Cyberknife
I decided to start a new post. I am on my second week of Afinitor, and overall feeling a lot better. Right now I am to meet a new doctor. He will set up the Cyberknife treatments. Don't let the name fool you, there is no knife or cutting. This is a special type of radiation treatment. I may have up to 5 treatments. Cyberknife can be used for some tumors, such as some brain tumors. They will make a custom back cradle so that I won't move doing the treatment. Cyberknife can shrink the tumors and hopefully eliminate them. Along with that I am getting Zometa, a bone agent. Sure beats having another surgery. Ron
Comments
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They did my spinetodd121 said:Cyberknife
I've met a few people that have had this. I think one was on a brain tumor and the other might have been the spine. From what I heard, it was effective in both cases.
Hope this new approach is effective for you Ron.
Best wishes,
Todd
and ribs a couple years ago. Nothing to it.
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Ron:
My husband had 5Ron:
My husband had 5 cyberknife treatments to the T11; so far, scans show no progression and his oncologist says that the cyber keeps working so if growth begins, it may kill new cells.
The latest scans also showed new bone (healthy) growing.
the treatments lasted 45 minutes each and for him, were exhausting. He had lost 25 pounds from the bowel obstruction and was recovering from surgery so fatigue may have been a result of all of it.
Cyberknife is the next best to surgery and may one day become as good as surgery according to docs.
when do you start?
Sarah
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HI Sarah Et Al... So, theSrashedb said:Ron:
My husband had 5Ron:
My husband had 5 cyberknife treatments to the T11; so far, scans show no progression and his oncologist says that the cyber keeps working so if growth begins, it may kill new cells.
The latest scans also showed new bone (healthy) growing.
the treatments lasted 45 minutes each and for him, were exhausting. He had lost 25 pounds from the bowel obstruction and was recovering from surgery so fatigue may have been a result of all of it.
Cyberknife is the next best to surgery and may one day become as good as surgery according to docs.
when do you start?
Sarah
HI Sarah Et Al... So, the plan sounds so easy... most likely it will all be done next week... am I boring all of you yet..?? FYI, Cyberknife can usually be done on tumors smaller than 3 cm, depending on location. Again this shows the importance of diligent follow ups for Stage 3 and 4 people. They think I only need one treatment, as my Met is that small..! Compare a 45 minute outpatient procedure to a full blown surgery.. Given the option, all the scans seem well worth it to me..!!
Just found out we had a shipper snafu, the race bikes may be a bit difficult to get out of customs... silly paperwork.. it will get handled I am sure..
Ron
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Good Luck!
My husband had cyberknife for brain 4 times...He was put on antiseizure meds and decadron to control swelling..
Good luck!!
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Well...strongmind said:Good Luck!
My husband had cyberknife for brain 4 times...He was put on antiseizure meds and decadron to control swelling..
Good luck!!
OK, it all sounded too easy.. everything is lined up... except my Insurance wants a written request with explanation for the scan. Now, I do NOT blame the insurance folks for asking, they just paid for two scans in the last two weeks. It is very reasonable to go HUH..? Why a third scan..? Now I know it will get approved, but the issue is.. when..? I leave in 3 weeks, and it could take 2 weeks to get the approval. So, Stanford is hounding them.. and in the morning, I will make a few phone calls myself.. I have a hunch they will do a very quick review and approval... Now even my Doctors all say it can wait until I get back, but none of us want to do that... none of us trust the Cancer to behave and not grow any in the next 5 weeks... I can ask the Cancer to wait.. but.. doubt that will do any good...
Hey, what good is life without a little extra drama every now and then..??
Ron
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a tid bit of adviceGSRon said:Well...
OK, it all sounded too easy.. everything is lined up... except my Insurance wants a written request with explanation for the scan. Now, I do NOT blame the insurance folks for asking, they just paid for two scans in the last two weeks. It is very reasonable to go HUH..? Why a third scan..? Now I know it will get approved, but the issue is.. when..? I leave in 3 weeks, and it could take 2 weeks to get the approval. So, Stanford is hounding them.. and in the morning, I will make a few phone calls myself.. I have a hunch they will do a very quick review and approval... Now even my Doctors all say it can wait until I get back, but none of us want to do that... none of us trust the Cancer to behave and not grow any in the next 5 weeks... I can ask the Cancer to wait.. but.. doubt that will do any good...
