Glioblastoma grade 4

Hi, I'm glad your feeling a little bit better.  Good luck with the rest of your radiotherapy x

Hi Wee Me

2 weeks done, still feeling bloated at night and taking anti sickness 3 times a day- 5 more weeks to go... Did your husband decline further oral chemo as made him feel unwell.? I am managing most things for myself but the travelling for the treatment is probably the worst 1 hr 20 mins and not a good traveller.

wishibg you all the best

LH 65

Hi LH65 Hope the nausea eases off for you.  Two weeks done though - well done. A third of the way there :) 

The travelling backwards and forwards is tiring in itself. We were a 60mile round trip to the hospital  so I get it.

Yes he did decline the option of the additional 6 months of oral chemo. It wasn't a decision he took lightly. He had hoped that he would see an improvement in his cognitive abilities after the 6 weeks treatment and he didn't.

His tumour was a 30mm thing that was in the Broca's area of his brain that controls speech, language and understanding. He gets quite confused with words. Numbers and time are a bigger challenge and he can no longer read anymore than a few words at a time before he's lost the meaning of what he's reading. He can only follow simple instructions.  The tumour has also compromised his sight as it's interrupted the message from his eyes to his brain so he describes it as if he's looking through wet plastic.  A bitter pill to swallow for someone who was a senior IT manager specialising in voice communications. Physically though, he's still fit. He ran 48 miles over the course of the last week. 

He decided against the additional chemo as it wasn't going to change the prognosis  and he didn't want to compromise the quality of the time he has left for the sake of possibly gaining a few short weeks of life. I respect his decision.

Everyone is different though and I think a lot of it has to do with how big an impact on how you live your life that the tumour has had. For my husband, it's taken away all the things he held dear to him and he struggles with that.

Take on board all the advice you can get from your team at the hospital. Make up your own mind what's best for you in your own situation  when the time comes. Focus for now in completing the six weeks of treatment and recovering from it. The last 2-3 weeks are tough and in my husband's case the residual fatigue lasted another 3-4 weeks after the treatment ended.

Hang in there. Stay safe

Wee Me  x

Have been feeling not too bad, just nauseous at times- only 7 radiotherapy treatments to go, but platelets low Friday,so  have  to get another blood test Thursday. In other experiences do the platelets take one to go up again??? After this have a month off and starting stronger chemo for 4/6 mths - 5 days a month. My hair is thinning and is all over the place, not sure to get wig or just wear headbands for now.

lh 65

Hi

everything was going well up to 10 days ago was put of chemo tablets as platelets low and they are still low now 28 were 75, not sure should I be concerned?? Feeling ok in myself. Finishing radiotheraphy on Thursday and then have break until 11/5 when 4/6 mths of stronger chemo due over 5 days a month. Has anyone been in this situation with platelets??

Hi Lh 65

Have just started on this site and been reading your posts with interest as diagnosed GBM4 mid February. Unfortunately inoperable so have had the 6 weeks R & Chemo which finished last week. Starting the 6 cycles (I hope) of stronger TMZ on 17 May. I was sorry to hear about your platelets and hope it resolved.  Good luck.

Hi gaj

i gave to start stronger chemo from 11 May - not sure what way platelets are at the moment, but feeling ok, hair loss is the only major issue, over scar area and thinning out all over, still falling out, so not sure will thus continue when go on stronger treatment. Did you have hair loss??

Hi Lh65

yes hair loss over site of radiation treatment, basically left with a fringe! Still losing a few strands but not much. Have a great wig so not too upset. Have had itchy rash on torso during last week that antihistamines didn’t shift. Am waiting blood test results to try and identify cause. Good luck with starting chemo next week.

Hi

went for apt Tuesday and platelet count up, unfortunately consultant not happy to continue treatment as low dose chemo had caused problems with blood and is going to wait for scan in June. She said rest and try to recover, definitely more tired now than when having treatment. Is this a bad sign no treatment for now??

lg 65

That's amazing  to hear about your husband still being with you and his journey through treatment, I'm about to embark on my treatment next week, lovely to get the reassurance that for some the afteeffects of treatment is what it says on the tin