Stage 3 glioma

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I was recently diagnosed with stage 3 glioma, I had an operation on tge 14th of February, and now waiting to start my treatment soon which is 6 weeks of radiotherapy 5 days a week followed by chemotherapy up to 12 months, I'm feeling scared of loosing my hair, I know it should be the least of my worries, and there are wigs and scarfs but I still worry, I've got a 7 year old son and I'm so scared if I won't live long enough to see him grow older and also he only knows about the operation he doesn't know about future treatment as we don't want to scare him, I love him more than life I'm feeling heartbroken every time I look at him feeling and thingking that this won't last forever, my scabs on my scar still attached which reminds us all every day of what's going on, my boy made a wish yesterday for my scab to fall off I can't believe how long it's been there, I guess my hair that stack in it hold it too, but there is nothing I can do, I'm too scared to ask my doctors for prognosis, in case they will tell me I only got couple years left, I'm 40 y.o now, but we will discuss it with my doctor next time I see her I feel like I need to know how long I've got at least approximately as I understand everyone is different and I depends how my body respond to the treatment.. 

I recovered from the operation quite easy and quick, but I'm not sure what the treatment will do to me that's also scary

Thank you for reading my message if you get to this point 

  • Hi Marina

    i am so sorry what you are going through. My husband was diagnosed with a grade 2/3 glioma in Nov 2021 at 50.

    He had the operation in January last year and they managed to remove it all. He also had 6 weeks of radiotherapy and now only has 1 cycle left of chemo from his 12. He finishes his last one on Easter Sunday.
    Let me tell you he has done amazing. He has worked full time throughout everything after his 6 weeks off following the op, he has still cycled 30-40 miles a couple of times a week and if is Temozolomide chemo that you will be taking as he was, he hasn’t lost his hair at all (it is slightly thinner but you wouldn’t notice) He hasn’t had any side effects from the chemo.

    It hasn’t been all plain sailing mentally as it’s a lot to take in but it hasn’t stopped him living life. 
    If you can, I would suggest going to a support group or an online one. My husband didn’t as he was stubborn and just wanted to work through his dark times in his own mind but it was difficult for us as I couldn’t truly understand what he was going through. 
    His attitude to life at the moment is so positive and he just carry’s in regardless. 
    Please try not to worry about the treatment, as it isn’t as overwhelming as you might think.

    Put your focus in to your 7 year old as he is what you are fighting for. 
    I hope this gives you a bit of comfort, i too scoured these forums when my husband was diagnosed and they do help to hear other peoples experiences even though they are all unique.

    Wishing you all the best and stay strong and fight this xx

  • HI MarinaF

    a warm welcome to the group. Sorry to hear about all that you are going through.

    I'm supporting my husband through his stage 4 glioblastoma journey so different scenario but he had 6 weeks of oral chemo/radiotherapy in combination so I'm guessing that the treatment approach will be similar. Same as Anna mentioned below, it was TMZ (Temozolomide) that he was given. he coped really well with the treatment. By week 4 he was quite fatigued and that lasted for about a month after the treatment was complete. He was given strong anti-sickness pills to take for the first few days and then weaker ones to have in case he needed them for the remaining weeks. He was never sick but did occasionally feel nauseous. His sense of taste also altered for a while but it eventually returned to normal. He never lost his hair (in fairness he never had a lot on top to start with) He lost a little in a straight line around the area that they targeted the radiotherapy to. It grew back quite quickly but came in darker that the hair round about it. HIs main complaint about the radiotherapy was that the mask he was fitted for was very tight. Each session only lasted about 20 mins but each day he would come out moaning that the nurse had squished his nose. 

    Bear in mind when it comes to prognosis that these are guidelines and not hard and fast timelines. As I said our situation was different as his diagnosis was terminal right from the start but we were told he had 12-15months.  He's still here 32 months down the line. Physically he's still in incredible shape considering where he is on this journey right now. He's a fitness freak and ran two marathons last year. He still runs when he feels able to even though we are in the final stages of this journey.