Hey, what good is life without a little extra drama every now and then..??
Ron
Hi Ron,
My husband had cyberknife to his spine. The first time it was to a vertebra and that procedure was successful. The second time was a year later a new met appeared on another vertebra and he had cyberknife to the new site. He has MRI's of his spine every 3 months for the past two years. There is no growth in the areas that were treated. My husband did experience some complications with the treatment itself. My tid bit of advice for you is that you have someone go with you and drive you home. In our case it was essential that I happened to be there with him. (where else would I be). So, that's my 2 cents. I wish you well and a easy-peasy treatment.
annie
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drivera_oaklee said:a tid bit of advice
Hi Ron,
My husband had cyberknife to his spine. The first time it was to a vertebra and that procedure was successful. The second time was a year later a new met appeared on another vertebra and he had cyberknife to the new site. He has MRI's of his spine every 3 months for the past two years. There is no growth in the areas that were treated. My husband did experience some complications with the treatment itself. My tid bit of advice for you is that you have someone go with you and drive you home. In our case it was essential that I happened to be there with him. (where else would I be). So, that's my 2 cents. I wish you well and a easy-peasy treatment.
annie
I rode my motorcycle back and forth to all my appts. 50 mile round trip. Dr. told me that when the radiation fatigue hits, it was going to be big. I did get the fatigue. I think. It could of been the start of getting lazy. I had the radiation to 2-3 vertebrae and a 2-3 ribs. Maybe 8-10 treatments. I forget the specifics. It wasn't a big deal at all.
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Thanks both of you...! Ifoxhd said:driver
I rode my motorcycle back and forth to all my appts. 50 mile round trip. Dr. told me that when the radiation fatigue hits, it was going to be big. I did get the fatigue. I think. It could of been the start of getting lazy. I had the radiation to 2-3 vertebrae and a 2-3 ribs. Maybe 8-10 treatments. I forget the specifics. It wasn't a big deal at all.
Thanks both of you...! I have a back up plan, just in case.. I will get a motel room nearby and take a cab if it is that bad.. But as my Met is small they think one treatment will do.. I am very pleased they found and will also Zap the two Mets in my Kidney bed...
OK, here is some info on Cyberknife... as some folks may be curious.. Think of getting a 45 minute X Ray.. sort of.. no pain, no muss, no fuss.. I think they can do up to a 3 MM size tumor, and of course location matters. Yes for some areas there can be side effects.. so if they are Zapping near the bowel, that can be an issue, same with the stomach.. and yes ccan cause some dizzyness and nausea, especially on brain Mets.
http://www.mskcc.org/blog/why-am-i-hearing-so-much-about-cyberknife
One more thing.. as they know I am going on vacation soon after, they told me they would stock me up on drugs, pain killers, nausea, and steroids... as a precaution.. Gotta love doctors that really care...
Ron
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Motorcycle ?foxhd said:driver
I rode my motorcycle back and forth to all my appts. 50 mile round trip. Dr. told me that when the radiation fatigue hits, it was going to be big. I did get the fatigue. I think. It could of been the start of getting lazy. I had the radiation to 2-3 vertebrae and a 2-3 ribs. Maybe 8-10 treatments. I forget the specifics. It wasn't a big deal at all.
my husband is dying to ride his motorcycle but the back surgeon has said not yet... The concern is that IF there was an accident and IF he hurt his back, it could trigger a fracture.
He does ride it but not too far; like, an accident couldn't happen then?
i agree that while cyberknife is intense enough to destroy the cancer, the side effects are minimal. In my husband's case, it is hard to tell since he was so compromised when he began the treatments. But, really not much more than extreme fatigue.
