Whole brain radiation and thalidomide treatment

Hello,

My mum was diagnosed with thyroid cancer approx 6 yrs ago.  It has been popping up every now in different areas but it seemed to be under control.  approx a year ago it spread to her brain where she had 2 tumors and had successful surgery to remove them with ongoing treatment.  now a year later it has reoccurred but now with 3 tumors.  She went into surgery 2 days ago to have them removed, but they had grown and unfortunately were in areas that could not be operated on.  The specialists have now suggested full brain radiation treatment along with thalidomide.  As this situation is quite recent, I am trying to get answers too see if my mum is going to be okay.  If anyone has been through this, I would greatly appreciate the feedback... just so I have a better understanding to deal with this situation.  Thank you

Hi Sabastian,

Sorry about Mum. : ( Too scary.

Just wanted to say that my son had whole brain radiation and he seems to be fine. A little goofy, not such good short-term memory... but he is still here and I love him to bits.

Once Mum has recovered from the surgery, might they try Avastin? It helps in three ways.  (our NO says) 1. it reduces the blood flow to the tumors. 2. it normalizes the weird hyper-vascular structure of the tumors. 3. It helps with delivery of chemo to tumors.  But you have to wait until healing from surgery, at least a few weeks I think.

Best wishes and keep hope alive!
Sarah

mum : ) of Andy 27 dx gbm/pnet 1/09

Hi Sarah, Thank you so much for your reply and support.

Its all a bit daunting and trying to find information about it can be quite tough (as you cant beleive everything you read on the internet!!)

I can only hope that the radiation treatment works so no other treatment is required.

She starts it next week.. so if I need anything other info I know where to come!!

Thank you and I hope your son is healthy and happy :-)

My wife had WBR and I would not recommend it for anyone.  I now know that the bet alternative is gammaknife for brain mets.  WBR is only palliative which means that you have 9-16 weeks of living hell to live.  Look at the stats.  They don't tell you that.  We contacted Dr. A. Wolf at the Miami Neurosurgical Center.  Speak to him directly.  It's your only real hope.  His success rate is very high.  He follows up with Monthly MRI and re-treatment if necessary.  I have personally talked with his patients who have undergone up to 8 treatments over 5 years for 9-10 mets and are doing very well.  Side effects of gammaknife are minimal so quality of life is high.  P 

Another thing I've learned is that most of these facilities treat you with what they have.  They can't justify GammaKnife equipment because it is very expensive and they don't have enough use to justify purchasing the equipment.  Neurosurgical centers like Dr. Wolf's (Miami Neuro) have very high use rates so they are highly experienced and have high success rates.  There are 5 or 6 others in the country.  I find Dr. Wolf and his staff to be very professional and confident.  They are also very accessabe by phone.  They also have the very best equipment available ....which is important.  Good luck and God Bless...P

 Thank you so much for your response. Unfortunately I am in Australia, however I wiill get onto their website and have a look at their information.  I have not heard of the gammaknife and the doctors have not mentioned it, but I will also enquire about that as well.  At the moment the WBT is going ahead with approx 10 sessions with the thalidomide treatment as well.  I can only hope that it is a succuessful outcome.

Once again thank you and god bless.

You should go to this web site and just read about your opeions. - "http://sd-neurosurgeon.com/diseases/brain_tumors.html".   WBR alone is palliative and will only add a few weeks to her life...and they are not good weeks.  You can stop WBR at any time.  GammaKnife is a one seion procedure with no side effects.  Do it even if you continue with WBR,  Your mum will have a fighting chance.  If it were my mum....I would get gammaknife right away.  The level of ignorance among the doctors is appalling.  My wife was being treated at Mass General Hospital in Boston.  They are rated highly.  They don't know anything about GammaKnife or cyberKnife either.  Get her to a place that does if at all possible.  I learned the hard way that you must advocate for yourself.  Learn all you can.  I'm praying for you and your mum and that her side effects are minor.  It's very hard to watch my 46 year old wife struggle every day with side effects from WBR...God bless you both.