Comments for My Brain Tumor Journey, The Story So Far... http://btstory.info Click on the title at any time to return to the main page. Thu, 17 Jun 2010 13:06:53 +0000 hourly 1 http://wordpress.org/?v=3.0.1 Comment on Guest Book by Berty http://btstory.info/?page_id=27&cpage=1#comment-9186 Berty Thu, 17 Jun 2010 13:06:53 +0000 http://reay.dyndns.org/?page_id=27#comment-9186 I just discovered this site. What remarkably stories. I hope and pray each of you are still fighting your battle and winning. I am taking care of my 74-year-old mother with a stage IV GBM tumor. It was located on her right side in a good area where she had little or no sign that is was there. It was over 5 cm and only her dizziness and confusion was noticed before an MRI revealed the tumor. She had surgery May 9, 2006 and took radiation treatments 30 times immediately afterwards. They placed the glio-wafers around the tumor site during the operation. We felt this has what has helped her survive this long, and prayer. She has been watched carefully since May, and this October the tumor started growing again. They tell us she only has 3 to 5 months to live. She elected to take chemo, with CPT-11 and Avastin. It is a heavy-duty treatment and she has had two treatments so far. They claim this may help with the shrinkage some, but will not reduce it enough to give her quality of life, or much extension of life. She is living with me and we are enjoying her each day. This chemo seems to make her very fatigued. She is sleeping much of the day and night. This is better than some of the other side effects, we could be experiencing. The doctors tell you everything except the little details. I cannot seem to find anything to do with her. She just sits around all day. Nothing interests her anymore. She was reading books all the time and now does not enjoy them. I feel so helpless just watching her everyday. I was hoping someone would enlighten me as to what I should/could expect with her growing tumor. What are some of the next symptoms we will see with her growing tumor? I would like to be prepared for the next steps and plan around it. She has many loved ones and grandchildren who want to be with her and I cannot be sure what will happen next. Will she not recognize her family soon, will she become a different person? I would like to know others stories and how to deal with this dreadful disease. Faith and prayers get us through each day. I just discovered this site. What remarkably stories. I hope and pray each of you are still fighting your battle and winning. I am taking care of my 74-year-old mother with a stage IV GBM tumor. It was located on her right side in a good area where she had little or no sign that is was there. It was over 5 cm and only her dizziness and confusion was noticed before an MRI revealed the tumor. She had surgery May 9, 2006 and took radiation treatments 30 times immediately afterwards. They placed the glio-wafers around the tumor site during the operation. We felt this has what has helped her survive this long, and prayer. She has been watched carefully since May, and this October the tumor started growing again. They tell us she only has 3 to 5 months to live. She elected to take chemo, with CPT-11 and Avastin. It is a heavy-duty treatment and she has had two treatments so far. They claim this may help with the shrinkage some, but will not reduce it enough to give her quality of life, or much extension of life. She is living with me and we are enjoying her each day. This chemo seems to make her very fatigued. She is sleeping much of the day and night. This is better than some of the other side effects, we could be experiencing. The doctors tell you everything except the little details. I cannot seem to find anything to do with her. She just sits around all day. Nothing interests her anymore. She was reading books all the time and now does not enjoy them. I feel so helpless just watching her everyday. I was hoping someone would enlighten me as to what I should/could expect with her growing tumor. What are some of the next symptoms we will see with her growing tumor? I would like to be prepared for the next steps and plan around it. She has many loved ones and grandchildren who want to be with her and I cannot be sure what will happen next. Will she not recognize her family soon, will she become a different person? I would like to know others stories and how to deal with this dreadful disease. Faith and prayers get us through each day.

]]> Comment on Well I guess it’s an annual update! by Administrator http://btstory.info/?p=39&cpage=1#comment-9128 Administrator Tue, 13 Apr 2010 03:11:23 +0000 http://btstory.info/?p=39#comment-9128 Just fine thank you. No symptoms to speak of, and never having had a seizure, life is pretty much normal. Just fine thank you. No symptoms to speak of, and never having had a seizure, life is pretty much normal.

]]> Comment on Well I guess it’s an annual update! by amber http://btstory.info/?p=39&cpage=1#comment-9127 amber Mon, 12 Apr 2010 17:44:17 +0000 http://btstory.info/?p=39#comment-9127 how are you doing? how are you doing?