Sarah
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Sarah.. is he getting a boneSrashedb said:Motorcycle ?
my husband is dying to ride his motorcycle but the back surgeon has said not yet... The concern is that IF there was an accident and IF he hurt his back, it could trigger a fracture.
He does ride it but not too far; like, an accident couldn't happen then?
i agree that while cyberknife is intense enough to destroy the cancer, the side effects are minimal. In my husband's case, it is hard to tell since he was so compromised when he began the treatments. But, really not much more than extreme fatigue.
Sarah
Sarah.. is he getting a bone agent either Xgeva or Zometa.? If not, then why not..? This promotes bone growth... had my first Zometa infusion last Monday.. no big deal. I also forgot what drug he is on now.. I am now on Alfinitor, which can be good for bone Mets as well.
On the bike.. I asked three doctors.. one said maybe, one said no, and one said heck yes..! Of course the risk of fracture was mentioned.. which is something to think about.. That said, they told me at my 6 month scan they would have a better idea of how good my bones are...
I was also told that the Cyberknife will prevent any new growth from happening in the same spot.
Ron
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driving yourselfGSRon said:Thanks both of you...! I
Thanks both of you...! I have a back up plan, just in case.. I will get a motel room nearby and take a cab if it is that bad.. But as my Met is small they think one treatment will do.. I am very pleased they found and will also Zap the two Mets in my Kidney bed...
OK, here is some info on Cyberknife... as some folks may be curious.. Think of getting a 45 minute X Ray.. sort of.. no pain, no muss, no fuss.. I think they can do up to a 3 MM size tumor, and of course location matters. Yes for some areas there can be side effects.. so if they are Zapping near the bowel, that can be an issue, same with the stomach.. and yes ccan cause some dizzyness and nausea, especially on brain Mets.
http://www.mskcc.org/blog/why-am-i-hearing-so-much-about-cyberknife
One more thing.. as they know I am going on vacation soon after, they told me they would stock me up on drugs, pain killers, nausea, and steroids... as a precaution.. Gotta love doctors that really care...
Ron
Dear Ron,
I am only trying to be helpful here. For me it feels like a duty to at least share information that may help you. My husband had a one dose treatment each time, very brief, outpatient basis. He's was very healthy and active with no other medical conditions. We walked out of the hospital and 2 miles down the road as I was stuck on a freeway onramp, pinned in, my husband had a very rare sudden side effect. He had a 105 temperature and did not know who he was, where he was etc.. The suddenness would blow your socks off. I was on my phone to the cyberknife department who wanted to send an ambulance to me but they couldnt get to us. Rush hour. I drove up on the side planter of the freeway, through all red lights, and wished for a police chase, and into the exit of the hospital. All the while clinging with a deathgrip to my husbands arm, who wanted to get out of the car while it was moving. There's more to the story. Scariest day of my life. We actually do laugh about it now cuz it was frickin crazy. He was admitted to ICU for a day and then discharged home. Brain scans. Everything was fine, and they DO NOT know what happened. They are guessing only that it was a rare side effect to Decadron. He lived to talk about it. Had he been on a motorcycle he wouldn't have survived.
I love that you have a sensible plan of having a hotel room and perhaps the use of a taxi service. I would also keep your wristband on too. That helped us. Didn't have to do all the admitting crap.
I pray that you understand my intentions of helping you and others who will read this thread, by suggesting you have a friend with you. Crap happens.
Annie
PS. He had no pain with the procedure or afterwards, no fatigue, slight nausea only for a day.
