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Hi
I'm looking for feedback from people that have had trials with Avastin & Lucentis, especially anyone who has an angioma on their optic nerve.
I'd like to hear your views on the success of your treatment
My daughter has an angioma on her optic nerve, her sight has been fundamentally damaged & her doctor is putting forward a drug course, although they dont sound like they've been very eefective
Thanks
Chris
Hi Chrisbonin,
I can't speak for Lucentis. But my daughter has been receiving intravenous Avastin since Sept of 2005. She has the hemangiomas wrapped around both her optic nerves. We feel the Avastin has kept the tumors from becoming any larger, kept them stable. We have not seen much, if any growth out of either one since she has been on Avastin. She has received these injections by i.v. for nearly two years now, and on a biweekly basis for the most part.. However, we are now starting her on Sutent instead. She will begin that treatment Monday, and we will continue with that unless we start to see some kind of negative side effects, or growth from either tumor, and if we do see that, then we will once again start the Avastin back up.
Not sure this has helped you any, but thought I"d pass it along. Good luck. Hugs to you and your daughter.
Hi Chris,
I have a hemangioma on my optical nerve. I was in the Lucentis trial at NIH, under the care of a wonderful Dr. Chew. Over the course of one year I received 14 intraocular injections (2005-2006). Treatment was unsuccessful. My vision gradually decreased from 20/40 to 20/200. In February 2007, I received five treatments of proton radiation at Mass. General Hospital in Boston (Dr. Gragoudas). It will take one to two years to know how well the tumor responded to radiation. As slow growing as the tumor is, it also takes time to shrink. I definately won't regain any lost vision. There is a possibility I will lose complete sight in the eye. It was explained to me like this, "Radiation is not the most ideal treatment for retinal angiomas, but there isn't any other treatment available". My tumor didn't respond to the Lucentis injections so I didn't have any other option. I wouldn't rule out drug therapy if I were you. There is always a chance it will be effective on your daughter. I don't regret giving the Lucentis injections a try. Hope this helps. Let me know if you have any questions.
Sincerely,
Marie
Please inform me as to the outcome of the sutent. My son has lost vision the right eye due to several lasasrs and cryob and avastin and pdt and a vitrectomy with a belt and slicon and to our dilema lost his vision.. Now he is having vision problems with the left eye the "good eye" He had lasar and the fliud s have left scar tissue and his only vision is20/150 Sutent could be a possibility if we can get him on a trial at MD Anderson Please respond I know that this discussion was from 2 years ago. We want to help him now before it is to late He is 20 and has suffered so much how much more can he endure. God bless all
I was also in the Lucentis trial. I received 13 or 14 Lucentis injections and then had 3 Avastin injections (all ocular injections) at 2x/3x normal strength after the Lucentis. It did not help my optic nerve tumor. It did seem to scar up and stop a very small retinal hemangioma that was also in that same eye. I have also talked to a couple of ladies that had intraoccular Avastin injections for small retinal tumors (not on the optic nerve) and it worked for them. (they could have had lazer surgery, but for whatever reason they had Avastin instead).
I am in my 3rd cycle of Sutent now. (Cycles are 6 weeks long), I just had scans, etc at end of my 2nd cycle and it's too early to tell. The tumor may be a little less vascular, but it's just too soon to tell yet. Hopefully by the end of my 4th cycle we'll be able to see if it's having an impact.
Dear Donnab
How do you feel on the sutent would you recommend it for eye tumorts and scars in tjhe eye that are giving me limited vision I am blindv in the right eye and now my left eye I see shadows and floatersd the drs say what forv the lasar to heel
I await your advice
Thanks pupa
My Son has battled an optic nerve tumor for the past 11yrs, from age 10,The lasar surgery was the focus for the 1st 6yrs. There was gradual loss of vision and growth of tumor .We tried PDT therapy for a few years with little success. The fluid from Optic tumor continued to elevate the retina and vision was lost.In an effort to stabilize the eye we changed Doctors,and started a program with intraocular injections of Avastin, a moderate lasar treatment, 6 to 8 weeks. As scar tissue would build we would have a vitrectomy surgery to remove scar tissue and moderate lasar would be applied during surgery.My Sons tumor is stable after a 2yr period, no improvement in vision,dramatic reduction in fluid leakage,no further treatment,Dr follow-up every 6 months.We had a total of 3 Vitrectomy surgeries in a 2yr period. Our Dr was not convinced that Avastin was effective, but combination of all 3 approaches together was somewhat successful. Best of Luck.
