ritalin being good for brain tumor patients? Maybe it's not good for all, but he's tolerated it well.

We've moved our appt with the Neuro Ophthalmologist to next Monday, but the weather is supposed to get snowy/icy here in Atlanta Sunday night. Ugh. We may not make it.

Let me just say that according to a couple of doctors, although we've read other contradictory findings, HBOT being pure oxygen can accelerate tumor growth. Our position is that we do not have tumors anymore :) and that HBOT has shown to do great things for necrosis. It works by developing new blood vessels whereby necrosis has apparently damaged those in that area of tissue. It's why wounds heal quicker in so many patients.

Please let us know your results. Hugs from Georgia!

tommybear
Posts: 112
Joined: Oct 2009

Well, I am not all sure what the results of the MRI were. My oncologist called and did say I had swelling and he wanted me to start taking steroids, but that he was going to discuss the MRI with my previous surgeon. So, the surgeon's office called this morning and said that they want to see me Thursday to discuss "treatment options". So...I am not sure if he is referring to the swelling or the tumor. I have to wait until I talk to him, so I am a bit nervous. Not much I can do right now, but I wish I could relax. Haven't even had to see my surgeon since last year. The oncologist is the one who did the stereotactic radiosurgery and is part of the cancer "team" at the cancer center, so I have just visited him with my check ups in the past year.

Anyhow, how was your husband's appointment yesterday? How is he feeling? Hope things are well and that ya'll are not freezing too much!

Take care...

Michele S.

tommybear
Posts: 112
Joined: Oct 2009

And hugs from Florida! :-)

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Well, please let us know how Thursday goes. We know understand how you feel.

We couldn't make the appointment yesterday due to ice/snow in Atlanta. It's been a mess, although we're aren't too bad south of the city. Schools are still closed tomorrow, though, as they expect it to be 17 tonight and refreeze all the runoff. So, we may not make it to his appt until next Mon. They called us yesterday to say they'd get us in later this week sometime, so we hope to not have to wait until next week. You feel time is critical with these issues, but I realize everything is in God's hand and timing. We trust that, but we still like to jump quickly when we can.

I hope your treatment options are in reference to just swelling, so we'll think positively that you get comforting news.

Where are you in FL and/or being treated? We have a local oncologist, but we go to Duke every two months. That's who did hubby's radiation and initial chemo and handles all protocol for any additional treatments.

Send us some warm winds, please. :)

tommybear
Posts: 112
Joined: Oct 2009

I live in Clewiston, Florida, which is right on Lake Okeechobee - right in the middle of the state - kind of south. Actually, I go to the medical system in Fort Myers, Florida. They have rather large system and now have a medical facility specifically for cancer - Southwest Regional Cancer Center - it is very nice. I know that they have a "team" and have been pretty happy with it so far. I know that a lot of people in Florida go to Tampa and have been told to visit there. So, if anything happens and I am not pleased I might check that out. Can't remember the name of the facility there right now.

It is 44 degrees here! Quite chilly! I bet the temperature goes up to 70 though. Didn't even bring a jacket this morning.

I'm feeling a little more positive this morning. Hope ya'll are doing well....

Michele S.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

I have read from my research on the internet about HBOT and so far I have read that it can treat radionecrosis. There are even 2 websites that I have read that HBOT has a 90% success rate of halting the progress of necrosis, reversing effects of necrosis and treating necrosis. it may not be a 100% but it's a good percentage.

tommybear
Posts: 112
Joined: Oct 2009

I had heard that about the HBOT also, just recently, for the necrosis. So, we'll see what the doctor says - maybe that is what I have going on. The only thing I worry about is that they had not removed all of my tumor, so even if there is necrosis, they may not let me use the HBOT. But, maybe the radiation took care of it all! I hope I shall know something tomorrow!

Thank you - take care!

Michele S.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

When I was in school, 90% was an A, so we'll take it! :)

Atlanta is still so iced in many places that the doctor is still not in today. We may get in tomorrow or Friday, but their schedule is going to be full, and I would have to drive in this. Ick.

All the best for tomorrow, Michele. We'll be waiting to hear some good news from you.

Kim

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

true, at least it gives us all an optimistic rate of treatment success. there's even this person on some cancer survivor site where she said she had necrosis that was treated with HBOT in 2006 and she said the necrosis stopped progressing. :)

tommybear
Posts: 112
Joined: Oct 2009

Well, my appointment was a little iffy. My tumor is larger and my brain is more swollen than it was 3 months ago. I had met with the surgeon who did my original surgery, and will have a PET scan within a couple of days to find out what is going on. He said there is a small chance it is just necrosis - might be able to deal with steroids - or a bigger chance that my tumor has upgraded. It was a 2. So, anyhow, I might have surgery within the next couple of weeks. Won't know for sure until after the PET scan. And if the surgery proves that the tumor is upgraded, then I am sure that I will need to either have radiation or chemo after the surgery.

