Spinal Tumors

• By mkj
• Posted July 17, 2009 at 9:13 am
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My son is going to come home from the hospital tomorrow following yet another spinal surgery. He has had two hemangioblastomas removed from his cerebellum and six from his spine over the last six years. He too has lost the sense of touch in his legs, along with some motor control of his legs as well.

Our neurosurgeon told us that we have to try something different to slow down the growth of his tumors because he literally can't keep up with them through surgery alone. He recommended radiation of the spine and brain. We checked in with a radiation oncologist and he was putting together a course of action when we decided to get a second opinion as we had on another occasion.

We took our son (21 years old) to MD Anderson in Houston. We spoke with a neuro-oncologist and a radiation oncologist during our visit. Since our son's tumors are so widely spread, the radiation oncologist recommended that we try a more systemic action to stem the growth of the tumors. Our son will be starting a course of Avastin with an oncologist in our home town in about three weeks.

Your decision will hinge on many factors, but only you and your doctors can decide which is best for your particular situation. Some of the doctors that we have spoken with have indicated that you can only have a certain amount of radiation in your lifetime and they thought it might be a good idea to hold it in reserve for tumors that are in very hard to reach or extremely risky locations for surgery.

Read the VHL handbook and also do research on the web to find out all you can about your options. Our decision to use Avastin may or may not work for our son. It is probably just the first step, other than surgery, that we will attempt to stop the growth of his tumors. I started a previous thread on the discussion board entitled, "What should be the last resort?” The thread did not go very far, but I am thinking about reopening it to share what we have learned so far in our journey.

Best wishes during your next stages of treatment. Keep these things in check, and maybe, just maybe, researchers will be able to develop genetically specific enzymes for individuals that will stop these things in their tracks.

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• By beccaloo
• Posted July 20, 2009 at 3:02 pm
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MKJ is right! DO YOUR RESEARCH! Back in 2001/2002 there weren't nearly as many options for my spinal tumors. I had several and I didn't have the VHL handbook or this website. Heck, I was only 23yrs old and living by myself 1000 miles away from all my friends and family! Anyway, at the time my fiance (now husband) and I decided that really the only option was radiation. The tumors were too small for surgery and b/c they were all up and down the spine it was reasonable to have surgery. I went through a full 6 (or was it 8?) weeks of radiation. 5 days a week my David drove me an hour up to the hospital to get zapped and then an hour home where after about a week and a half I would just collapse on my bed and sleep. I lost all my hair (which was more traumatic than I ever thought it would be!) and had some skin burns from the radiation. We used aloe on the burns that felt like a sunburn. I also had really really bad nausea which my dr. gave me medicine for and I had to take steroids to reduce the swelling. I'm not trying to talk you out of radiation but it is not as easy as it might sound. I got so tired after about 3wks I was asleep in the car before we even got out of the parking lot! I missed 1 day of radiation b/c I actually passed out from exhaustion. Like I said, I'm not trying to scare you, but it's no joke.

Something I also didn't know is your body can only have so much radiation. Once you've had your max, that's it for the rest of your life so you can only do it once. When I had radiation, Cyberknife was in its infancy. Now it's more widely available. I've been told by more than one dr. that I could benefit from cyberknife but I can't have the procedure b/c it involved radiation of some kind and I've had my max. If I'd known that radiation had a lifetime maximum I may have done something different. Like I said, cyberknife was new and I'd had a dr. tell me that if it was more widely available he'd recommend it. Now that it's literally right down the street at my small country hospital, I can't have it.

Think about your options and definately read the VHL Handbook. I also wish I'd talked to more people to see what their opinion would be. I also learned to ask my dr.'s if the treatment we're talking about having is going to proclude me from having any similar procedures in the future. If I'd known the human body has a "Radiation Maximum" I'd have asked more questions.

