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Treatment of optic nerve tumors

AEckerman
0 Recommendations

Once again, I am on a mission to find the latest information in dealing with optic nerve tumors.

My 16 year old daughter, Chloe, has three eye tumors. One on the optic nerve, the other two in the other eye are near the fovea.

She had one laser surgery last fall. Her vision was affected, so we have been reluctant to proceed. We have been in a watch and wait mode. However, she was recently seen by our retina specialist and it appears that they have grown. He feels like the tumor will grow and get to a point where laser surgery will not be an option anymore. It will be too big and "juicy."

Clincial drug trials may be an option for us. We are looking into this now. I feel like the clock is ticking and that we must make a decision soon.

I would very much appreciate your feedback regarding drug treatments and/or laser surgery.

I think I probably posted this exact message a year ago, but I know a lot has changed since then.

Thank you in advance for sharing your experiences.

God Bless,

Alison

Explore topics in this discussion:

Surgery Ocular melanoma Melanoma Radiation therapy Avastin Glaucoma Pain Sunitinib Sutent

27 replies

donnab

That is such great news Allison. I am so happy for Chloe! She is so young and really deserved to have a good outcome with the PDT.

If the Sutent does not work for me, I might check into seeing if there is anyone here in my area that has any experience with PDT and optic nerve tumors.

joyceg98

FABULOUS!! Congratulations to you all.

Love,
Joyce

ReneeMichelle

Yay! I also had good results with the PDT, and I am so glad to hear it is working well for Chloe too. What good news! I had PDT three times almost a year ago, and all has been stable since.

AEckerman

SUCCESS!

I just wanted to let everyone know that the PDT therapy has been working beautifully! Chloe's vision is now 20/40 - she had the therapy six months ago. It was 20/70 just eight weeks ago. Most of the fluid around the tumor has diminished substancially. We are very happy to have chosen PDT; it was the answer we were looking for!

AEckerman

Hi Donna,

We just saw Dr. Chew last week. I think we are also going to try the Sutent. MD Anderson is running a similar trial, so I think we will do it through them since we live in Houston. Since Chloe is only 16, we are waiting for approval through Pfizer.

It would be nice to hear from anyone who is participating in this trial, or would be willing to share their experiences with Sutent.

Please

donnab

I just got back from NIH and a visit to Dr. Chew while I was there. My optic nerve tumor is apparently still leaking as I now have much more fluid/lipid over the macula area which I have not had much of before.

I am thinking seriously about starting the Sutent (Sunitinib Malate) pilot study that just opened up with Dr. Catherine Meyerle at NEI.

Dr. Chew and Dr. Meyerle also talked about another study that is in the works for a new surgical radiation treatment. They would be able to go in and surgically place the radiation right at the tumor. This radiation has a very fast drop off rate and Dr. Chew thinks they may very well be able to place the radiation without it damaging the optic nerve. This is still being put together so it'll probably be another 6 mo - 1 year before it's approved and ready to go.

donnab

Donna - you had direct beam radiation that is different than proton radiation, correct? It sounds to me like proton radiation would be safer. I am only saying this because of the "exit" issue that Marie mentioned.

To answer your question: First off, I want to make sure anyone reading knows I was sharing my experience. Radiation is only a last resort option after all other options have been exhausted. Yes, the radiation I had did exit, I lost a patch of hair in the back of my head. Radiation can do bad things to your eye both within the first year and over time since the radiation keeps doing it's thing long term. I was fortunate and have been fortunate to so have a good outcome with it, but who knows what will be the case 2 years, 5 years or 10 years from now. The doctors did explain that the dose of radiation they give you for the eye is so small compared to what you would receive for anywhere else in the body that the chances of it causing problems other than with the eye were pretty slim.

Obviously this is not an option for your daughter right now. And I really hope one of the drug options actually work out for her.

joyceg98

Alison, it's not just a matter of assembling data and checking a database to see what works. You are dealing with a very specific, quite unusual problem. A minority of people with VHL are dealing with tumors on or near the optic nerve, and especially ones that are exudating.

You have done a great job gathering perspective. Now it's time to choose a specialist and work with that specialist to choose a path. The first choice may or may not work for Chloe, in which case you and your chosen specialist together will choose option #2.

Best wishes,
Joyce

minimammax4

Hi Alison,
You and I have spoken about the systemic IV Avastin injections. I whole heartedly agree with giving that a try, if it is possible. With no side effects, and the tumors basically remaining "stable", it's the best option we have came across so far. Sutent was not good for our daughter with all the side effects she experienced with it. We have been doing the Avastin this way for almost 3 years now. It's all thumbs up for us! I hope you are able to receive more feedback on this form of treatment.

AEckerman

Thank you so much, Donna, Marie, Joyce and Renee, for helping me muddle through this. You all are such wonderful friends both on and off of this site! =)

Donna - you had direct beam radiation that is different than proton radiation, correct? It sounds to me like proton radiation would be safer. I am only saying this because of the "exit" issue that Marie mentioned.

Joyce - The focused radiation you mentioned, is that the same as direct beam?

I have also heard of "Strontium" (sp?) radiation, which is done in the OR through an incision. Anybody familiar with that?

I have talked to one person who had success with the systemic IV Avastin. She didn't experience any side effects. Is there anyone else who has done this and would like to share their experience?

One of our local retina specialists recommended Avastin and PDT. Our other local retina specialist said PDT was not an option in her case and prefers traditional laser - he did not explain why. They both feel like we can no longer wait, as there is lipid trailing to the macula and it is just a matter of time before her vision is affected. Her vision went from 20/20 to 20/400 after the laser last fall, after several months it improved to 20/40 which is where it has remained. Of couse, the 20/40 is with her head moving around to achieve that.

