ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Dealy on January 01, 2007, 04:42:31 pm
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I was reading through some of the posts today and got too wondering. The people who had Radiation on the site ( whether it be CK-GK-FSR) when did you start to get necrosis of your tumor. I being 6 months out-alll it says is less enhancement. Thought this might to a good topic to post for those who are further along and tumor is dying. Thans for any replies-Ron
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Hi Ron, though I am just almost 1 month Post-Ops I do think this will be a great topic, so others will see what to and approx. when to expect changes. I have spoke to a few between 1year to 10 years post-ops who said that the major changes took place within the first 6-18 months, and after that it seems to slow a little, but continues for up to 2 years. usually after the 2 year mark the tumor goes into the stage of shrinkage(DIE TUMOR DIE!!!!!!!!!!!!!!!). I guess it depends on the individual, and their physical condition.
Happy New Year!!!!!!
Sam
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Hi Ron and Sam,
Well, for me.... I had my CK the first week of April of 2006. I had a 6 month MRI and at that time, there was no further growth of the AN (mine was growing at a good clip). Due to other issues, I had another head MRI at 8 months... at the 8 month MRI (I took a really good look at the films prior to meeting with my radio-oncologist) and he did confirm.... the beginning stages of "tumor death" was commencing. As you may know, it may take 1-1/2 to 2 yrs for the tumor to die, but the beginning stages were seen on my films at 8 months. (in looking at the films, you could see the center area of the AN almost "shadowed" - darker, than the outter rim. The Radiologist report confirmed a "rim-enhanced" growth with a darkened center).
It was my early holiday present in December.
Wishing you a VERY quiick tumor death as well!
Phyl
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This topic interests me because I have an aquaintence who just got GK and was back to work in a day or two. I was so jealous. He has so side effects...nothing. I had 13 hour surgery and months of recovery. I will pass along this thread because I am sure he will be interested.
Anyways, you can clearly see on my initial MRI a large wishbone shape inside that doesn't enhance, where my tumor was starting to die pre-surgery. I wonder if that meant it was done growing??
Amy
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That's quite a coincidence that you actually know someone personally who also had an AN.
Did you docors have an answer to your question about your tumor growth? At that size, even if it HAD stopped growing, it would have continued to put pressure on your facial nerve and perhaps the facial nerve so that it would have to come out anyway, no?
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Hi David
Yes, I don't think there was any question it had to come out as I had significant brain displacement and compression of my brainstem. Strangely, my ONLY symptom was 4 months of right lower lip and chin MILD numbness. I am actually much worse now (with full right facial paralysis, numbness and SSD). So, if there could have been a guarantee that the tumor was done growing it might have been worth leaving it in. But we all know how that goes....both the ENT and NS thought it had to come out within a month.
But I sure wish GK was an option for me.
I know that some people have ANs and Meningiomas that do become necrotic and die on their own and are never found except post mortem.
I actually know 2 others with ANs and 2 people with Meningiomas. Currently, at my husbands work there are 2 spouses with "benign" BT (including me) and 2 faculty with brain tumors (a AN and a medulla blastoma). That's a lot of brain tumors in a staff of 40.
Amy
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Ron, I had fsr just over a year ago. At six months my An was stable and the measurements were slightly smaller than at the beginning of treatment. In the short time between diagnosis and treatment it had gotten larger. Now, at the one year mark, I am told it is stable, same size. I haven't actually read the latest report so I don't know if any necrosis is happening yet?
I'll be content if it remains halted. (Though I wouldn't mind if the "alien" shrivelled and disappeared lol....)
Interesting to read Sam's comment that necrosis often begins to show up 1 1/2 to 2 yrs after zapping? I can hardly wait until next year's followup!!
Windsong
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Hey Gang: I grew up and still work for my family farm in a small Northern California town (Ukiah, CA) think haiku spelled backwards. My coworker Elicia- her husband was diagnosed with a AN back in 2000 and opted for surgery with Jackler at Stanford. Also, my girlfiend in Seattle (and bear with me here), her mother in law's best friend's son had AN surgery 20 years ago-only to come out fine from the surgery. Finally, a friend from college had a friend who opted for surgery with an AN in Seattle.
My point- it's a small AN world after all- heck I've got 2,4,and 2 degrees of separation in my non statistical analysis! Take care, Annie
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Yeah Brucifer- I was going to send you a personal message to ask about your sister in Fort Bragg! Too funny that you have family in what is a remote part of Northern California. Yep, we have pear orchards in Ukiah and Hopland. Quite frankly, farming is more depressing than my AN at times. But we are hanging in there on the farm front. We used to have a chemical company for our growers (so we would control what they/we were all spraying). The company was called Belchfire Chemicals and the motto was "Better Living through Poisonous Chemicals�. ;D I’m now thinking I need to use that for my signature line! (But perhaps that’s a bit to edgy) :o.. I think I need to wait a few weeks…
Thanks for posting- Annie
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Last summer we went to Eureka to see my cousins and they took us to Mendocino for a 2 day trip and we stayed in Ft. Bragg. Very pretty drive down there. Saw where they filmed some of Murder She Wrote. Nice trip.
Sue in Vancouver
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Hi Annie: Just had to chime in on Ukiah/Fort Bragg. I was born and raised in Fort Bragg (big sports rivals in my day) and now live in Petaluma. I had CK treatment at Stanford in October. If you want to stop in Petaluma to or from Stanford sometime to "kabitz" about ANs, let me know. I have been hoping for a local support group but so far have no information about that. There are a number of Nor Cal AN'ers but I think they are mostly south of SF and they did have a gathering in San Diego in January. I do know of one other person in Petaluma and we have met for lunch. Its always good to talk with someone who understands what it feels like to live with this.
