Radiotherapy for GBM 4

Hi Minnie, my wife had radiotherapy last year but that was after surgery and with concurrent chemo. It made her fairly tired but nothing more than that. I think the daily trips into the hospital also contributed to the fatigue a lot. 

I'm glad they think you're strong enough for it. That's got to be a good thing. 

Wishing you all the best,

Chris

HI Minnie

I;ve just replied to your other post but thought I'd build on what Chris has said here .

When G had his radiotherapy it was in combination with the TMZ chemo tablets. The only side effect he suffered was fatigue. That kicked in around week 4 and lasted for about a month afterwards. Initially he was a little more confused but that settled once the treatment cycle ended. 

Everyone is unique here so the overall impact will partially depend on where the tumour is and what part of the brain it is impacting. In G's case it was the area of the brain that controls speech, language and understanding that was compromised.

stay strong.

love n hugs

Wee Me xx

Hi Minnie :) 

I’m so sorry to hear of your diagnosis. 

My dad completed 3 weeks of radiotherapy (it is usually 6 but he’s got lots of other things going on… recovering from a stroke and also bowel cancer so his overall health is generally bad). He was very tired during the treatment and for a week or two afterwards, but once that wore off, he seems to be the same as he was before. He is feeling quite well and responded well to the treatment. I just saw your other post about the different types of radiotherapy and I must admit I’m not too sure on the details of what he had exactly. 

I know you must be feeling so scared, please come back and vent to this group/ask all the questions. There is always someone here to help and support you. 

xxx 

Hi Minnie, I have GBM 4 and have had 19 radiotherapy Treatment with 11 more to go alongside taking chemo tablets. So slightly different treatment plan to yours.  I am now feeling tired but as someone said I feel that is down to making the hour long journey each side to the hospital 5 days a week with only 2 days to recuperate. i do feel a little slow in the thought processes but have put that down to feeling tired.  Speak to your Specialist nurse about your fears mine are brilliant at explaining and then explaining again if I don't grasp something or forget.  they are the experts.  I wish you luck and hope you feel calmer soon,  xx

Hi Wee Me - your posts are so incredibly helpful. My father has just been diagnosed with stage 4 Glioblastoma - in the same region as G by the sounds of things. It is incredibly aggressive and he is deteriorating rapidly. Did you go privately for treatment? Or do you know where is best for treatment? He needs to start it as soon as possible and we’re trying to find a consultant who can take him asap as the nhs said if you can get in privately it will be faster. 
it’s all such a shock, happened so suddenly and we are very much ships out at sea in all of this with no idea how to find the best information / treatments / consultants. If you could shed any light I would be so grateful. My father is 70. Many thanks xx

Hi Alexandra

sorry to hear about your dad's diagnosis. G was treated under the NHS in Glasgow. To be fair, he had the initial surgery followed by the standard 6 weeks of oral chemo/radiotherapy in combination then declined all further offers of treatment.

In our case things moved pretty quickly from diagnosis to surgery to treatment.

The best people to talk to initially are the team looking after your dad as they know his situation best. Everyone on this journey is unique.

I'm sure some of the other members of this group will share their treatment experiences. This is a safe and supportive space and we all look out for each other.

For now though I'm sending you love and light and hugs. Stay strong.

love n hugs

Wee Me xx

Hi Alexandra. I’m so sorry to hear about your poor dad. My dads treatment is also all NHS and we cannot fault his neuro oncology team. So lovely and helpful. Do you know if your dads tumour is operable? 

You’re in the thick of the initial shock at the moment and goodness it’s a horrible horrible place to be. It does ease up I promise. Take each day as it comes and hopefully very soon there will be a treatment plan in place. 

xxx 

Thank you so much. 
sadly NHS said that we’d be better to go private (we will do what it take to get him somewhere excellent) as they wouldn’t be able to start treatment for another 12 days or something and that is such precious time as each day he is declining.

it’s already taken so long on the BhS and we’ve lost 5 weeks since him first being admitted for scans so in that time his tumour has rapidly expanded.

it is inoperable due to the position of it in his brain being too risky to try and do a partial resection.

We’re desperate to find a top oncologist to take him too.