Surgery or no surgery: possible low-grade glioma?

Posted by kate4damian @kate4damian, Jul 24, 2019

Hello,
I was recently diagnosed with a brain tumor. I have seen one specialist. He reports by looking at my MRI only that I have a low grade glioma that can be monitored or I can get a biopsy to know the specific kind of tumor it is. I can also get it removed with some chance of having permanent weakness to my left arm or left body. I do have an appointment for a second opinion and have opted to get the biopsy but am torn on wheather I should just have it removed. Anyone with the same diagnosis,how did you decide to have it removed or just live with a tumor?

Anyone had any itching then what did you do ?

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@youngwoman

Anyone had any itching then what did you do ?

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@youngwoman are you experiencing itching from the surgery healing or from radiation? Have you started radiation?

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It is post surgery .Surgery done on 23rd April but now off of Dexamethasone and doctors also do not know they just suggested allergy medication but it does not help . Radiation starting from this wednesday

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@colleenyoung

@youngwoman what type of radiation are you getting?

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It is traditional Radiation or called Xray radiation stating wednesday and wil go for about 6 weeks .Spoke to neuro oncologist and just radiation no chemo. then after radiation about one month later will do the device optune lets see how it goes.

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Has anyone had experience with optune. Going to start optune with Temodar . How is the device how long have you used any side effects or problems after having the device.

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@sarasally2

I was on a wait and see program and yesterday they told me the tumor doubled in size, I was furious because I did not want to wait a whole year to see if it had grown so now face more decisions. I go to Duke in NC but the Mayo seems to be the better choice according to some docs. However that is some distance and I am pretty much alone. Anyone had radiation?

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still waiting for the covid virus to calm down but the rates are rising, they say it is safe to do the radiation treatment. Anyone had it done for an AN?

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@sarasally2

still waiting for the covid virus to calm down but the rates are rising, they say it is safe to do the radiation treatment. Anyone had it done for an AN?

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I had radiation treatments for 33 days along with taking daily doses of chemo pills And didn’t have any health issues.
My focus is getting rid of the tumor (glioblastoma-stage 4)they found in the pons area. I had surgery and then radiation and now I am taking a stronger dose of chemo pills for 5 days every 28 days under the close eye of my urologist and getting an MRI every other month.

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@hinklda

I had radiation treatments for 33 days along with taking daily doses of chemo pills And didn’t have any health issues.
My focus is getting rid of the tumor (glioblastoma-stage 4)they found in the pons area. I had surgery and then radiation and now I am taking a stronger dose of chemo pills for 5 days every 28 days under the close eye of my urologist and getting an MRI every other month.

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Welcome @hinklda. What chemo are you taking now? Is the urologist monitoring your for possible side effects on other organs from the chemo?

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@colleenyoung

Welcome @hinklda. What chemo are you taking now? Is the urologist monitoring your for possible side effects on other organs from the chemo?

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I am currently taking 5 nightly doses of 300 mg of temodar (last month I took 220 mg) So the urologist is increasing the strength and is seeing me monthly and making sure my blood work is good. I am getting a MRI done every 2 months to make sure it is no longer in the pons area of my brain. My faith and trust in Jesus has become stronger and I know cancer will not show up somewhere else… but that is a good question I need to ask me urologist!!

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