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Joined: 4/27/2009
Posts: 14
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been lurking here form several months gaining quite a bit and now it's time to join in.
clinical background:
60 y/o WM
I'm relatively fit still running 4-6 miles a week and it fact it's my relative level of fitness that seems to make people suggest surgery. I'm nervous about surgery and certainly can read the outcome data that doesn't seem to be particulary better than radiation therapy over time.
hx prostate cancer in my father who still living at age 83 or so.
slowly increasing PSA from age 55 until I had a biopsy by local urologist in Sept 2008. Eight cores taken with two of four cores on left side showing Gleason 3+3 with volume less than 20%. No cancer found on right side but I was always troubled by the comment on the path report about the "small amount of tissue" available for exam. Local urologist, on my request, sent me to UNC for further consultation. At the time of this biopsy my PSA was 4.4.
I've been aware of Cyberknife for quite a while based on my initial research. Once he heard I was interested in the possibility of that approach he seemed pleased to have me at UNC. At UNC, in Oct 2008, I saw a radiation oncologist and a surgeon I was not able to see the Cyberknife provider, Dr David Morris, but did later on to be discussed in a bit.
We dicussed the various treatment approaches and decided on an active surveillence with curative intent approach to see where things would go. At my annual physical in December 2008 my PSA had moved to 5.6. I was not pleased.
I had follow up scheduled in March 2009 so I asked my PCP for another PSA in March 2009 which again was 5.6. On seeing the urologist in March 2009 he suggested another biopsy which the literature on active surveilence would call a restaging biopsy. While I wasn't wild about having another biopsy I knew the information gathered would be helpful. It might be noted my PSA was again 5.6 when drawn at UNC.
The same day I saw the urologist I also saw Dr David Morris, the director of the Cyberknife Progarm at UNC who told me they were just starting to recruit for a clinical trial for Cyberknife. I understand there are two trials and he is doing the one that emulates HDR Brachytherapy Dosimetry. I had the impression he felt this is the stronger clinical approach but that may have just been my impression.
At any rate, with all this possibly too much background, I got my second biopsy report today. This was a 12 core sample showing on the right mid side Gleason 3+4 in 1 of 3 cores at 10%. The right apex and base were clear.
The left apex showed 2 of 2 cores with Gleason 3+4 at 10%; the left mid had 2 of 2 cores with Gleason 3 + 4 at 60%; the left lower had high-grade PIN but no cancer.
It seems clear that now is the time for the curative intent part of active surveilence. It seems now with Gleason 4 cancer showing up I now have moved into the intermediate risk range of prostate cancer. It also seems the clinical trial emulating HDR Dosimetry covers intermediate grade cancer as I read the criteria.
I have a number of questions and will follow up with the docs at UNC but I'm wondering the following:
Should I ask for the path report to be reviewed again? I had my original biopsy sample read by Dr Epstein's lab at Hopkins who confirmed the Gleason 3+ 3 done locally. While it's clear I have cancer, Gleason 3+3 seems "better" that 3 +4 in terms of risk. The thing I don't like about academic medicine is a lot of the work is done by residents, as my pathology report was. It was, however, signed off and confirmed by an attending physician.
If I'm accepted in the trial what's the risk, if any, of being one of the early pt's in a trial. Dr Morris' answer was "we're extra careful on the first few".
How are trials paid for? Is my insurance going to be billed the the Cyberknife treatments or just the associated expenses?
By way of more background I'm a hospital based medical psychologist who see's primarily pain pts but has seen a bit of everything. I've been in and around hospitals for 28 years. I can tell you I'd rather provide treatment than recieve it!
I may have more questions and I'd appreciate any perspective or suggestions from the forum participants. Sorry for the length of this 1st post. I'll keep it shorter going forward.
Regards,
Ed
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Joined: 10/10/2008
Posts: 362
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Hi Ed Intermediate prognosis patients (including you from what I can discern from your post) are indeed eligible for the "HDR-like" trial All of our pathology specimens are reviewed by Dr. Bostwick, an expert with fairly equal stature c/w Dr. Epstein - I would be surprised if he changed Dr. Epstein's grade but it is possible Insurance still has to fund the CK treatment in toto - Good luck!
