Anaplastic astrocytoma grade 3 wild type

I can tell you more of my experience when I'm on an actual computer. Mri's, chemo, radiation, and everything in betweeN. It's scary and I know that I'm looking back from 11 years But I was scared. Dr appointments after Dr appointments. Im not a Dr but I have my experiencEs. The emotional part is the toughes.

My mom was diagnosed the Anaplastic Astrocytoma grade 3 just a little over a year ago. The only difference is that my mom's was located wholy in the left parietal lobe and could mostly be removed. Some notes from her experience:

Radiation is easy to start out with but gets tougher the longer you have it. Those that seem to do the best are those that are in shape physically. Many of those I met who weren't in great shape disappeared after about week 2 to their rooms and were rarely seen. Those that were in shape seemed to do better. My mom was in excellent shape when diagnose at age 59. Still by the end of radiation, she was worn down and it took probably a good month afterwards to fully recover.  She did not lose any physical functions as a result of radiation but did loose quite a bit of her hair and had very sensitive skin/radiation burns on her head. It has affected her mentally though it is slight and probably only immediate family can tell. She gets a touch more confused at times when she is very tired or very stressed. She also gets a bit more aggressive at times, again only when tired or very stressed. Its tough to realize that those brain cells killed by the cancer or radiation are gone and aren't coming back but sometimes they can be rewired with time and healing.

My mom has now completed about eight months of the planned 12 months of chemo (Temador). It is much easier to deal with than the radiation. She does get ill feeling by the end of the week but recovers fully after a day or two. The only major complaint is that she get nauseated pretty easily if she eats within 4 hours of taking the chemo pill so she has to eat pretty early during those weeks if she doesn't want to stay up late. People are pretty understanding of that when told though.

My mom still gets MRI's done every two months and thus far a year after the removal, the tumor hasn't grown in size and the cavity where it was continues to shrink. Much of the research done says that longevity estimates even five years ago are woefully out of date. Because of the type, the cancer will never leave but in the case of my mom, she still has great quality of life and we have spent this last year and years to come filling her bucket list. It has also brought us much closer as a family.

I had an AA grade 3 25 years ago which was treated by surgery, radiation and chemo, BCNU, and enormous support from family, friends and strangers. I have never stoppped meditating to keep as calm as possible (not without some failure) . I lost some peripheral vision in the right eye because of where the apricot sized tumor grew due to which I do not drive.  In the last few years I have had some Parkinsonism with quite poor balance the worst sympton, making walking for more than 150 yards wtihout someone attending me present limit for which I coniue. Otherwise, I'd falli so I won't try untill my physical. I still have physical theraply twice a month. My wife and I will celebrate our 45th wedding anniversary next  month and i was able to walk both our sons up the wedding aisle. I know that I have been one  of the luckiest people in the world and feel  enormously gratitude when I think about my journey which fortunately is seldom on my mind. Good luck!!

I'm 32 yrs old female and I'm new to this site and just learned today that I have an aggressive form of Anaplastic Astrocytoma wild type. I registered today to also find inspirational stories about long term survivors and to connect with people who are going through the same thing. Here is my story and I am by no means an expert on this but I would like to give some input on my experience and helpful things I found so far:

I found out in Aug 2017 when I was admitted to the hospital after having a seizure. They found a 6x6 in the left temporal lobe.

My surgeon entered in through the left temple of my eye and he was able to remove ~85% of the tumor without causing any paralysis to my right side, memory lost was minimal, my speech was normal, strength was weak at first but I managed, did not experience any headaches. The left side of my face was swollen for 6 weeks, and the left temple area is still numb. My jaw is tight and I am not able to open my mouth fully to eat properly (doc says this will take time). My driver's license has been suspended because I had a seizure, so I'm walking and using uber to get around. They do have a program on American Cancer Society to provide transportation, but my location is too remote and there's no volunteers in this area.