]]> Comment on Well I guess it’s an annual update! by anita yarbrough http://btstory.info/?p=39&cpage=1#comment-9119 anita yarbrough Mon, 22 Mar 2010 23:58:07 +0000 http://btstory.info/?p=39#comment-9119 Congrats! This is uplifting. we are six years out and good. I'm so happy to hear about your new dx!!! Live, Love, Laugh......:) Your labradoodles are beautiful....and your farmhouse is too!!!! Congrats! This is uplifting. we are six years out and good. I’m so happy to hear about your new dx!!! Live, Love, Laugh……:)

Your labradoodles are beautiful….and your farmhouse is too!!!!

]]> Comment on A new diagnosis by Dorothy Neisen http://btstory.info/?p=37&cpage=1#comment-9114 Dorothy Neisen Sat, 02 Jan 2010 21:05:50 +0000 http://btstory.info/?p=37#comment-9114 My husband was diagnosed in 1996 with a pure oligodendroglioma. He wouldn't alow them to remove it, but opted for just treating his seizures which were awful. He got relief from the worst of the seizures with medication and today is stable.He still has mild auras once a month, and some other side effects but he is coping. He has an MRI every 6-12 months to monitor the tumor which has grown very little in the last 13 years. He doctors with the Veterans Hospt.in Fargo ND and Mpls.. I try keep an eye on the progress of new treatments .Weknow this thing could grow and need to be addressed at any time. As long as he can fuction reasonably normal, he will continue as he has. Good luck to you, and have a good New Year. My husband was diagnosed in 1996 with a pure oligodendroglioma. He wouldn’t alow them to remove it, but opted for just treating his seizures which were awful. He got relief from the worst of the seizures with medication and today is stable.He still has mild auras once a month, and some other side effects but he is coping. He has an MRI every 6-12 months to monitor the tumor which has grown very little in the last 13 years. He doctors with the Veterans Hospt.in Fargo ND and Mpls..
I try keep an eye on the progress of new treatments .Weknow this thing could grow and need to be addressed at any time.
As long as he can fuction reasonably normal, he will continue as he has.
Good luck to you, and have a good New Year.

]]> Comment on A new diagnosis by Ahmad Reyaz http://btstory.info/?p=37&cpage=1#comment-9112 Ahmad Reyaz Wed, 30 Sep 2009 03:02:35 +0000 http://btstory.info/?p=37#comment-9112 You are the real model of hope and positivity,which is so essential to fight this malady. My son at the age of 25 has been diagnosed with Level 3 Glioma. I am very positive and so is he.The only problem ,I see is that thru the internet he has been fixated on the influence of diet on the tumor.So he eats very litttle. Otherwise he is in great spirits. You are the real model of hope and positivity,which is so essential to fight this malady.

My son at the age of 25 has been diagnosed with Level 3 Glioma. I am very positive and so is he.The only problem ,I see is that thru the internet he has been fixated on the influence of diet on the tumor.So he eats very litttle.

Otherwise he is in great spirits.

]]> Comment on Moving farther away (or not) by Natalya http://btstory.info/?p=38&cpage=1#comment-9111 Natalya Wed, 02 Sep 2009 19:04:08 +0000 http://btstory.info/?p=38#comment-9111 Hi John, How are you? Firstly I would like to congratulate you on reaching 11 years from diagnosis, this is wonderful to hear! It is also great that you have continued to write your story here. Secondly, I run a website here in the UK providing information and support to anyone affected by a high grade brain tumour and on this site we have a 'Stories of Hope' section, I was wondering if you would consider allowing us to use your story on our website? Please contact me on the email address I have provided if you would like to talk about this in further details with me. Our website is currently offline but will be back up and running tonight or tomorrow morning if you would like to take a look before getting back to me. I look forward to hearing from you soon. Your BT Buddy Natalya Hi John,

How are you?

Firstly I would like to congratulate you on reaching 11 years from diagnosis, this is wonderful to hear! It is also great that you have continued to write your story here.

Secondly, I run a website here in the UK providing information and support to anyone affected by a high grade brain tumour and on this site we have a ‘Stories of Hope’ section, I was wondering if you would consider allowing us to use your story on our website? Please contact me on the email address I have provided if you would like to talk about this in further details with me.