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 10/10/2008
Posts: 2354
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Everything above is correct of course. ALso, I think you would be eligible for the study using homogeneous dosing.
One thing Dr. Morris and Dr. Fuller did not mention to you is that the first few patients treated on the HDR-like protocol have to have their cases and plans reviewed by Dr. Fuller.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 362
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Right - Eligible for the homogeneous study as well, although the investigator in your area is using the "HDR-like" protocol, which is the same protocol that we use. Good luck.
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 4/27/2009
Posts: 14
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back again, I had my follow-up at UNC yesterday meeting with Dr Morris again. For various university reasons having to do with grants etc they are not ready to accept pts in the "HDR-like" trial yet. However, Dr Morris offered to treat me with the "homogeneous" protocol outside of a trial setting. It seems to be the same approach used by Dr King at Stanford. I would be treated every other day for five sessions and apparently the protocol has been changed a little to offer more protection to the testes. Does this seem reasonable? Also, somewhat surprisingly, to me anyway, it appears I would be the 1st prostate case they've done at UNC. Should this be a concern? I did sign a consent and asked them to check if my insurance would cover it. thanks for any input you may be able to offer...
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Joined: 10/10/2008
Posts: 362
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Dr. King's approach, off protocol, seems very reasonable - As to your being patient number one . . . Our patient number one had: PSA 9.4ng/ml (pre-CK) -->0.1 ng/nl 2 years post-CK, with zero complications . . . 100+ prostate pts later that result still has never been topped! As long as they have sufficient overall CK experience I think they will do a great job - Usually case numero uno gets all sorts of attention (My prostate case number one went on the local news with me!!)
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 4/27/2009
Posts: 14
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well, I start my treatment tomorrow. I completed all the prep work last week. I'll being getting the five treatments plan used at Stanford every other day. I will, in fact, be the first prostate case they've done at UNC which gives me a little pause. However, I didn't want surgery and it seems if you are going to use radiation therapy, CK appears to be the way to go. My PSA actually went down recently from 5.6 to 5.4 so at least that's stable. Many thanks to the doc's and other posters at this site. The info here has been invaluable for me.
If there is any interest, I'll post how the experience goes.
Ed
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Joined: 10/10/2008
Posts: 2354
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We are well known voyeurs. Let us know how things go.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 379
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Hi ecrane, Congratulations! As you likely know the first couple years of PSA values are quite erratic. My last reading was at 15 months, 0.61 ng/ml. Have had two bounces so far. My starting PSA is a bit of a mystery as the reading before CK was 9 months old at 4.0. My Velocity (2006 to 2007) the year before treatment was 0.76 ng/ml (that is why I had a biopsy). My guess is that the PSA before treatment was 5.0 to 6.0 ng/ml. I continue to research and read about our treatment options and the CK continues to increase its lead over all others for localized PCa May your PSA continue to fall and your quality of life continues to rise.