With 60% of all VHL tumors being in the eye, I wish that we had direct access to a data base that we all could see clearly what has worked and what hasn't. I could continue this discussion privately, but I know there are others that might be benefitting from this much needed information as much as I am. So I am attempting to keep this discussion alive.

God bless,
Alison

marie3

Donna B.

It's funny. As I was typing my message to Alison-you posted yours to her. Your message wasn't there 10-15 minutes ago. We must be sending subliminal messages to each other.

Marie

marie3

Alison,

I just remembered this....at one point Dr. Chew mentioned the possibility of intraveneous Avastin injections versus intraocular injections. Although there are side effects of high blood pressure. Back then, she felt that Avastin, injected systemically, would reach the blood vessels better and remain in the eye longer.

I never had this done. I don't know what's going on with it to date.

Donna B., did you have this done?

Marie

donnab

Good Luck Allison and I hope that you are able to find a treatment that will at least do no more damage to your daughters vision.

I was also in the Lucentis trial with Dr. Chew in 2005. I have an optic nerve tumor in one of my eyes. After receiving treatments for a year my vision deteriorated to the point that I had to be withdrawn from the Study. I received radiation treatment in June/July of 2006 and seems to have stopped/slowed tumor activity for now. I don't think I have lost any vision, but I have not gained any vision either. I had direct beam radiation for 2 weeks, every day. The only side effects I had was an area of hair falling out on the back side of my head where the radiation "came out" of my head. But, they had no idea what all might happen because it can vary from person to person.
At my last visit with my Dr. he mentioned possible PTD therapy if my tumor does not stop the leaking. He also said that PTD has improved since we first considered it back in 2004. Sounds like that may be a viable option to consider after hearing a few of the stories.

Know that your family is always in my prayers and I will especially pray for a good solution to your daughters treatment and vision.

AEckerman

Sutent has been mentioned as a possible treatment - usually reserved for advanced RCC. I would love to hear from anyone who has tried this drug.

We are going to see Dr. Chew in one month, so trying to learn about every possible treatment.

Thank you all so much for your help!

Alison

marie3

Alison,

The doc at Boston Mass. General is Evangelous Gragoudas. He came highly recommended from my Retinal Specialist, as well as Dr. Chew. I always consult with Dr. Chew via E-mail before I do any thing to my eye. PDT was mentioned to me in the past, but not as a real option. Only two hospitals in the country perform Proton Beam Radiation in the country. Boston Mass. General and Lo Lalinda (spelled wrong) in California. Proton radiation was my last hope to save the eye. It was explained to me like this...... Traditional radiation has a point of entrance and exit, therefore damaging healthy tissue. Proton radiation has a point of entrance and stops at its target--no point of exit. Also, it is suppposed to be more accurate and localized when reaching its target. The treatment is the same for ocular melanoma---- EXCEPT with ocular melanoma you receive a higher dose of radiation PLUS prior to radiation, discs are sewn into the eye, surrounding the tumor. In my situation, 1 to 1 1/2 years later, the tumor is shrinking BUT the eye is internally hemorrhaging. Even in a dialated exam the docs cannot even see through to the back of the eye due to all the blood that is present. We're not 100% sure what exactly is bleeding. Tumor? Damaged tissue?
I'm not trying to detour anyone from radiation. In my situation, I was told by NIH and by my very reputable doc, "If you do nothing you will lose your eye. Radiation is the last hope in saving the eye. You may lose the eye even after radiation." Right now, the eye is blind , but it is not painful and it cosmetically looks good. I take it one day at a time, knowing that surgery could be near. I feel very fortunate to have one good eye. I know many people are facing issues
with both eyes. Sometimes having VHL makes me feel like LIFE STINKS (I have better words), but then sometimes it makes me appreciate the small things in life.

Sorry to babble so much. Hope this helps.

Be strong!
Marie

AEckerman

Hey Marie,

Do you mind telling who the doctor was in Boston that Dr. Chew referred you to?

Did you ever try the PDT before the proton radiation? Was that ever suggested?

Thanks!
Alison

marie3

Hi all! I forgot to mention in my earlier post ----my tumor is on the optic nerve. Before I had proton radiation, I consulted with Dr. Chew. She knew the Doc in Boston who performed the radiation. All the doctors I consulted with said radiation was my last resort. Lucentis injections (cousin drug to Avastin) didn't work.

Marie

ReneeMichelle

Actually, I had PDT here at home. My own local opthalmologist did it for me, Dr. Leland Dhurjon. He's very good. We're lucky to have him way up here in Northwestern Ontario. The drug required for the PDT is not covered by Ontario Health Insurance Plan (OHIP) and it costs $3000 per treatment, but Dr. Dhurjon contacted the drug company and they donated it to me! Thank goodness. Saved me $9000 all ready.

I think most retinal specialists probably do PDT. It is more commonly used for Macular Degeneration, and so isn't a rare treatment. From what I understand.

I should mention, right after the PDT my vision got slightly worse for about three weeks before it started to improve. And I think it was 5-6 weeks before it stopped improving. It didn't make my vision perfect, but it made it better. I am very glad I tried it. Although, the tumour I had treated was not one of the ones on my optic nerves. I hope someone with that specific treatment can comment. Anyone??

AEckerman

Good to hear from you, Renee.

Who did the PDT? It is wonderful to hear that you haven't experienced any negative effects - I like that part.

Keep in touch,
Alison

AEckerman

It sounds like PDT may be something to seriously consider. Is this therapy available only at certain hospitals? Does anyone else have any direct experience with this modality? Good or bad?

Thanks so much,
Alison

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