Astrocytoma Grade III Survivor Here To Help
Comments
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I also have a grade 3
I also have a grade 3 astrocytoma, and i found out whem it came back last november that its a reoccuring thing. Have you had it more that once?0 -
tumor recure in two monthsI_Promise said:survival range varies greatly
but typically for AA 3 it is btw 4-5 years.
I don't know why your doc would say 3-4 months. Even for GBMs it is a leat 12 months.
J.
tumor recure in two months after operation so doctors told me its very bad prognosis and survival chance is very low..only god can help me and i trust him.0 -
heyGaurang said:tumor recure in two months
tumor recure in two months after operation so doctors told me its very bad prognosis and survival chance is very low..only god can help me and i trust him.
I'm sorry and Good luck. Day by day!0 -
hello GaurangGaurang said:tumor recure in two months
tumor recure in two months after operation so doctors told me its very bad prognosis and survival chance is very low..only god can help me and i trust him.
I'm sorry, Gaurang, that your doctors gave you a bad prognosis. Please remember that they don't KNOW for sure. They tell you their OPINIONS based on statistics, but you are not a statistic--you are an individual and you will have your own unique response to your treatments. Please hold on to hope. I believe that it's really important to keep a strong positive mental attitude and to guard that attitude as much as possible....don't read every negative thing on the internet, etc., and save and remember and remind yourself of every positive bit of information that you hear or read. There are many posts on this site of people living much longer than their doctors GUESSED that they would live.
I'm telling myself the same things that I am telling you here, because I let my guard down and I have not being working really hard at keeping a positive attitude. I've found that once you start letting a few negative thoughts slip in here and there, it's like a snowball effect and before you know it, you are overwhelmed with despair. That's the place I was headed. I'm trying to have a turn around in my attitude but it's hard.
Did your tumor recur after surgery only, or did it recur after surgery, radiation, and chemo? You didn't mention taking chemo, did you? It seems that the standard treatment for grade three tumors usually includes chemo, and the chemo is usually Temodar. If you are not taking Temodar, you might want to ask your doctor why he did not prescribe it.
Please keep us updated here on CSN. I am always thinking of others on this board, praying for them, hoping with them, and I always appreciate knowing how you and they are all doing.
Love, blessings, and peace to you,
Cindy in Salem, OR
PS I far prefer to put my trust in God rather than in the doctors. I feel that God is much, much more trust-worthy. (worthy of my trust)0 -
Thank you very muchcindysuetoyou said:hello Gaurang
I'm sorry, Gaurang, that your doctors gave you a bad prognosis. Please remember that they don't KNOW for sure. They tell you their OPINIONS based on statistics, but you are not a statistic--you are an individual and you will have your own unique response to your treatments. Please hold on to hope. I believe that it's really important to keep a strong positive mental attitude and to guard that attitude as much as possible....don't read every negative thing on the internet, etc., and save and remember and remind yourself of every positive bit of information that you hear or read. There are many posts on this site of people living much longer than their doctors GUESSED that they would live.
I'm telling myself the same things that I am telling you here, because I let my guard down and I have not being working really hard at keeping a positive attitude. I've found that once you start letting a few negative thoughts slip in here and there, it's like a snowball effect and before you know it, you are overwhelmed with despair. That's the place I was headed. I'm trying to have a turn around in my attitude but it's hard.
Did your tumor recur after surgery only, or did it recur after surgery, radiation, and chemo? You didn't mention taking chemo, did you? It seems that the standard treatment for grade three tumors usually includes chemo, and the chemo is usually Temodar. If you are not taking Temodar, you might want to ask your doctor why he did not prescribe it.
Please keep us updated here on CSN. I am always thinking of others on this board, praying for them, hoping with them, and I always appreciate knowing how you and they are all doing.
Love, blessings, and peace to you,
Cindy in Salem, OR
PS I far prefer to put my trust in God rather than in the doctors. I feel that God is much, much more trust-worthy. (worthy of my trust)
Thank you very much Cindysuetoyou,
I was very disappointment and tense but i feel really good after your reply.you really encourage me dear.
Doctor didn't give me advice for radiation because of two reason
1) first CT scan report after twenty days of surgery was very clear and no revealed no lesion.
2) report of astrocytoma grade 2 and surgery was done very well
My recur was done after surgery but radiation and chemo were remain(in two months gap) now i have completred my radiation along with chemo(temozolomide)140mg on concurrent day. now one month off in chemo and after a month MRI will be done and then new dosees of chemo will continue as per doctor prescribe..
what is price of temodar? here i am taking temozolomide of $40 for 140mg.
once again thanks for help and you creat new hope into me.0 -
treatment? location?In_it_for_the_long_haul said:I also have a grade 3
I also have a grade 3 astrocytoma, and i found out whem it came back last november that its a reoccuring thing. Have you had it more that once?