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Joined: 4/27/2009
Posts: 14
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Well the first session went well yesterday as I feel fine this am and went on to work. The session was a little long and they said the 1st would be the longest as they did some additonal setup. I believe they said I recieved 263 beams from various angles. The range of motion on the CK machine is remarkable. Other than feeling a little "warm", like a mild sun burn, in the pelvic area afterward, gone this morning, I feel fine. Is this warm sensation typical? I don't recall reading about that in the posts I reviewed regarding other treatment sessions folks have had. Treatment 2 tomorrow and I plan on hitting the health club first, as usual, doing my 2 mile run and my usual stuff. We'll see if I can continue with this routine over all five treatments. regards
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Joined: 10/10/2008
Posts: 2354
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Have not previously heard the "warm" sensation, but it is nothing to worry about.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 362
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I do not recall any of my CK patients describing a "warm" sensation and do not have any physiologic explanation as to why such a sensation would be felt. Agree w Dr. Medbery - Nothing to worry about -
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 4/27/2009
Posts: 14
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second session went well aside from some trouble getting me positioned so the CK machine could line everything up. I was able to run in the morning as I usually do. I feel maybe a little more tired today but will try the usual exercise routine again tomorrow. I'm at work again today and generally feel fine. I do have a question for the Docs however if they wouldn't mind. I'll ask mine tomorrow. I had blood drawn after the first treatment Monday. When I asked yesterday what what the PSA was the nurse told me 11 something. I had a PSA of 5.4 when last checked in June 2009, two months ago, and that was down from 5.6 where it has been, checked twice, since November of 2008. It seems hard for me to believe my PSA could more than double in two months given how stable it's been up to this point. But it also seems unlikely, to me anyway, that the first treatment could disrupt the prostate enough to cause an increase in PSA that soon after the treatment. I didn't have or do any of the things that can cause PSA to rise (DRE, sex etc.) Any thoughts? thanks and regards
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Joined: 10/10/2008
Posts: 379
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Hi ecrane,
PSA during and shortly after CK is unpredictable. The first treatment was a major blow to the DNA of the prostate cancer potentially producing a surge in PSA. That is why most studies wait 3 months after treatment to take the first PSA. The PSA at 3 months to 24 months is less erratic but some patients have bounces along the way to NIDAR. At 24 months and beyond most patients seem to follow a gradual drop to NIDAR. Your recent PSA numbers suggest a pretty stable PCa with reading that may vary based on lab repeatability combined with your normal biology. Intercourse will also cause PSA changes, that is why labs say to abstain for 48hrs prior to blood draw/
I am a patient like you, treated May 2008 with CK.
May your PSA fall and your quality of life rise  .
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Joined: 10/10/2008
Posts: 2354
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You might wantto talk with them tomorrow and see why they drew blood. I suspect that they are trying to see what happens to PSA during treatment. We would not usually get one during treatment.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 362
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I have had a couple patients mistakenly get their PSA samples drawn too soon and the levels are indeed "wild" . . . . Storm goin on in there for the 1st couple weeks at least . . . Remember one guy that went from something like PSA of 5 to something like PSA of 30 a week or two out - Don't recall ever seeing one at exactly the same time point you describe but I'd be inclined to agree w Fred and blame the rise on early radiation-induced cellular disruption and basically otherwise ignore it - By 1 - 3 months post-treatment it should be much, much lower
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 7/23/2009
Posts: 6
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Today I finished my 5 days of CK. I would do it again in a heartbeat. The worst part when they took out the catheter after the CT and MRI. I was sore for a few days. The CK was only 1 1/2 to 2 hours each day and my back was sore from the table. All in all it was not a bad experience. I did not have any side effects. My brother who is into his third week of Brachytherapy was bleeding rectally pretty bad. He is 66, 6 years older than me and having a tough time. He did ask his urologist why he didn't recommend CK and he told him it is experimental and most insurance does not cover it. Unfortunately for him he has Medicare and they would have covered it. They just don't do it at Northwestern, the hospital he is afiliated with. Of course my urologist didn't recommend it either. Probably because he owns part of the IMRT place that he sent me to after telling me I was not in good enough health for the surgery! Luckily my wife works for an oncologist at Christ Hospital in Illinois where they do have CK and I did realize I had a choice. My insurance, BC/BS Anthem, has not sent me anything after the "peer to peer" which was done two weeks ago, however they have paid for the CT, MRI and fiducial placement. I'm getting my appeal letter together in anticipation of the denial and plan to write all of our elected officials. Everyone has been so kind in helping with my appeal. We are just kind of holding our breath waiting for a response from Anthem. I will keep you all posted. I feel even if it comes back after 5 or 10 years it was all worth it even if I have to pay for this myself.
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Joined: 10/10/2008
Posts: 2354
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Make sure you stay in contact with viperfred if you have to appeal. He has "been there, done that".
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 3/22/2009
Posts: 36
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Southsider-- I am planning to petition Anthem to change their policy on CyberKnife. One thing I noticed, not sure if I mentioned this to you earlier, is Anthem policy on IMRT mentions the lack of clinical trials on IMRT and that the technological advances on External Radiation have just been implemented with any trials. Good Luck.
