I just got the results of my first blood test after my proton radiation therapy ended at MD Anderson in Houston. The results are very good. I am on Lupron and generic Casodex (Bicalutamide), so a low reading is expected.
My PSA results were reported as < 0.1 ng/mL . I asked what the less-than sign really meant, and they said that it means that they detected PSA, but could not accurately measure the actual level.
This result helps me commit to the whole androgen deprivation therapy for at least another six months. Just got my third 22.5 mg dose of Lupron which will last for three months. Have a year-long prescription to the Bicalutamide.
The only remaining side effect from the Protons is smaller bowl movements. I now go more than once per day but usually not more than 3 times as opposed to once per day before.
My journey started with a routine physical back in January 2010 when I got a 4.1 PSA result (I am really happy that the initial PSA result wasn't 3.9 or I would probably still not be doing anything) just after my 58th birthday. It took me a couple of months to see a urologist and when I did he have me a digital exam and couldn't feel anything but still ordered another blood test which came back at 5.8 PSA. So I went back in to see him and when he found out my Dad had passed away from prostate cancer, he recommended that I get a biopsy.
I was still in the denial phase and took a little time to schedule a biopsy in May. When it came time to do it I was experiencing burning urination and so he postponed it and gave me a urinalysis which showed I had an infection so he put me on antibiotics and rescheduled the biopsy to July. I was now hopeful that the PSA results had been caused by the infection so I had another PSA done in July which now showed 7.8. So with that indication I went in for the biopsy. Watchful waiting was not a good idea for me. By this time I was starting to feel the prostate swelling and urination was starting to slow and low level burning was also starting. My sex drive began to diminish (7 of 10) which got my attention as well.
The results of the biopsy surprised even the urologist because I had 10% of 1 tissue samples that returned at Gleason 9 (4 with 5) and 3 tissue samples that showed Gleason 7 (3+4) and another 4 samples that showed Gleason 6, so now there was urgency and it was just a matter of which therapy to go for. The good news was that after a bone scan, a CT scan and an MRI, the doctors were convinced that the cancer was still confined in the prostate. The results surprised my Urologist because he could not feel any evidence of a tumor. The other four people that administered digital exams were also surprised that there was no evidence of hardening or of swelling.
My urologist was also a surgeon and uses laparoscopic techniques and has had good results with nerve sparring, so he was obviously an option for me. An obvious advantage is the surgeon gets to see the affected tissues and can continue removing until everything is gone. This may not have been an advantage in my case as there did not seem to be a tumor in the usual sense. He scheduled surgery for September 15 2010, but I decided to look around at all the options. It made sense to me to do hormone therapy after the surgery to make sure that all the abnormal cells are killed. I do have to say the when I called my surgeon to say that I was looking into Proton Therapy, he literally groaned. I think he knew that I would not be back.
But living in Houston offered a lot of alternatives. I got several alternative opinions and after evaluating at least six viable options chose to do Proton Radiation Therapy (PRT) at MD Anderson Proton Center knowing that surgery is always an alternative if I lose my nerve. I think I would have chosen surgery over IMRT (Intensity Modulated Radiation Therapy) as the side effects of IMRT are as troubling for me as surgery. [There are no independent studies that demonstrate a significant difference in side effects between photon and proton radiation therapies.] The treatment process is reversed for PRT and Hormone therapy is given first to shrink the affected cells and is thought to kill many of the abnormal cells which can slow any dissemination through the body. [This is another area where there is no consistent approach - some institutions oppose the concept of ADT prior to radiation.] I liked that idea as I was worried about the biopsy actually allowing diseased cells to migrate from the prostate.[This is a matter that is the subject of fairly regular discussion - see this for example.] Hormone therapy is sometimes used as the only treatment. I am not sure why it is not used more often as the primary treatment, but PSAs go away during treatment so progress is difficult to measure. Although, after six months on Lupron, I can see why Hormone treatment is not a generally accepted long term treatment as few would choose to remain on it long term.
