Is it over for my mom?

Prayingforamiracle · New User Joined: 17 Jan 2008 Posts: 7 Location: augusta GA

Hey everyone, my name is Nancy and i'm 20 years old. My mom was diagnoised with a Oligodendroglioma tumor about 10 years ago. She had it removed and when they removed it, it was about a size of a grape..no further action was taken after the surgery but follow up MRI'S. And she was put on Dilantin for seizures. Her doctor said this tumor would Come back every 4 years and again it came back. She had it removed successfully again. She was told this was a slow growing tumor. 2006 was her Third surgery, I would say this one came back almost four years later a little less. Anyway it was more less suppose to be a biopsy rather than surgery but turned into a surgery. They couldn't remove all of the tumor, all they could remove was half. After the surgery she came out bad, her speech was very inpaired and she couldn't move the left side of her body. I would say she spent about 2 weeks in the hospital and then had in home therapy and pretty much regained her left side and speech but with still some mild weakness in the left side. Her tumor is located in the right frontal lobe of the brain. We were told it was spread out like peanut butter and was now a grade 11. Anyway since she still had some of the tumor left they wanted to do chemotherapy, she started Temodor I have no idea how long she was on it, but there was no progress, it didn't do anything for the tumor. The doctor said that this was one of the best medicines for this type of tumor. Please bare with me this is a lot to remember and i might not get all the facts straight. Anyway so the doctor decides that hes gonna do radiation, and told my family that this would give her at least 3-5 years of no reoccurance, well she did the radiation and the doctor said he thought it was helping but then the next MRI, turns out didn't do anything for the tumor. So then she goes for another Chemo, Campostar, used with another type I dont know what it is called though, anyway she went to the hospital to receive this type of chemotherapy and anyway she had a small seizure while she was asleep and that day she was suppose to go to the doctor, she told him so he did a CAT SCAN and it showed possible Blood on the brain but he thought it might be Calcium Pockets. So he waited a week and they did a MRI which confirmed that she did have blood on the brain and he told her that she could continue chemo but the bleeding might get worser, anyway he gave her some type of med for the bleeding on the brain and its suppose to stop the swelling. Before the bleeding on the brain she had another MRI, and he said she was making progress it looked like the tumor was shrinking well so not the case now. She went back to him after this last MRI and apparantly the tumor is growing Rapidly, and offered to give her the Chemo again, but whats the point if the chemo wasn't even working?? He said if she were to do the chemo again that she would have to have blood transfusions. He said that he was really hoping that this last chemo was gonna work. So I guess basically theres nothing left for her to do. She can't have anymore surgeries and basically refuses to which I don't blame her because she got messed up the last one. This doctor also said that my dad could call hospice, and they would provide everything we need as far as wheel chair and whatever else..is that saying its the end?? She can't move her left arm, its like its basically dead, she can still walk with assistance but her left foot flops over. My mom is still a young woman she is only 44 years old. And I would also like to know what the end stages of this type of tumor are like? I mean what can we expect if shes going without treatment? The doctor never said how long she has to live so we have no idea. We basically have no idea what to expect with this tumor...so could someone please offer some advice.

brainman · Posted: Fri Jan 18, 2008 11:45 am Post subject: Re: Is it over for my mom?

Oh Nancy, I am so very sorry about your mother's cancer. As you can see in my story (links in signature block), I am a 15 year survivor of a glioma. It did recur in 2005 but surgery, radiation, and chemo took care of it. My glioma was a grade III in 2005. I still have some right sided weakness, trouble speaking, and balance problems.

Has your mother had a genetics test to see if she has the 1p/19q gene deletion? If she has that gene deletion, she is more likely to respond to chemotherapy. I have never heard of Campostar. I took the old gold standard PCV for one year back in 1992-1993 just after I was first diagnosed. But that was certainly not a very "fun" experience.

It sounds like your mother's cancer is more than a grade II if it recurred so quickly.

You and your mother are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Prayingforamiracle · New User Joined: 17 Jan 2008 Posts: 7 Location: augusta GA

I have never heard them mention the 1p/19q gene deletion, I just read about it on here, reading stories and stuff. What is that?? Also is this type of tumor genetic if you know? I'm very happy you had success with chemo and stuff. Yea I don't believe the tumor is a grade 11 obviously if it is growing so fast now. It must be at it's highest grade. She is having trouble with the left side, and her foot is very swollen right now, could that be fluid retention?