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Joined: 10/10/2008
Posts: 2354
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There are a lot of things that are approved without much clinical data to confirm efficacy. Let us know if we can help with your appeal.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 362
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I would say that less than 1/10 oncology procedures done in the U.S. today have level 1 clinical evidence behind them. In the majority of cases, where we do not have the definitive study to support our plan of action, we rely on our training and expertise to make the best decision possible. Unfortunately, with CK prostate, politics has also crept into the equation, because the CK simply slays too many sacred radiotherapy cows, and as such, is still not supoported by the majority of our specialty. That is really the main reason for the insurance quagmire in my opinion. At the end of the day though, either it is good treatment or it isn't. If it is then it will be widely covered (eventually). Meanwhile, the way we get it covered is case-by-case trench warfare I'm afraid.
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 10/10/2008
Posts: 379
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It would be useful for the grass roots troops to have a list of the treatments without 10 or 20 year data to prove safety and effectiveness vs those that 1, 5, 10 or 20 year data. I doubt there are many cancer treatments with 20 year data showing their superior outcome. Some of you may or may not know we have a small force (doctors, a superior court judge and small business owners) going to DC (September 21-25) to meet with CMS and politicians. We can need as many tactical weapons as possible for this political battle. I suspect the opposition is well entrenched with double agents in all levels of CMS, NIH and even the CK users. We want only the truth the whole truth and nothing but the truth.
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Joined: 10/10/2008
Posts: 2354
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Somehow I just flashed on Jack Nicholson.
Virtually nothing has 20 year data, and it is meaningless in any case, because we have moved on. Nobody in their right mind would take a 20 year old form of treatment when you are talking about highly technical fields like radiation. There is little 10 year data, and the same caveat applies to some extent.
There is 1-5 year data for a number of things, but when it comes to prostate cancer it is also not very meaningful, because it takes longer than that to really know the results.
Furthermore, there have probably not been more than 3-4 randomized trials in prostate cancer in ALL time. They are very difficult to do for a variety of reasons. I am personally only familiar with one that I can think of right now, and it was not very good.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 379
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Hi Dr. Medbery III, I want to make it clear to the bureaucrats that there is no long term data for any of the RT treatments used today to counter the ASTRO scare tactics.
Commenting about the CyberKnife "This is really pushing the envelope," said Anthony L. Zietman, president-elect of the American Society for Therapeutic Radiology and Oncology (ASTRO). "It might be as good and more convenient. It may be better and more convenient. But it could turn out to be a disaster. No one knows."
Patients are now five years post treatment what hints are there that a disaster might be in the future?
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Joined: 10/10/2008
Posts: 362
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And pigs will fly before we see a randomized proton trial because they really do not want to see the scientific answer to that one . . . "All in good time, my little pretty . . . all in good time" . . . . . . The Witch
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 10/10/2008
Posts: 2354
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There are no hints.
I find it astounding that as respected a radiation oncologist as James Cox would take the position that we SHOULD NOT do proton trials because it is obvious that they are better. Except to me.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 4/27/2009
Posts: 14
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well, I have completed treatment days 3 and 4 with my final treatment scheduled for tomorrow. To date, I've noted some fairly mild urinary urgency and frequency with no rectal symptoms at this point. We'll see what the next few weeks bring. If I understand the process correctly it appears these symptoms may increase after the treatment is complete. I felt a little tired toward the end of last week but I've maintained my regular exercise routine and feel well overall. I asked about my elevated PSA mentioned earlier, and the concensus was the prostate may have still been irritated some from the fudical placement several days prior to starting treatment.
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Joined: 10/10/2008
Posts: 379
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Hi ecrane, Symptoms peaked at 8-days post CK and quickly dropped to about 80% of base line at two weeks post CK. I forgot about the side effects and at three months when I had my first PSA test, I realized there were no side effects. My symptoms were urgency and frequency for solid and liquid waste systems. I ate salads and fruit during and after treatment. I am sure that contributed somewhat to my experience. Keep us updated with your CK path. May your PSA drop never ti rise again!
