3 Month Post CyberKnife Update Results
Comments
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Thanks for your thoughtsmrspjd said:Nov 11 Veterans Day--Thanks for your service
Just thought it would be appropriate on this day, Nov 11, with the posts about military service sprinkled amongst the PCa posts in this thread and others, to say thanks to all of you have served or are serving. Thank you.
YTW,
Glad to see you have posted again recently, especially with an update. I had read your older posts, knew you were the 4th CK, and had often wondered how you were doing. I even asked Kongo (he can confirm my inquiry) a while back if he knew how you were doing, but if he did, his lips were sealed and he maintained confidentiality!
PJD is originally from the Cleveland area, but ultimately the Navy brought him to California. Small world indeed!
All the best in your recovery and PCa journey,
mrs pjd
Mrs PJD
Thanks so much for your best wishes on Veterans Day. While this thread seemed to highlight the number of navy veterans, I am sure there are plenty of army, marine, and air force veterans out there too.
Vietnam veterans who served in-country have a special relationship to prostate cancer as several studies have now correlated a link between exposure to Agent Organge and higher rates of prostate cancer and several other chronic diseases. Fortunately veterans who served in Vietnam or aboard ships that made frequent port calls to Vietnamese ports and who later develop prostate cancer are now compensated with disability and treatment costs as their cancer is presumed to be caused by exposure to Agent Orange. All that needs to be proven is service in country or aboard certain ships and this information should be documented in the DD 214 form given at discharge. I would strongly encourage any veteran who served in Vietnam to contact their local Veterans Administration office for more details and procedures for receiving compensation.0 -
RadiomanYTW said:CK and Navy
Hello all; Frequent reader, non-frequent poster. I envey you youngsters serving on those big ships. I was on an APD (converted destroyer escourt) for 2 years. Carried Navy seal(Frogmen in those days) and Marine recon. Last ship was an AKA (cargo) that re-supplied the Antartic bases. McMurdo and Hallet Station. My trip there was in 1961. Discharged upon arrival at end of that cruise. Served four years as a radio-op. As far as CK goes. Recieved my treatment here in Cleveland at University hospital. My RO (PHD) is also a URO and has been using CK since its beginning. Just about 3 months post treatment and am still having a slight urinary (urgency) problem but had that prior to discovering Pca. Am able to obtain a useable errection (not quite like the old days) but useable. Age 71
Jimmy,
It looks from your picture that you've recreated your own little radio shack at home!0 -
Was it a secret?mrspjd said:Nov 11 Veterans Day--Thanks for your service
Just thought it would be appropriate on this day, Nov 11, with the posts about military service sprinkled amongst the PCa posts in this thread and others, to say thanks to all of you have served or are serving. Thank you.
YTW,
Glad to see you have posted again recently, especially with an update. I had read your older posts, knew you were the 4th CK, and had often wondered how you were doing. I even asked Kongo (he can confirm my inquiry) a while back if he knew how you were doing, but if he did, his lips were sealed and he maintained confidentiality!
PJD is originally from the Cleveland area, but ultimately the Navy brought him to California. Small world indeed!
All the best in your recovery and PCa journey,
mrs pjd
I don't read every thread or know the background of every member. So, if you know of any other CK patients on this forum, please share that information. Thanks!0 -
That Was In The Back of My MindKongo said:Thanks for your thoughts
Mrs PJD
Thanks so much for your best wishes on Veterans Day. While this thread seemed to highlight the number of navy veterans, I am sure there are plenty of army, marine, and air force veterans out there too.
Vietnam veterans who served in-country have a special relationship to prostate cancer as several studies have now correlated a link between exposure to Agent Organge and higher rates of prostate cancer and several other chronic diseases. Fortunately veterans who served in Vietnam or aboard ships that made frequent port calls to Vietnamese ports and who later develop prostate cancer are now compensated with disability and treatment costs as their cancer is presumed to be caused by exposure to Agent Orange. All that needs to be proven is service in country or aboard certain ships and this information should be documented in the DD 214 form given at discharge. I would strongly encourage any veteran who served in Vietnam to contact their local Veterans Administration office for more details and procedures for receiving compensation.
I thought there might be a connection to Agent Orange, but didn't associate it w/Navy service -- just the Army/Marines. Pretty astounding that any service in VietNam is now considered presumptive of cause for PCa. Just another sad consequence of that war.0 -
CK ClubSwingshiftworker said:Was it a secret?
