I am new to the discussion board. My son has been tested twice for VHL and the tests came back negative. He has had two surgeries to remove HBs from his cerebellum, one six years ago and the other two years ago. He has had three spinal surgeries to remove HBs. He lost some motor control of his left leg after the last spinal surgery. Our neurosurgeon said that during the first four surgeries the HBs were not "attached" to anything, but the last one was.
My son has shown tremendous courage in dealing with this condition. He was a gifted athlete and has fought hard to recover from each of the five surgeries. The last two surgeries have really limited his athletic possibilities but not his zest for life.
His last two MRIs have revealed HBs too numerous to count along his spine and some of them are growing rapidly. He now has a number of HBs around his brain stem and in front of the cranium. The one between the cranium and his eyes has grown to an inch in diameter in one year's time. Our surgeon said it is time to look at something new because there are just too many of them to keep up with through surgery. We see a radiation therapist tomorrow.
Can the entire spine and lower brain be irradiated safely? They do have a gamma-knife available, but is a one inch diameter tumor too large for gamma-knife surgery?
I have been following the discussion board for a couple of years. As aggressive as these tumors are, I am wondering about some of the chemo drugs like Sutent. My oldest son and I are working on a trip to MD Andersen to see if my youngest can qualify for a clinical trial in this regard. I know they have proton therapy there, but from what I understand, it might be next to impossible to qualify him for that.
Can anyone out there give me some advice? I really need to help my twenty-one year old son in his valiant battle against these agressive hemangioblastomas.
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Agressive Hemangioblastomas
- By mkj
- Posted May 28, 2009 at 2:08 pm · 9 replies
- In Health management issues
- Shared with the public
Explore topics in this discussion:
Exercise Cancer Surgery Brain tumors Radiation therapy Avastin Morphine Angiogenesis inhibitors Pain Sutent Stress
9 replies
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- By mkj
- Posted June 1, 2009 at 8:15 am
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Ministertammy,
Thank you for your reply, your distress about reaching a dead end is what I have feared for quite some time. We took our son to the Mayo Clinic two years ago. The doctors there were very efficient and pretty much concurred with what we had heard in Omaha. Surgery, as long as it could be safely done, was the best option to start with. The radiation oncologist advised us to "save" that route for more difficult tumors that might arise. Plus, she said that for someone as young as our son, the radiation in and of itself could lead to other problems. Well, now that gun is out of the holster. Our neurosurgeon thinks something must be done to slow the growth of the numerous tumors he has. I believe the radiation doctor is leaning toward the field radiation that Joyce has mentioned. To me, this appears to be a stop-gap measure. The thing that scares me is that the last resort might be Avastin, or Sutent, or one of the drugs in their class. "Last resort" is not a stage you want to get to anytime soon. God willing, maybe the "magic pill" will come sooner than later.
- By joyceg98
- Posted May 31, 2009 at 10:20 pm
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I doubt that cyber-knife or other forms of stereotactic radiosurgery would be appropriate here. See http://vhl.org/stereo
One possibility in the radiology arena might be "field radiation" which is sometimes used in an effort to slow down the tumor growth. They just irradiate the entire area (NOT focused radiation). Focused radiation often provokes swelling of the tumor, which would compound the symptoms in the short run.
There are altogether about 26 new drugs "in the pipeline" in the area of angiogenesis inhibitors. Two centers are working on setting up trials at this time (NIH and Dana Farber) but it is too early to share information publicly at this time. I'll keep you posted as soon as there is information ready to share.
Best wishes,
Joyce
- By Ministertammy
- Posted May 31, 2009 at 10:17 pm
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My husband has been getting Avastin treatments since last August. Unfortunately his scans do not show that any of his brain tumors or spinal tumors have shrunk since he started the treatment. Best case for us seems to be that most of the tumors appear to be stable. But the neurosurgeon at Mayo Clinic thinks that at least one brain tumor has grown. Our oncologist did get the insurance company to approve the Avastin treatments for 1 year. We are getting close to the end of that year. I don't think that he is experiencing much side effects from the treatment. He continues to be very nauseaous -- vomiting almost daily -- and still requires morphine for pain relief. I just searched the clinical trial database last week to see if he might be eligible for any other clinical trial. We already tried the Sutent through Sloan-Kettering in NYC. I feel like we are at a dead end after having 2 brain surgeries, GammaKnife and Cyberknife radiation, Sutent and Avastin.
- By mkj
- Posted May 31, 2009 at 2:14 pm
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Thanks again for your replies.
Joyce, do you have the names of the new drugs that are about to be tested?
Judy, I really appreciate your interest in my son's case. I hope your daughter is feeling better and that the Avastin has supressed all of her tumors.
