Amazing Response To Temodar??!!

Hi everyone

Hope you don't mind but I just wondered if it was 'normal' whatever that word means ... to respond really well to Temodar/Temezolomide.  My mum is on her 3rd round and has had absolutely no sickness even though she's 57 and not well as this is her second brain tumour and this one is inoperable ... she was paralysed down her left side and literally bed ridden and last month I thought I was losing her .... she couldn't even stay compus mentus sat in her chair.  Now she's walking with a frame, her speech is more coherent than mine (lol), she's dancing in bed kicking her feet around, she's getting stronger everyday, she's in extremely high spirits and she quite simply is acting like someone who's ok if you get what I mean.  we're all delighted but I dont' know whether we should not get our hopes up.  You can see mum's history below.  Just wondered what your thoughts are.... I have a guy on here who I like to hear from and Nancy as well ... Chris is the guy ... think he calls himself Chiefnnails - he may pick this up.  He was having an MRI early this month but has been on Temodar for a long time so Chris if you read this it'd be lovely to hear how you're doing.  Anyway, I don't know if all the supplements are helping mum too but something is!  Honestly the differenc is amazing but I'm scared that she'll get her hopes up too much; that we all will and it'll be shortlived you know what I mean...

Clare
d /o Judy 57 y/o
March1995 right lobe tennis ball sized oli with headaches,
seizures ... resected, full whack radiotherapy then no recurrence or
treatment for 12 YEARS!
Sep 2007 After a couple of years 'clumsy' falls dx 3cm/3cm inoperable astrocytoma Grade II with left sided paralysis, 
Oct 2007 Temodar 5 days then stopped as opted for Healer and supplements
November 2007 walking again
December 2007 clear MRI December, but by end December problem walking again and becoming very weak
January 2008 fell broke spine and very big with lymph swelling, left sided
paralysis again, now in hospital confined to bed
March 2008 MRI, tumour back 4cm/4cm, 
April 2008  3rd round of chemo 5 days/21, can move left side again and balance even though has been bed ridden for 3 months while spine healed and decadron muscle atrophy!  and told would never walk again

Supplements: Poly-MVA, Shark Liver Oil, Astragalus, Green Tea Extract, lots of dark red/black grapes, Noni juice, Fish Oil, Curcumin, Barley  pills, Bromelain, Beta Glucan .... and now prescribed anti-depressant that causes brain tumour to self-digest - Clopramine.  Will soon start on Boswellic Acids and have just bought PSK
mushroom extract, and thinking about doing Ruta 6
protocol

On 4/24/2008 clarejoanne wrote:

Hi everyone

Hope you don't mind but I just wondered if it was 'normal' whatever that word means ... to respond really well to Temodar/Temezolomide.  My mum is on her 3rd round and has had absolutely no sickness even though she's 57 and not well as this is her second brain tumour and this one is inoperable ... she was paralysed down her left side and literally bed ridden and last month I thought I was losing her .... she couldn't even stay compus mentus sat in her chair.  Now she's walking with a frame, her speech is more coherent than mine (lol), she's dancing in bed kicking her feet around, she's getting stronger everyday, she's in extremely high spirits and she quite simply is acting like someone who's ok if you get what I mean.  we're all delighted but I dont' know whether we should not get our hopes up.  You can see mum's history below.  Just wondered what your thoughts are.... I have a guy on here who I like to hear from and Nancy as well ... Chris is the guy ... think he calls himself Chiefnnails - he may pick this up.  He was having an MRI early this month but has been on Temodar for a long time so Chris if you read this it'd be lovely to hear how you're doing.  Anyway, I don't know if all the supplements are helping mum too but something is!  Honestly the differenc is amazing but I'm scared that she'll get her hopes up too much; that we all will and it'll be shortlived you know what I mean...

Clare
d /o Judy 57 y/o
March1995 right lobe tennis ball sized oli with headaches,
seizures ... resected, full whack radiotherapy then no recurrence or
treatment for 12 YEARS!
Sep 2007 After a couple of years 'clumsy' falls dx 3cm/3cm inoperable astrocytoma Grade II with left sided paralysis, 
Oct 2007 Temodar 5 days then stopped as opted for Healer and supplements
November 2007 walking again
December 2007 clear MRI December, but by end December problem walking again and becoming very weak
January 2008 fell broke spine and very big with lymph swelling, left sided
paralysis again, now in hospital confined to bed
March 2008 MRI, tumour back 4cm/4cm, 
April 2008  3rd round of chemo 5 days/21, can move left side again and balance even though has been bed ridden for 3 months while spine healed and decadron muscle atrophy!  and told would never walk again

Supplements: Poly-MVA, Shark Liver Oil, Astragalus, Green Tea Extract, lots of dark red/black grapes, Noni juice, Fish Oil, Curcumin, Barley  pills, Bromelain, Beta Glucan .... and now prescribed anti-depressant that causes brain tumour to self-digest - Clopramine.  Will soon start on Boswellic Acids and have just bought PSK
mushroom extract, and thinking about doing Ruta 6
protocol

 

I should just reiterate that she had 1st round of temodar for 5 day in oct 07 then 2nd round in middle March 08, 3rd round just finished now (24th April 08).