HI:
What kind of treatment did you have for your original tumor? How long before it reoccurred? Where was the original one? Did it come back in the same place? I hope you don't mind all of my questions. My daughter is finishing her 12 months of chemo or the maintenance phase for her first treatment. I do worry about what will happen when we stop it. I hope and pray for my daughter and all of you to be in the % that live for many years without a reoccurrence and/or new treatments that work!
God Bless you.
Edna0 -
helloalutiiqmom said:treatment? location?
HI:
What kind of treatment did you have for your original tumor? How long before it reoccurred? Where was the original one? Did it come back in the same place? I hope you don't mind all of my questions. My daughter is finishing her 12 months of chemo or the maintenance phase for her first treatment. I do worry about what will happen when we stop it. I hope and pray for my daughter and all of you to be in the % that live for many years without a reoccurrence and/or new treatments that work!
God Bless you.
Edna
I had my origional diagnosis in jan 2011 so it was 10 months before I had another surgery, but it came back after 8 months. It was in the left frontal lobe. The second time it was around the resected area they took out the first time. This time there was swelling so I couldnt move my right side but after about 5 days of steroids i was able to move it a little bit. After about a week and a half I was able to walk again. They said mine is going to keep recurring but hopefully the further away the better. In case I dont hear back from you good luck with your daughter. If you have any other questions feel free to ask. Im here.
Jackie0 -
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Temodar 140 mg for 60 dayscherrit said:What chemo did you recieve?
What chemo did you recieve?
Temodar 140 mg for 60 days in the begining, then 280mg for 5 days out of every 28.0 -
In_it_for_the_lIn_it_for_the_long_haul said:Temodar 140 mg for 60 days
Temodar 140 mg for 60 days in the begining, then 280mg for 5 days out of every 28.
Are you still taking Temodar after having a recurrence in November? Or, are you now taking some other chemo drugs? Our son took Temodar for the first six months, then another tumor showed up on the scan in December 2011. So now he is on CCNU and procarbazine.
Just wondering if your docs are continuing the Temodar even though your tumor came back. Also, where to you get treatment?
Hope all goes well for you.0 -
Temodar 140 mg for 60 daysIn_it_for_the_long_haul said:Temodar 140 mg for 60 days
Temodar 140 mg for 60 days in the begining, then 280mg for 5 days out of every 28.
I had a very similar type of chemo. They started me out low and ramped up to the highest dose he thought I could handle. They had to mix multiple mg pills to get the dose right. I know for sure it was 300mg but I vaguely remember 400mg in there for some reason. Some details I just don't remember.0 -
Cost of TemodarGaurang said:Thank you very much
Thank you very much Cindysuetoyou,
I was very disappointment and tense but i feel really good after your reply.you really encourage me dear.
Doctor didn't give me advice for radiation because of two reason
1) first CT scan report after twenty days of surgery was very clear and no revealed no lesion.
2) report of astrocytoma grade 2 and surgery was done very well
My recur was done after surgery but radiation and chemo were remain(in two months gap) now i have completred my radiation along with chemo(temozolomide)140mg on concurrent day. now one month off in chemo and after a month MRI will be done and then new dosees of chemo will continue as per doctor prescribe..
what is price of temodar? here i am taking temozolomide of $40 for 140mg.
once again thanks for help and you creat new hope into me.
You get a great price for that, you are definately lucky. My insurance was paying upwards of $10,000 a month for 7 days worth of 300mg pills. Thankfully I had insurance as you can imagine what I thought when I saw the inital payment before I saw the all important "this is not a bill" from one of the payment receipts. You must not live in the US, is that right?
How are you dealing with this, are you having a good day/week so far?0 -
astrocytoma
Hello i saw one of your posts thar you are a 5 year survivor. Thats awesome! My boyfriend is 23 and just got diagnosed with an inoperable astrocytoma on top of his thalamus. The doctor said they are going to monitor it and he will have to have chemo and radiation some day. The doc also said only 37% of people with this tumor survive for 5 years or less. Im really scared. Was your tumor revomed?0 -
Grade III brain cancer (left side)
Hi, am so happy for your surviving and loved the fact that you are willing to help others in same situation. I was diagnosed with grade 3 brain cancer on the left side of my brain. My son found me unconscious on June 22, 2011. 1/3 of my brain was taken out on Aug 29, 2011. In Oct 2011 I had a 45 day treatment (10 min radiation Mon-Fri) and in evenings drank 150 mg of Temodar capsules for 45 days. Now I will start this Monday Feb. 20, 2012 a 1 year treatment of 300 mg Temodar but only drink pills for 5 days every 4 weeks (drink 1 week and let 3 weeks go by without taking any pills and them start again with the 5 day treatment).
God along with the help and assistance of wonderful Angels on earth like yourself have been shown to help me. God bless you and I look forward to your assistance and recommendations,
Thank you, Gloria0 -
temodar doseagesurvivormannc said:Temodar 140 mg for 60 days
I had a very similar type of chemo. They started me out low and ramped up to the highest dose he thought I could handle. They had to mix multiple mg pills to get the dose right. I know for sure it was 300mg but I vaguely remember 400mg in there for some reason. Some details I just don't remember.