    This group is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We're here for you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    As Anna has said, focus on the positives and on being her for your son. I do believe a positive mental attitude really helps but we're all human and driven by emotions so don't be too hard on yourself if you have some down days. They're allowed.

    Talking to your son about it is a delicate matter as I'm sure you don't want to scare him or upset him but kids are more resilient than we parents give them credit for. You know him best and will find the right words when the time is right. A couple of other members of the online community have shared their stories so their experience may help you

    Talking Cancer podcast Series 3, Episode 1: Talking to children about cancer | Macmillan Cancer Support

    Diane on telling her children | Macmillan Cancer Support

    I hope this has been helpful

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much for reply, your husband done amazingly!!! The operation went good for me I was home 3 days after and independent, the hair, doctors said, would fall during radiotherapy in some places, but it's not the end of the world, just might be more traumatising I'm doing same treatment 6 weeks radio and 12 months chemo 

    So what happens after did the doctors said? Does he has to get scans every 3 months? I really hope tge treatment works for a very long time

  • Hi Marina, my hubby also lost his hair where the radiotherapy targeted and a little on the other side (I think where the beam passes through Open mouth

    He didn’t mind so much and it grew back not long after the radiotherapy finished and his hair is back to normal now. As a woman I can imagine it is harder to loose your hair so I do feel for you butSlight smilee proud of your scar and what you have come through Slight smile

    He has MRI scans every 3 months at the moment and he had CT scans during radiotherapy (to check if there had been any small strokes that you wouldn’t know about but all was Ok)

    His last Chemo treatment (12) starts next Tuesday and then we will find out what’s next but we are just assuming it will be a case of routine MRI’s to keep an eye out. 
    Just a pointer with the chemo from what we researched on the internet and it has worked fine for my husband. He always took his chemo at night. 
    He stopped eating at 7pm, took an anti sickness at 8:30pm and then his chemo at 9pm (it has to be on an empty stomach) 

    If he did get any side effects he wasn’t aware of them as he was asleep. I thought it might be helpful to know what worked for him but I understand not everyone is the same.

    Any other questions you wish to ask, I will try to answer them the best I can.

    You may not feel like it at the moment as your journey has only just begun and I remember what my husband was like after the operation. He was so positive as he too recovered really well but the prospect of over a year of treatment hit him hard. Honestly though, despite a few emotional ups and downs, you can live your life as normal. 
    Here anytime you need xxxx

  • Hi Marina. Im so sorry to hear about what you’re going through. I too am newly diagnosed and turned 40 on 5th April. I have three young boys aged 12, 10 and 7. They are also worried about my hair! I am waiting on biopsy results still after another week of delays to know staging and prognosis. I want to know. We have a private second opinion booked for today but not sure how useful if don’t have all the results yet. It would be nice to support each other through this horrendous period. The forums seem quite quiet and I haven’t been able to speak to anyone yet. I had an appointment booked with MacMillan on Saturday but wasn’t called after getting myself psyched up and the kids out of the house for it. Take care, Sarah 

  • Hi I have exactly the same condition. Had My debulk on 25th January. Start my radiotherapy tomorrow. I hope you are ok and you're recovery is going well.

    Rich. 

  • Hope you’re recovering well too Rich. How did you find the operation? 

  • The Operation apparently went well it was a very large tumour they took about 70% of it away and its growing back already . I just hope the Radiotherapy makes a difference before I then start my chemotherapy. How are you ? Rich.

  • So sorry to hear this nasty thing has got you so young.  I am 67 and male so I have no excuse!  Worrying about treatment and prognoses will not help anyone.  The best thing you can do for those around you now is to show them that you are generally quite well.  I have just finished my treatment radio and chemical now just going on to chemical only.  I hardly lost any hair, nausea was easily controlled, fatigue was worst side effect.  Being younger is to your advantage, both in bouncing back from treatment and prognosis.  Most people I meet are amazed to find out I have a brain tumour, I truly hope that you can pull off the same trick until this just becomes an unpleasant scare you had many years ago.