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Husband diagnosed with Anaplastic oligoastrocytoma grade III, scared and confused....

JNGK12's picture
JNGK12
Posts: 10
Joined: Mar 2013

 

My husband was recently diagnosed with Anaplastic oligoastrocytoma grade III just a little over a month ago, he had surgery on January 30th and they were able to remove about 95% of the tumore and when he was being discharged we were given some paperwork with all these words and numbers on it, and it was still over 2 weeks before we saw the Neuro Oncologists to get any real information, this of course is very scary, they keep telling us how good his prognosis is with him being so young (27) and they are treating it aggressive now to give us the best odds, but then they start talking about having 10 years before it comes back, so I am very confused and very scared... Has anyone else had this same type?

 

scorpio79
Posts: 25
Joined: Nov 2012

Hi I am so sorry to hear about this..I can understand the shock and pain you must be going through right now...Just remember to be strong...do not read statistics everyone is different and reacts differently...My Brother In law has Grade 3 Oligodendroglioma...he died a few weeks ago and he was 29. He battled cancer for 6 years...

 

That does not necessarily mean that it is the life span..I have seen many people have a good and long life...

I will pray for you and your husband and hope you have the courage and the strength to get through this..Please keep us posted on how things go for you

 

Luv and blessings

 

D

JNGK12's picture
JNGK12
Posts: 10
Joined: Mar 2013

Oh, I am so sorry for your loss!!! Thanks for the response and prayers, I have read some things on the internet even with his Dr. giving us a good report and all but it is still very scary, we have already reached our first obstacle.  He was suppose to start radiation 5 days a week for 6 weeks with 42 days straight on the chemo pills, but had a build up of spinal fluid around his surgical site, so we had to put the radiation and chemo off until the swelling goes down or it is drained...

scorpio79
Posts: 25
Joined: Nov 2012

Hi JNGK....make sure you ask questions to the doctor...hope they were able to drain out the spinal fluid...whats the protein level in the spinal fluid...it has to come to a certain level before they proceed further...I hope you have the strength and courage to beat this disease...stay strong...

 

Luv - D

JNGK12's picture
JNGK12
Posts: 10
Joined: Mar 2013

Thanks for the response...They havent drained it yet, the doctor acted like it was not a big deal right now, just said the site wasnt ready to put radiation on with it there, and they havent said anything about testing  any protein levels or anything, should they? Im really not sure what all to ask or do at this point... He feels bad alot of the time now, we thought it was from one of the meds but he has been off of it for a few days now and still feels bad most of the day, he has some moments where he feels good for a little bit, but then just starts feeling bad all over again...

scorpio79
Posts: 25
Joined: Nov 2012

I am not an expert and every person may be different...but for my brother in law...they had to drain the spinal fluid...but this happened to him when he was really in the final stages....the doctors were not able to get his protein levels under control..for a long time they did not even know what to do...they just kept him in the hospital thinking he had TB....his spinal fluid kept increasing and then they finally decided to start draining it out...after almost 30 days of being in the hospital they did a biopsy and then realized his tumor had spread to the spine...This cancer is unique and behaves differently on different people...I would suggest just read about your husbands tumor and ask the doctors whats the next step and when they plan to start the Chemo and radiation

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

Hello, 

My son was diagnoised at 28 with OLI-Grade III, he has the 1p19q deletions.  His doctors treated him agressively to get rid of the 1% of the tumor left behind.  He is 100 % today, doctors call him boring.  He did 6 weeks chemo (temodar) pill form, with 6 weeks radiation.  Then six months of a stronger dose of Temodar.  He has been cancer free since Sept, 2011.  Treating facilities are John Hopkins, Roger Maris Cancer Center and Mayo.  Each has patients 20, 30 year survivors, great track record.

This is scarey, make sure you ask questions of treating physicians, until you get the answers you are comfortable with.  Do not let them give you a timeline, there is non, and every person is different.  I have many post to describe what we have been through, what sites our doctors recommend, and even questions to ask.

Remember to stay positive and FIGHT, FIGHT, FIGHT!  You control your destiny!