I don't read every thread or know the background of every member. So, if you know of any other CK patients on this forum, please share that information. Thanks!
Swing,
To the best of my knowledge, those who regularly post here who have joined the CK club include you, Jimmy (YTW), ViperFred, and myself.0 -
Kongo
I think that I mentioned before that I was a radio-op in the Navy. My last tour of duty took me to the South Pole and I obtained my Amateur(ham)Radio license for that trip as the ship had a ham shack on board but no FCC licensed operatror. A Navy radio-op could not opoerate on the ham bands without a ham license. I have been actively hamming from home ever since. Great hobby, talked to the world......................Jimmy/K8YTW/Cleveland0 -
KONGO-AGENT ORANGEKongo said:Thanks for your thoughts
Mrs PJD
Thanks so much for your best wishes on Veterans Day. While this thread seemed to highlight the number of navy veterans, I am sure there are plenty of army, marine, and air force veterans out there too.
Vietnam veterans who served in-country have a special relationship to prostate cancer as several studies have now correlated a link between exposure to Agent Organge and higher rates of prostate cancer and several other chronic diseases. Fortunately veterans who served in Vietnam or aboard ships that made frequent port calls to Vietnamese ports and who later develop prostate cancer are now compensated with disability and treatment costs as their cancer is presumed to be caused by exposure to Agent Orange. All that needs to be proven is service in country or aboard certain ships and this information should be documented in the DD 214 form given at discharge. I would strongly encourage any veteran who served in Vietnam to contact their local Veterans Administration office for more details and procedures for receiving compensation.
Although I was in the Navy on a carrier and then destroyers I was deployed inland on several occasions so I didn't have a problem validating the boots on the ground. The va advises that you submit any paperwork that will help support your claim because without the paperwork your claim goes nowhere. They'll send you informational packets on what you need. Just give them a call. I have heard claims taking years to approve/disapprove only because one document was missing !! It is a pain getting all of the paperwork in order but it is worth it. For prostate cancer your disability rating will be 100%. It is not forever though. After a certain period of time, depending on your situation, they will schedule you for a va physical exam. If the results show a psa within acceptable limits they will drop your rating from 100%.whereit goes from there is very subjective and is dependent on good old prostate cancer side effects such as urination frequency, leakage, etc; They also take into account what type of treatment regimen you may be on ie; hormone, chemo, etc. Bottom line is if you don't file you'll never get anything. So if you're a vietnam era vet and believe you qualify, get that paperwork going!! good luck0 -
Excellent AdviceBRONX52 said:KONGO-AGENT ORANGE
Although I was in the Navy on a carrier and then destroyers I was deployed inland on several occasions so I didn't have a problem validating the boots on the ground. The va advises that you submit any paperwork that will help support your claim because without the paperwork your claim goes nowhere. They'll send you informational packets on what you need. Just give them a call. I have heard claims taking years to approve/disapprove only because one document was missing !! It is a pain getting all of the paperwork in order but it is worth it. For prostate cancer your disability rating will be 100%. It is not forever though. After a certain period of time, depending on your situation, they will schedule you for a va physical exam. If the results show a psa within acceptable limits they will drop your rating from 100%.whereit goes from there is very subjective and is dependent on good old prostate cancer side effects such as urination frequency, leakage, etc; They also take into account what type of treatment regimen you may be on ie; hormone, chemo, etc. Bottom line is if you don't file you'll never get anything. So if you're a vietnam era vet and believe you qualify, get that paperwork going!! good luck
Dan, excellent advice for anyone who served in Vietnam.0 -
To KongoKongo said:Tricare
Beau,
I use Tricare Standard. I haven't had any difficulty at all getting any doctor, specialist, or facility to accept Tricare and everything I did with respect to prostate cancer was covered. Of course, I am in the San Diego area with a large population of retired military in the area so it's kind of a no-brainer here. I used to have a supplement but my employer no longer carries that as an option based upon a nuance of the 2007 defense authorization bill. I just pay the difference, it's not that much for me and I can go anywhere.
BTW, if you are a Vietnam era vet and did time in-country or on certain ships that made regular port calls in Vietnam the VA will pick up the tab for everything as well as up reclassify your disability percentages. I was on a carrier in Yankee Station during that war so I don't qualify but if you are in that age group, you should check it out.