I am pretty sure that insurance will become an issue. We live just outside of Omaha and have been working with doctors from Midwest Neurosurgery and now Methodist Hospital's Eastabrook Cancer Center. Eastabrook has a gamma-knife and a hospital in Lincoln has a cyber-knife. I called the hospital in Lincoln to inquire about their program and was told that our insurer does not cover cyber-knife because they consider in an "experimental" treatment. Hopefully, between the radiation division and the oncology division at Eastabrook, we can get all of their strategies approved by our insurer and we can put the kibosh on this rapid tumor growth.
Thanks again ladies for your prompt replies.
- By RubySue315
- Posted May 31, 2009 at 11:18 am
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My daughter did not have any side effects from Avastin. It was approved by the FDA about 2 weeks ago to treat Brain Tumors. When she first started the ins. wouldn't pay for it, because it wasn't for brain tumors.So her oncologist put it in for a tumor she has on her adrenal gland- they said ok for that! Makes no sense.But Avastin can help with other tumors in the body also. It got her brain tumor smaller then what it was before she went for brain surgery. Next we will find out if it had any effect on her adrenal tumor, and a tumor she has on the tail of the pancreas. Let me know if your son gets to try Avastin,it helped my daughter in a big way. Take care- Judy
- By joyceg98
- Posted May 30, 2009 at 7:22 pm
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Avastin is on the market (approved for advanced kidney and colon cancer), but not yet "approved for VHL" which means that your insurance company may consider it experimental for VHL, so they may decline to pay for it. Argue with them a bit, and ask your doctor to help argue with them. Sometimes they will pay.
Nonetheless, it is on the market, and your doctor can prescribe it for "off-label use". (That is, the use of Avastin for VHL is not on the label itself, so the doctor is prescribing it "off label.") In order to get "VHL" on the label, we need clinical trial results.
It is worth a try, but is not beneficial for everyone who takes it, so it's not a "miracle drug" for everyone.
Yes, it's worth a try. There are a couple of other drugs "in the wings" -- almost ready to go into clinical trials -- that might work even better, but I'm not asking you to wait, just know that if this one doesn't work well, there might be other options soon.
Please do share your results -- both positive and negative -- from these drugs. Even though you're not in a clinical trial, these kinds of "anecdotal" reports at least give us a sense of which one(s) look most hopeful.
Best wishes,
Joyce
- By mkj
- Posted May 30, 2009 at 12:32 pm
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Thanks for the advice. My son's eating habits are typical of most teenagers and are not the most healthy of choices. He is now at a point where he might make better choices in that regard and is also willing to try some supplements.
I have heard of Avastin but I thought it was still in the clinical trial phase of drug approval. The radiation therapist we met with yesterday said that he would make a referral to an oncologist in their facility and that he could speak with us about drug interventions. Did your daughter have any harmful side effects from either the radiation therapy or Avastin?
- By RubySue315
- Posted May 29, 2009 at 8:32 pm
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Please ask your doctor about a drug called"AVASTIN". My daughter has a brain tumor-had surgery on 10/02/06.Couldn't remove whole tumor because of location.Had 6 weeks of radiation.It got a little bit smaller.August '08 another mri.Tumor had grown bigger then before surgery. No more surgery-radiation would take what eyesight she had. Found a doctor who asked if she would try something differant. He found a cancer doctor in Conn. who used Avastin for some cancer's. Shehad 5 treatments- had an mri on Wednesday.Her tumor is now smaller then before she went for surgery.If you want I will call you and give you more info. This is my daughter's miracle drug! You must always have HOPE. Take care- Judy
- By joyceg98
- Posted May 28, 2009 at 2:33 pm
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Welcome! It's great to have you with us.
It would be good to get some medical advice on your question about irradiating the spinal cord. Yes, it can sometimes be helpful, but this is not the place to determine whether it would be the right approach for your son. Write to me at director@vhl.org and I'll give you a couple of references.
Whenever there is aggressive tumor growth, there are several things to consider. You will likely think these are off the mark, but after 16 years of exploring this, I can tell you they are the best defense we have:
- nutrition. Is he eating enough fruits and vegetables? If not work with him to figure out what appeals to him, or what you could do to make fresh fruits and vegetables he will eat. A juicer is one approach - you can drink more vegetables than you can eat.
- sleep. Is he getting enough sleep? That's the time the body needs to repair itself.
- stress management. Exercise itself can be a good way to manage stress, so this might not be his issue, but we all need some outlet to help us manage stress.
- exercise. Moderate exercise is good for everyone. Stretching beyond your limits, however, has been shown to reduce the effectiveness of the immune system. You might want to work with a sports nutritionist to make sure that he is not reducing the effectiveness of his immune system with all the exertion. Often this can be compensated by increasing certain vitamins, but this is best done with the help of a nutritionist.
Best wishes,
Joyce
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