10 years and still struggling...

tanya · New User Joined: 16 Jul 2009 Posts: 1

I am new to this - I have never chatted on a forum before, but I here I go. I was diagnosed with an astrocytoma stage 1, ten years ago. I had a biopsy (too deeply embedded to remove the tumor). I had radiation treatment which showed very good results and the tumor growth stayed under control for around 4 years. It showed some signs of growth, so I went on an oral chemo - themodol (5 days a week) for about 16 months. Tolerated it very well and once again things were controlled. About 2 years later however, some growth appeared again, so I went on a new regime of temodol (lower dose, everyday) for 15 months. My lymphyocytes took a hard hit and dropped really low - had to go on an antibiotic as a preventive measure - had to see an infectious diseases doctor to find an antibiotic I could tolerate. Started to grow again. Changed to a new chemo called etoposide. It messed up my blood counts continuously. After two months, my tumor had grown again. Then decided to try tamoxifen. Tolerated it very well - besides a couple of headaches when I first started taking it, it was a very easy drug to take. However, after two months, there were sections of my MRI that had doubled in size. This drug wasn't working for me. I am now on another oral chemo called CCNU. Just started it a few days ago.

[b]IF ANYONE KNOWS OF ANY ALTERNATIVE CANCER CLINICS OR JUST CANCER CLINICS THAT HAVE EXCELLENT REPUATIONS FOR PRODUCING GREAT RESULTS I WOULD BE SO THANKFUL TO HEAR ABOUT THESE PLACES!!!![/b]

My heart goes out to all of you that have been touched by this dis-ease. Somedays I just want to throw in the towel, but I have to believe and have faith that just around the corner, the greatest drug in the world could be waiting for me.

God bless,
Tanya

kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

Hi Tanya,

Unfortunately, as you have discovered on average 70% of lower grade tumors become anaplastic and regrow; making them histologically a higher grade.

It will be interesting to see how you go on CCNU. I would caution about which alternative treatments you decide on. When I was first diagnosed, well intentioned friends gave me zappers, juicers etc. Often the reason a treatment is alternative is that it has not been subject to scientific analysis and those selling it can make unsubstantiated claims without fear of the FDA or similar. The testimonials look convincing until you realise you can't verify their authenticity.

I realize that you have been through a lot but it is important to stay focused on treatments that are backed by research. The best option if you have the money is to seek out a brain tumor treatment center - here is a list http://www.virtualtrials.com/btcenters.cfm. Is gamma knife an option? Can they made a vaccine out of your cells? Is proton therapy an option?

There are still options I believe to explore. It may be that you face ongoing treatment for many years to come. Unfortunately, that is our lot who have this disease. I would like you to think twice before accepting certain non-standard treatments, espcially over the internet. I have read stories of people who have lost everything.

On a brighter note, if you can focus on the simple pleasures in life this can make a real difference. Eating healthily, exercizing, laughter and comedy, spending time with loved ones these things have real and often immediate benefits.

There are health watch dogs and groups available to help you vet treatments. One such resource that I have used is quackwatch.org.

All the best whatever you decide!

brainman

Tanya, first some admin info... I deleted your double post Wink

I am very sorry to hear that your astrocytoma has progressed so quickly Sad

. I was diagnosed with a grade II in 1992 but did not have any recurrence until 2005 when it came back as a grade III.

CCNU is the previous "Gold Standard" treatment for gliomas (before Temodar). I took it in 1992. In fact, other than the biopsy, CCNU (or PCV to be more exact) was the only treatment I received. I am not sure if you are getting the whole PCV or just the "C" (for CCNU) component. I did feel nauseated at least one day per cycle and the treatment devastated my blood cells and immunity. The "V" (for Vincristine) component also caused some peripheral neuropathology so I had to discontinue it after a few cycles. My toes are still numb from it. If you are not receiving all three, you might want to ask you doctor about this.

I hope the CCNU (with or without the other two components) will help you to also live as long as I have Smile

You are in me 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
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile

ennis

keep on believing and hoping that a miracle is round the corner. You have fought for 10 years draw from that and vent your feelings on this forum, everyone understands the tumult of emotions. Keep on posting. Keep on smiling
_________________
live in hope
my story http://cancerforums.net/viewtopic.php?t=11140

	Cancer Forums Forum Index -> Brain Tumors Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others