Radiation side effects on Right Temporal Lobe?

[Mustard]

Hi All, I was diagnosed with a brain tumour on the 22nd of Jan 2015 and had the operation to remove it on the 29th. The neurosurgeon said they remove all visble signs of the tumour. The results came back as a GBM and I will start chemo and radiation in about 4 weeks as they want my brain to be healed from the surgery. The tumour was on my right temporal lobe and it was the size of large an egg (3cm x 4.5cm). Has anyone else had radiation to their right temporal lobe? As they can't tell me how it will effect me besides losing my hair and turning my skin red. Also did you regain what was affected? Thanks, Paul

[totoro]

My Mum had radiation to the frontal lobe of her brain, about 5 years ago for a 8.5 cm butterfly shaped non Hodgkin's lymphoma. It hasn't come back, so on that front it certainly did the job ! She didn't get any limb weakness or loss of function to her body. She also got the red sore skin, but with time this passed. paw paw cream is great for this! The hair around the site of the lymphoma grew back,it's quite thin in that area but not noticeable. After her illness though her personality slightly changed and I've never been able to find out if it was the lymphoma and or the radiotherapy that may have caused this. It's so subtle a change that I am not sure that she is even aware of it. It's certainly a side effect which Mum wasn't warned of before her radiotherapy and I know it wouldn't have stopped her from having it because it has saved her life and given her another 5 years and more to come I hope! All the best and I hope your well again soon .

[Mustard]

Thank you for your reply. I've now finished the radiation and I lost my hair at the treatment site, but my skin didn't turn red. I did get very tried at around 4 weeks in and I still need a sleep in the afternoon and its been 2 months since I finished the radiation. I'm on the 5/23 cycle of chemo now (5 days on followed by 23 days off) so that might not be helping the tiredness. But I'm hoping that I get over it soon as it makes working very hard when you want to go to bed for a hour around 3pm. I have my next MRI on the 1st July and hopefully that is all clear. As I believe effective treatments and maybe a cure is going to happen in the next 12 to 24 months and I plan on being here to see them. Thanks, Paul

[magagie]

I was very tired too after radiation, it's when I napped the most! But have noticed that on chemo now on the fourth cycle, I am starting to get more tired. I think the chemo has similar effects...as well as some nausea for myself, to radiation. They told me it would be hair loss in the area being treated which was my left frontal lobe, whereas I lost a bit more than that, but it seems to be slowly coming back. I have had two scans since radiation finished and there has been no movement on the tumour (or what's left of it) and radiation made an improvement. My chemo is a trial drug and I do 5 days on out of every 28 and MRI's every three months. I also think there will be lots of new things around for us to try 🙂

[Mustard]

Hi Magagie, Thanks for your message.My MRI on the 1st July was good and I should of been in the middle of cycle 5 but my platelets are still recovering from cycle 4 so the Doctors are giving me an extra 2 weeks before starting cycle 5. Will have my second MRI on the 7th Oct and hopefully that will be good too. I really believe there will be better treatments in the next 12 to 18 months, so just have to prove the Doctors wrong when they gave me a 12 month in Feb. What trial are you on? I looked for trials when I got diagnosed but the doctors just keep saying we will look at those options when the current treatment fails. Not if but when, which annoys me. Thanks, Paul

[Hannah_p]

Hi I am very new to all of this ! I had most of a tumour removed 6 weeks ago and am currently struggling with the Dex steroid side effects. My neurosurgeon told me today I need radiotherapy to slow the tumour growth. It was a shock as we were first told I had a slow growing tumour which would need monitoring. I would like to hear from others how they managed their side effects. Such as a daily routine /food/exercise etc. I have 2 young children (3 and5 ) and rely on my busy husband and parents to help (lucky they are wonderful).

[Mustard]

Hi Hannah, I had 30 treatments of radiotherapy over a 42 day period and I got to week 4 then I got real tired, like sleeping 18 hours a day which lasted for about 6 weeks and I still get tired in the afternoons and some days I have a nap. I've spoken to other people who have gone through it as well and some get the tiredness some didn't. Two that didn't get the tiredness said they exercised everyday and they thought that helped. I tried to do that but was too tired so I just slept. So best advice is if you need to sleep and you can then have a nap/sleep. I lost my hair at the treatment site but it has now regrown but it's finer and a bit lighter in colour (ie close to gray). I've also met people who haven't had their hair grow back. So I suppose it all depends on the person. I've changed my diet and try to cut out sugars and I take supplements. I hope they are making a difference as I tell people I would hate to go through all this and then die, but I believe they are helping and that matters. I also know there is going to be a cure for brain cancer within the next 3 years as I saw an interview with Dr. Charlie Teo and when they asked him if he would live to see a cure for brain cancer he said as long as he didn't drop dead in the next 2 to 3 years then yes he would. I would like it to happen today as we need it to happen as soon as possible. Take care, Paul

[Hannah_p]

Thank you for your reply, info and positivity. Struggling a bit to stay positive at the moment as it's still very new. I will try to cut back on the sugar to start with.... My diet and food intake is out of control at the moment ! Thanks again and I wish you all the best.

[totoro]

Hi All If you can get yourself in to see a dietician, if you haven't seen one during your treatment. they are experts in what to eat while experiencing the different phases of your cancer treatment. Here in WA ( sorry it sure about the other states) you can see the government ( population health departments) dietician for free via a GP referral.

[Hannah_p]

Thank you. I will look into it next time I see my go