I am starting radiotherapy

[Denni60]

I am starting radiotherapy and chemo together for 6 weeks. Has anyone else started yet. How are the effects. What should I expect?

[Greystokes]

Hi Denni, I really hope it goes well. My mum was diagnosed 2 weeks ago and started radiotherapy yesterday and due to start chemotherapy this week. Both treatments to last 6 weeks which she can stop at any time. I can't advise you what to expect as our doctor has said impact can vary by patient. We as a family are taking things one day at a time and hoping for a positive result.

[Denni60 in reply to Greystokes]

Oh thank you for replying I am starting my radiotherapy and chemo on Thursday. I am of course very anxious. But like yourself have to proceed forward. I too would like a positive result. 80% tumour was removed. 20% left. So they have to do what is nescessary.

I appreciate your response. Good luck like myself hope for the best outcome x

[Mad4cats]

I am in week five of six, I didn't experience any hair lsss until week 2/3 but am now bald on most of the left hand side of my head and at the back. I wasn't sure whether I would lose all my hair with the chemotherapy or just some- where the radiotherapy enters and exits.

Unsure whether I'll continue to lose hair once radiotherapy finishes.

I have multi focal glioblastoma so have a shorter life expectancy than people with glioblastoma, so I doubt my hair will have an opportunity to grow back unfortunately

I am also feeling fatigued but as I had long covid for the past 2.5 years I adjusted to that. I do feel this is different however

Every day I start with a small 'to-do' list and rarely complete it 🙂

There is a phenomenon known as chemo brain which is fogging of thinking

However I am currently managing a once a week parkrun- at fifteen minutes longer than I used to do, but still managing.

I'm also travelling 45 minutes to and from my appointments by public transport/ underground.

Other than my chemotherapy I'm only taking antibiotics and lorazepam- to help me with the anxiety of having the mask fitted during radiotherapy

I haven't felt any nausea as yet.

I hope this helps and best of luck with your treatment

Camilla

[Denni60 in reply to Mad4cats]

Hello Camilla, I know exactly how you felt with that mask. It is awful I could not talk or open my eyes. I thought when having it made I would die. I am going Thursday for radiotherapy and starting chemo. My god it is sometimes all too much, I don't really know how I will manage. But it has to be done. They also said I might lose hair where they are lazering, excuse spelling. So I think I maybe in the same situation as yourself I too hsve GBM grade 4 I think multiform. I aldo appreciate your response and wish you well. Please keep in touch x

[GT33]

I had that back in April, wasn't too bad, TBH, it was the 1 week per month for 6 months of just the raised chemo tabs, that threw me a bit, sideways. It was somewhere around 150 chemo during radiotherapy, but 400 chemo per day during the 6 months. Doing my last month next week. Starting to feel a bit better now.

[Denni60 in reply to GT33]

I am glad that you are feeling better now, as your ordeal has been horrible. Mine is combined with radiation and chemo for 6 weeks, they said 4 weeks off then stronger chemo tablets. At the end of the day they are trying to prolong my life. So I really hope after the treatment it shrinks some of the tumour. I appreciate your response because I am starting out on my journey.

[GT33 in reply to Denni60]

I hope everything goes OK, if you ever just want to talk let me know or reach out

[Denni60 in reply to GT33]

Hi GT33, I am on the same plan as you 1st radiotherapy and low chemo dose for 6 weeks. I will be of for a month to rest, they sldo said I will have a high dose of chemo 1 week 3 weeks off. Is there any tips where I can try and be strong and healthy. I am eating ok walnuts and blueberries. Eating better actually I expect my appetite will change overtime. I have cut out sugar now. I hope yo get good results towards the end of your treatment. Wishing you well and good positive vibes x

[GT33 in reply to Denni60]

Sounds just what I went through . You're more than welcome to personally contact me. I'm now on last week of month 6. We'll see at end of month how I am doing then. Hope you do well.

[Denni60 in reply to GT33]

Well GT33, you have been through such a lot I wish you well fingers crossed

[Creepycrawley]

Hi Denni my husband is on week 5 of radiotherapy & chemo tablets. He had a brain tumour removed in August but unfortunately we were told from the biopsy that it's a Grade 4 glioblastoma and will return. He has coped really well, the travelling to the hospital every day is more stressful than the treatment itself. He is literally in and out within 10 minutes. He is starting to feel fatigued but as the nurse keeps reminding us he is still recovering from major surgery. Take each day as it comes and remain positive- that's what we are trying to do. We wish you all the best with your treatment.

[Denni60 in reply to Creepycrawley]

Yes I actualy agree times are all over the place and you lose half day travelling. I am coping really sell at the moment. Dreading 2nd stage 1 week chemo and 3 weeks off. Still we are in their hands. But we all need that mind set be positive x

[Denni60]

Thank you, as your husband I am the same. My Tumour was removed and 20% remained could not be removed. I too have GBM grade 4 cancer. I will try and remain positive but it is so damn hard. It is aggressive. So I am hoping the best. The hospital is trying to shrink it, but like your husband it will grow back. We have to remain positive. It is very difficult indeed. We are on a roller coaster of emotions.

