ANA Discussion Forum
Archive => Archives => Topic started by: Laura on August 20, 2006, 04:57:28 pm
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I am researching my options and am leaning heavy toward either CK or GK and was curious of the side effects. I've heard somewhere that with radiation you are more apt to develop new tumors later; is this true? How soon can you "get back in the game of life" afterward? And the more vain question - will my hair fall out? ::)
Thanks,
Laura
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Laura,
Hi, I do not believe that having CK/GK increases your risk for future new tumors. You may want to ask a doctor, you can chat with some drs whom do CK:
www.cyberknifesupport.org
They are very responsive and informative. I am sure they can answer your question regarding new tumors.
I had CK in Dec 05. I did lose some hair about 3 weeks after CK. A couple of patches where the main potholes were for the radiation(had some breakage too). They were bald spots about a nickel in size. I have long hair so you never would have know they were there unless I pointed it out to you. They have since started growing back in. I did have a second round of hair loss around six months but it was very minimal. All in all I can't complain, losing a little hair is a small price to pay considering.
I felt really good about 2 weeks after CK. But was back in the thick of things sooner than that as I have little ones. Everyone is different. I was mostly tired, dizzy, and vomited for a couple of days afterwards. But I am almost 9 months post CK and I feel great no different than I did before. Hearing is great, balance is the same, all is good. I have been very fortunate thus far. Everyone is different. Good luck in your decision process and treatment.
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Hi
I had GK in April. I had no noticable hair loss. The drs will tell you that you won't lose in hair with GK. I was given general Decadron, which is a steroid, and I had the common side effect of insomnia. That was difficult for me and the first week and a few days were kind of rough because I couldn't sleep more than 2 or 3 hours a night. The doctor told my husband that it would take about 2 weeks to get over the effects of the procedure and meds, but, for me, in all honesty, it was 3 weeks before I felt like I had pep. Now maybe a younger person would bounce back quicker, and we each react differently to these things so you might be dandy fine in a week. The meds are given to help with any swelling that might occur. Some people aren't even given that, so you can check with your doctor. GK has the advantage of getting it over with in one shot. CK has the advantage of spreading it out over several days and taking the radiation in small doses at a time. I believe that is the case...if I'm wrong maybe somebody else will chime in. GK was all that we had in my area at the time, although a new CyberKnife is going in here in Vancouver. I have not regretted my decision. But it's kind of soon to tell you how well it is working. Maybe my next MRI will show that the AN is dying.
Good luck to you,
Vancouver Sue
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I had CK in Jan. 06. at about 1 month I had some sight hair loss. No patches. Just a lot of shedding.
I had loud tinnitus before treatment. It changed in pitch after. Now it it is mostly less in volume. Sometimes I am startled because it is not there. I comes back very soon.
My balance was off before treatment and fluctuates now. I was allergy tested last week and the doctor thinks this my play a part in why I have good balance one week and then staggering around again the next. I am supposed to start allergy shots this week. We will see if it makes a difference.
I had a few symptoms after treatment. They are posted elsewhere on this board. at almost 8 months post treatment I forget about my AN most of the time. On the weeks that my balance is good I can do anything I ever did before the AN.
If I had of known how well the treatment would turn out, I would have had it done sooner and not taken 9 months to decide what I wanted to do.
When I was researching radiation I read some place that there were very few cases of the tumor transforming in to cancer. I think the article said 5 know cases. My neurosurgeon said about a 1:1000 chance. I ask her if she had ever seen a case and she said no and she didn't know any doctor that she was in touch with that had. Far Cry from my knife happy neurotologist Dr. Ego who said he has seen it a lot. He advised me against having CK and now acts like it was his own original thought. Even in Dr. notes he goes into how he thought this was best for me. That is not the way I remember it.
I am sure you can get the information you need on the cyberknifesupport site. Dr. Medbery gets furious when some of the surgeons try to scare you about this. He is armed with the information about the chances of this happening.