Good luck. Whatever choice you make will be the right one for you. There are days that I'm sad and angry that I've had my radiation max and, as you know, w/vhl we're prone to pancreatic and kidney cancer (yep, had the kidney cancer too). But there's nothing I can do about it now. I also know no one can predict the future or what new medical treatment is coming down the pike. So, on those days, I look at my husband and my cat and my life, take a deep breath and thank God for all of it.

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• By joyceg98
• Posted July 21, 2009 at 12:27 pm
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Well, there's radiation and then there's radiation. In this discussion there are references to three kinds, so let me try to sort it out.

(1) There's stereotactic radiosurgery, using the focused beams of radiation shot from multiple angles to all hit one target. The target gets the sum of the various doses. You have seen us discuss this approach before, and you will find lots of information about this at http://vhl.org/stereo. It can be helpful, but it can also provoke a reaction not desired. There is a webinar scheduled for July 30 on this topic, which will give us more information on its use in the spinal cord than ever before. APPROACH WITH CAUTION.

(2) classic radiation therapy as used with cancer patients, which is what Beccaloo describes above. This approach is generally not recommended for people with VHL because it applies a great deal of radiation to the field and goes heavily against your lifetime maximum.

(3) "field radiation" which is kinda like (2) but less radiation applied to a wider field. I do know a number of people who have had field radiation applied to brain or spinal cord in hopes of stunting the growth of tumors throughout the radiated field. One woman did have some relief of spinal symptoms. Results are often difficult to pin down, as we are looking for restraint of tumors over some years, but it may be helpful.

And of course there are also these new drugs -- Avastin, Sutent, Nexavar -- which are currently getting more results in the kidney than in the brain and spinal cord.

The next generation of these drugs is expected to be more specific, which means you should be able to take less of it to achieve the same results, and should have fewer side effects. They are learning as they go forward.

We are in that gray period where we know the tools we have today are not ideal, but they're the only ones we've got. Do your homework, talk with your doctors, and make the best choice you can for your particular circumstances. Hopefully by this time next year there will be another tool in the arsenal.

Best wishes,
Joyce

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• By momacookie
• Posted August 30, 2009 at 11:39 am
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Thanks for responding to my message. I start radiation therpy on tuesday but seeing Joyce message I need to find out if its field radiation and not the other..... I just hope this works I will be parilized if they have to go back in my cord agai, Im already unable to use my right arm and my left is only 3/4 useable. Well thanks again for your thoughts

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• By Jeanne3
• Posted August 31, 2009 at 3:12 pm
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I think if there is any hesitation you need to talk to the doctors again. It needs to be clear in your mind that you have explored everything you possibly can. If you are not having symptoms then you need to see if you absolutly have to do this at this time. This is rather soon after your surgery in the same place in your spine with no clear growth of a tumor at this site yet. I feel you need to weigh side effects against the reasons for this proceedure. The slight possibility of paralization being the end result gives you reason to explore all avenues of treatment. I like the sound of exploring medication, but ultimately it is your decision. I hope you find the answers you need.
Mom

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• By CathyDHood
• Posted September 27, 2009 at 8:54 pm
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WOW, glad I found this discussion. I was recently diagnosed with four 5 millemeter tumors in the cerebellum and 1 in the spine the same size. They look big to me. It freaks me out to try and find the right choice. I am thinking about chamging my insurance to a PPO hte first of the year. Anyone have any suggestions if this will help mw find a great Doc to care for me. I need to talk to Joyce I guess to see what I should do. And yes I am having symptoms but I have been told I have arthritus too. What to do?
Cathy

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• By joyceg98
• Posted September 29, 2009 at 12:13 am
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You should really take the time to watch the webinar by Dr. Asthagiri. It's an hour and a half, but WELL WORTH THE TROUBLE! I have an article summarizing this that is in final review and will hopefully be up on the net in about a week, but meanwhile, the presentation is EXCELLENT and explains in great detail about surgery and stereotactic radiosurgery.

There are new drugs coming out, but no magic bullet -- YET. Stay tuned, since the drugs are getting closer, but still about a year out.