How well did surgery work with three vitrectomys In my right eye I had a vitrectomy and now I am blind who was your dr and what was the follow up tre3atment while I was at this period I think i wasnt informed as what to expect maybe i shoul have asked more questions because maybe i could have saved my vision if there wqas another approach
Best of "lookin".
Pupa
Pupa, We don't know if Sutent is going to work yet. Hopefully will know more in about 2 1/2 months when I'm at the end of my 4th cycle. Since you don't have an optic nerve tumor and it doesn't sound like you have leaking to the extent that you have Retinal Detachement. Probably the best course for you is the standard treatments. Once we get further into the Sutent trial I will let you know how it looks.
Sutent is a Cancer drug and as such carries many side effects. It's not something I would recommend to someone who had any other options for treatment. We don't even know if it will be effective yet. For someone like me where there are absolutely no treatment options available, I see no problem with trying the Sutent. But, if I had other options for treatment, I would be trying them first.
My son also has a tumor on the optic nerve and has been through all of the possible treatment options. The one that has worked best for him is Photo Dynamic therapy (PDT) with Dr. Duker at Tufts New England Medical Center in Boston. Dr. Duker has used very small increments of PDT treatment, nibbling away at the tumor, and the tumor does seem to have shrunk, though his vision is nearly gone.
We were talking about it tonight, and he now feels that if he had begun PDT treatments two years ago, he might have more vision at this point. Cryo and vitrectomy are higher-risk approaches because of the significant risk of bleeding.
Early experience with PDT was very mixed. They now seem to have a better handle on the methodology, and this "nibbling" approach seems to be a good one.
Best wishes,
Joyce
Dear Donnab
Now that you've been on the sutent trial a bit longer how are you feeling and seeing? I hope good news. Since I spoke to you (or corrsponded) I had a virtrectomy and follow up of post op. but this week the dr. wants to give me a shot of avastin and the following week another lasar treatment after all I've been through Any suggestions
Pupa,
Unfortunately I got too sick about 2/3 into my 3rd cycle on Sutent and they had to suspend treatment. I started having issues with my Thyroid going hypo active during my first cycle (known side effect). They did put me on thyroid replacement meds which seemed to be working, but in my 3rd cycle my thyroid swelled up (I got thyroiditis). Although my labs were okay they don't know what could happen if I was to continue since this is something that has not happened with anyone else on Sutent. I went back for eye photos and scans at the normal 6 week interval at the end of my 3rd cycle, but they were unable to tell if it's made a difference. The one thing we saw was that some of the huge pooling of lipids from the optic nerve tumor was greatly diminished. They made the decision to suspend treatment for now. I will be going back again the week of June 1st. We'll do all scans again and see what things look like. If it looks like my eye is leaking again now that I've been off sutent for about 8 weeks, then we may talk about whether or not to go back on it. But, we are all concerned about whether or not I could have permanent thyroid damage if I was to stay on Sutent. No one knows the answer since they've not seen my exact side effects before. I will update on what the final resolution is for me after this next trip.
I did talk to Dr. Chew while I was at the NIH to see if she had anything else she was working on. There might be something else coming up to do with eye injections of a different drug than lucentis/avastin. I believe it's another drug that blocks VEGF. I will update as I hear more on that as well.
I do know that several people have been doing PTD with satisfactory results. I did talk to Dr. Chew about whether or not I should persue this course and she was undecided about PTD because sometimes it works and sometimes it doesn't. When it doesn't the outcome is not good.
