Alexander C - Diagnosed 2002 with a GBM IV
Alex has a right Temporal Lobe GBM.. We live in United Kingdom
August 27th 2002: Alex was 10 years old, he woke up that morning with a headache, never had one before,felt sick after lunch. At 5pm he had a Seizure. He was admitted to Derby Childrens Hospital by ambulance, had a Ct scan and transferred to Queens Medical Centre Nottingham.
He had emergency surgery,he wasn't expected to survive so the surgeon didn't replace a large piece of his skull[which is still missing] Alex nearly died during the operation.
He was kept asleep for 8 days because his Brain Stem was bruised. Within 2 weeks he was discharged,even going back to school. He has lost his perpheral vision in both eyes[it's a little like having tunnel vision but he has managed to adapt to it [plays pool,darts,table tennis etc]
The tumour had been removed except fot a very small piece.
Seven weeks after surgery he started Radiotherapy, 30 sessions. Alex managed to go to school every day [with me staying in the school office] before going to radiotherapy at 4pm. He felt a liitle tired towards the end, never felt sick, he lost his hair on one side of his head [that has never returned]. The hospital have since addmitted the wait fot treatment was too long. He had a few doses of Vincristine at the end of radiotherapy.
At the end of December 02, Alex had a grand-mal seizure, he was stablised and sent home from Derby Childrens hospital. He started being sick and lost weight, went down to 3 stone 7 pounds. In Jan 03 he had another seizure and admitted to Derby Royal Infirmary where he had a ct scan and eventually admitted to QMC nottingham later that day. [to a different ward,alot better ward]. We were told nothing could be done for Alex and to take him home, he would have 2 days to 3 weeks left. I refused and shouted at the doctors that I would not give up. Alex's tumour was all over his right hand side of his head and it was like 'cottage cheese'. Another operation was too risky. Within an hour of my shouting Alex had Temozolomide, 200mg per day for 5 days. The consultant has thanked me for giving them all something to think about. Alex then had steroids and after 3 weeks he had a hickman line inserted through which he had Cisplatin with Temozolomide each month for a year, sometimes it extended to 6 weeks because of blood counts. He also had a lot of platelet and blood transfusions.
Oct 03 showed the tumour shrinking.
Jan 04 had to stop Cisplatin due to very slight hearing loss.
March 04 Reduced TMZ to 150mg
May04 Reduced TMZ to 120mg
Tumour still shrinking
June 04 Changed regime to Thalidomide 200mg per night and 25mg TMZ 7 days on 7 days off.
July 04 TMZ increased to 30mg
Aug 04 TMZ increased to 40mg
Sept 04 TMZ increased to 50mg
Tumour stable Oct 04 Thaliomide increased to 300mg and TMZ to 60mg
Nov 04 Tumour shrinking[hole in middle more fluid]
Feb 05 Slight improvement to the tumour,hickman line removed[infection]
June 05 MRI form states 'Previous GBM'
Oct 05 MRI states cavity is filled with fluid not tumour. Alex had a slight bleed in centre of his head.
Feb 06 14th birthday
March 06 Alex had 6 cysts taken out from his head, back and neck[hard lumps]
May 06 MRI states Tumour has gone,the scan was clear.
No-one knows what will happen now, we decided[the medical profession and Alex, Paul and myself] to stop TMZ for a while to see what happens. Alex can't be on chemo forever,he has stayed on Thalidomide. He will have regular scans.
We have just received the results of Alex's recent MRI scan[brain and spine].The scan showed no change from the previous one and there continues to be no evidence of tumour.
This is excellent news.
We just all hope it carries on.
Alex is still on Thalidomide.
Alex had a MRI scan in December,it showed that Alex is still clear of tumour.He still continues to take Thalidomide.
His hair is just starting to grow back,very fine,where he had radiotherapy.He has also just started to shave.[quite early for his age,nearly 15 years old].
He does have focal seizures every 4-5 days but he copes with them.He has tried most anti-seizure meds and this is the best control we have. Alex isn't bothered, he just gets on with life.
Alex is now a five year survivor!
His last scan in June 07 showed no change meaning there is no tumour there.He will be having a plate put in his head soon to cover the hole in his skull although he has been wondering whether to wait until next summer when he finishes school.
Alex does have problems with focal seizures which we are addressing on an ongoing trial with different medications.
Happy 17th birthday Alex for yesterday.
We went to the hospital for the results of the scan.They seem to believe that what we saw in Nov/Dec is not tumour reaccurance but the appearance hasn't changed since then,so we don't really know what it is,it could be scarring.There was a discussion between Tim Jaspan,David Walker,Germany and neurosurgeons.So we are scanning again in 3 months.
Visit Alex's caringbridge site to keep up with the latest news - www.caringbridge.org/de/alexander/