All best wishes,
Joyce

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• By raekel
• Posted September 29, 2009 at 11:58 am
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hi stephanie,
please be cautious with radiation, including cyberknife and gamma knife. hemangioblastomas usually swell, and sometimes the swelling can have devastating results. i know this from personal experience with cyberknife treatment of an asymptomatic hemangioblastoma of the brainstem. while my cousin, with the same tumor and location, enjoyed a positive outcome with cyberknife, i did not.
i declined 6 mos. after treatment due to late effect radiation edema, or swelling. the swelling was bad, and had me bedridden for 2 years--i was unable to walk, or swallow, or control the use of my hands. 3 years after cyberknife i am finally making slow improvement. in hindsight, i should have opted for open surgery.
be sure to ask your doctor if she or he has a plan to combat swelling, and is there enough room in the effected area to accommodate swelling,
best wishes,
raeanne

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• By mkj
• Posted October 6, 2009 at 9:37 am
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I would like to update those of you who have shared this thread with the decisions we have made in regard to our son and his multiple CNS hemangioblastomas. Our visit to MD Anderson was very worthwhile. We met with two doctors, one an oncologist, and the other a radiation doc. Their main man for VHL was on vacation that week, but they consulted with him during their tumor board the following week before giving us their recommendations.

The folks at MD Anderson recommended that he have another surgery for a large HB on his thoracic spine. Our neurosurgeon decided to try and get as many of them as he could within reason because the next step in treatment would put further surgery on hold for a while. He removed two tumors from the spine, one came out fairly easily, but the other caused more problems and our son now has some more deficits with his ability to walk. Our neurosurgeon was really leaning toward radiation treatments, but the MD Anderson doctors thought that he needed a more systemic approach because of the sheer numbers of tumors that had developed and also their rapid rate of growth. At first, the oncologist in Houston suggested Sutent, but the VHL doc thought Avastin would be a better choice.

Our son started Avastin treatments about two months ago. Our local oncologist did some baseline MRIs before we started and then did some follow-up MRIs last week. Nearly all of the tumors have remained stable. There was also less enhancement showing up in the tailbone area which may indicate that the vast numbers of small tumors he has in that area are now receiving less blood flow and their propagation may have slowed as well. We are of course, hoping that in the next few months of treatment that the tumors will begin to shrink. Some new biotic drugs are now being tested and more hope is on the horizon. Hopefully someday soon there will be a way to design a specific genetic drug for each individual’s specific ailments.

On a final note, there was an article about biotic drugs, including Avastin in this past month’s issue of AARP Magazine.

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• By TJ7334
• Posted October 8, 2009 at 8:20 am
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A good friend of mine with VHL had spinal tumors removed in July 2009. If there had been reasonable alternatives such as avastin, sutent, nexavar or even radiation, nothing was mentioned to him. Also not mentioned to him was the possible ramifications of the spinal surgery. Instead, they acted as though everything would be fine and about 8 weeks after the spinal surgery, they'd be ready to remove his cerebral tumors--so they scheduled that surgery in early September. It never occurred.

Instead, he has difficulty walking without a cane, still has pain, and now has absolutely no bladder or bowel control. He has virtually no sensation from his lower waistline to his upper thighs, or in one calf/foot. Headaches that he never had before are now excrutiating. And the worse part? None of his team of doctors set up any follow up therapy and he's left in his current state with virtually no guidance. He's stuggled to get his own doctors to even talk with him following the surgery. The one time that he was able to see the spine doctor again, he was told that the headaches were being caused by steriod withdrawal, but no explanation was offered for all of the other issues.

My point? Spinal surgery is always, always, always serious. Make sure you have a good team of doctors. Check with other people who have used them to make sure they won't just leave you hanging after your surgery. If there is any reasonable way to avoid spinal surgery, give it serious consideration. Talk to your doctors about the alternatives and don't just automatically allow them to rush you into spinal surgery if there are workable alternatives.

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