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Thalidomide use for multiple spinal cord hemangioblastomas

Kberri310
0 Recommendations

I'm looking for any information for thalidomide use in VHL spinal cord tumors. Recently it has been brought up by my 13 yr old son's Doctors at Dana-Farber Cancer Institute, Boston. He has already had 2 surgical removals of brainstem and cerebellum hemangioblastomas. There are multiple spinal cord involvement. C-5 and T-10/11 are growing now with a new symptom of back pain. Surgical removal of T-10/11 is trying to be avoided if possible. Any type of radiation therapy also has not been recomended for him due to the size and location. Has anyone had any experience with thalidomide use? Avastin can't be used for him due to multiple infarcts to his brain stem from a hemorrhage during surgery.

Explore topics in this discussion:

Cancer Surgery Back pain Hydrocephalus Radiation therapy Avastin Celebrex Cyclophosphamide Hemangioblastoma Chemotherapy Pain Thalidomide Bactrim

5 replies

dianez

My son, 17, tried a chemotherapy course prescribed by an oncologist at Children's Memorial that included thalidomide for multiple brain/spinal cord hemangioblastomas. It was a 21 day course of etoposide, celebrex, thalidomide & bactrim alternating with cyclophosphamide, celebrex, thalidomide & bactrim. The major side effect of the thalidomide was sleepiness. He experienced some nausea from chemo drugs also. He had to stop treatment after 2 cycles because a cyst on a tumor in his cerebellum grew (unrelated to chemo) & caused hydrocephalus (sleepiness & nausea are major symptoms) which required surgery (again!). Still has not stabilized to the point of starting treatment again & treatment was not long enough to see any results related to tumor shrinkage. Good luck with your decision making & please contact me if I can help at all.

lifeandhope

Your kids are having neuro tumors at 12 and 17? My girls are three and five, and I had my first brain tumor removed at 24 (probably would have come out much earlier, but we didn't know I had vHL yet). I thought I had a lot more years before I had to worry about CNS tumors in the girls. I am on top of getting their age-appropriate screenings, but when should they start with MRIs of the brain and spine? There is no way either of them could lay still for an MRI now, they'd have to be sedated. I watch them for neuro symptoms and get them neuro exams now, but no MRIs yet. When did your kids' tumors start? Is that typical for your family mutation? Should I be doing anything different for my little chickadees? Ugh...I hate having VHL, but I hate that my girls have it even more. My little babies....it just doesn't seem right, does it? Thanks in advance for any thoughts you have.
Tara

Kberri310

Hi dianez,
Thank you for your reply. I hope your son is doing better. VHL has been difficult to live with as an adult, it is devastating to me to watch my children and hear about other children having to experience VHL effects so early on in life.

Take care,
Kerri

Kberri310

Hi Tara,
I found out I had VHL after my 2 children were born. I was told I didn't need to do MRI screenings till they were teenagers or started to have signs/symptoms. My daughter is 16 and currently does not have any CNS hemangioblastomas. She does have some small kidney and pancreatic cysts which are stable. My son who was 11 at the time, developed nausea. His MRI showed a large brainstem hemangioblastoma. It was a difficult surgical removal because of it's size and location. He suffers from many complications. I wish we had caught it earlier on MRI. I don't know if it would have made a difference in his quality of life. I developed brain hemangioblastomas in my early 30's and they are still stable with no treatment yet at 38 yrs old. I hope this helps answer your question. It seems everyone responds differently with VHL, even within the same family. I feel like I'm always wondering if I'm making the right decisions. Best wishes to you and your family.
Kerri

joyceg98

Statistically there are few children who have brain and spinal issues before puberty. However, puberty is occurring earlier and earlier these days, so it may be necessary to review the guidelines. Please look again at the screening guidelines in the Handbook, and let me know if you would argue for change.

http://vhl.org/handbook
or the print edition (2005 or later)
If your handbook is older than 2005, please contact us to get the newer version.

We are currently reviewing the text, and plan to release an updated version in 2010. No major changes, but we are looking at the screening guidelines.

Best wishes,
Joyce

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