Hi My Husband Has a Anaplastic Oligodendroglioma grade 3 was first diagnosed Oct of 1998
all started with left leg spasms in spring 1995 ( we now know they were focal seizures)
july 1998 focal seizure in left leg turned into grandmal seizure. ambulance ride to Er they said since it was the fourth of july weekend and he partied for like 3 days straight the seizure was caused from drinking to much. So he gave up drinking.But still continued to have focal seizures left leg.
first week of oct 1998 he had another grandmal seizure this time in the ER the doctor ordered a CT scan and they found the mass.
3rd week in oct 1998 had surgery to remove all of the brain tumor, 2 months later had 30 radiation treatments. all was well no side effects from surgery or Radiation back to work running our Construction Business. life is Good For 12 years never looked back raised our sons.
Feb 2010 started having more focal seizures left side not walking right tripping falling more. Went for MRI his Original Neurosurgeon said couple enhancements on mri looked like scare tissue nothing to worry about.
March 2012 having more focal seizures left side tripping more often cant walk right. Went to new Dr Neurologist to possibily get his medicine changed was on very low dose of dilatin since surgery oct 1998. New dr changed medicine to Keppra and ordered new Mri. found much more enhancement on mri went back to see our original neurosurgeon he ( our neurosurgeon was 67 years old at the time of my husbands first surgery at this point he was 80 years old) he told us didnt see anything that jumped out at him ignored the symptoms he was having. We decided it was time to find a new neurosurgeon. Went to new dr for second opinion and he looked at all three mri's same picture on all three from 2002, 2010 and 2012 and you could easily see the recurrence of the tumor.
End of april 2012 had surgery to remove 90% of the tumor. Has partial left side paralysis left hand and foot. Pathology came back the same.They did the fish and he does not have both deletions only on 1p.
July 2012 had Re-radiation 28 treatments along with Chemo temodar during radiation.
Oct 2012 did Mri seen some small enhancements went to see our neuro oncologist he said looks like edema swelling or radiation effect possibly not calling it recurrence yet still saying it is stable.
Nov 2012 for the next 5 months they plan on keeping him on temodar 400mg 5 days a month.
Dec 2012 did mri see some more slight enhancements reluctant to call it recurrence cause it is such a slight change saying they are still considering it stable continue with the temodar 400mg for 5 days a month.
March 1st 2013 had mri March 6th went to dr. oncologist said the tumor is growing the temodar is not working showed us the mri and we are shocked it has grown a lot just 2 months.They said Tumor is now inoperable because is causing left side paralysis it would only make is quality of life worse.
March 13 2013 made the decision to start IV chemo Bcnu and avastin will possibly have first treatment next week.
Monday March 25th will start bcnu chemo and avastin.
He did real good with treatment other than about 5 days out he said felt like had a hang over for about two weeks he also got a bad dose of the hiccups for like 3 to 4 days after treatment ( I looked up chemo hiccups? )
April 15th had a chemo Port put in Today cause his veins are none existant..It has delayed his Chemo cause the port has to heal good before next treatment..
May 4th had his 2nd iv chemo treatment BCNU and Avastin all is going well at this time..So glad he had the port put in..