Clare

Hi Clare,

 Not sure I can help you with the answers you are looking for.

I was dx with an oligodendroglioma II in Nov. '06, partial resection and I am now on my 17th round of Temodar. I have had stable MRI's since the surgery and receive one every 2 months. I do have simple partial seizures, but that activity is lessening over the past 3 months. I take Keppra (1,500 mgs 2x's per day) for the seizures.

 I get weak when I am on the Temodar, headaches, body aches, nausea...flu like symptoms. Some cycles are worse than others...this one being one of the better ones. Usually within 2-3 days of finishing the cycle, these symptoms subside or disappear. My oncologist has me on this treatment for 24 full months, which means I will be going thru Nov. of this year and then on to a maintance dosage.

I am 54 years old, have returned to work part-time and live life as fully as I can each day.

My doctors feel that I am having a great response to the temodar.

I pray for the best for your Mom and you. Keep up the fight!

If you would like to, send me a private message and feel free to ask me more questions.

Blessings to all!

Kathy

Hi Clare -- I'm happy to hear your mum is making progress and the the Temodar is working for her.  My husband just finished is 5th 5/23 cycle and so far it's been working great.  We just past the eight month mark since diagnosis.  Our next MRI is next week and the anxiety is starting, but my husband is doing great right now, it truly feels like we 'almost' have our normal life back.  I never thought we would, and don't know how long it will last, but right now, life is pretty good and I'm maintaining hope.

The biggest complaint he has during his Temodar cycle is feeling a bit more weak and having constipation (that's from the anti-nausea drug he's on, Zofran) -- we're trying out different things for the latter each time and hopefully will  come across a combination that works.  He had a bad rash with the first Temodar cycle, and now gets a bit itchy with a less severe rash, and Benadryl helps with this.  His blood counts have remained normal throughout.

Other than that, he's golfing 2-3 days a week, driving, working in the yard, doing all the things he did before.  And his appetite is now back and he's gaining weight.

Take care and my thoughts and prayers are with you and your mum for continued progress.

 Nancy

**husband dx 8/07 GBM, surgery, 7-weeks IMRT radiation/Temodar, currently on 5/23 Temodar, MRI's good 

On 4/24/2008 kathye wrote:

Hi Clare,

 Not sure I can help you with the answers you are looking for.

I was dx with an oligodendroglioma II in Nov. '06, partial resection and I am now on my 17th round of Temodar. I have had stable MRI's since the surgery and receive one every 2 months. I do have simple partial seizures, but that activity is lessening over the past 3 months. I take Keppra (1,500 mgs 2x's per day) for the seizures.

 I get weak when I am on the Temodar, headaches, body aches, nausea...flu like symptoms. Some cycles are worse than others...this one being one of the better ones. Usually within 2-3 days of finishing the cycle, these symptoms subside or disappear. My oncologist has me on this treatment for 24 full months, which means I will be going thru Nov. of this year and then on to a maintance dosage.

I am 54 years old, have returned to work part-time and live life as fully as I can each day.

My doctors feel that I am having a great response to the temodar.

I pray for the best for your Mom and you. Keep up the fight!

If you would like to, send me a private message and feel free to ask me more questions.

Blessings to all!

Kathy

kathy  I to had a oligodengiolmabut i had bits of astrocitoma with it had it out in  98 and no troble till this year the astro started acting up  so back in for a total removal again and now they are doing the radiation and will do the tremodar for about a year i think he said ....iam a llittle scared as i read the blogs in here as i had none of this stuff before and had no troble after the first operation at all except i could not go back to my job loading truck with the fork lift and by the time i could drive again the job had closed down so i just started cleaning homes for people to try to make ends meet  for a while and feel like i could do something i was older when i got this nasty little thing i still had young children at home though 8-10-18=20-iam glad i made it through without any thing then God works in strange ways iam too tired now to start running after kids in there teen years  I am verry lucky my husband is home to help me recover as he is retired now so i dont have to worry about rides and things like that iam verry lucky how some of the people stay so optimistic iam generaly an up person but in here is where i can tell how i feel with out making my husband feel sad or my mother hear something iam feeling that would hurt her i think this is a good venting place where your felling s can get out on a bad day without hurting your wonderful caregivers i hope it does not do harm i am sure everyone feels mad sad overthink things  reed to much into what a look means from a kid i dont know howmany have teans but it seems like ive had kids forever which is great when your feeling great and can go places and have fun but sometimes it gets a little much after 5 times around wheres your homewok -i should have tapes for all the times ive said bring out your dirty cloths  iam sick of being the monster you know well that s the soap for today as the stomach turns lol     peace to you all   pbh