Oligodendroglioma II, recurrence after 2 and a half years

mccindy

falcon69 said:

My son's recurrence

Chiligrl1.....my son, 31 at the time, was also diagnosed with a gr 2 oligodendroglioma but his was in the right frontal lobe. He had surgery in Dec. 2011 (gross total resection)and a "watch and wait" approach with MRI's quarterly was taken. In Nov. 2012 the tumor had begun growing again. We were unpleasantly surprised since we thought (hoped) it would be several years until new growth would be observed. That just goes to show that these tumors are unpredictable and one can never predict what will happen. A 2nd surgery was performed in Feb 2013 and the path report showed that it had progressed to a grade 3. He just completed 4 rounds of the PCV treatment and has just begun 6 weeks of radiation treatments. He does have the favorable deletions which helps the effectiveness of the chemo. I know that even after the surgeries, chemo and radiation the odds are that his tumor will again begin to grow at some point and that will always remain a huge concern. Fortuantely, he has had no deficits at all, is completely normal, and has missed very little work, even through the very rough PVC treatment. He has lost 50 lbs and so is a shadow of his former self, but he has all of his mental and physical faculties in tact.

Falcon69, I'm so sorry to hear about your son's regrowth.  Oligos are typically the slowest-growning type of cancerous brain tumor so it's surprising to hear he had regrowth so soon.  The upgrade I'm sure was very concerning to you also.  It does sound promising that he has the 1p 19q deletions, hopefully the chemo/radiation combo knocks that thing back for years.  I hope that you have great results from his treatment and he is with you for a very long time.  Stay optimistic.... it's what I try to do, since I am now in the "wait and watch" time period myself.  My grade II astro is supposed to grow back, but who knows when?

falcon69

mccindy said:

Falcon69, I'm so sorry to hear about your son's regrowth.  Oligos are typically the slowest-growning type of cancerous brain tumor so it's surprising to hear he had regrowth so soon.  The upgrade I'm sure was very concerning to you also.  It does sound promising that he has the 1p 19q deletions, hopefully the chemo/radiation combo knocks that thing back for years.  I hope that you have great results from his treatment and he is with you for a very long time.  Stay optimistic.... it's what I try to do, since I am now in the "wait and watch" time period myself.  My grade II astro is supposed to grow back, but who knows when?

good thoughts

mccindy...Thanks so much for your kind reply to my post. Your words are much appreciated! My son is optimistic and has a good attitude about his situation. He has always been the type to take things as they come and "roll with the punches". It is hard as a parent to see your child be go through something like this. I would trade places with him in a heartbeat if it were possible.  It sounds like you have a positive attitude and are getting on with life, which is as it should be. Please know that I wish you all the best:)

mccindy

falcon69 said:

good thoughts

mccindy...Thanks so much for your kind reply to my post. Your words are much appreciated! My son is optimistic and has a good attitude about his situation. He has always been the type to take things as they come and "roll with the punches". It is hard as a parent to see your child be go through something like this. I would trade places with him in a heartbeat if it were possible.  It sounds like you have a positive attitude and are getting on with life, which is as it should be. Please know that I wish you all the best:)

Thanks!

Thank you so much for your kind wishes.  I know as aparent it must be so hard to watch your son fight his cancer.  My mother has told me she wishes she could take my place as well. I'm glad to hear your son is so strong and a good fighter.  Best of luck to you both!

Kees van Beelen

falcon69 said:

good thoughts

mccindy...Thanks so much for your kind reply to my post. Your words are much appreciated! My son is optimistic and has a good attitude about his situation. He has always been the type to take things as they come and "roll with the punches". It is hard as a parent to see your child be go through something like this. I would trade places with him in a heartbeat if it were possible.  It sounds like you have a positive attitude and are getting on with life, which is as it should be. Please know that I wish you all the best:)

Hi - would just like to add

Hi - would just like to add my encouragement here.  The chromosone deletion is key.  If the Temodar put the tumour in its place before, it's likely to work again.  I remind myself of that every time I have my MRI and hold my breath for the results.  I think the risk of developing leukemia from Temodar goes up 5-8% each time - odds I would take.  Keep the faith.

Besides telling my nine month pregnant wife of my condition, the second hardest thing I had to do was tell my mother.  Please stay positive - I still have a hard time with the anguish this terrible disease has caused to my family and friends.  

I will keep you and your son in my thoughts.  Best wishes.

4oregonz

oligo recurrence

Original oligo (was told oligo/astro, but now being debated) was 2005.  Craniotomy at small hospital after grand-mal and loss of consciousness.  Temador for at least one year.  July 2015 saw progression, followed at 6 months with no further progression, then two weeks ago more change noted.  Radiologist and neurologist traced change back to 2011. NCI algorithm is resection of recurrence. Will do that at UCSF.   I am feeling good about this as I will be in good hands at UCSF and in the back of my mind I knew this day was coming.  Does anyone have any experience in the last two years since the NCI protocol has changed?  It sounds like I will have the resection followed by hopefully only one radiation depending on depth of tumor bed.   In put appreciated!!