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.

restarting treatment

furnitureman
Posted by

Sorry for your reply quickly but my Mother died in the night the same day by Dad died and my Seizure s started.

Furnitureman

furnitureman
Posted by

Dear Taremay

I take the Chemo horse pills size. 3 pills each 5 days (15) every 28 days if this makes sense. I get the next dose will be next Monday so I can look at the strength of the pills then.

Furnitureman

rpain23
Posted by

I’ve not posted here for a long time...

On the subject of PCV, my husband managed four cycles of it (nasty stuff) but it kept his GBM stable (no progression) for over a year!  Alas, 14 months later (this March) his MRI showed it was progressing again so he’s been re-irradiated and it’s stable again for the time being.

Next stop, a phase 1 clinical trial!

PS - before all this he had two surgeries, radiotherapy and TMZ - didn’t do much for him!  Originally diagnosed in Dec 2016.  Still going strong.  Live with hope! :-)

 
Rosvar63
Posted by

Hi rpain

your news is promising for my husband and I. Since completing 6 cycles of PCV then consequently gradually coming off a low dose of Dex his mobility has suffered over the lastv4+ weeks. His ankles have swelled and nobody can say why! Apparently steroids would cause this.....but he’s not  on any now!!?

he has also got aches and pains all over, especially his abdomen, and his appetite has declined, which has been good throughout chemo over the last 18 months! Our GP is now sending him for a scan on his abdomen.

we were hoping for some respite after completing the PCV, but non upto now. Your news is encouraging, however, for my husband.

hopefully the clinical trial is successful

sending hugs at this very difficult rollercoaster for you and hubby xxx

Sheila.

Rosvar63
Posted by

Since my last post Anthony has continued to lose weight. He’s lost 10kg over 2 months. He’s eating but just a little of what I prepare.

his ultrasound on the abdomen was ok - everything normal, except for they could not see his pancreas due to gas buildup. He’s having another blood test for that.

they want him to try an anti depressant - mirtazapine. Apparently it will help with appetite and insomnia. They are not suggesting any other painkiller - just paracetamol, which doesn’t seem to help his various aches and pains.

has anyone else tried this? One of the side effects apparently is constipation so he’s reluctant to try it.

Sheila.

kt2
Posted by

Hi Sheila - my husband started with random shooting pains all over about ta year after treatment for GBM4 and we started him on CBD capsules, bought online from a reputable UK company.  Our oncologist had no issue with this.  After a few weeks, the pains stopped and he's ok unless he doesn't take them (eg when he was in hospital for 3 days after having a small stroke).  The pains came back with a vengence.   May be worth a try??

Kate

furnitureman
Posted by

Hi 

Just think my awful things should stop my family should stop could stop with problems, my brother was given bad news he had 11  include brain tumors.  He lives in Holland and his treatment is much better there. 

I still keep my brain works kind off

Sorry for bad writing.

Furnitureman

Rosvar63
Posted by

Hi kate

anthony has been taking cbd oil capsules for over 12 months. We increased the dose a few months ago, but it doesn’t seem to be making a difference upto now. I do feel it has helped over all though.

sheila.

Sheila.