I've had my HDR Brachy Boost after 23 sessions of VMAT. TA you were right in saying that I was being overly anxious about the SE's. It's now been about a month since the HDR and apart from a few extra visits to the toilet at night (Flomax has helped) and the sudden fatigue that can hit, the SE's have been quite manageable. I'm guessing that with each week that goes by, I should see some improvement, so far I've not seen any significant improvements but from what I understand the residual effects of HDR can linger for a few weeks before the improvement starts.
Oh and by the way my latest PSA is 0.04 which my RO says is very good and will probably be my Nadir from here on in. At this stage my final Eligard 3 monthly injection will be in December and so all up I would have been on HT for 14 months. That may change, but I'm hoping not.
Ok, - 3 questions:
1: Has anyone after being on HT and after radiation experienced a few extra aches and pains in legs and arms? About 2 weeks ago I lifted a car battery and strained my forearm and it is still quite tender. Normally that would have healed quickly, but the strains now do not seem to heal very fast at all and the general aches are somewhat annoying. Is this normal? Will it get better?
2: I guess that my life is now going to consist of 3 monthly PSA testing. That's fine, I can live with that, but my RO said that unfortunately the effects of HT will not dissipate for probably as long as you have been on it. In other words you if you have been on HT for 14 months, it will take up to 14 months to get back your pre-HT Testosterone levels. Is that correct and can you safely speed up the recovery of Testosterone?
3: My RO has suggested taking Viagra if for no other reason than to stimulate blood flow where its needed. To be honest Libido is pretty well zero at the moment and I have a very understanding wife who fully understands that feeling ,having gone through menopause. So is it a good idea to take Viagra even if there is no intention to put it to good use if you know what I mean?
Thanks as always to you all and to those who might provide some answers to these questions. I'll make a final response after all answers have occurred.
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I also had HDR-BT five years ago with 18 mos ADT (Lupron). ADT definitely weakened my ligaments, and had a tear in my rotator cuff from playing tennis that has never healed back 100%. Also, had some joint pain as ligaments changed shape/weakened after one year on ADT. Within three months after my last monthly shot of Lupron, my T came back to 2/3 of what it was before it all started (1050 before ADT, 750 after ADT). Probably is a good idea to take Viagra or Cialis to get the blood flowing.
Great answer timotur, you covered off all my questions and all based on your experience. seems like we both had similar dx albeit I'm one up on you with G8 but hopefully all contained. Thanks again for your reply. Really good to know that the aches and pains and issues with muscle strains not repairing are par for the course of the treatment we are on and not any cause of the actual cancer. Thats a relief. 👍
Not to forget, while on a lengthy term of ADT, our bodies are also naturally aging. You should get your bone density checked STAT (DEXA scan.) ADT accelerates bone loss about 4x.
Yep I'm booked in for a bone density scan next week. I've definitely noticed that the bones tend to ache a bit more than usual and muscle strains take so much longer to heal. Thanks for your reply.
If you live in an area where qCT's are available that is much better for senior men than DEXA. Especially if you have any sort of arthritis, again especially relating to the spine. DEXA picks up calcification in spinal ligaments and elsewhere "fooling" the DEXA into thinking that you have greater bone density.
A qCT bone scan generally looks to a section of the spine, or to a section of the hip, it does not CT the entire body. Therefore you get to see bone density inside the vertebrae or hip specifically. While CT does expose you to x-ray radiation, due to the small area that is scanned, the actual dose is close to, and in some cases less than the small amount of x-ray dosage caused by DEXA.
qCT should be used especially if you have any spinal issues such as arthritis.
I've not heard of qCT here in Australia - I'm guessing it does exist. I'm having what is called here a BMD - Bone Mineral Density test, but with what machine I don't know. I'll soon find out next week when its done.
It sounds like you're doing well - relatively speaking. Good for you! Hope you continue to navigate the ups and downs of PCa, its treatment, and SEs.