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Annie, thanks for that info..a_oaklee said:driving yourself
Dear Ron,
I am only trying to be helpful here. For me it feels like a duty to at least share information that may help you. My husband had a one dose treatment each time, very brief, outpatient basis. He's was very healthy and active with no other medical conditions. We walked out of the hospital and 2 miles down the road as I was stuck on a freeway onramp, pinned in, my husband had a very rare sudden side effect. He had a 105 temperature and did not know who he was, where he was etc.. The suddenness would blow your socks off. I was on my phone to the cyberknife department who wanted to send an ambulance to me but they couldnt get to us. Rush hour. I drove up on the side planter of the freeway, through all red lights, and wished for a police chase, and into the exit of the hospital. All the while clinging with a deathgrip to my husbands arm, who wanted to get out of the car while it was moving. There's more to the story. Scariest day of my life. We actually do laugh about it now cuz it was frickin crazy. He was admitted to ICU for a day and then discharged home. Brain scans. Everything was fine, and they DO NOT know what happened. They are guessing only that it was a rare side effect to Decadron. He lived to talk about it. Had he been on a motorcycle he wouldn't have survived.
I love that you have a sensible plan of having a hotel room and perhaps the use of a taxi service. I would also keep your wristband on too. That helped us. Didn't have to do all the admitting crap.
I pray that you understand my intentions of helping you and others who will read this thread, by suggesting you have a friend with you. Crap happens.
Annie
PS. He had no pain with the procedure or afterwards, no fatigue, slight nausea only for a day.
Annie, thanks for that info.. I will absolutely watch out for it... just in case..! Depending on what time of day my treatment will be, I may just get the motel room for the night and not worry. There are motels about 2 or 3 miles from the Hospital...
Thanks..!!
Ron
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MedsGSRon said:Sarah.. is he getting a bone
Sarah.. is he getting a bone agent either Xgeva or Zometa.? If not, then why not..? This promotes bone growth... had my first Zometa infusion last Monday.. no big deal. I also forgot what drug he is on now.. I am now on Alfinitor, which can be good for bone Mets as well.
On the bike.. I asked three doctors.. one said maybe, one said no, and one said heck yes..! Of course the risk of fracture was mentioned.. which is something to think about.. That said, they told me at my 6 month scan they would have a better idea of how good my bones are...
I was also told that the Cyberknife will prevent any new growth from happening in the same spot.
Ron
Ron:
my husband is not on Zometa or Xygeva; we asked the oncologist about those and he told us that at this point when healthy bone is growing, he would be concerned that those meds would interfere.
he would have him take something if there was osteoporosis.
To date, no meds at all; scans every 3 months until he hits a year after nephrectomy (Sept), then every 4 months. As in your case, he wants to jump on anything early.
If you are only having one cyberknife treatment, I doubt you would have a reaction other than some fatigue.
Annie, your husband had been on decadron; isn't it possible that caused the reaction? The session is boring and with the weight loss, a bit uncomfortable to lay there for 50 minutes.
My husband had 10 regular radiation treatments to the surgical site and 5 to the other met. So, there were 5 days when he received both.
As Ron noted, the location of the treatment is not one likely to cause nausea, vomiting or diahrea.
Sarah
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Not on DecadronSrashedb said:Meds
Ron:
my husband is not on Zometa or Xygeva; we asked the oncologist about those and he told us that at this point when healthy bone is growing, he would be concerned that those meds would interfere.
he would have him take something if there was osteoporosis.
To date, no meds at all; scans every 3 months until he hits a year after nephrectomy (Sept), then every 4 months. As in your case, he wants to jump on anything early.
If you are only having one cyberknife treatment, I doubt you would have a reaction other than some fatigue.
Annie, your husband had been on decadron; isn't it possible that caused the reaction? The session is boring and with the weight loss, a bit uncomfortable to lay there for 50 minutes.
My husband had 10 regular radiation treatments to the surgical site and 5 to the other met. So, there were 5 days when he received both.
As Ron noted, the location of the treatment is not one likely to cause nausea, vomiting or diahrea.
Sarah
Hi Sarah. My husband was not taking Decadron. Never has taken it. It was given as part of the Cyberknife treatment which is done quite often when cyberknife is done to spine or brain. He only had one sessions of cyberknife to T11. It's my understanding that cyberknife can cause some swelling at the site, and therefore they give Decadron automatically. They have now red-flagged Decadron for him, but they aren't even sure if this is what caused the crazy reaction. It's kind of scary for him to have cyberknife again if he ever needs it. One thing is for sure, I don't think we will leave the appointment so quickly. They will probably observe him for a longer period of time.