Our website is currently offline but will be back up and running tonight or tomorrow morning if you would like to take a look before getting back to me.

I look forward to hearing from you soon.

Your BT Buddy

Natalya

]]> Comment on A new diagnosis by sarah west http://btstory.info/?p=37&cpage=1#comment-9109 sarah west Sat, 29 Aug 2009 10:09:22 +0000 http://btstory.info/?p=37#comment-9109 Thanks for your story. I have 41 yearold son in UK with an oligo iii diagnosed in Oct 2007. It won't behave and lie down like yours, but he is still well and working. I'll keep watching!! Thanks for your story. I have 41 yearold son in UK with an oligo iii diagnosed in Oct 2007. It won’t behave and lie down like yours, but he is still well and working. I’ll keep watching!!

]]> Comment on A new diagnosis by Vicky Masucci http://btstory.info/?p=37&cpage=1#comment-9108 Vicky Masucci Wed, 26 Aug 2009 19:00:04 +0000 http://btstory.info/?p=37#comment-9108 Hi there John. Just wanted to let you know how great it is to hear your story. We're just starting our journey - my 20 year old son has recently been diagnosed with a Grade 2 Oligoastrocytoma. His surgery was performed by Doctor Perrin and he has had a consultation with Dr. Mason at PHM, which is why I am so drawn to your story. I pray that our son's outcome is as positive as yours has been. I hope that you are still doing well, as I see that you haven't posted for a while. Thanks for the inspiration and God bless. Take care. Vicky Hi there John.

Just wanted to let you know how great it is to hear your story. We’re just starting our journey – my 20 year old son has recently been diagnosed with a Grade 2 Oligoastrocytoma. His surgery was performed by Doctor Perrin and he has had a consultation with Dr. Mason at PHM, which is why I am so drawn to your story. I pray that our son’s outcome is as positive as yours has been.

I hope that you are still doing well, as I see that you haven’t posted for a while. Thanks for the inspiration and God bless.

Take care.

Vicky

]]> Comment on A new diagnosis by Pamela Fraser http://btstory.info/?p=37&cpage=1#comment-9105 Pamela Fraser Tue, 11 Aug 2009 20:59:57 +0000 http://btstory.info/?p=37#comment-9105 Just read your story. WOW I live in Bowmanville and my Dad was diagnosed with brain tumour yesterday from Dr Roy at Brooklin Clinic. WE have appt with Dr Perrin next Tuesday at 8am so I was doing research. My sister and her husband are coming into visit us tomorrow from Quinte where they have a small winery in Hillier, thought you may have moved around there too????? I LOVE the country!!!!!!!!! Glad to hear you are ok. My Dad is almost 80 and we have been planning a big party Aug 22, to celebrate his and Mom's Bday, she's 80 Sept 25. his March 19, next yr. We are trying to decide if we should keep party on, he says yes so far and I have been putting together a few photo albums as gifts for all to enjoy. Have family driving in from USA and Montreal. Let me know how you are and any advise for us, I have been staying at folks condo on lake in Whitby Sailwinds for last 2 wks. Take care Pamela PS tumour in left frontal lobe, suppose to be good area for access??? Niece is MBA physio. and worked with patients at ST Mikes after brain surgery etc. Now at Trent U clinic. Just read your story. WOW I live in Bowmanville and my Dad was diagnosed with brain tumour yesterday from Dr Roy at Brooklin Clinic.
WE have appt with Dr Perrin next Tuesday at 8am so I was doing research.
My sister and her husband are coming into visit us tomorrow from Quinte where they have a small winery in Hillier, thought you may have moved around there too????? I LOVE the country!!!!!!!!!

Glad to hear you are ok. My Dad is almost 80 and we have been planning a big party Aug 22, to celebrate his and Mom’s Bday, she’s 80 Sept 25. his March 19, next yr. We are trying to decide if we should keep party on, he says yes so far and I have been putting together a few photo albums as gifts for all to enjoy. Have family driving in from USA and Montreal.

Let me know how you are and any advise for us, I have been staying at folks condo on lake in Whitby Sailwinds for last 2 wks.

Take care
Pamela

PS tumour in left frontal lobe, suppose to be good area for access???
Niece is MBA physio. and worked with patients at ST Mikes after brain surgery etc. Now at Trent U clinic.

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