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Post by funnywalk on Nov 23, 2015 6:14:15 GMT -6
Hi group.
Waiting for my 6 monthly MRI, I don't see how the tumour could have done anything except get bigger [judging by increase in symptoms] and I predict that my doctor will offer chemo. I am not convinced that chemo for astrocytoma is worth the suffering involved. And what quality of life would I have, and how many extra months might it give me? I've Googled this and the answers are not encouraging.
I'd be interested to hear anyone's experiences of chemotherapy for SCTs.
Thanks, fw
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Post by peaceandlove on Nov 23, 2015 7:08:32 GMT -6
Hello , I ask you when doctors decide to make chemo or radiotherapy to burn the tumor by radiation and when they make surgery resection?  I still don't know .. Is it related to type of tumor if it is cancerous or no? or it is related to the tumor cannot be resected manually by surgery due to location & complication (critical place which neuromonitoring is preventing to resect) ?? My question may be silly, but it will be appreciated if you can answer me... Peaceandlove.. |
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Post by peaceandlove on Nov 23, 2015 7:08:56 GMT -6
test
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Post by funnywalk on Nov 23, 2015 7:35:48 GMT -6
Hi peaceandlove, sorry was away for a while. I have had 6 months radiotherapy and this has kept the tumour the same size for 3 1/2 years. My tumour could not be resected, see details below in my signature. Thanks, FW
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Post by peaceandlove on Nov 23, 2015 8:35:29 GMT -6
I am 9 month post surgery. My doc say that he removed as much as possible arround like 100%, but I feel his not sure since it was very complicated ganglioglioma grade I. He put in his report total resection and now I have to make MRI. MY pain is still existing. I was hoping it will disappear. I believe if after MRI it will show a left part of the tumor, which it can not be surgically removed and this last is creating the pain, in this case do I will be nominated for a radiotherapy??? (am not saying chemyotherapy)
Please advise if you have knowledge on this. Thanks a lot
Peaceandlove
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Post by funnywalk on Nov 25, 2015 12:01:05 GMT -6
Hi there,
Unfortunately removing the tumour does not always decrease the pain. If your tumour has gone, this is good news. I guess you will be monitored and offered the same treatments if it grows again: surgery, radiotherapy and or chemo.
I took the radiotherapy option and it has kept the tumour the same size for 3 1/2 years.
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Post by peaceandlove on Nov 26, 2015 2:04:20 GMT -6
"" Unfortunately removing the tumor does not always decrease the pain ""
Hello,
I hope doctors will say what you said above, they keep on saying that the pressure on the cord nerves is creating pain and when tumor resected and no more pressure pain will go. I don't know if they really don't know or they pretend this to make surgeries and get benefit.
I don't want to Judge them. God only do....
Peaceandlove
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Post by Ed on Nov 30, 2015 8:15:06 GMT -6
Hi FW, I think, before deciding on chemo treatment, it would be best if you get a second opinion. I would like to recommend two neurosurgeons in Europe that in the past have worked with Dr. Fred Epstein in NY. I have consulted them both and they were very patient and answered all my questions. I think, as an EU citizen, you should be able to seek a treatment in Switzerland or Italy. You should apply for the European Health Insurance Card "An EHIC will enable you to access state-provided healthcare in European Economic Area (EEA) countries and Switzerland at a reduced cost, or sometimes for free. It will cover your treatment until you return to the UK." Dr. Sala’s consultation cost: 145 Euro Francesco Sala, MD, PhD University Hospital Verona <--- This is a state/Public hospital Piazzale Stefani 1 I–37100 Verona, Italy Mail: francesco.sala@univr.it Centre for appointments: +39 045 8124447 ------------------------------------------------- Dr. Kothbauer’s consultation cost: 500 CHF approximately Karl F. Kothbauer, M. D. Chief, Division of Neurosurgery Luzerner Kantonsspital General and Pediatric Neurosurgery Associate Professor, University of Basel CH-6000 Luzern Switzerland Phone: 0041-41-2054504 Fax: 0041-41-2055740 Email: Karl.Kothbauer@luks.ch www.luks.ch--------------------------------------------- For other doctors in Europe: www.neurophysiology.org/board_members-------------------------------------------- Cheers, Ed |
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Post by funnywalk on Dec 10, 2015 8:08:37 GMT -6
Ed, I see I have still not responded to your post. Thank you so much for the helpful contacts. Scan is tomorrow and I feel calm and prepared. Blessings, FW
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Post by pringleman on Dec 12, 2015 22:11:46 GMT -6
Hi Funnywalk,
Sorry to hear that things have been getting worse. I had been wondering how you were getting along.
When my tumour grew back there was a suggestion to use Chemo but in the end the chemo specialist said that it was unlikely to do anything. I got the feeling that they would only use it as a last try.
Did you ever get any secondary opinions on whether it would be possible to operate?
Cheers,
PG
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I still don't know .. Is it related to type of tumor if it is cancerous or no?
