Glioblastoma multiforme brain tumour

Glioblastoma multiforme (GBM) is a type of brain tumour. If you're suffering from glioblastoma multiforme, or know someone who is, join this support group.

My gmb journey

Smallp02
Posted by

Thanks Colin.. 

Its down to 68... needs to be 150!!@

What else do you eat apart from avocado?

I keep asking 're diet and am told won't make any difference and nothing I can do.. but I am willing to try anything xx

Paula x

Colin33
Posted by

I also eat lots of foods rich in Omega 3 fatty acids such as tuna, salmon and avocados

lots of leafy greens such as spinach etc. and also drink green tea with papaya at least twice a day 

also exercise a little bit(not enough), but it does tire me out.

Colin

Get as much as you can out of life, as you don’t know what is around the corner 

Colin33
Posted by

Sorry forgot to say. Holly crap with your platelet levels

My oncologist is happy above 100 and will take me off chemo if they drop below.

like I said before mine was dropping and got to 108 before shooting up 6 months ago and the only thing I changed was my diet

Get as much as you can out of life, as you don’t know what is around the corner 

Barriex
Posted by

Hi guys quick update 6 month cycle completed went well tolerated it well had 2 clear MRI now no significance waiting for next MRI end of this month.

Struggling with fatigue  at the min but I'm fighting the beast

Smallp02
Posted by

Hi guys 

I am so sorry not posted in here for a while but glad to hear you are both doing ok....for some reason I did not get any otificuatuons of updates but seem to  or be doing....

I am now in my 2nd month chemo free after having the 6 months of 5 days in 23 off  following my MRI which showed that the tumour had not increased...

Amazing ne2s!!

Plan is to reduce my steroids and a repeat MEI in 3 months time.. so now trying to enjoy  ring hospital free for a while... well, Part from.all..y other ongoing issues, including recurrent shingles infection and my eyes continue to remain blurry!!

On another positive however I have ethos weekend managed The Shard which is on my bucket list... hurrah!!!!!

Anyway, I do wish you both well and will stay in touch x

Paula x

Colin33
Posted by

Hi Paula,

I am glad to read you are doing as well as you can be. 

For me it’s been interesting, I have just come out of hospital after having a tumour removed from the temporal lobe my neurosurgeon was able to debulk all of the tumour I had completed 20 cycles of chemotherapy but it didn’t come back in the original spot,My wife had seen different signs in me so she rushed me in for an emergency MRI which showed the tumour. We have a plan going forward so I will keep fighting it.

take care 

Colin

Get as much as you can out of life, as you don’t know what is around the corner 

Smallp02
Posted by

Hi Colin,

Sorry to hear you've just been back in... but wishing you well in the road to recovery.. 

Sounds like your wife is in the ball to have  noticed the differences  thank goodness she did!!!

And you bow have a plan.....?? Sounds interesting!

And as for fighting, I am with you in that.. they say we have to remain positive don't they?!  I must admit I've had lots of stresses recently and did get VERY low but I'm determined again now!!

You stay strong...

Best wishes

Paula x

Paula x

Barriex
Posted by

Hi guys sorry yo hear you've had to go back in colin

Had my feedback from my 3rd MRI yesterday still clear 

Fatigue better last month 

Smallp02
Posted by

That's great news Barriex

Sorry to hear your news Colin..  hopefully your now back on the road to recovery....keep strong and positive x

..I had my MRI 2 weeks ago and get my results on weds so fingers crossed will be good news too but I have yo admit I've been feeling generally Rubbish of late with 2 seizures /scares so just hoping it's going to be good news!!!

Take care all...

Me x

Paula x

Colin33
Posted by

Hey guys, 

Thank you for your responses. I’m still going and still fighting it and it has been a very interesting experience since I last posted after having the tumour removed from the temporal lobe some it is freaky but believe me it is all true. After the surgery I had two side effects that I picked up one was that everything was louder and I thought my neurosurgeon had cleaned out my ears the other was that the end of my tongue was always numb and felt like an elephant had trodden on it. Getting home after of hospital I felt different and everyone else was different around me and I would get responses from them that I wouldn’t expect. I also had a problem with processing information, things would stay in my head and I couldn’t get them out of there and they would be just irrelevant stuff like a book I read or something on the television. I am able to process info now but I don’t watch a lot of news events just in case I can’t.