As for medications: I'm on Keppra twice a day and this is causing me to have acne breakouts. I was on Decadron for a month and winged off it (heard it causes diabetes if you stay on this too long) This drug may have started my acne. I'm also taking Temozolomide (Temodar) which is possibly the hardest drug to swallow (will give you my 2 cents below on what I do to swallow this). The chemo pills will really causes major constipation, so I changed my diet and incorporated a lot of veggies (not a fan). For me, laxative and stool softeners did not help by itself, so make sure you incorporate a lot of veggies, prunes, and light meals. I'm taking antibiotics over the weekend due to the radiation.

All the drugs and stress has caused me to not have an appetite. What I've done to increase my appetite is force myself to walk for an hour and a half each morning. During my walks I would raise my arms and move them in a swimming motion to exercise them and get my heart racing. The daily walks has increase my hunger and after a week, I'm back to eating close to my normal self. I eat 4-6 times per day breaking my meals apart, and I drink ~6 regular bottles of water per day. My energy level has increased and I'm now able to stay up past 8 pm with all the drugs. There's a cookbook called: The Cancer-Fighting Kitchen by Rebecca Katz with Mat Edelson that I highly recommend. The chemo pill will change your taste buds or causing some weird side effects, for me, I have a sweet taste in the back of my throat that feels like I have concentrated syrup back there. This books tells you remedies on how to correct these odd side effects. So if you have any bitter, salty, sweet, or metallic taste definitely check out this book at the library.

How to swallow Temozolomide pill: I googled and looked everywhere to see what others have recommended on how to swallow this pill. You're not able to break, chew, or do anything to this pill besides swallow it whole. The recommendations I've read does not work for me, so taking it with apple sauce, or pudding does not work for me. The outer coat of the pill will stick when you place it on your tongue, which makes this pill very difficult to swallow. If you try to add water in your mouth and then place the pill on top, the pill will get stuck in your throat (which will cause you to throw it up). If you manage to swallow it, the pill will be stuck in your esophagus which is probably what causes one to be nauseated (who knows?). What I found works is taking the pill before I go to bed with super chilled water in a cup (dont drink out of the bottle). First, take a few sips to coat the chilled water in your mouth, place the pill on your tongue and gulp 8 ounces of chilled water. The pill will go down smoothly and directly into your stomach. From experimenting and finding this out, I do not have any issues such as nausea with this pill.

I learned today that there's a cap (Optune) that will help improve longevity of life and it's mainly for people with glioblastoma. Talk to your doctor to see if you're a good candidate for it. I'm crossing my fingers on the modified zika virus to treat brain cancer and hope we will be closer if not find the cure for attacking this cancer. This by itself along with prayers, positive thoughts and vibes from family and friends motivates me to continue on with my day-by-day. 

kim1971 said:

AA3 wild type and Quercetin

I want to thank everyone for their respnses and I wish you all the best of luck! My husband is through radiation with no bad sie effects so far. He's now on 250mg of temodar 5x/month. He's exercising everyday and eating healthy, tons of garlic and onions broccoli, cauliflour. We still haven't seen the MRI post radiation results but we're kkeping our fingers crossed that we're beating this thing. He's on the following suppliments/prescriptions

2000mg keppra

20mg lopressor

vitamin E

berberine

cucrumin

selinium

melatonin

Vitamin D3

maitake mushrrom suppliments drops and capsules

Men's multi vitamin with no iron

Omega 3 fish oil

green tea extract

soy isoflavin plus eating tofu

1:1 ratio of CBD/THC oil as much as he can handle each day. Not quite a gram yet.

My question is, i'm thinking of adding Quercetin but I have no idea what dose and I've read it caused growth (BAD) in some rat models but i've also read a lot of positive reaction when taken wirh temodar. Anyone know anything about this suppliment? Any experience?

Hello kim1971,

Take a look into Therapeutic Keto Diet. There's a video of an older gentleman that has GBM and given 3 months to live and through this diet, he is still alive today. The diet is essential no carb, no sugar, all organic products. It worked for him and there's a video on youtube. There's nothing to lose and it doesnt cost anything to be healthy. I am also following this and to be honest, it's difficult, but I chose to live and fight.