Best Wishes on your treatment and let me know if I can be of support in any way.
Bev
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OH btw- Dr. Soltys told me 3-5 years for total death...slow to grow, slow to die... ayayaya... Annie
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Long time to answer this thread.
I had my 1 year MRI in January. I ask then if there was necrosis. The answer was "well it is doing something" word necrosis was not used. I was told the AN was smaller than 6 months ago.
Got the radiation report and it only said tumor smaller. I was a little miffed because at 3 month and 6 month mri they said I had a dark spot in the middle and it was not mentioned this time. I looked at my MRI disc and could not see the dark spot this time. On Monday 3/5 I went to my Neuro surgeon and she was so excited and showed me a dark shadow all the way through the middle of the tumor. She said non enhancing means necrosis. YEAH!!!!!
Sandy
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I can answer this thread now too. 10 months after GK, my MRI showed necrosis. Drinks for everybody!
Sue in Vancouver USA
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I personally thin the word necrosis is almost like poetry. Very nice word. Can you send that drink to Oklahoma?
Sandy
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Sue-So happy for you that your tuma is showing signs of dying. Good riddance-Right. I have chosen to have another MRI-9 months coming up on March 19th due to symptoms. So I am praying that I will continue to see mine bite the dust although it is taking more of my hearing. If this keeps up I will be totally deaf by one year time in July. That is the real downer-not being able to hear like before. Oh well-can't have your cake and eat it too-or can you? Thanks for your post-Ron
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"Ivan" and "the Booger" and everyone's is dying! Heck ya! Nothing like a little "rim enhanced mass" to make your day! Necrosis has to be one of the loveliest words around.... I'll take my martini straight up, shaken/not stirred with extra olives :)
You all are doing great and thrilled that we get to do this necrosis journey together! :)
xo
Phyl
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Margarita here. Rocks, no salt. Rest in peace Ivan and the Booger and all the others.
It is a lovely 70 degree day here, sun shining, trees budding.Balance is perfect today. I am feeling good.
Sandy
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I was diagnosed about 6 months ago with 1.5 AN. I was having some vertigo issues which was just fluid in the ear. We discovered the AN with the MRI. I am leaning towards the Gamma Knife. I still have 99% of my hearing so I don't want to give up and do surgery. Any suggestions that you can give me?
Seeking information
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Bruce,
I live in Nashville, TN. I have been going to St. Thomas Hospital. I have been seeing Dr. Richard Prass who is the Neurotologist. My radiation oncologist is Dr. Paul Rosenblatt. If you or anyone have had any past experiences with these doctors let me know.
Thanks,
Craig
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Have you been on the cyberknife patient support site? Dr. Medbery does GK and CK and believes that hearing is better preserved with CK. I didn't have hearing to perserve. I did have CK because I didn't want frame placemant with GK. Either is good. Just evidence points to better hearing preservation with CK. Dr. Medbery has nothing to lose because he does both and is really not losing anything by doing GK over CK.
Sandy
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Have you been on the cyberknife patient support site? Dr. Medbery does GK and CK and believes that hearing is better preserved with CK. I didn't have hearing to perserve. I did have CK because I didn't want frame placemant with GK. Either is good. Just evidence points to better hearing preservation with CK. Dr. Medbery has nothing to lose because he does both and is really not losing anything by doing GK over CK.
Sandy
I have to agree with Sandy :-* as it is a terrific resourse for anyone researching or post- radiosurgery (of any protocol). Link to the website is:
http://www.cyberknifesupport.org/forum/
Drs Medbury and Spunberg volunteer their time to those forums there and are exceptionally knowledable in AN treatments of all forms (surgical and radio). Another terrific resource.
Phyl
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Leave it to Phy to have that link ready. ;D Dr M must be good because for the last few days I feel as well as I did before the AN. Clear brain, good balance and just feeling good.
Sandy
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Hey Sigmund: I was very pleased with my treatment at Stanford with Dr. Stephen Chang and Dr. Scott Soltys. Now I am still only 1 month out, so I don't know if necrosis has set in yet but it's worth a phone call to them or other cyber knife treatment centers at it is even less invasive than gamma knife which does require a head frame (although from what little I understand you get great drugs prior to the head frame being fit on you).
And like the others say: welcome to our club (with full on eye roll that the little icon can't really imitate well). Take care, Annie
And of course Phyl is the BOMB when it comes to links ect...
And Okiesandy: thanks for the terminology update, I need to know that for my 6 month review- Annie
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Just noticed this thread and thought I might be able to add something useful.
I was diagnosed with an AN tumor too large to radiate (see my signature) so, to avoid possible nerve damage, my neurosurgeon recommended that he 'de-bulk' the tumor (hollow it out, in layman terms) and that I then undergo FSR to kill the remaining portion. I did just that. The surgery was successful - the surgeon was able to remove over 50% of the tumor - and my recovery was uneventful with no post-op complications. 3 months later, I began 26 FSR treatments, which were a bit tedious but also relatively uneventful. I finished those in mid-October of '06. So far, so good. No complications. I just found out (last week, in a follow-up visit with my radiation oncologists successor) that a December '06 MRI indicated that the tumor showed signs of necrosis. I was elated! My radiology oncologist said that tumor shrinkage may take a few years but the highly focused, low-dosed radiation obviously worked well. I have another MRI scheduled for April. Naturally, I hope to see even more signs of necrosis.
No matter how you approach it, I believe that radiation is a very viable form of treatment for AN tumors. Had mine been small enough upon diagnosis, I would have went with radiation (in some form) to deal with it. That wasn't an option but I did the next best thing and I have no regrets.