(((HUGS)))

Carol

JNGK12's picture
JNGK12
Posts: 10
Joined: Mar 2013

Thanks!! I am trying to be strong, especially in front of him and our babies... it is hard!! I am proud for you and your family that your son is doing so well :)

torsum's picture
torsum
Posts: 2
Joined: May 2013

Hi,

My 15 year old son had a night of vomiting then started fitting. To our horror at the hospital we were told he had a 7cm tumour coming out of thalamus which had bled. He never woke up and died 6 days later on April 11 2013. The histology was anaplastic oligoastrocytoma grade IV. Apparently it is a very rare presentation to just collapse from this and die. Up until the night he started vomiting he had been completely normal and very active. 

I dont know why I am writing this here but I guess just to say that you are lucky to have notice and to still be able to love your family members. 

He never knew he had a tumour and maybe that's good I dont know....but we are left wondering what the hell just happened.

Thanks for reading.

Tory

JNGK12's picture
JNGK12
Posts: 10
Joined: Mar 2013

I am so sorry to hear this story... I do feel very blessed to have been able to find out when we did... The dr said that he has had this tumor for many years, that this type is very slow growing... and until this point he never had any symptoms, he started having really bad headaches around Thanksgiving and they just got worse until he finally agreed to go to the dr. and the dr ordered a CT scan just to be safe since he had never had headaches like this before... ever since that scan things have been chaotic, but he has been very strong and taking well to the chemo and radiation. AGAIN I am so very sorry about your loss, I cannot even begin to imagine how hard that must be...

 

Sometimes writing it out relieves some stress... so I will check in again to see if you have responded and just want to "talk"

 

Nikki

torsum's picture
torsum
Posts: 2
Joined: May 2013

Thanks Nikki,

Just enjoy all the special moments you can. It's so cliched but I would give anything to be able to hug him again or tell him everything is ok. 

Good luck. 

 

x

moshem
Posts: 2
Joined: May 2013

A year and a half ago I was diagnosed with a malignant brain tumor. Two weeks after surgery I was told it was a grade three and now a year and a half later, after six weeks of radiation and 20 months of chemo, I was told I can go back to normal life. The chance of recurrence is a source of anxiety but right now you have to focus on the treatment and getting better. So stay strong and focus on the present. You have a long journey ahead.

Best wishes,

M

JNGK12's picture
JNGK12
Posts: 10
Joined: Mar 2013

Thanks so much for the words of encouragement... and contrats on your good diagnoses... He worries about a reoccurance and we have not finished his 6 weeks of radiation just yet, Monday should be his last day, as long as the machine stays up and running, but I just keep telling him, thats technology has already came so far, just think of how much further it will advance by the time it happens if it does... Good luck, and as I always say to my hubby.... KEEP THE FAITH :)

God Is Good
Posts: 1
Joined: May 2013

Hey, I read your story and felt I should reply. 

My husband had a seizure on March 21 and from that they did a CT scan and found a mass... To make a long story short. We were Canadians in Texas and got sent back to Canada by our insurance to do surgery. He had a surgery on May 2nd to remove the tumour, and was diagnosed as a grade 3 Anaplastic Oligoastrocytoma, he does not have the deletion so at this point they have no proof that chemo helps any (for his diagnosis), the only thing that they know works is radiation. We just had our BIG after surgery appointment today and have decided to do 7 weeks radiation. After that he will do regular MRI to keep an eye on it, while we try and make the most of life while we pray and believe it will not come back (at least for many many years, if ever). 

Taking one day at a time, believing that Gods ways are higher than ours or any statistics. 

We have a two year old daughter and the thought of my husband not being around to see her grow up is to much for me, but I have to remember that God loves my daugther and my husband more than I do and that ONE DAY WITH HIM is far better than any day on earth........ 

Praying for deep deep peace for each of you! 

Understanding your heart! <3

JNGK12's picture
JNGK12
Posts: 10
Joined: Mar 2013

Thank you for sharing your story... I understand completely how you feel, we have a 2 year old as well (well she turns 3 this Sunday) and I need him to be there to see her grow up as much as she does :)... You are right God loves and has a plan for all of us, so we are keeping the faith and taking it day by day.  Good Luck with everything! My husband has just finished his 33 radiation treatment and 42 days straight of chemo pills, we go in for an MRI soon to see how it helped!

