Scaring on my brain.

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Scaring on my brain.

by AussieMarg on Sat Apr 06, 2019 07:21 AM

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My brain is Anaplastic oligodrendroglioma Stage 3 brain cancer. I refused any chemotherapy as I have severe chemical sensitivities which always result in  convulsions.Io opted for fifteen double doses of radiationtherapyi instead. I spents six months in a High Care level nursing hometor recover. I havebeenf fairly fine up until the beginning of this year. When I received the last MRI brain scan results on the 22nd February it showed extensive scaring covering allofmybbrain.I  had been losings strengthandb balance for a few monthsbeforehand.Willie mywWheelie Walker is always by mmy side. My question is has anyone else encountered this problem with their brain cancery? 

RE: Scaring on my brain.

by stevew7000 on Mon Apr 08, 2019 04:14 PM

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I don't know, but I wonder if the chemo would have been more gentle on you.

RE: Scaring on my brain.

by AussieMarg on Mon Apr 08, 2019 10:30 PM

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On Apr 08, 2019 4:14 PM stevew7000 wrote:

I don't know, but I wonder if the chemo would have been more gentle on you.

No way Hozay would any sort of chemotherapy been more gentle on me. IF I had accepted chemo pills as well as the THIRTY single doses of radiation  I would most likely be dead by now AND immediately after treatment my actual quality of life would have been MUCH less. I wasn't able to have any stronger chemotherapy because ALL  chemicals make me have severe convulsions to the extent that I have been sitting on achairc aftera accidentlybbreathingi in fuelfumesl and l have busted the cross arm between the chair legs. Years ago when I was in a wheelchair, I busted the frame of my alloy wheel chair.

Aussie Marg. 

RE: Scaring on my brain.

by AussieMarg on Tue Apr 09, 2019 07:11 AM

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On Apr 08, 2019 4:14 PM stevew7000 wrote:

I don't know, but I wonder if the chemo would have been more gentle on you.

How on earth could chemotherapy be "more gentle" than the radiation treatment whenever I have already explained what happened to me when I'm exposed harsh chemicals??? The oncologist emphasised the IMPORTANCE of the radiation treatment over the chemotherapy as he told me "the chemotherapy is to mop up any left over brain cancer cells." We all know that I made the correct descion to opt out of the chemo. For the past THREE years, EVERY ONE of my specialists has been amazed at how well I have been doing. Last September  I spent the majority of the month touring beautiful New Zealand with my youngest son . This year I have been going down hill fast.

Sincerely Aussie Marg. 

RE: Scaring on my brain.

by bizzerbee on Tue Apr 16, 2019 08:12 PM

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Have you asked about Avaistin or would that cause the same reaction to other chemicals. It is not chemo persay but it is a drug that is delivered by an IV. It is one of the best drugs out there for treating sysmptoms that are causeing swelling and scaring in the brain. I do not know what kind of issue you have that makes you have convulsions so I do not if this drug would work but I do know that is has helped many others dealing with similar issues. What has your team reccomended that you do? 

RE: Scaring on my brain.

by AussieMarg on Wed Apr 17, 2019 10:11 PM

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On Apr 16, 2019 8:12 PM bizzerbee wrote:

Have you asked about Avaistin or would that cause the same reaction to other chemicals. It is not chemo persay but it is a drug that is delivered by an IV. It is one of the best drugs out there for treating sysmptoms that are causeing swelling and scaring in the brain. I do not know what kind of issue you have that makes you have convulsions so I do not if this drug would work but I do know that is has helped many others dealing with similar issues. What has your team reccomended that you do? 

I have just read about Avaistin and there's nothing there about brain cancer. There's information on lung, colon and breast cancer including how expensive this particular drug is. I'm a public outpatient at the Princess Alexandra Hospital in Brisbane which is a two hour drive each way from Toowoomba. As a public patient in my state of Queensland, Australia we have to take what we are given drug wise except, I refuse to have chemotherapy because of my severe chemical sensitivities so I had FIFTEEN double doses of radiation therapy instead  I don't even know IF this extremely expensive drug is available in Australia or not. Thank you for your reply.

Sincerely Aussie Marg. 

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