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What should be the last resort?

mkj
0 Recommendations

Decision time is near. Now that surgical resection is not longer feasible for the multiple hemangioblastomas my son has developed in his brain and spine, what should be the next step, radiation therapy or drug therapy? Should we pursue Avastin treatments or should we proceed with radiation of the entire spine and some gamma-knife interventions on the brain tumors? We also have to consider which course of action will have the most impact on the large tumor behind his eye. What do you folks out there think? Which of these two should be the last resort?

Explore topics in this discussion:

Brain tumors Radiation therapy Avastin

3 replies

raekel

dear mjk,

although i have vhl, i have not had to make a decision about treatment of numerous spinal tumors. therefore i would advise you to talk to joyce graff about this. she believes in second opinions and so do i. perhaps a second opinion referral will help. bless you, raeanne

Ieva

As far as I have read, radiation may be less comfortable because of oedema.

joyceg98

As I think we discussed in another thread, I would suggest you explore BOTH
(1) field radiation (NOT focused) that might stunt the growth of the multiple tumors, and
(2) Avastin or another of the new drugs.

Please send me a message to director@vhl.org so I will have your contact information on file and can let you know when the new clinical trials are ready to announce. Or sign up for the e-newsletter at http://vhl.org so that you will get the electronic newsletter (a couple of times a month).

Best wishes,
Joyce

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