Good Luck,
Sandy
Sandy
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Hi Laura and welcome! :)
I have to chime in that I'm in line with Sandy... as well as shoegirl. I've had minimal hair loss/breakage, but I also have long hair and easily covered. Much like the previous posts, I have had balance issues (I also keep in mind that I have a brain stem condition called Chiari I Malformation, which also interferes) related to the CK treatment, had loud tinnitus that has eased over time (I'm only 4-1/2 mos post treatment), fatigue, occassional headaches. I have had some dry eye which is alleviated with ointment at night/drops by day. My facial numbness was more noticiable after the first 3 weeks post treatment but now is minimal. My CK journey, being fresh, has gone well overall and have no qualms over the route of treatment that I have chosen. I have faith in you to choose which treatment option will be best for you and as for me, I firmly believe in my choice and have not 2nd guessed it!
Phyl
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Laura,
I am a newbie post-op. Just had CK the first week of August. Really simple procedure and not much side effects so far. Swelling of tumor is supposed to start 6 months. So far, a little louder tinnitus. No balance problem (didn't have it before CK). Hearing loss probably the same (25%) - still can talk on the phone with my AN ear. Facial numbness/tingling subsided a whole lot almost to unnoticeable. First 2 days after treatment, I slept for full 12 hours. A little headache now and then. Overall, I am very pleased with the outcome so far.
You should do research and follow your instinct. As everyone says, you need to be comfortable with your choice but always inquire to get to that comfort level. Go to the CK website. The docs there are great!!
Best wishes.
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Hi Marystro,
Why did you say:
Swelling of tumor is supposed to start 6 months. ???
Shouldn't swelling happen almost right after the procedure?
I had some symptoms 6 mo. after my FSR and now I wonder if it was due to swelling.
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After the treatment, I asked the doctor when the tumor would swell if any. I understand the "killing" of the DNA of the tumor cells will occur and may cause the tumor to swell a little. I was concerned if it does swell, it may cause more side effects such as pressure against the trigeminal nerve. I had trigeminal nerve irritation prior to the treatment. The doctor told me that the swelling of the tumor usually starts in 6 months but there may not be any side effects.
I am actually better since the treatment a month ago as far as facial sensation goes. I don't have any more sharp shooting pain which allegedly was caused by trigeminal nerve irritation. Thank goodness because that was the most excruciating pain I ever had. I understand nerve pain is the worst pain you can get. So far, I only have just a little facial tingling at times. My tinnitus is little louder. Other than that, I have no other symptoms.
Hope this explains.
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Thanks Marystro!
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Hi Mary,
Great post...I hope you don't mind if I share additional in what you note.
Tumor swelling can occur anywhere from the beginning of treatment to down the road, but yes, you are correct about 6 mos. I was told that the swelling can occur anywhere between the first month up to 9 months (approximation). The tumor (as you note) will tend to swell prior to necrosis (tumor death). The true concern is nerve swelling as well (vestibular, trigeminal, etc) as this should be closely monitored the first months post treatment. As we know these nerves are so close in proximity, there is a slight chance that they may receive a slight "zap" during treatment, thus, bringing on some side affects as enhanced tinnitus, dry eye, etc. which are usually temporary. Some treatment dr's have prescribed steroids down the road (for just a few days) should any of the swelling cause side affects (I think Mark was given steroids for a few days a few months down the road post treat... he can better clarify or there is a post here by him that notes this).
All in all, many of the potential side affects (many CK patients note no side affects post treatment) are temporary and for me, are very tolerable as life certainly does move along. For me, they are minor inconveniences in the overall battle to "kill the booger" that is in my head.
Mary, continued success and wellness to you. You are doing fabulous and so thrilled with your progress. :)
zjane, sounds like you are right on schedule with your tumor swelling post FSR... hang in there...
Phyl
After the treatment, I asked the doctor when the tumor would swell if any. I understand the "killing" of the DNA of the tumor cells will occur and may cause the tumor to swell a little. I was concerned if it does swell, it may cause more side effects such as pressure against the trigeminal nerve. I had trigeminal nerve irritation prior to the treatment. The doctor told me that the swelling of the tumor usually starts in 6 months but there may not be any side effects.