Because the tumour was in a different lobe I was able to have radiotherapy again but I had to wait for the wound to heal before starting it. Radiotherapy was 30 cycles over 6 weeks and I only just finished Monday just gone and this is were the freaky stuff is.With radiotherapy I didn’t experience any of these in the first treatment so I can tell the difference between the two experiences.. As soon as radiotherapy started my senses heightened, with my hearing really increasing to the point  I would have to tell my wife and mum to speak quieter( they were getting frustrated with me lol). What I do now is wear my air pods in and can hear everyone as clear as anything. The tip of my tongue has got slightly worse, if I eat sweet foods it really tingles and is annoying, if I eat savoury foods it dulls it a little bit. My touch is interesting were the sun really burns me and that is straight away but if I have sunscreen on it doesn’t. My smell, now this is the freaky one I use to work for a gas company so I know what gas smells like and as I said i had radiotherapy before and I didn’t experience this in my first lot of treatment. It started in the second week of radiotherapy. I was lying there with the mask on and the machine started up and through the first stage  I felt a warm sensation at the targeted area, the second stage of the treatment started and I could smell the laser gas of the machine. It was engulfing through my nostrils at one point I had to open my mouth to breath. Through the rest of radio I would smell it.I wouldn’t always have to open my mouth though. An other issues with smell was I would be sitting somewhere and a person would sit just away from me and I would be able to smell their perfume or soap they used one ladies was that strong I had to move because it made me feel nauseous, like I said freaky. My sight, there has been no change at all I can’t see through walls. Lol. My mate calls me Spidey now he says I have spidey senses. So I bought a t-shirt the other day that says “ stay calm I’m Spider-Man “.My son laughed and my wife and daughter just shook their heads. It will be interesting if these side effects are temporary or permanent. 

So radio has just finished, I have an MRI in 4 weeks time and then I am going to start Carboplatin after that. I have a plan going forward so I’m happy with that, I feel good in myself and I didn’t have any tiredness through radiotherapy I actually had more energy and did more around the house I got bored watching TV. 

I hope I have waffles on and bored you guys to much and I hope you are doing well.

Take care.

Colin

Get as much as you can out of life, as you don’t know what is around the corner 

Barriex
Posted by

Hi colin 

Iv got spidey senses too hearing and smell have heightened. Taste was a little iffy when I first came out of hospital

I smelt static in the air during radiotherapy  slight warmth on exit point 

Struggle at times with sensory overload if there too much noise mainly mixed noises. 

Have a little PTSD maybe feel sinking feeling when I get deja vu. Knocks me sick have to pop for some quite chilled comfy lie down.

Take care Colin and feel free to waffle helps make me feel a little more normal not being the only one getting things.

Barriex
Posted by

Forgot to say supermarket shop lighting and air conditioning  make me feel yuk too

Smallp02
Posted by

Hey you guys .

It is so surreal r3ading what uouv3 b3en going through as I had similar but didn't really consider it until now.

Sensory overload and.processing are a daily difficulty and have been since Just post my op...

Smells too I didn't realise wer3 affecting me.untilnreading what you've written. I was convinc3d my neighbour had started cooking at 3am and even asked her 1 day but since she's assur3d me she doesn't the cooking smells seem to have disappear3d. It's so so strange!!

Sadly the blurred vision continues iso imn determined to discuss further with my Oncologist this weds when we meet for my MRI results!!

Sadly I'm also suffering shingles almost monthly  now too so that doesn't help as side effect of the meds is headaches and blurr3d vision!! Arghhjh!!!

As for your taste difficulties..  have you been told about pineapple? Either drink a small mouthful or eat chunk just before you eat and it will help with the taste issues... it did work for me!!!

You guys take care and stay strong. Best wishes as always xx

Paula x

Colin33
Posted by

Thanks Barry, 

I will have a waffle again once the chemo starts or now lol Sounds so similar, the mixed noises really does my head in and when my 7 year old nephew loses his cramp and throws a tantrum I have to walk out the room, it’s just to much.

I was analytical before but I do it more now. I’m a big baseball fan and I will sit and watch it on MLBTV and play the role of the catcher who tells the pitcher what pitch to throw and were to throw it. It drives my wife up the wall though lol. So during radiotherapy I would analyse every treatment and could tell the difference with time, the heat ( one time nearly became unbearable ) and the smell.. Friday’s was always the longest, I would assume because of no treatment Saturday and Sunday.

With my mask at the start it fitted snug all over and I couldn’t talk when inside it. At the end of treatment my head had swollen on the targeted area so it was hard to put on the mask( I just said push it will be fine) but around my mouth was lose we’re I could talk easily to the radio girls, they were worried but I was fine.

Deja vu I have only had once but can understand how it will knock you around and you need that comfy lie down  

Take care as well Barry 

Get as much as you can out of life, as you don’t know what is around the corner 

Colin33
Posted by

Hey Paula, 

Sorry to hear about the shingles that must be painful and the blurred vision very annoying.The sensory I’m ok with but the processing really effected me.  I haven’t been told about the pineapple so I will give it a go.

When I was going through my tough time with my processing I did have some other issues were I thought I could hear music coming out of a vent in the house one night. My wife couldn’t convince me that it wasn’t, she recorded it and of course there was no sound. I also got angry one night over something minor at 2am in the morning and threw a desk fan at the ground  (I don’t throw things in anger) so they reduced my steroids and things returned to normal and I was able to process that I shouldn’t have done that.

The smell is always what it’s suppose to be just so much more intense, lying on the radiotherapy table there was normally 3 girls doing it I could individually smell their breaths

I will try and keep in touch a bit more

Take care as always

Colin . 

Get as much as you can out of life, as you don’t know what is around the corner