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traceysharon
Regular
Joined: 15 Apr 2008
Posts: 11
Location: Sydney, Australia
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 Posted: Tue Apr 15, 2008 11:55 pm Post subject: Where to from here... |
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A brief history...
My husband Patrick was diagnosed last July (2007) with a Grade III Oligoastrocytoma. He had surgery, and about 80% removed. This was followed by 30 out of 33 proposed sessions of radiotherapy. The swelling to his brain, and consequent sife effects were so bad he did not have the last three sessions.
Chemotherapy was started around late November/early December - Temodal 5 days out of every month.
A recent MRI showed growth. A PET scan on 14 April showed tumour is active. We see the chemo dr tomorrow.
In the last few days I have seen significant deterioration in the left hand side (arm particularly, but also leg). Chemo dr suggests we also consider further surgery, and we have an appointment Monday with the Neuro surgeon.
Pat is terrified of further surgery BUT if the gold standard of Temodal has not stopped this tumour in its tracks, is any other chemo type going to be any better?
We are all so scared at the moment, it appears we have run out of options so quickly.
Your feedback would be greatly appreciated. Does anyone else have any positive chemo stories if Temodal hasn't done the job?
_________________
Tracey, Wife of Patrick
Diagnosed July 2007 with Oligoastrocytoma Grade III
Resection 18 July 2007
30/33 radiotherapy treatments
5 months of Temodal (5/23)
Started Carboplatin/Etoposide March 2008 - continued for 3 cycles
1 IV of Avastin on 15 May 2008
2nd debulking 26 June 2008 |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3790
Location: Tennessee
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| Posted: Wed Apr 16, 2008 12:27 am Post subject: Re: Where to from here... |
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Tracy, I am so very sorry about Patrick's cancer. As you can see in my story, I am a long term survivor of a glioma grade II that recurred in 2005 as a grade III. I did not take Temodal for my chemo. Instead, I took the previous gold standard, PVC. Do you know is your husband has the 1p/19q gene deletion? People with that deletion tend to respond better to PCV. It is at least worth asking your husband's medical team about.
You and your husband are in my thoughts and prayers.
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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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traceysharon
Regular
Joined: 15 Apr 2008
Posts: 11
Location: Sydney, Australia
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| Posted: Wed Apr 16, 2008 1:46 am Post subject: where to from here... |
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Jim thanks for your quick response.
No, unfortunately Pat does not have the loss of 1p 19q alleles, so we know that this means he is less likely to respond favourably to chemotherapy.
Can you describe the regime for your PCV - how long, what dosage, side effects etc?
Thanks again
Tracey
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Tracey, Wife of Patrick
Diagnosed July 2007 with Oligoastrocytoma Grade III
Resection 18 July 2007
30/33 radiotherapy treatments
5 months of Temodal (5/23)
Started Carboplatin/Etoposide March 2008 - continued for 3 cycles
1 IV of Avastin on 15 May 2008
2nd debulking 26 June 2008 |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3790
Location: Tennessee
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| Posted: Wed Apr 16, 2008 2:17 pm Post subject: Re: Where to from here... |
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Yes, gladly. The PCV (sorry for the previous mistake  ) regime is actually made of three components given on a 6 week cycle:
P= Procarbazine is a white pill taken on days 8-14 of the cycle
C = CCNU (trade name Lomustine) is a big pill taken on day 1 of the cycle
V= Vincristine (trade name Oncovin) is given by IV on day 8.
After the third week (after taking the last Procarbazine), the patient has to take a 3 week break because the chemo is so toxic. I had some nausea but most of my problems were due to the suppression of my bone marrow's production of red and white blood cells. The Vincristine was stopped after the second cycle because it was causing neuropathy to my toes.
_________________
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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ksplat
Moderator
Joined: 26 Apr 2007
Posts: 513
Location: Brisbane, Australia
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| Posted: Wed Apr 16, 2008 10:05 pm Post subject: Re: Where to from here... |
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Dear Tracey
I am sorry to hear about your Pat's continuing problems with his brain tumour. I am also glad you found this forum which has been a great comfort & support to me since my Bro was diagnosed with a GBMIV last Feb 07.
My Bro hasn't had much success with Temodal either. He took this chemo for the first 12mths (5 days on 25 days off in the latter part of 2007) but the blasted tumour grew back each time. Last surgery in Feb this year the surgeon placed Gliadel (chemo) wafers in the tumour bed. My Bro is waiting for his next MRI at the end of Apr to see if the wafers have been more beneficial. My Bro also had some radiation early on but it was stopped after 4.5 wks due to swelling of the brain & seizures & side effects.
I know you've heard of Prof Chris O'Brien in Aust & I believe his treatment last year for his GBMIV was a tri chemo approach. Although I haven't been able to find out the names of the drugs he used I know he was on an IV drug for 4 days & then was taking 2 different chemo pills for the rest of the month. He did this for 6mths & by Nov 07, there was no tumour visible on the MRI. He did have debulking surgery last May prior to chemo.
You & I have talked on another forum before & I won't rabble on about our Mark's surgeries & history.
I do hope you are able to seek another chemo treatment for Patrick, & the next visit with the ONC is positive. Remain hopeful at all times. I would be happy to talk further anytime, so please feel free to PM me for any clarification.
My prayers & thoughts are with you.
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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traceysharon
Regular
Joined: 15 Apr 2008
Posts: 11
Location: Sydney, Australia
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| Posted: Thu Apr 17, 2008 1:13 am Post subject: where to from here... |
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Thanks Jim and Angie for your responses.
We saw the chemo dr today. He has recommended we see the neurosurgeon just to make sure that further surgery is not an option (which he thinks it isn't because of the depth of the tumour). We will do this Monday.
Assuming surgery is not an option, Pat will start on a combined chemo approach of Carboplatin and Etoposide. The Carboplatin is given as an IV infusion over 30-60 minutes. The Etoposide is given orally as a capsule. The Iv is given on day 1, and the following 11 days you take the capsule. It must be fairly hard on the bloods, as blood test follow fortnightly.
Does anyone have any experience with these drugs, in terms of effectiveness/side effects?
_________________
Tracey, Wife of Patrick
Diagnosed July 2007 with Oligoastrocytoma Grade III
Resection 18 July 2007
30/33 radiotherapy treatments
5 months of Temodal (5/23)
Started Carboplatin/Etoposide March 2008 - continued for 3 cycles
1 IV of Avastin on 15 May 2008
2nd debulking 26 June 2008 |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3790
Location: Tennessee
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| Posted: Thu Apr 17, 2008 9:32 am Post subject: Re: Where to from here... |
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Carboplatin is a rather common chemotherapy agent. However, I have not heard of it being used for primary brain cancers. Etoposide is occasionally used for primary brain cancers. I just do not understand why they are not trying PCV since for so many years it was the gold standard. I guess that is why they get paid the big bucks  .
_________________
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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Aimster
Regular
Joined: 03 Jan 2008
Posts: 38
Location: Nebraska
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| Posted: Thu Apr 17, 2008 9:41 am Post subject: Re: Where to from here... |
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Tracey, I am so sorry that you and your husband are dealing with this.
You might want to check out 38lemon.com. The brain tumor patient who created this site is currently undergoing a chemo regimen that includes carboplatin.
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Amy (39)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526 |
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