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Joined: 10/10/2008
Posts: 362
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Protons do make pretty pictures for web pages and newspaper ads . . . Helluvanexpensive printer though . .
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 4/27/2009
Posts: 14
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It's been a week since my last treatment. The side effects of urinary and rectal urgency and frequency have increased as I was told to expect. I was given Flomax and filled the script but have not used it as of yet. I'd describe the problems as "mild" but it is getting somewhat annoying. I'm hoping for a decrease in these symptoms over the next week or so. Aside from this, I feel fairly well and have kept with my work and exercise schedule with no real sense of fatigue. My first f/u is in a month and they are going draw PSA which seems kind of soon based on what I've read here to show a decline in PSA. Regards and thanks to all here who have shared their knowledge and experiences.
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Joined: 10/10/2008
Posts: 2354
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That PSA probably won't be very helpful, but it does not hurt to get it.
Symptoms may persist a little longer.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 379
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From memory Post CK, day nine, was the peak of urinary and rectal urgency and frequency. no meds taken and by 14 days post CK felt pretty good and was about 80% of base line and gradually went to base line at three months.
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Joined: 10/10/2008
Posts: 362
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Our CK patients typically have their symptom peak between 7 - 14 days post-treatment, with roughly 50% improvement at one month and complete improvement by two months (though sometimes they take Flomax for considerably longer periods).
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 3/22/2009
Posts: 36
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I had some minor urinary issues. Started taking Flomax after 3rd treatment and stopped 3 weeks later. Also took some Aleve. Did not have any rectal issues except frequency for about a week or two.
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Joined: 10/10/2008
Posts: 362
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I'd rank that one as about a "3" on the proverbial "1 - 10 scale" of CK side effects . . . Good for you
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 4/27/2009
Posts: 14
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Dr Fuller, I appreciate getting the time line you noted in your pt's. I'm at day 12 post tx now and have to say I don't feel things are slowing down much. I, like many here I suppose, have read all or nearly all of the personal experience threads both here and in the archived forum. At this point, I would call my symptoms moderate not the "mild" ones I've read from other posts. I have noted , and I don't recall reading this anywhere, occasional "globs" of what appears to be mucus in my urine. At times, it even seems to slow the flow until it is pushed out by the stream. I called my CK doc today to ask about it and he said it was likely resultant from the radiation. However as you'll recall from above, I'm the first prostate case this facility has done in spite of the fact it's a large nationally known research university. The answer I was hoping for was "yeah that happens all the time, it will pass".
To the docs or other post treatment pt's. Is this typical, or is it something to be concerned about?
Along similar lines, is the severity of the side effects in anyway related to outcome, developing late effects at a point in the future or any other issues? In case it's helpful I've been taking Flomax and Pyridium since last week when the symptoms started to increase about a week after my last treatment.
Again I thank you all for sharing your knowledge and experiences...
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Joined: 10/10/2008
Posts: 2354
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"It will pass"? WE are the ones who are supposed to do comedy here!
I don't think this is something to worry about. You are still in the very early time period after your treatment, so give it a little time. This does not likely relate at all to long-term outcome.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/11/2008
Posts: 928
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"This too shall pass..."
Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828 Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Joined: 4/27/2009
Posts: 14
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Today is the fifth week out since my last CK treatment and as the docs predicted my acute side effects have abated and I would say I'm very close, if not at, pre-treatment baselines in terms of urinary and rectal functioning. I had my 30 day follow-up this past Monday and a PSA was drawn. PSA was 6.1 which was down from 11 something which was drawn literally within minutes of finishing my first CK treatment. As I explained above, this 11 reading was nearly double my prior PSA readings which had been stable in the mid 5's since Nov of 2008. My last pre-treatment PSA was 5.4 in June of 2009. The reading of 11 was attributed to the prostate still being "agitated" from the fudical placement. At any rate, am I not correct to assume this reading may not be particualry accurate and the readings drawn at 3 months and out from there will be more meaningful? I'm in a hurry to get to that reading that is less than 1. Again, I thank you all sharing your knowledge and experiences.