Tice Family

lthenderson said:

Also Anaplastic Astrocytoma Grade 3

My mom was diagnosed the Anaplastic Astrocytoma grade 3 just a little over a year ago. The only difference is that my mom's was located wholy in the left parietal lobe and could mostly be removed. Some notes from her experience:

Radiation is easy to start out with but gets tougher the longer you have it. Those that seem to do the best are those that are in shape physically. Many of those I met who weren't in great shape disappeared after about week 2 to their rooms and were rarely seen. Those that were in shape seemed to do better. My mom was in excellent shape when diagnose at age 59. Still by the end of radiation, she was worn down and it took probably a good month afterwards to fully recover.  She did not lose any physical functions as a result of radiation but did loose quite a bit of her hair and had very sensitive skin/radiation burns on her head. It has affected her mentally though it is slight and probably only immediate family can tell. She gets a touch more confused at times when she is very tired or very stressed. She also gets a bit more aggressive at times, again only when tired or very stressed. Its tough to realize that those brain cells killed by the cancer or radiation are gone and aren't coming back but sometimes they can be rewired with time and healing.

My mom has now completed about eight months of the planned 12 months of chemo (Temador). It is much easier to deal with than the radiation. She does get ill feeling by the end of the week but recovers fully after a day or two. The only major complaint is that she get nauseated pretty easily if she eats within 4 hours of taking the chemo pill so she has to eat pretty early during those weeks if she doesn't want to stay up late. People are pretty understanding of that when told though.

My mom still gets MRI's done every two months and thus far a year after the removal, the tumor hasn't grown in size and the cavity where it was continues to shrink. Much of the research done says that longevity estimates even five years ago are woefully out of date. Because of the type, the cancer will never leave but in the case of my mom, she still has great quality of life and we have spent this last year and years to come filling her bucket list. It has also brought us much closer as a family.

Just an update that three months after my mom's year long chemo treatment ended, a new tumor this time in her frontal lobe has appeared. Since her last MRI was only 3 months ago and showed no signs and the new tumor is as big as the old one, it is probably a very aggressive one. Surgury to remove it is scheduled next week followed by more chemo. It's been about 20 months since her initial diagnosis.

lthenderson said:

Also Anaplastic Astrocytoma Grade 3

My mom was diagnosed the Anaplastic Astrocytoma grade 3 just a little over a year ago. The only difference is that my mom's was located wholy in the left parietal lobe and could mostly be removed. Some notes from her experience:

Radiation is easy to start out with but gets tougher the longer you have it. Those that seem to do the best are those that are in shape physically. Many of those I met who weren't in great shape disappeared after about week 2 to their rooms and were rarely seen. Those that were in shape seemed to do better. My mom was in excellent shape when diagnose at age 59. Still by the end of radiation, she was worn down and it took probably a good month afterwards to fully recover.  She did not lose any physical functions as a result of radiation but did loose quite a bit of her hair and had very sensitive skin/radiation burns on her head. It has affected her mentally though it is slight and probably only immediate family can tell. She gets a touch more confused at times when she is very tired or very stressed. She also gets a bit more aggressive at times, again only when tired or very stressed. Its tough to realize that those brain cells killed by the cancer or radiation are gone and aren't coming back but sometimes they can be rewired with time and healing.

My mom has now completed about eight months of the planned 12 months of chemo (Temador). It is much easier to deal with than the radiation. She does get ill feeling by the end of the week but recovers fully after a day or two. The only major complaint is that she get nauseated pretty easily if she eats within 4 hours of taking the chemo pill so she has to eat pretty early during those weeks if she doesn't want to stay up late. People are pretty understanding of that when told though.

My mom still gets MRI's done every two months and thus far a year after the removal, the tumor hasn't grown in size and the cavity where it was continues to shrink. Much of the research done says that longevity estimates even five years ago are woefully out of date. Because of the type, the cancer will never leave but in the case of my mom, she still has great quality of life and we have spent this last year and years to come filling her bucket list. It has also brought us much closer as a family.

My wife of 35 years had a aa3 brain tumor removed two years ago. went thru radiation and chemotherapy in the same fashion... she is currently cancer free with mri checkups every 3 months.. i have signed her up for several clinical trials in case the tumor comes back. we are also retired and enjoying our time together as best we can... it is good to hear your story and hope all goes well for you!!!