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Anaplastic astrocytoma grade 3 wild type

kim1971
Posts: 4
Joined: Jun 2017

I'm looking for some hope. My husband was diagnosed with an Anaplastic Astrocytoma grade 3 wild-type. He is 59 but very healthy. The doctor said he has the heart and arteries of a teenager.

His presented with a few instances of olfactory hallucinations then a grand mal seizure back in late Feburary. He had an open biopsy on June 5th and they removed about 30% of it but they said it's too much risk to remove the rest. I guess it's infiltrating and wrapped around the sheath between his right temporal lobe and the frontal lobe. He has had no other symptoms (other than that one seizure). No slurred speech, weakness etc. No confusion no mood swings. He's on Keppra and doing really well on that. He's recovered really well after the surgery also. No complications at all. 

We're going to do radiation and chemo to shrink it and hopefully they can remove the rest. We're very scared and looking at every possible treatment aavailable. We live in CO so CBD and THC oil will be easily obtained. He's planning on taking that to help with the side affects of Chemo.

Anyone out there survive this for longer that the projected 1-11/2 years?

Craignick
Posts: 2
Joined: Jul 2017

Hello! I hope everything is going well. I know your message is from a couple of months ago( seen that it wasn't from a couple months ago) but I just thought I would send you a message. I'm sure by now you have read all the stories and have yourself scared like I was. There was a point though once I read everything and had little hope from the stories I found, I stopped looking. I was diagnosed in October 2006. the tumor (the size of a ping pong ball), was discovered after I had a seizure. Side note: I have not ever wrote on one of these message boards since 2006. The tumor was removed(as much as they could) and I began radiation and chemo. I know I'm making this quick but I'm typing on my phone and it's a little difficult. i was placed on disability and told to enjoy what life I had left. I never let those words soak in. I began college 6 months later. I graduated the University of Oklahoma 5 years later. My point is, I never accepted the diagnosis. I was 33 at the time, I believe. I continued to live my life. Don't get me wrong, I know that there's a great chance that this will be what may take my life eventually. There is also a huge mental hurdle that everyone has to jump over especially the one diagnosed. I came on here looking for survivors more than 11 years. They may be like me though and just living their life. Stay positive and try to avoid the stories that are 2-5 years.  I think on occasion that I'm starting to have different symptoms even at 11 years. My vision is getting worse but I came to the realizatio that I'm getting older and just needed glasses. i know it was quick but hope there was something in that, that will help you. Email me anytime. Craignichols@alumni.ou.edu. I don't know if this will be read is another reason why I made it short. 3/4 of the people I know today dont know that I have cancer. Having brain cancer has never once been my excuse for anything i've ever done. At first everyone asked  about my brain but after awhile it was only a few people I talk to about it. Take care

bookoojohn
Posts: 1
Joined: Jul 2017

Craignick

I read your post and it was encouraging. I had a massive seizure Nov 2015 and fell in my bathroom and shattered my left shoulder. My shoulder was so destroyed that I need a complete artificial shoulder replacement but I can't do it because I am still on chemo. I had my tumor removed by an incredible surgeon. It was the size of a lemon. I was put on temozolomide every day for 8 weeks and radiation every day for the same period. I was on chemo for the next 12 months with 5 days on for each month. Then I got three more small tumors and the resection area was growing back. So now I am on 22 days a month of temozolomide and it sucks. I struggle all the time with the uncertainty of it all. You know, the whole..."2-3 years" thing. I have always been super positive my whole life as an entrepreneur and now I have the worst attitude. They say I can try Avastin next if this doesn't work and I am wondering what people think of that and what results others have had? They make it sound like it's going to be a big deal if I make it to Christmas. It's July now. I am so tired I can hardly do anything. I never feel good anymore. Now all I can think about is what's my death going to be like? How much suffering am I going to endure? With my shoulder and the brain surgery, it was pretty hard. I have been sleeping sitting up for a year and a half now. Does anyone else contemplate what it will be like when it all goes south...real south?  I would love any input or help that anyone has to offer. I am very happy for Craignick that you have made it this far. I would give anything just to get another three years. I am such a control freak and this is the first thing in my life that I have no control over and I am struggling. Have a great day everyone! much love...