Is Tricare Standard a Humana product, or administered by Humana? Was Cyberknife coverage standard?0 -
Tricarehlimor said:To Kongo
Is Tricare Standard a Humana product, or administered by Humana? Was Cyberknife coverage standard?
hlimor,
Tricare Standard is not part of the Humana insurance coverage plan, at least as far as I know. Tricare is for military members (both retired and active duty) and their families. With Tricare Standard I am able to go to any doctor I choose that accepts the coverage, pay a small co-pay, and has a cap on total out-of-pocket expenses. Tricare paid for all of my Cyberknife treatment.
As an aside, I am now 13 months post CK treatment. PSA levels are below 1 at 0.8 which is in the middle of the median range for this time after treatment. I have had no side effects associated with ED, urninary function, bowel toxicity, tiredness. Nothing whatsoever.
More and more studies are appearing that support CK as an excellent treatment option for men with cancer detected early, have a Gleason score of <7, and a PSA of <10. According to my radiologist (I saw him last week) The King 5-year study now shows cancer-free rates at 94%, which I believe, exceeds all other treatments for the 5-year point. The protocol I underwent (part of another larger, multi-site study) used a slightly stronger dosage level and I took my treatments every other day instead of consecutively. At the two year point candidates in this study have had zero failures so far.
If you're considering CK there are several threads in the forum which discuss more technical details of this treatment option for many men and I would urge you to read them as part of the general research you will do while you sort through the treatment options.
Good luck to you.
K0 -
Very impressive stats. WishKongo said:Tricare
hlimor,
Tricare Standard is not part of the Humana insurance coverage plan, at least as far as I know. Tricare is for military members (both retired and active duty) and their families. With Tricare Standard I am able to go to any doctor I choose that accepts the coverage, pay a small co-pay, and has a cap on total out-of-pocket expenses. Tricare paid for all of my Cyberknife treatment.
As an aside, I am now 13 months post CK treatment. PSA levels are below 1 at 0.8 which is in the middle of the median range for this time after treatment. I have had no side effects associated with ED, urninary function, bowel toxicity, tiredness. Nothing whatsoever.
More and more studies are appearing that support CK as an excellent treatment option for men with cancer detected early, have a Gleason score of <7, and a PSA of <10. According to my radiologist (I saw him last week) The King 5-year study now shows cancer-free rates at 94%, which I believe, exceeds all other treatments for the 5-year point. The protocol I underwent (part of another larger, multi-site study) used a slightly stronger dosage level and I took my treatments every other day instead of consecutively. At the two year point candidates in this study have had zero failures so far.
If you're considering CK there are several threads in the forum which discuss more technical details of this treatment option for many men and I would urge you to read them as part of the general research you will do while you sort through the treatment options.
Good luck to you.
K</p>
Very impressive stats. Wish my Gleason would have ben <7 but I am very well pleased with my Davinci Experience so far.
lewvino0 -
Congrats, Kongo!Kongo said:Tricare
hlimor,
Tricare Standard is not part of the Humana insurance coverage plan, at least as far as I know. Tricare is for military members (both retired and active duty) and their families. With Tricare Standard I am able to go to any doctor I choose that accepts the coverage, pay a small co-pay, and has a cap on total out-of-pocket expenses. Tricare paid for all of my Cyberknife treatment.
As an aside, I am now 13 months post CK treatment. PSA levels are below 1 at 0.8 which is in the middle of the median range for this time after treatment. I have had no side effects associated with ED, urninary function, bowel toxicity, tiredness. Nothing whatsoever.
More and more studies are appearing that support CK as an excellent treatment option for men with cancer detected early, have a Gleason score of <7, and a PSA of <10. According to my radiologist (I saw him last week) The King 5-year study now shows cancer-free rates at 94%, which I believe, exceeds all other treatments for the 5-year point. The protocol I underwent (part of another larger, multi-site study) used a slightly stronger dosage level and I took my treatments every other day instead of consecutively. At the two year point candidates in this study have had zero failures so far.
If you're considering CK there are several threads in the forum which discuss more technical details of this treatment option for many men and I would urge you to read them as part of the general research you will do while you sort through the treatment options.
Good luck to you.
K</p>
Looks like CK has worked well for you.