Donna,
This is your week back to NIH. Please keep us posted on how things are going with Sutent. I'm hoping for the best and keeping you in my thoughts.
Marie
Hi! I'm curious to know why people opted for Avastin rather than having surgery (e.g., a craniotomy) to remove the tumor. Or was it that surgery was not an option?
Sometimes the tumors are so wrapped around things that surgical resection will cause irreparable damage. In our son's case, he has multiple tumors in his brain and along his spine. One of the doctors at MD Andersen suggested that his case seems to be systemic and the best course of action would be to choose something that would address all of the tumors rather than treating them one at a time. She was a radiation specialist and thought that using Sutent would probably be the best starting point rather than using a broad spectrum of radiation. The doctors at MD Andersen are going to discuss our son's case when their tumor board meets this Thursday. They will offer their recommendations and we will probably execute them with the doctors we have in Omaha. The only exception would be if proton beam therapy is appropriate for his optic nerve tumor, then we would return to Houston. Our neurosurgeon in Omaha is hesitant to operate on the tumor behind his eye and another in and around his spine due to the permanent damage that might result. He suggested that we try another option first. Unfortunately, one of the docs at MD Andersen felt that the large one on his spine probably will need to come out despite the risk. He understood why our neurosurgeon felt uncomfortable by stating, "no one wants to be a part of permanent paralysis".
Everyone responds differently to Sutent or Avastin, but at least in some cases it does have a delaying effect on the growth of some types of hemangioblastomas. What we are hoping for is that during our "stall game", the pharmaceutical companies will come up with a drug that is the permanent fix for these relentless devils.
I have been through much in the last couple of months The eye surgery I had was successful, though thnere is always that uncertainty feeling I did see a naturalist and I was recommended an alternative diet, but my visiohn has returned to 20/50 before the surgery it wasd 200/20 Now I have to start taking my mris scans for the whole body after 6 months of being away from home I just wish all goes well So sutent is not an option Afterv my virtrectomy the vision is 20/50 but the dr's still need to treat the tumors with lasar.?????
Hi mjk
My neurosurgeon said he'd leave town, if one grew that caused paralysis. Then I'd come to America and have one of the excellent surgeons there operate. However he won't leave town.
They are relentless devils - these tumours. I've had 7 operations (no more please), my brother had 3 and Dad had 1. There are surgical advancements all the time, which I like to stay up with. I haven't used Avastin or Sutent but the "stall game" approach seems pretty sensible to me. I've only had excision, as these drugs are pretty new and only appropriate to use on tumours in certain locations.
Hi mjk
My neurosurgeon said he'd leave town, if one grew that caused paralysis. Then I'd come to America and have one of the excellent surgeons there operate. However he won't leave town.
They are relentless devils - these tumours. I've had 7 operations (no more please), my brother had 3 and Dad had 1. There are surgical advancements all the time, which I like to stay up with. I haven't used Avastin or Sutent but the "stall game" approach seems pretty sensible to me. I've only had excision, as these drugs are pretty new and only appropriate to use on tumours in certain locations.
Hi mjk
My neurosurgeon said he'd leave town, if one grew that caused paralysis. Then I'd come to America and have one of the excellent surgeons there operate. However he won't leave town.
They are relentless devils - these tumours. I've had 7 operations (no more please), my brother had 3 and Dad had 1. There are surgical advancements all the time, which I like to stay up with. I haven't used Avastin or Sutent but the "stall game" approach seems pretty sensible to me. I've only had excision, as these drugs are pretty new and only appropriate to use on tumours in certain locations.
As Marie notes above, some people respond well to the drug therapies, and others don't. In fact what we tend to see over all is that each drug is helpful for about 15% of the people who take it. The trick will be figuring out -- hopefully in advance -- which people will respond to which drug. At the moment, it's guesswork, so it's worth a try.
If the tumor in question is amenable to standard therapy, that's the best first option. But as described here so well, there are often cases where surgery is not a good option.
Joyce
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