low grade astrocytoma

[ruth]

hi my son was diagnosed with a low grade astrocytoma from t9 to L1 in april 2010 at jus 18months old. they partially removed it and left the rest as it would have paralysed him and they told us that it would be ok to leave as it was slow growing and could take years to grow. but within ten weeks it had growing back. i was just wondering has anybody else experienced anything like this? it certainly doesnt seem slow growing to me but they continue to say it is. he is undergoing 18months of chemo. but from research i have done myself i see that it doesnt tend to work that great and that radio is the better option but because of his age they wont even consider it. any thoughts?

[sophiem]

Hi Ruth I am sorry your son has to go thru this at 18 months! My daughter has the same thing .She is 12 . She underwent surgery in July and they were only able to biopsy the tumor . She also is doing the chemo (70 treatments ) of Vinnblastine. The oncologist assures us that they have had good results with it .It wont shrink tumor but stop it from growing and "Kill It" so it no longer causes pain.This is how I understand it anyway and this is what I hope and pray for . Radiation can't be done till they are fully grown as it stunts growth. So we do have options but be positive that chemo will work and this will be all behind us one day.Is he also on Vinblastine ? Any side effects?

[thanks]

thank you for your reply. its so nice to speak to someone in the same position. im actually from the uk i joined the american site because there is nothing in the uk dedicated to sct. eoin is having a mixture of carboplatin and vincristan. so it would be interesting to ask the oncologists about the drug your daughter is having. i hope she is doing well.

[sophiem]

I know exactly how you feel .It is good to talk to someone going thru the same thing especially because it is such a rare thing.I am in Ontario Canada and my daughter had the surgery in Toronto sick kids and they only see maybe 4 sct a year there!
My daughter is still recovering from the laminectomy she has a large incision (40 stitches ) her tumor is 10mm L2 to T10.She has pain in her low back and thighs for which she takes tylenol and gabapentin .This really helps.Her left leg feels numb like it is asleep but they say that may come back.She is doing physical therapy but before all this she was quite the athlete so it is all very hard for her to be this way.
She has also developed a hunch across her upper back which xrays have shown to be kyphosis .Bones have moved since the surgery and we are waiting to see an orthopedic surgeon.Hopefully this can be fixed with a brace .It has all been very overwhelming!
She has some side effects from the chemo like upset stomach but overall pretty mild. From what I have read Vinblastine is a newer chemo and the vincristine and carboplatine was an older regime.I'm not sure though.It wouldn't hurt to research or ask your oncologist their opinion.As far as the tumor growing our Docs did say this may happen at first then it does stabilize. not uncommon.Try not to worry about that .Astrocytomas are definitely slow growing so thats why they take this long approach to stop them.We will have our 13th chemo this week..57 more to go!

[Cat]

Hi Ruth, we sound in a very similar situation, but it's my partner Marc who has the tumour, he is now 26, they tried to remove his in september but was told that they couldn't for paralysing him from waist down but we were told from the First biopsy that is was so low grade, barely active they didn't think it would bother him for years so was sent to rehab and home without any further treatment. Ten weeks later Marc could barely walk, after numerous phone calls and visits to hospital they did another MRI and the tumour had grown and filled the space the surgeon had made from the decompression, he had a further op to decompress and we are now awaiting to start chemotherapy and radio, should start week after Xmas. We were so shocked that it had grown so quickly but our oncology doctor said this can happen sometimes! We have a 19 month old too so can only imagine your worry, I hope things are going well, ru from the uk? What dignoses have you had since it has grown?
Best wishes cat

[sanches]

had same problem