My husband was diagnosed with vertebra mets at time of RCC diagnosis in January 2012. He was put on Xgeva immediately. I think it is interesting what you shared about your doctors opinion and healthy bone growth. We have an appointment in about 3 weeks and I'm going to ask about that for us. He has also taken Pazo, Affiitor and currently on Inlyta. Such a strange disease with varying treatment being given. I should definitely add that he had mets to bones in other sites, and one lymph node. So our cases are quite different in that regard.
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Amazing how doctors differ ina_oaklee said:Not on Decadron
Hi Sarah. My husband was not taking Decadron. Never has taken it. It was given as part of the Cyberknife treatment which is done quite often when cyberknife is done to spine or brain. He only had one sessions of cyberknife to T11. It's my understanding that cyberknife can cause some swelling at the site, and therefore they give Decadron automatically. They have now red-flagged Decadron for him, but they aren't even sure if this is what caused the crazy reaction. It's kind of scary for him to have cyberknife again if he ever needs it. One thing is for sure, I don't think we will leave the appointment so quickly. They will probably observe him for a longer period of time.
My husband was diagnosed with vertebra mets at time of RCC diagnosis in January 2012. He was put on Xgeva immediately. I think it is interesting what you shared about your doctors opinion and healthy bone growth. We have an appointment in about 3 weeks and I'm going to ask about that for us. He has also taken Pazo, Affiitor and currently on Inlyta. Such a strange disease with varying treatment being given. I should definitely add that he had mets to bones in other sites, and one lymph node. So our cases are quite different in that regard.
Amazing how doctors differ in opinions.. Seems like a bone agent is standard any time there are bone Mets... wish there was a way to (accurately) compare notes. However I know from past experience that I am slow growing, bone wise. I was a very late bloomer in my height. I was barely over 5' tall when I was 13, but an Xray showed that I had more growth to happen.. by 18 I was 6'2". Then when I had a bike accident in 2000 my collar bone took a very long time to fully heal. So,I was pleased to hear I would be getting Zometa, knowing it would likely be very helpful to me... And the olde line.. we are all different..!
Ron
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UpdateGSRon said:Amazing how doctors differ in
Amazing how doctors differ in opinions.. Seems like a bone agent is standard any time there are bone Mets... wish there was a way to (accurately) compare notes. However I know from past experience that I am slow growing, bone wise. I was a very late bloomer in my height. I was barely over 5' tall when I was 13, but an Xray showed that I had more growth to happen.. by 18 I was 6'2". Then when I had a bike accident in 2000 my collar bone took a very long time to fully heal. So,I was pleased to hear I would be getting Zometa, knowing it would likely be very helpful to me... And the olde line.. we are all different..!
Ron
Hi All..!! OK, so yesterday I got two scans, a CT and an MRI. Before the CT started they made a mould of my body for use with the Cyberknife.. took only a few minutes.. then they put markers on it, and positioned me very precisely for the scan. This info will be feed in to the Cyberknife computer.. Then I had the MRI with contast...
So, in case you did not already know... I like to have fun with the Nurses.. and yesterday was not different.. The Radiology Tech and the Nurse with the needle are both women. The Nurse is young and well.. impressionable.. So, I am preparing for the MRI.. and the Tech then tells me to "drop my pants".. at which I reply, " I sure like it when a woman says that to me.." The Nurse blushed a bit.. that was it.. game on..!
So, I am watching her give me the needle and to do that I had to change my position on the table... the Tech replies.. "Careful do not want you to fall off..." Oh yea.. I had to do it.. a very olde line.. "No worries, all the women tell me I am great in bed.. I never fall out.." Well that go the Nurse big time.. her face was beet red..!! Plus she smiled.. what can I say..? I followed it up with.. "If I was 30 years younger you both would be in trouble.."
So, I should mention that another Nurse and I chatted.. she has only one Kidney and that was a transplant.. her Kidney numbers are as good as a healthy two Kidney person.. nice..!
