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

KMPonder said:

I am sorry to hear of these
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.

KMPonder said:

Hi Michele,
His October PET
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!

KMPonder said:

Well, please let us know how
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.

KMPonder said:

When I was in school, 90%
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

KMPonder said:

I am sorry to hear that the
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

kleback said:

Wow - it is weird to think
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!!!!