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Oligodendroglioma 2

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Subject: Oligodendroglioma 2
Date: 04/03/2008

I have just received the results from the gene deletion tests, my tumour has gene deletion of the 19q chromosome only.  Has anyone had this type of deletion?  I understand that the most favourable deletions would be 1p and 19q.  I have received the script for temozolomide and will begin treatment as soon as this Monday.

 

Wish me luck

Conrad

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Caregiver
jackiekay
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Subject: RE: Oligodendroglioma 2
Date: 04/03/2008

 

On 4/3/2008 Conrad wrote:

I have just received the results from the gene deletion tests, my tumour has gene deletion of the 19q chromosome only.  Has anyone had this type of deletion?  I understand that the most favourable deletions would be 1p and 19q.  I have received the script for temozolomide and will begin treatment as soon as this Monday.

 

Wish me luck

Conrad


My husband was diagnosed with an oligo 3 in July, '07.  My understanding is the deletions usually indicate that the cancer will be more responsive to the chemo.  My husband has also taken temozolomide.  He did not get a huge tumor regression but he had some.  I have been doubtful that we got a true diagnosis at the time of the first surgery and have always suspected that he may have a GBM or a stage IV oligo.  So much for being the positive wife, but they were only able to take a tiny, tiny biopsy the first time around and his has acted very aggressively.  In the next week we should have a clearer picture of the true nature of the beast because he had a total resection 2 weeks ago.  If you are up to it, I would recommend reading Brain Tumors:  Finding the Ark by Paul M. Zeltzer.  If you can't muddle through it yourself, get your primary sidekick/caretaker to read it for you.  It is packed with information that will be vital for you & anyone involved in your care to know.  He also wrote a second book that deals with end of life issues, but I am sure you don't need to go there.  I just didn't want you to end up with the wrong book.  The second one is a real downer when you are fighting the uphill battle.  My best wishes to you.

Jackiekay

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jackiekay
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Subject: RE: Oligodendroglioma 2
Date: 04/03/2008

Conrad

Just another thought...or two.  I know you hear such terrible things about the chemo experience.  Just for the record, my husband has never been sick from the temozolomide.  As a matter of fact, he always says he feels better the week he takes it.  He has had some skin issues that were taken care of by using Hydrisonol cream which you can ask your pharmacist for.  It is very expensive for lotion but it has been a lifesaver.  His skin started breaking down from the chemo to the point where his pants literally rubbed his skin off.  He started using the lotion and viola, his skin was back.  I also bought him some "butterfleece" pants from the Sahalie catalog that he wears night and day because they protect his skin.

 As for the book I mentioned in the previous post, make sure you read the section on how to organize and keep track of your medical records.  I bought a notebook right away and began tracking everything.  Along the way we've had a few ambulance trips to the ER and my notebook has saved me when my brain has stopped functioning.  It has all vital info in it including dr's name and numbers, all the MRI's he had, a log of all dr visits and important medical events such as surgeries, seizures, and so on.

Subject: RE: Oligodendroglioma 2
Date: 04/03/2008

Thanks for the advise Jackie, we took it. I had my wife pick up a hardcover book.  She comes with me to all my apps and records everything.  She is great.

Thanks for the heads up on the skin care.  I am going to find out soon enough what kind of reactions I will get.  Good luck to you and your husband. Keep in touch.

 

Conrad

Subject: RE: Oligodendroglioma 2
Date: 04/03/2008

Conrad,

 I do wish you the best of luck.

 I had partial resection and dx of oligo II in Nov. 06. I both of the deletions and have had 16 rounds (5/23) Temador. My latest MRI from this week shows stability, no progression.

God's blessings to you.

Kathy

Subject: RE: Oligodendroglioma 2
Date: 04/04/2008

 Conrad,

 Remember that the Pathology is one persons evaluation. The next person my see something different. This has been my case, never the less, after 18 rnds. of Temador mine appears to be in remission. Had a clean scan this past Monday.

Keep the faith brother! Good things ahead, be positive, live life!

God Bless.   Chris 

Subject: RE: Oligodendroglioma 2
Date: 04/04/2008

 

On 4/4/2008 chefnnails wrote:

 Conrad,

 Remember that the Pathology is one persons evaluation. The next person my see something different. This has been my case, never the less, after 18 rnds. of Temador mine appears to be in remission. Had a clean scan this past Monday.I had the same deletions as you.

Keep the faith brother! Good things ahead, be positive, live life!

God Bless.   Chris 


 

Conrad, I had the same deletions as you. 
Subject: RE: Oligodendroglioma 2
Date: 04/04/2008

 

On 4/3/2008 Conrad wrote:

I have just received the results from the gene deletion tests, my tumour has gene deletion of the 19q chromosome only.  Has anyone had this type of deletion?  I understand that the most favourable deletions would be 1p and 19q.  I have received the script for temozolomide and will begin treatment as soon as this Monday.

 

Wish me luck

Conrad

Conrad,

Sorry about last nights posting. It was late and I was very tired. I also have Oligo. Let's talk,(

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

), May be I can help . I have survived 10 years.

Chris 

 

Subject: RE: Oligodendroglioma 2
Date: 04/04/2008

Hi Kathy, I very happy to hear that your tumour has not progressed.  I hope that you start seeing it shrink soon.  Stay strong and keep fighting.

Conrad

Caregiver
Caregiver
clarejoanne
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Subject: Low Platelets/Temodar Dosage - Chris
Date: 05/13/2008

 

On 4/4/2008 chefnnails wrote:

 Conrad,

 Remember that the Pathology is one persons evaluation. The next person my see something different. This has been my case, never the less, after 18 rnds. of Temador mine appears to be in remission. Had a clean scan this past Monday.

Keep the faith brother! Good things ahead, be positive, live life!

God Bless.   Chris 


 

Chris

Hope you're OK.  Think of you and would like to know how you're doing as I've as you know been particularly interested in your story and how you're doing as it's so similar to my mum's (your tumour being inoperable/similar grade) and your attitude being similar to mum's too! :)

She's had her 3rd round of temodar - you'll see her progress below I'm so happy.  As you know you responded to my last post about her 'amazing' response (amazing when you think they thought she was 'going' in March and was paralysed and would never walk again and is now walking with a cane ...)  Anyway - I wondered if you could give me some advice.  She has just had her blood counts back and she's low on platelets (82) so they want to wait before they give her anymore Temodar (she's on 400mg).  i wanted to ask you a couple of things.  What dosage are you on and do you know about low platelets and what you did/do to combat them?  Also (and this is just me asking, don't feel you have to ...) but I tell my mum about you and wondered if you'd email me with your history and 'story' so that she can properly read it.  It comforts her to know there are others that are like her and going through what she's going through.  Most people can at least have their tumour(s) resected.  You've been so brave and positive throughout this like mum has and I think she'd love to read something from you.  As would I! :) 

 It is warm and sunny here in England and we feel so blessed.

Clare x

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