arun04072
Posts: 5
Joined: May 2013

Hi, Sorry to know about your husband's disease. Since its Grade 111 the prognosis might be good but its very difficult to say when it will come back and at whcih stage. I am not very sure as to how much chemo or radiation will benefit. I am saying this on a personal experience. My uncle was diagnosed with GB stage 1V (higher stage than astrocytoma ) and he underwent surgery followed by chemo and radiation but it didnt help him much. He went for a new alternate treatment "SPMF" and really benefitted from it. He is doing well and going to office. He was given almost no hope by doctor's till he underwent the SPMF treatment. At this stage since it is grade 111 i think you should try out the SPMF treatment as it might control the disease. Yoy can visit the website and links for further information.

www.sbfhealthcare.com

links :

www.sbfhealthcare.com/research.html

www.sbfhealthcare.com/images/published/asno.pdf

www.sbfhealthcare.com/images/published/17.pdf

www.sbfhealthcare.com/images/published/Carcinogenesis.jpg

Hope it helps you.    Good Luck

JNGK12's picture
JNGK12
Posts: 10
Joined: Mar 2013

Thanks so much for the info... So glad it helped your uncle... I will definately check out the websites :)

jonmanc70's picture
jonmanc70
Posts: 1
Joined: Dec 2013

Hi I am so sorry that you have to also battle this horrific disease. I was admitted to hospital last month (November 18th) with severe headaches and I was vomiting. I was actually on holiday with y wife when this started and I flew home as my condition was getting worse. An emergency craniotomy was performed and 2 weeks later my world fell apart: I was told I had a front right lobe Oligoastrocytoma Grade 3. My consultant explained that although some of the tumour had been removed, there was plenty left (it was huge: 8cm x 5cm) and I am booked in for further debulking surgery on 27 December. 

I wondered if anyone out there is following any particular diet? My wonderful wife is looking after me and has me on a strict fruit and veg diet with gallons of green tea. Has anyone read anything about the baking soda/maple syrup mix to help cancer as I am thinking about trying that?

Kees van Beelen's picture
Kees van Beelen
Posts: 11
Joined: Dec 2013

Hi - sorry to hear of your troubles.  I am an oligo survivor.  Ask your doctor about Temador and the if you have the 1p 19q chromosome deletion?  I hate to tell you but because of the make up of this type of tumour they will never get it all out, Temador however has been shown to be highly effective in treating it, especially if you have the chromosome deletion.  Given where my tumour was, my doctors only operated when they had to - I started to have massive seizures.  Even then most of the tumour was dealt with using Temador.  They were hesitant to use radiation and only will resort to it if they have to.

If they put you on Temador, they'll give you anti-nausea medicine, which is creates other problems, mainly really bad constipation. I was lucky in that the nausea was not bad, but I did lose most of my sense of taste though and that significantly reduced my appetite.  Both came back after chemo was over.  

During my course of chemo, I increased my water and fiber intake.  That helped with the side effects of the anti-nausea meds.  I actually cut those out at the end of treatment.  Be careful doing that however, everyone is different and the nausea thing was not that bad for me.  I've been told it can be really bad.  I also used cannabis - not prescribed but I told my doctor - which also helped.

Besides neuroncologist, I went to see an oncologist who uses non-traditional as well as traditional approaches to fighting cancer. He had me in kinds of supplements - too much for me And I ended up taking a good multi vitamin.  My diet was also already more or less in line with his recommendations -

low in red meat, eat organic food, whole grains, avoid the skin and innards of any animal fish. Avoid peanuts or anything grown below the ground, use red pepper in your diet, eat lots of berries, especially blackberries and blue berries, really avoid refined sugar, eat unsweetened dark chocolate, tomatoes are good, things like kale and dark leaf vegatables are good, herbs like rosemary are very good, olive oil is good but loses its much of its good qualities when it's used in cooking so use grape seed oil instead and drink lots of green tea.  

Other recommendations included meditation, getting exercise and rest.  I made sure I had quiet time and listened to music.  He was also an advocate of music therapy. I never heard of the baking soda thing.  

Hope this helps.  

mccindy
Posts: 82
Joined: Jun 2013

the baking soda thing is not true.  Diet can help to some extent (avoiding large amounts of sugar is a good idea) but most consumables can't cross the blood-brain barrier and will not have an effect.  Be careful when using Dr. Google - there are a lot of websites that are just people speculating and that can contain false information.  You're better off sticking to legitimate medical websites and don't pay any attention to Wikipedia.

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