[Cranesbill]

Hi Denni. My Dad being 72 last year was given three weeks radio and chemo. Naturally it’s all very exhausting travelling back and forth every day but he was very tired for the duration. But he took it very well and had no sickness at all and still managed to go for a little walk each day. He did and has suffered with a little constipation for the last year during the 5 days a month he was taking the TMZ but it’s usually remedied within a couple of days. He’s been bald since 30 apart from the thinning grey that’s around the bottom of his head. We do laugh as it looks like he’s had some special powers given to him after going through all this treatment. His hair actually grew back at the bottom and is now a lovely auburn colour. It’s totally bizarre but he’s still here and staying strong. Hope that can make you laugh after all you’re going through.

Wishing you all the very best for starting your treatment. Take care 😊

[Denni60 in reply to Cranesbill]

Yes it is strange it takes over your Dads life and yours. I have started losing the front of my hair really showing scalp. Still I will get a hair piece. Should I lose a lot. Cannot get it cut because of the radiotherapy mask. Still have to remain positive. I am on better anti sickness tablets so chemo is a little better for me x

[Daybreak2]

My husband's experience of the radiotherapy and chemotherapy was quite positive. He signed up to be taken there and back to the hospital by ambulance and could make friends with the fellow patients. He felt tired after the sessions but not excessively, nor was there much nausea at all. I think the nurses joked about the masks and he never complained about it.I heard that this treatment is generally well tolerated. But he was fed up by the last round of chemo!After the sessions he noted a bit more movement in his right side impacted by the tumour. Not much hair fell out, and then later it grew back black, so he ended up looking much younger. Really this treatment is the only known to work , and once it finished we had a nice holiday in Andalucía, and back in those days my husband was so positive he thought he was cured. And for some people it seems can really keep the tumour at bay. Good luck with the treatment .

[lupagreen]

Hi Denni, it sounds like you and I are at the same stage. I was due to start radiotherapy and chemo yesterday but it's been delayed till Monday. I have to confess I'm more worried about the to-ing and fro-ing to the hospital than the treatment itself as it's a fair journey, but I'm getting hospital transport so it's all organised, there might just be some waiting around to come home afterwards. I'm hoping to only lose a patch of hair but we'll just have to see what happens. Let us know how you get on with the effects.

[Denni60 in reply to lupagreen]

Hi I had 2 days of radiotherapy. It's very tight the msdk butI have now realised the more I relax the better it is. Ask for music to be put on to relax you. I took one of my grandaughters turtle toy in to hold it is a hand held toy. So now this little tortoise is my mascott yoget me though it. I started chemo yesterday morning I was very sick, when I went to radiothdrapy the nurse took my blood. She gave me an antl

Sickness tablet It stopped within 10 mins. I am taking tablets to ight i hope I am not going to be sick.

[lupagreen in reply to Denni60]

I didn't expect the sickness would start so quickly. I'll be prepared when I start! I start chemo tablets at the same time and the nausea/sickness is what I'm dreading. Great idea to take something to hold and play with while having the radiotherapy. I didn't mind the mask although it was a very strange experience but I can imagine it would be very scary or uncomfortable for some x

[Denni60 in reply to lupagreen]

Dear Lupa, to be honest they gave me ondansetron 4mg absolutely useless these are anti sickness. I was still sick on these so my new ones are Domperidione 10 mg much better anti sickness. I hsve to take 30 to 60 mins before food. I am starting my Chemo tablets tonight judt before bed time finger crossed that I will be alright.

[Denni60 in reply to lupagreen]

Hi how are you doing. I am ok now. But my appointment yesterday was very delayed. Should have been 6pm it was 8pm. By the time you get home. The afternoon and part evening gone. My appointment is 3.30pm I bet there will be a delay again. Still good luck x

[lupagreen in reply to Denni60]

Hi, glad to hear you're feeling ok. I've just finished my first week of radiotherapy and am feeling fine so far thanks. No sickness or nausea yet. A few delays but nothing too bad. The worst part for me is the endless taxis to hospital and back, but I'm grateful really since I don't have to pay for it organize any of it. Looking forward to having the weekend off!

[Daybreak2]

Here are the time line example my husband had.9 am finish eating

10.30 ondansetron

11 temozolamida

12 radiotherapy

Must be 2 hours between eating at chemo

Must be 1 hour between chemo and radiotherapy

He didn't need or take ondansetron with all the cycles, just beginning and end ones just to be super covered from nausea

Good luck . I hope it works for you with minimum secondary effects

[Denni60 in reply to Daybreak2]

Thank you I am taking mine at 8pm anti sickness then Chemo 8.30 pm. Sleeping ok and meeping food down during the day