I have been so fortunate how my symptoms are. My surgeon was surprised that they aren't worse. I have my days, but have been able to function so far. This weekend I need to try to really enjoy my boys and my family. You know, it is a good thing to enjoy your life as much as possible.

Feeling a little scared, but have to hang in there for a bit! I am hoping they call me to have the PET scan done today, but might have to wait until Monday. I am sure that I will be online this weekend - need the support, you know, of this network. Even if I don't always post things.

Hope everyone on here has a good weekend!

Take care...

Michele S.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

I am sorry to hear that the tumor has grown. Getting the PET quickly will let them know more, so I do hope it's asap for you. I am glad you have a strong family support. It's been a blessing for us.

My husband's vision was significantly worse in his right eye, but about the same in his left. They said he has no option but to try the HBOT or he would go blind. I just hope by the time we get it all set up, which won't be until week after next at the earliest, no more damage will occur. He has an MRI tomorrow and his PET next Friday. So, I was hopeful that following Monday we could start with HBOT. We shall see. They are working on all insurance stuff. One doc has had trouble getting it approved in the past, so that makes me a little nervous until I know for sure it's arranged. She said it's "tens of thousands of dollars" if not approved. (As are most costs in healthcare, right?! Gulp!)

Yes, you have to hang in there (smile), but it's understandable to be scared. The rollercoaster of this disease (and its effects) is really tough. I believe God is good, still, and He is here with us to carry us through.

I hope you will have a peace this weekend and fun times with your boys and family.

Kim

tommybear
Posts: 112
Joined: Oct 2009

Just wanted to let whoever is reading this that I will be having surgery on Monday. Went to the surgeon today and they seem to think that my tumor has probably progressed - maybe a higher grade and it is definitely bigger. There is a chance that it is necrotic cells, but the PET scan did show tumor cells. So, here I go! He had said that once he gets the test results after surgery, that I will probably end up with chemo and/or radiation.

I will be really busy this weekend and don't have internet at home, but I am sure that I will be back here at my mom's to be on this network. Need as much support as I can get right now.

Thank you to this entire network for everything...I always read the expressions and various discussion boards and it has all been very good for me!

Will be in touch soon!

Michele S.

Beckymarie
Posts: 358
Joined: Aug 2009

Michele,

Will be thinking of you on Monday and wish you the very best. Sending all the positive thoughts I have your way. Please let us know how you make out.
Becky

kleback
Posts: 4
Joined: Feb 2011

Wow - it is weird to think about all this happening while I was in the hospital and getting surgery done. I felt like it was only me at the time. Michele I hope you are doing well!! I know you are only a few weeks out - and what that feels like. I have Grade 3 Astrocytoma - and have just started radiation and chemo a few days ago. I'm on radiation 5/7 days and Temodar 7 days a week - the radiation I can do (it's a pain, and I'll definitley have a sunburn:); but the chemo I could do without!

I learned alot from your blog :) Again, I hope you are doing well!!!!

tommybear
Posts: 112
Joined: Oct 2009

You are dealing with a bunch! I am feeling ok...dont have a computer at home, so checking this through my phone, but will get online later. Hope today goes ok for you! :o) Michele

tommybear
Posts: 112
Joined: Oct 2009

You are dealing with a bunch! I am feeling ok...dont have a computer at home, so checking this through my phone, but will get online later. Hope today goes ok for you! :o) Michele

Girl2010
Posts: 26
Joined: Jan 2011

My brother has an Anaplastic Astrocytoma grade 3 and he has the same problems...seizures, numbness... all the time. His tumor is still present (it is inoperable) and he has been on chemo and radiation for 3 months. He definetly has the same problems you do though!

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

Those floaters might be caused by the steroids, I've read that steroids can cause vision problems such as cataracts, glaucoma etc. been taking dexa since the last week of november 2010 and since then Im having difficulty seeing in bright lights (veiling glare). My ophthalmologist said that Im starting to develop a cataract from the steroids that I have been taking.

BTW. I've read from your post that you're from florida, you might want to check this site about HBOT and radionecrosis. I think this is a florida-based HBOT facilty since the words "florida oxygen" is written at the bottom, they have their phone number as well

http://www.radiationnecrosistherapy.com/technical/headneck.html#treatment

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