So I began Hormone treatment on September 15 2010. It started with a Lupron shot (huge needle) and daily generic Casodex pills. The Lupron tricks your body into believing that there is too much testosterone in the body and stops production of it in the testes (chemical castration). The other pill blocks any residual testosterone from reaching the prostate cells. Anyway, it did the trick, my PSA on at the start of Proton Therapy was 0.156 and my Testosterone went from 750 to 57. My doctor forecast that the PSA will get to near zero and that the Testosterone level will get to between 20 and 30 which is the normal level secreted by the Adrenal glands, so he scheduled my proton treatments to begin in mid November 2010.
Side effects from the hormones have been relatively minor but are getting progressively worse over the past few weeks. I got hot flashes every so often in the first few weeks and that has changed to just flashes (rushes) originating in my crotch area moving all the way up to my neck area. It is worse at night and wakes me up almost every sleep cycle (90 - 100 minutes). It may be why I am feeling increasingly fatigued. My sex drive has been completely gone from the second week of Lupron and what is surprising me is that I don't miss it at all (yet). I do miss the activity though. (Getting a flash as I type.) I was treated with the pencil beam due to the seriousness of the cancer and because my prostate was shaped a little differently than usual. Only about half of the patients using the pencil beam were prostate patients and I understand that more and more of the patients are children with brain tumors or other non operable cancers. So, I felt lucky to get the appropriate treatment.
My urinary function immediately returned to normal although the worst that happened in treatment was some dribbling in week three and some slight burning in the last two weeks.
I am very happy that proton therapy was available and that I was eligible for it. I would make the same choice if I had to do it again. I have a childhood friend that just went through prostate surgery and really had no significant side effects other than the normal surgical healing and "felt" back to normal after two weeks. I would even do the Lupron therapy again as I feel that I owe it to my family to take the path that offers the best probability for a cure.
Sorry to take so much bandwidth. I am happy to have discovered this group. One the best things about MD Anderson Proton Center was the "locker room", the change room for prostate patients where we could commiserate and share our experience with the others. I got to hear from the guys just finishing up and also was able to advise the "newbies". It was very therapeutic and I highly recommend someone new to the process to try to get in touch with others going through same thing. I would also highly recommend MD Anderson as a place to visit as you consider cancer treatment. They have a very enlightened approach and the staff is cheerful and competent. This was not the case for some institutions that I visited.
Thanks for the opportunity to communicate.
Chris Tucson Arizona
Just took my 7th quarterly Lupron Depot shot. Only one more shot to go now to complete my two year program. Unfortunately, I find that most patients report that it takes the same amount of time to full recovery of function as your therapy lasted.
At about 6 months after Proton radiation therapy I began to experience rectal bleeding which intensified for a month and then began to be more intermittent. My proctologist said that the bleeding was from minor radiation damage and would probably abate soon and it did. I quit taking fish oil tablets as that seemed to make it worse. I have had no bleeding for the past 5 months. The bleeding was disconcerting, but was one the possible side effects mentioned when I started the treatment.
Still experiencing rushes at night and hot flashes during the day from the ADT. I was very happy to finish the one year of bicalutamide and immediately felt better. I even lost 7 pounds in the first three days after discontinuing the pill. I think it was water weight that I was carrying.
I am still struggling with lethargy, weight gain, water retention and bouts of minor depression. I lift weights and hike nearby mountains and it requires quite a bit of effort to get started each time.
The good news is that my PSA remains undetectable.
I am feeling much better at the moment. My last Lupron Depot shot was on October 1st, 2012 and after two and a half years I am starting to feel the effects diminishing. The immediate side effects that dropped away first were a) the ocular edema, (no more bright circular flashes of light when I first wake up), b) bouts of extreme fatigue (now I just get tired), and c) extreme erectile dysfunction (not great yet, but a few "actionable" erections, usually in the morning). I am glad that I stuck with the penis pump, as I don\'t seem to have shrunk as much as I had dreaded. My testicles are increasing in size and are aching now as I have only had one sexual experience since the end of treatment. But, I think I can see the light at the end of the tunnel.