I am actually better since the treatment a month ago as far as facial sensation goes. I don't have any more sharp shooting pain which allegedly was caused by trigeminal nerve irritation. Thank goodness because that was the most excruciating pain I ever had. I understand nerve pain is the worst pain you can get. So far, I only have just a little facial tingling at times. My tinnitus is little louder. Other than that, I have no other symptoms.
Hope this explains.
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Hey Phyl,
Thanks for further explaining on the swelling.
I have one question for you however. Did you travel internationally shortly after CK? You see, I have an upcoming business trip to Beijing next week. That's my professional life - always on the road to far away land. This will be my first major trip after only 5 weeks since treatment. I am not concerned myself but my family and friends are. Although the doctors all gave me a "clean bill" to travel, I am still working on my husband, son and close friends to convince them that it's ok to fly long distance. Any pointers from you will help tremendously now that they all know about you and others on the board!
Mary
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Hi Mary,
glad to help.
I have not done the long-haul flights yet since treatment but I do know that shoegirl just did a trip from AZ to HI and she's (I think) approx 8-9 mos post treat. Heck, if your dr's are giving you the go-ahead, maybe remind your family that the professionals are saying it's ok..... :)
Thinking of cabin air pressure, I thought ways, like gum chewing and such, would help prevent "ear fullness"... also, maybe bring along anti-inflammatory (Ibuprofen) should any swelling symptoms occur... just a thought...
hoping others here will chime in with their thoughts.
so proud of you Mary! :)
(and send a postcard!!!!!!!!!!)
Phyl
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I had GK 1 yr ago feb no hair loss mine is on the left side..It has not died, they say it wont . This is to control it not remove it.and mine is growing but small 9mm started out a 5mm ..I cant get a doctor to operate on it as I have other problems and alos they say that it can take up to 18 months before you see any differance.. so please check in to what you really want .If I had it to do over again ..I would have had it removed.. now I am stuck with the little devil.. I have headaches, dizzy like before.. most people dont have any problems after wards..I only had on hugh beam done in 5 directions at one time...
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I had GK 1 yr ago feb no hair loss mine is on the left side..It has not died, they say it wont . This is to control it not remove it.and mine is growing but small 9mm started out a 5mm ..I cant get a doctor to operate on it as I have other problems and alos they say that it can take up to 18 months before you see any differance.. so please check in to what you really want .If I had it to do over again ..I would have had it removed.. now I am stuck with the little devil.. I have headaches, dizzy like before.. most people dont have any problems after wards..I only had on hugh beam done in 5 directions at one time...
I'm sorry to hear this. I"m not sure where you had the GK done, but please note that the tumor itself may not shrink, but it's the signs of necrosis (tumor death of the DNA) that is of concern. When was your last MRI done (how many since your Feb 05 treatment date and at what intervals ie: 1 mos post, 6 mos post, 1 yr post, etc) and please elaborate on your comment of "it has not died" so we can better help, ok? :) Hang in there... let's get you some answers if we can.
Phyl
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Hi,
Just had a minute to get my two cents in, I had CK in Oct 2005 with minimal nausea afterwards and some fatigue. 6mos MRI indicated some darkening in the center (good sign of Tumor death); getting ready for 1 yr MRI in a few weeks. I have noticed that my tinnitus has gotten louder the past 2 months, so hopefully the thing is swelling a bit and dying off. I wasn't prescribed any steroids by my doctors, they said to be aware of any symptons that may required steroids and they would write me a prescription. Good luck with your choice, definitely check out the CKsupport website.
Cheers,
Sue (Las Vegas)
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Just came back from Beijing after a 4 day trip there. Plane ride was fine. Actually got a lot of sleep. My boss upgraded me to first class fearing that I might have problem with the long haul ;-). Tinnitus has gotten louder a bit and tiny headache although not all the time. I am not taking any aspirin nor tylenol yet since it's only very slight headache. I understand that tinnitus would get worse and should get better later. Does anyone know how long the louder tinnitus will last?
Mary