Craignick
Posts: 2
Joined: Jul 2017

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.

kim1971
Posts: 4
Joined: Jun 2017

Thank you for your message. That is great that you have made it 11 years! We're just so scared. We've overhauled our diet, we ate pretty healthy anyway, stopped drinking alltogether and make sure we exercise everyday. We're trying to just stay positive and move through each day slowly. Can you tell me, where was yours located and did you experience any hearing problems during or after radiation/chemo? My husband is going to do 30 rounds of chemo and take Temador. They said they needed to blast this thing from multiple angles and that people sometimes lose their hearing. :( My husband is a part ime professional musician and talks on the phone for work all day. He would be unable to work if he lost his hearing. 

 

lthenderson
Posts: 19
Joined: Feb 2017

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.

lthenderson
Posts: 19
Joined: Feb 2017

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
Posts: 19
Joined: Feb 2017

The surgery was completed and the remaining tissue around the tumor was all healthy so doctors feel they removed all that could be removed. However the pathology has come back showing that it was now a Grade 4 Glioblastoma. She will be meeting with oncology in a couple weeks to discuss treatments.

kurtgrabow
Posts: 3
Joined: Dec 2017

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!!!

Ralph Schwarz
Posts: 1
Joined: Jul 2017

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!!

Tice Family
Posts: 4
Joined: Oct 2017

Hi Ralph,

Did they remove all of your tumor or only partial? How long did you do radiation and chemo?

 

Thanks

N

willbotsford
Posts: 2
Joined: Sep 2017

Hello,

 

I am new here.  My wife Michelle had a seizure on Wednesday 09/19/2017, she was transported to Methodist Hospital-Houston in the Medical Center.  After a CT they discovered she had a mass in her brain.  She underwent a MRI and it was confirmed that she had a tumor that was on the left side of her brain in between her motor function and speech function.  On Friday 09/15/2017, she underwent a Craniotomy and 70% of the tumor was removed.  The surgeon sent the tumor to pathology which was examined by Methodist hospital pathology and was then sent to MD Anderson for their pathologists to examine.  We were notified yesterday that the pathologists had classified the tumor as a Grade 3 Anaplastic Astrocytoma.  We have an appointment for next Wednesday 09/27/2017, with the Oncologist.  I just wanted to anyone who has been through this what we may come to expect with treatment.  My wife is 32 y/o and a private Nanny.  i work as a Fire Lieutenant for the Fire Department.  Any help would be greatly appreciated.  Please keep her in your prayers as we try to overcome this.

Tice Family
Posts: 4
Joined: Oct 2017

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. 

Tice Family
Posts: 4
Joined: Oct 2017

Chemo pill - It's not the temador that gives me constipation, it's the nausea pill. If you're not nauseated while taking the chemo pill, do NOT take the nausea pill. I originally thought the chemo pill was causing my dilemma, but it's the nausea pill causing major constipation.

Optune Cap - I'm not going for it. The statistics on this is not great. They say it will extend your life by 5 years (if you're lucky), but so far this is not accurate. It's miserable to wear this unit for 18 hours per day (yes, per day), and you have to shave your head every 3 days, and it will be difficult to try to fly with this one. They monitor the unit, so they will know if you do not wear it, or meet the 18 hours per day rule. Also, I was advise that this device does not come close to what they claim.

Clinical Trials - Facts, there's no survivors that went through clinical trials for AA3 wildtype and survived past 6 months to a year. I've decided to not go this route either. I do not want to be miserable and die miserable.

Lastly, I'm working on the Therapeutic Keto diet. Boost my immune system to fight the Tumor and keep it at bay. Your doctors will probably not talk about this approach because it's not something they practice. Dr Otto Warburg discovered this back in 1931. Check it out.

Tice Family

 

kim1971
Posts: 4
Joined: Jun 2017

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?

Tice Family
Posts: 4
Joined: Oct 2017

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

 

AmyES
Posts: 8
Joined: Oct 2014

Hi!

I was  diagnosed with an AA3 in August 2013. I had a seizure one week after I gave birth to my son. I have been a patient at Duke for 3 1/2 years now and I’m four years out from my initial diagnosis. The only thing I’ve been told to avoid by the dietitians at Duke in my diet is  antioxidant supplements. I was told that food that naturally contain antioxidants such as blueberries were fine to eat but not to take artificial antioxidant supplements because they could grow cancer. 

 

 My treatment ended in November 2014 and my MRIs have been clear ever since. . 

 

Prayers!

Amy

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