It was a pretty darn good day... took only about 3 hours to do both scans.. and two blood draws.. not bad..
Today starts the Cyberknife.. one to three days of treatment.... and Monday morning I leave for the Isle of Man...!! I already warned the good folks over there that I am on the way... they got warned..! Heh...
Life is Good..!! Darn good indeed..!!
Ron
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Have fun Ron, from what iGSRon said:Update
Hi All..!! OK, so yesterday I got two scans, a CT and an MRI. Before the CT started they made a mould of my body for use with the Cyberknife.. took only a few minutes.. then they put markers on it, and positioned me very precisely for the scan. This info will be feed in to the Cyberknife computer.. Then I had the MRI with contast...
So, in case you did not already know... I like to have fun with the Nurses.. and yesterday was not different.. The Radiology Tech and the Nurse with the needle are both women. The Nurse is young and well.. impressionable.. So, I am preparing for the MRI.. and the Tech then tells me to "drop my pants".. at which I reply, " I sure like it when a woman says that to me.." The Nurse blushed a bit.. that was it.. game on..!
So, I am watching her give me the needle and to do that I had to change my position on the table... the Tech replies.. "Careful do not want you to fall off..." Oh yea.. I had to do it.. a very olde line.. "No worries, all the women tell me I am great in bed.. I never fall out.." Well that go the Nurse big time.. her face was beet red..!! Plus she smiled.. what can I say..? I followed it up with.. "If I was 30 years younger you both would be in trouble.."
So, I should mention that another Nurse and I chatted.. she has only one Kidney and that was a transplant.. her Kidney numbers are as good as a healthy two Kidney person.. nice..!
It was a pretty darn good day... took only about 3 hours to do both scans.. and two blood draws.. not bad..
Today starts the Cyberknife.. one to three days of treatment.... and Monday morning I leave for the Isle of Man...!! I already warned the good folks over there that I am on the way... they got warned..! Heh...
Life is Good..!! Darn good indeed..!!
Ron
Have fun Ron, from what i hear Cyberknife is very effective.
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You're having way too much fun!GSRon said:Update
Hi All..!! OK, so yesterday I got two scans, a CT and an MRI. Before the CT started they made a mould of my body for use with the Cyberknife.. took only a few minutes.. then they put markers on it, and positioned me very precisely for the scan. This info will be feed in to the Cyberknife computer.. Then I had the MRI with contast...
So, in case you did not already know... I like to have fun with the Nurses.. and yesterday was not different.. The Radiology Tech and the Nurse with the needle are both women. The Nurse is young and well.. impressionable.. So, I am preparing for the MRI.. and the Tech then tells me to "drop my pants".. at which I reply, " I sure like it when a woman says that to me.." The Nurse blushed a bit.. that was it.. game on..!
So, I am watching her give me the needle and to do that I had to change my position on the table... the Tech replies.. "Careful do not want you to fall off..." Oh yea.. I had to do it.. a very olde line.. "No worries, all the women tell me I am great in bed.. I never fall out.." Well that go the Nurse big time.. her face was beet red..!! Plus she smiled.. what can I say..? I followed it up with.. "If I was 30 years younger you both would be in trouble.."
So, I should mention that another Nurse and I chatted.. she has only one Kidney and that was a transplant.. her Kidney numbers are as good as a healthy two Kidney person.. nice..!
It was a pretty darn good day... took only about 3 hours to do both scans.. and two blood draws.. not bad..
Today starts the Cyberknife.. one to three days of treatment.... and Monday morning I leave for the Isle of Man...!! I already warned the good folks over there that I am on the way... they got warned..! Heh...
Life is Good..!! Darn good indeed..!!
Ron
I like it.
Keep the updates coming.
Todd
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Never too much funtodd121 said:You're having way too much fun!
I like it.
Keep the updates coming.
Todd
Well last minute change. No Cyberknife today or tomorrow. Scan results must have been good. So I get a single treatment on Friday. I am thinking of getting a motel room for Friday night. More fun than a person should be allowed to have. Ron
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