Also wanted to add that everytime my moms tumor grew back, it grew in a different location, still close to the same place but not exactly the same place it originally was.

ksplat · Posted: Sun Jan 20, 2008 4:59 pm Post subject: Re: Is it over for my mom?

Hi Nancy
I am very sorry to read about your Mom's condition, my prayers & thoughts are with you. She is such a young person...it is soooo sad. Her current condition sounds very similar to my Bro's!
He is 47 with a GBM IV diagnosed Feb 07. After his 1st resection he was left paralysed down his L side & has been in a wheelchair ever since. He subsequently had follow up surgery in Sep 07. He has been on Temodal since diagnosis (this is the Goldstar chemo for brain tumours). He tried radiation early last year but it didn't go too well & the tumour still grew whilst on radiation. This is when he was having his most severe seizures & had his 1st resection of the tumour. They couldn't remove all of it either as it's on his brainstem. Too risky to remove all of it!
His left foot gets swollen alot now since he hasn't been able to walk & if he keeps his foot elevated the swelling seems to be improved. The swelling is mainly due to the poor circulation in this region. I don't believe it's anything more sinister.
I too agree with Brainman that your Mom's tumour would be a higher grade than what you've been told. My Bro's tumour grows back each time after surgery. Close to the original area too. He is currently fairly stable, although on the last MRI in Dec there was a visible enhancement of the tumour. His next MRI is about 10 days away.
I can understand your Mom's reluctance to pursue further surgery & her decision should be respected. Although, this may not be the path you would choose for her I'm sure you will support whatever treatment she decides upon. Perhaps a change in chemo would be the next step for yr Mom? As I said before Temodal is the GOLD standard chemo but I have also read about AVASTIN being another chemo option for brain tumours. The treatment options should be discussed at length among your family & with your Mom's treating specialist. Are u able to attend yr Mom's appt? Take notes & record your questions so that you are prepared with yr thoughts.
My Bro is prepared to undergo surgery again if & when it's needed & his surgeon knows to go carefully with the surgery so as not to cause any more disability.
Stay in touch with us here. We are a great community, offering support, comfort & advice for fellow sufferer's & their loved ones.
All of us here on this forum are PRAYING FOR A MIRACLE! We pray for a miracle for your Mom too!
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Prayingforamiracle · New User Joined: 17 Jan 2008 Posts: 7 Location: augusta GA

It seems like in just about everyones case that everytime they have surgery the tumor seems to be more agressive and spread out. I don't understand that. I do understand the doctors have to know what kind of tumor it is. But it seems like operation only makes it worse.

My mom had Campostar and Avastin just recently...she cannot do the avastin anymore because her oncologist said it made the tumor bleed so he will not use that with a chemo again. She has had temodor and that didn't do anything. My mom told me lastnight her tumor is a grade 4 so yes its very aggressive and growing rapidly. Thank you for your support and I will continue to update everyone and if anyone can offer anymore info plz do so. Oh also i am sometimes able to attend her appts. But since i have a 2 year old daughter i can't do so at times, but i am telling people to ask all the questions they need to.

brainman · Posted: Mon Jan 21, 2008 2:11 am Post subject: Re: Is it over for my mom?

Hi Nancy, surgery on the brain does sometimes cause problems. However, very often, we surgery is possible, it is the best solution. It really is different from one case to another. In 1992, since it was such a slow growing cancer and the risk was significant, my surgeon recommended to try chemo first and to see if the cancer responded to it. I am fortunate to have the gene deletion and my cancer responded very well to the chemotherapy. However, when it came back in 2005, it was much more aggressive and the risk of not have the surgery out weighed the risk of the surgery. My mother was diagnosed in 1998 and her cancer was so large that surgery was never even offered.

I am sorry that these decisions are not simple. I wish there was enough information for a computer to tell us what the best treatment was for each situation... just plug in the numbers and out comes the answers. Unfortunately, we are not at that point yet.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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