I'm still at a PSA over 3 after 9 months and my RO says I may have to wait up to 4 years to get below 1 where you are already. Oh well . . .0 -
KongoKongo said:Tricare
hlimor,
Tricare Standard is not part of the Humana insurance coverage plan, at least as far as I know. Tricare is for military members (both retired and active duty) and their families. With Tricare Standard I am able to go to any doctor I choose that accepts the coverage, pay a small co-pay, and has a cap on total out-of-pocket expenses. Tricare paid for all of my Cyberknife treatment.
As an aside, I am now 13 months post CK treatment. PSA levels are below 1 at 0.8 which is in the middle of the median range for this time after treatment. I have had no side effects associated with ED, urninary function, bowel toxicity, tiredness. Nothing whatsoever.
More and more studies are appearing that support CK as an excellent treatment option for men with cancer detected early, have a Gleason score of <7, and a PSA of <10. According to my radiologist (I saw him last week) The King 5-year study now shows cancer-free rates at 94%, which I believe, exceeds all other treatments for the 5-year point. The protocol I underwent (part of another larger, multi-site study) used a slightly stronger dosage level and I took my treatments every other day instead of consecutively. At the two year point candidates in this study have had zero failures so far.
If you're considering CK there are several threads in the forum which discuss more technical details of this treatment option for many men and I would urge you to read them as part of the general research you will do while you sort through the treatment options.
Good luck to you.
K</p>
Hey shipmate
Great to hear of your treatment success!! Your results so far seem to indicate that you are on a path to defeat this beast. BRAVO ZULU----Dan0 -
Another CKSwingshiftworker said:Hey, Another Navy/CK Bro!
What's up w/all you guys from the Navy? An odd coincidence, but welcome and thanks for uncloaking!!!
Great to find another CK patient -- that makes 4 that I know of: ViperFred, Kongo, me and you. Looks like you got CK about the same time as Kongo. I had my CK treatment about 1 1/2 months ago and like you had the same urinary urgency problem after treatment as I did before. Was taking 2 tabs of 160mg Saw Palmetto extract a day for awhile w/o any noticeable effect, then increased the dosage to 4-6 a day (2 morning, 2 afternoon and 2 evening) and the urgency has gone away. Have missed the afternoon dose a couple of times and doesn't seem to make a difference, so 4 a day may be enough. As for ED, your situation is probably due primarily to your age than to the treatment, as they tell you is likely to happen regardless of the treatment.
Try it to see if the Saw Palmetto works for you or not AND please keep in touch to let us know how your CK recovery is progressing. Good luck!!!
Great to see Kongo's progress and Swing, add me to the CK completion list. I am 3 weeks out and weaning myself off of Flomax (2 per day). Urgency and burning stopped after 2 weeks out. I am replacing with Saw Palmetto but have seen no difference yet. Minor ED issues but better than I anticipated.
I was not in the Navy but I was an agent with the GOV. Not knowing what I was volunteering for, I trained with "those guys" in Coronado because they had nothing to do after Vietnam. Best time of my life and the worst.
Will report on mt PSA progress in 2 more months.0 -
Saw Palmetto & FlowmaxJJPhare said:Another CK
Great to see Kongo's progress and Swing, add me to the CK completion list. I am 3 weeks out and weaning myself off of Flomax (2 per day). Urgency and burning stopped after 2 weeks out. I am replacing with Saw Palmetto but have seen no difference yet. Minor ED issues but better than I anticipated.
I was not in the Navy but I was an agent with the GOV. Not knowing what I was volunteering for, I trained with "those guys" in Coronado because they had nothing to do after Vietnam. Best time of my life and the worst.
Will report on mt PSA progress in 2 more months.
FWIW, I still have mostly the same level of urinary urgency and frequency that I had before treatment (which is the reason that I 1st saw a urologist and led to my PCa diagnosis) but I don't use anything currently to treat it
I used saw palmetto for awhile before treatment and it didn't cause any noticeable improvement. SP also masks PSA -- lowers it -- which would NOT give you reliable post CK treatment reading levels. So, it would be best NOT to use it while you are monitoring your PSA levels post treatment.
I tried Flowmax before treatment too but stopped using it when it dried up my semen flow. Didn't notice that it helped much w/urinary frequency or urgency either but didn't really give it a complete trial. May go back to it but not until my semen flow dries up "naturally" following treatment.0
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