oligodendroglioma - Low turned to High

Orit · New User Joined: 11 May 2009 Posts: 2 Location: Israel

Hi All,
My name is orit and i am from Israel - so ......sorry ahead for my english.
My tumor discovered in 2004 after 1 year (!) of headache and miss diagnose of my doctor Crying or Very sad

I was inserted to urgent operation which removed most of the tumor. After 2 years I have done another operation which again removed most of the tumor.
Diagnosis from both operations shown – oligodendroglioma grade 2.
No further treatment was given after both operations.
In 2009 Follow up MRI showed that tumor left over's been started to grow in a rate that according to doctors demands treatment.
I was scheduled to radiation treatment (which is the common treatment for such diagnosis) – but since the NEXT MRI showed rapid growth – it was decided to give the combined treatment of Temodal + radiation.
Since No biopsy was taken lastly we don’t have an exact diagnose – only know that grade is higher then 2 for sure now.
I would be happy to get feedbacks from people who gets/got the same treatment. Was it ok for you ? anyone who completed the combined treatment and continued only with temodal courses? how do you deal with side effect : weakness, lack of energy etc...

brainman

Orit, I am very sorry about your cancer. As you can read in my links, I have a long history with gliomas. My last surgery was in 2005 to remove a Oligodendroglioma grade III. I am fortunate that mine has not recurred yet. I have never taken Temodal but I have had the previous "gold standard" chemotherapy and I have had radiation therapy. I had the chemotherapy when I was first diagnosed in 1992. I had the radiation after my surgery in 2005-2006. I did not have any significant problems with my radiation. I only experienced some bald spots where the radiation went into my head. Fortunately, in both cases, I had great employers who helped me through it all.

Hope everything goes well for you also. You are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Roman957 · Regular Joined: 22 Feb 2009 Posts: 27

Hello Orit. My wife was diagnosed with an anaplastic astrocytoma (grade III) last October. After recovering from surgery she began a six week treatment of radiation five times per week and low dose of Temodal seven days per week. I can tell you that she got through that very well. Biggest side effects were some fatigue and of course loss of her hair. Because the temodal was lower dose, she did not experience any significant side effects from that. However, she was also on the steroid dexamethasone and the side effects of that were more of a problem for her including weight gain (especially in the face), mood swings, muscle weakness and joint pain. As the treatment progressed we were able to gradually reduce the level of steroid and I can tell you that now she is finally regaining her former appearance. The steroids main role is to reduce swelling in the brain, which is very important, so the side effects have to be balanced against that. About a month after finishing that cycle, my wife started on Temodal alone on a 5 days on/ 23 days off cycle. In the first round, they doubled the dose from the level taken while on radiation. Main side effects were fatigue, constipation and nausea, although the nausea medication today is very effective for most people. Within a few days after finishing the chemo she began feeling better and enjoyed two good weeks at the end of the month. Due to the fact she had nausea, they kept her at that dose level for the second cycle, with pretty much the same results. On the third cycle, they increased the dose to the maximum allowed for her body weight. In addition to nausea and fatigue, she experienced serious itching which was treated with over the counter antihistamine. The maximum dose depleted her blood platelet levels so we have had to take a couple extra weeks off before starting up again. Overall, I can tell you that while on the chemo for the five days, my wife was very tired and had to nap at least once, sometimes twice every day. But usually within three days or so she would feel better and would be almost "normal" for the last two weeks. This is our experience so far on the radiation/chemo and then chemo only regime. I hope it answers some of your questions. Best of luck to you. You are in my thoughts and prayers
_________________
Roman

Tammy

Hi Orit,,
I have the same tumor as you Oligodendroglioma gr2. I have only ever had a biopsy done in 2007 and on dilantin for seisuzes. Where is your tumor location? Maybe because of the location is why nothing was ever done for me I dont know,,,but soon I will hvae surgery to remove most of it....Good luck with your treatment and looking forward as to hearing from you..
Take care
~Tam~

You never know how strong you are until being strong is all you know!

Orit · New User Joined: 11 May 2009 Posts: 2 Location: Israel

Hi,
First, thanks for you posts. I have read them and it's really encouraged me.
This is very good forum and I am glad I found it.
Well, the Radiation +Temodal passed well and today I am taking only Temodal - this is the 5th course.
Last MRI show Tumor regression and after 6th course I should have another one...i hope the regression will remain.
Also I am on Health food diet...and that's also doing well to my face skin :D

Looking forward - I am thinking Often about your story, Barinman, and it's really gives me hope....

Thanks,
Orit

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