Hi:
My daughter took the Temodar during radiation, I think about 120 or 140 mg. each night, 7 days a week. Then when we started the maintenance phase part of her chemo she started out with 400mg. of Temodar on the 5/28 schedule, but that made my daughter too sick. So, we halfed it for three months and now we are at the 300mg level. We just did an MRI and I am nervous about what it will show after lowering the doseage. She will be done with chemo in May. I pray and pray that she will be stable and have no reoccurrence. Prayers for each of you. Sending God's blessing to each of you.
Edna0 -
temodarpapa joe said:Hi,
Just a quick question
Hi,
Just a quick question my Dad is also a AA3 cancer survivor 17 months now and he is still taking temodar. Did you use this type of chemo also? if so how long?.
Thanks,
Sandi
Hi, I was diagnosed Nov 11,2009 with an AA3.I was a full time collage student, major was Dr. of Osteopathic Medicine. That all came to a halt on a Wed. morning Nov. 11,2009. I started to feel funny tingling feels throughout my face. I then had the worst headache that I have ever had in my then 33 yrs. I was rushed to the ER. where they had proceeded to do multiple test such as an MRI, and CT scan. Therfore finding the reason for the headache, and the tingling feelings were as follows 6cm* tumor in my right frontal lobe. The tumor had such a big blood sack on it they thought I had 2. But it was confirmed during the 8 hour surgery that it was only 1 tumor, the blood sack was going to burst inside my head if I would not have gotten to the hospital that Wed. I would have died the Drs. said that night in my sleep. I then done 6 weeks of radiation 5 days aweek with 7 days aweek of Temodar at 145 mg. After 6 weeks I then had a brake for 30 days and piced up on the matenience cycle of Temodar at 275 mg. I never had any side effects and did not have any deficits from the surgery. The Temodar and radation gave me energy, it was like i looked foreward to treatment it just made me that much stronger. They did remove 100% of the tumor. And I still take the Temodar almost 3 yrs. later. I live healthier now then I did back then. My life is as normal as it has always been. I get blood drawn every 2 months and MRI every 6 months, they are still clean, with no signs of cancer. Your Dad will be ok. don't give up. And don't let your guard down. Good luck and hope this helps on your question.0 -
level of temodar?willnotbeatme said:temodar
Hi, I was diagnosed Nov 11,2009 with an AA3.I was a full time collage student, major was Dr. of Osteopathic Medicine. That all came to a halt on a Wed. morning Nov. 11,2009. I started to feel funny tingling feels throughout my face. I then had the worst headache that I have ever had in my then 33 yrs. I was rushed to the ER. where they had proceeded to do multiple test such as an MRI, and CT scan. Therfore finding the reason for the headache, and the tingling feelings were as follows 6cm* tumor in my right frontal lobe. The tumor had such a big blood sack on it they thought I had 2. But it was confirmed during the 8 hour surgery that it was only 1 tumor, the blood sack was going to burst inside my head if I would not have gotten to the hospital that Wed. I would have died the Drs. said that night in my sleep. I then done 6 weeks of radiation 5 days aweek with 7 days aweek of Temodar at 145 mg. After 6 weeks I then had a brake for 30 days and piced up on the matenience cycle of Temodar at 275 mg. I never had any side effects and did not have any deficits from the surgery. The Temodar and radation gave me energy, it was like i looked foreward to treatment it just made me that much stronger. They did remove 100% of the tumor. And I still take the Temodar almost 3 yrs. later. I live healthier now then I did back then. My life is as normal as it has always been. I get blood drawn every 2 months and MRI every 6 months, they are still clean, with no signs of cancer. Your Dad will be ok. don't give up. And don't let your guard down. Good luck and hope this helps on your question.
Hi Will not beat me:
what a good, hopeful story. Do you mind if I ask where your treatment is? What has your level of temodar been for these three years? Did you have any nausea? If you did what did you take? I am very happy that things are going so well for you. God Bless you!
Edna0 -
a little help
I am new to the site but have many questions. I am having trouble finding any research or information on astrocytomas to the right frontal lobe. My dad is an 18 year survivor but is now having another health issue and need to make sure he is on the right medications for it. He recently had a stroke and am trying to find out if it is caused by the cancer or another issue. I am also looking to see if the simvistatin the doctor is putting him on is the right medicine to help prevent any future strokes. My dad was only given a short time to survive so him still being here is a miracle in itself. I only want the best treatment for him but am learning there is a possibility the simvistatin can cause cancer to grow and that is the last thing I would want for him. Can someone, anyone please help with this matter.0 -
Ben Williams
Sharing a liink with you - stumbled across two weeks ago
http://www.virtualtrials.com/williams.cfm
Diagnosed Astrocytoma Gr2 - 07/2005. MRI/surgery (biopsy only)/radiation. 01/2013 Resection surgery dx now as Oligodendroglioma versus Astro. Please go to website - Mr Williams will email you back and his book is an eye opener.
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