In August 2012, I finally went to my doctor and asked if there was anything he could do about the muscle and bone aches when I got up in the morning and my worsening depression. He recommended Cymbalta and so I started taking it immediately. It made a tremendous difference! Within a few days, I had no more pain and began to feel better emotionally. I am really sorry that I didn\'t ask about something sooner. I am still seriously out of shape, but I am now motivated to work out much more. I still get an occasional rush or hot flash, but it is going away slowly and surely. I have not felt fatigue for the past month and do not miss it at all!
My first 3 month PSA (six months after my last quarterly Lupron shot) showed < 0.10 ng/ml and my testosterone had increased to 264 ng/ml from less than 20. My next test is scheduled for June 1st, 2013. I have to say it is good to have some testosterone back! I don\'t have any present side effects from the Proton Radiation treatment, although I am expecting my PSA to rise as the Lupron works its way out of my system.
I regularly attend the Prostate Cancer Support Group sponsored by the University of Arizona Cancer Center and look forward to each meeting.
June 2014 Update
This has been a great year. The Lupron occasionally still kicks in although it has now been 21 months since my last quarterly shot. The only side effect left is a weak erection, but that has steadily improved and is about 75% of where I left off at the beginning of treatment. I have a prescription for Cialis (Viagra didn't work and gave me a headache). I think I will have to get the dosage lowered as the last time I took one it worked very well for over a week, including some very strong erections that interrupted my sleep (not complaining).
I feel so much better now that I occasionally jog again and continue a regular weight training program and try to hike at least 10 to 20 miles per week.
My last testosterone test came in at 760 ng/ml which is higher than it was when I started treatment. I can really feel the difference in energy and drive. My first three quarterly PSA measurements were <0.1 ng/ml and then a 0.1 and then my last two tests have moved up to 0.2 ng/ml. I am very happy with that (and so is my oncologist). I expect that my level will go up a little higher as the Lupron finally dissipates from my system.
I am still on Crestor and have started a blood pressure medicine called Potassium Losartan. In looking back at my treatment, I regret not starting blood pressure medicine sooner and I think that I should have taken something for my blood sugar level that went up considerably during treatment, but has moved steady lower into very healthy levels now.
I feel very lucky at the moment. Cheers, Chris
I experienced another very good year. My testosterone levels have leveled out at about 750 and I have not experienced a "Lupron Low" for over 3 months now. I could feel the residual effects of the Lupron Depot off and on since my final dose in December 2012. It really did take two years to shake off those effects. The only remaining side effect is minor erectile dysfunction which is ameliorated by taking a 10mg dose of Cialis which lasts from 5 to 7 days. Life is good! My energy levels are good and I do 50 pushups and 80 crunches every day and weight lifting every other day.
My PSA has stabilized at between 0.19 and 0.2ng/ml with my last measurement at 0.19.
I have decided to continue with Crestor even though I may not need it anymore as it has been shown to have a prophylactic effect against prostate cancer.
I have borderline high blood pressure but have not found a treatment other than exercise and good diet that I can tolerate.
I feel very fortunate to have been able to take advantage of the Proton Beam Therapy available in Houston, TX where I lived at the time of my initial diagnosis.
Still feeling very lucky!!
I had a good year! My PSA has been bouncing between 0.19 and 0.21. My oncologist and I are very happy with that. I feel pretty good although I can feel my testosterone oscillate between 550 to 650. It actually feels like some remnant of the Lupron kicks in from time to time, but never more than a week at a time and never with the same severity of symptoms. Just a bit more tired, some water weight gain, joint discomfort and water in the eyes. Of course that could be age creeping up on me at 64. I am still very active. I exercise as before and have been staying busy remodeling a very decrepit rental home.
My blood pressure and blood sugar have returned to normal ranges and I feel strong. I still use Cialis to ensure erections and it actually seems to increase my sex drive although my Doctor says it is probably not directly related. I still take generic Crestor.
I am feeling very fortunate to be doing so well. Regards, Chris
Christian's e-mail address is: csellefson AT earthlink.net (replace "AT" with "@")