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Joined: 10/10/2008
Posts: 362
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One month post-CK PSA readings are all over the map - If it is down, enjoy it and if it is up, ignore it . . . We most typically see a two stage PSA response in our own CK prostate practice ~ 1.0 ng/ml by 3 - 12 months ~ 0.25 ng/ml by 24 months That said, there is quite a bit of individual variation and "PSA bounces" appear commonly at the 6 - 18 month interval.
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 10/11/2008
Posts: 928
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At least it is a good start.
Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828 Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Joined: 4/27/2009
Posts: 14
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had blood drawn last week in advance of four month follow-up next week. PSA was 3.5 which is lower than my pretreatment PSA'a which were in the mid 5's . The one month follow-up blood draw was 6.1 so things are trending the right way. Side effects have all pretty much faded and I feel well. I'm taking Flomax although I'm not sure I still need it. I am hoping this decrease in PSA will be an ongoing thing. Regards
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Joined: 12/28/2009
Posts: 3
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Ed, I'm glad this has gone well for you. I too have been a lurker here for some time. I became convinced a couple of months ago, based on my PSA and Free PSA along with my Dr's demeanor that my biopsy would not yield good news. I had the biopsy on Dec. 18th and got the results on Dec. 21st. 3=3 Gleason 6, 12 cores, one positive at 5%, last PSA Sept. 28th, 3.2. I have read all of the threads here and the archives as well. I'm looking for a CK center in South Texas to avoid travelling to Houston or Dallas if possible. I'm in San Antonio and I know there are 2 centers here but I doesn't appear that they are doing CK for prostate. Another concern I have, and this is directed to Dr. Fuller, is that I discovered in August that my testosterone level is abnormally low, right at 200. My Urologist had me on exogenic testosterone, which I took stopped taking on my own after my free PSA level came in unfavorably. However, I felt so much better while using it that I am unwilling to discontinue it permanently. My question is, outside your concerns relating to the tort bar, why would returning my levels to NORMAL be harmful in an instance where hormone therapy would not be normal protocol based on my biopsy results. I am as concerned about this issue long term as much as I am the biopsy results. I am intersted in quality of life, not quantity, since no quantity is guaranteed anyway.
Scottcgc
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Joined: 10/10/2008
Posts: 362
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It wouldn't be harmful in my opinion. I bet we get some opinions to the contrary though. Stay tuned. And of course, the disclaimer, to protect my own little tortie sensitive hindie-endie . . . This is my opinion, not a medical recommendation. . . .
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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Joined: 12/28/2009
Posts: 3
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Thanks Doc, you will see a similar question under another post. Sorry for the duplication.
Scottcgc
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Joined: 10/11/2008
Posts: 928
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Better to ask twice than not at all.
Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828 Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Joined: 10/10/2008
Posts: 2354
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It is an unknown as to whether testosterone would be harmful. We ran into a similar situation with estrogen in breast and endometrial cancers, and the minimal data we have available suggests that adding hormonal therapy back after 3 or more years of no cancer is not harmful. But I can assure you that outside of a clinical trial you would have a difficult time getting any physician to write the prescription. I would have no problem putting people on a clinical trial however.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 4/27/2009
Posts: 14
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bringing this back to the top with seven month follow-up data. PSA now 2.0. Feel well with no particular issues at this early date. Quit taking Flomax after December follow-up. PSA hx posted below. 6-2009 5.4 (pre-treatment) CK treatment, five sessions, completed 9-2-2009. 12-2009 3.5 1-2010 2.7 4-2010 2.0
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Joined: 10/10/2008
Posts: 379
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Hi ecrane,
Glad you have no issues, same for me at 23 months post CK.
May you PSA continue to fall.
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Joined: 10/10/2008
Posts: 362
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Pretty typical PSA response. . . Normally it keeps falling for at least three years, albeit with the occasional upward "bounce" sometimes seen a year or two out, as we have intermittently discussed in this forum.
Donald B. Fuller, M.D. Radiation Oncologist CyberKnife Centers of San Diego 477 N El Camino Real, Ste D101 Encinitas, CA 92024 (760) 230-6706 dfuller@rmgmed.com
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