Regarding your questions - my experience:
1) Yes, after IMRT and brachy and ADT, aches and pains seemed intensified. Def lost muscle mass and def gained wt (despite hiring a personal trainer, going to the gym, walking, biking), and gained man boobs after years and years of swimming. Sigh. A real bummer for me. I thought that, once all of the treatments were over, I'd return to my pre-treatment self. Didn't and still hasn't happened. At 75 yrs of age, ain't gonna happen. Certainly discouraging. Still have some joint discomfort but one must factor in the simple fact of being older. Oh, btw, fatigue is probably my biggest complaint.
2 and 3) Re T levels. Mine were low (250s) pre-treatment. Dropped to near zero during treatment. No interest in anything sexual. Was "on" ADT for 9 mos. It took about 18 mos to regain T and it has actually increased a bit (325). Sex drive has returned for the most part (again, age plays a big role). I suggest that you keep the" blood flowing" as much as possible even though your interest is diminished (non-existent?). Specifically, a penis pump may help. Yes, to ED meds. Masturbation helps to keep erections possible; that's really important. Hoping docs told you of sexual side effects; mine did not. But, I was fortunate to be in studies that provided info, "toys," and meds.
Edin I am almost 80 and we do a similar program except I do not swim. After my T returned I did notice a difference. In addition I made sure I was eating a caloric deficit diet.
I have lost 10 pounds over about a year, lost any man boobs and have increased my muscle mass in my arms, back as well as really giving my legs a very tight slim look. My big measure of fitness has been reducing pant waist by 2.5 inches and seeing the start of a visible six pack.
All that said perhaps it would be helpful to evaluate your diet and your weight and aerobic program for balance and effectiveness.
Based on your fatigue the following may not be easy but perhaps you need to push yourself a little harder to achieve results. I found this to be the case as I get older. I needed to get out of my comfort zone.
Thanks for your reply. Yes the belly fat is concerning as is the fatigue but all manageable. I'll tal to the Doc about Calais for blood flow . I guess its all about being patient with the treatment and hopefully once the SE's start to subside then maybe some semblance of normality might be experienced. But I appreciate the fact that we may never get back to where we were before treatment started. Thanks again.
Saw your posts and was curious about your radiation treatment. You wrote that you did 23 fractions and I’m curious on the dosage level for each fraction because I’ve never seen a radiation plan consisting of 23 fractions but always interested in learning new modalities.
What was the dosage level of the HDR brachyboost they gave you?
Fingers and toes crossed that you’re beating the PC beast and so far it’s looking really good from what I can see.
I too had 23 doses for a total of 60 GY to the prostrate and 44 GY to the pelvic area. They were done together during those 23 sessions. Not sure how this all worked but I did my job and did not move and drank my water before the each session.
Honestly never asked what the individual dosages were per session. Really I could have cared less.
So because I was having HDR Brachy Boost, the RO said I only required 23 sessions of VMAT. All up it was 42GY which over 23 sessions was about 1.8gy per session.
The HDRBB from memory was about 15GY and it was a single dose.
I'm based in Australia and so sometimes we may do things differently that in the USA.
The PDE5 inhibitor use (Viagra, Cialis, etc.) is fascinating. First, it does absolutely zero to libido. However the closer I look at it's effect the more likely I'll use it every day (often cialis is recommended at 5mg/day) because it's highly protective of the lining of the circulatory system, including those inside the penis.
"Jan 20, 2023 — A new study suggests that medications like Viagra, Cialis, and Levitra may lower the risk of death from cardiac disease by 39% for men." (search using those words, if you want to see the origin).
Well, it lowers cardiac risk because it's protective of the intima (inner lining) of our blood vessels.
What I have yet to find is, which PDE5 inhibitor would be best. Viagra has a short half-life, whereas Cialis (tadalafil) a very long one. Therefore, it seems logical that Tadalafil would be the best "bang for the buck." (Cialis, if using for erectile function's effects can last for 36-48 hours, Viagra, much, much shorter.)
As I see it, the bottom line is any PDE5 inhibitors are useful after insult (either prostatectomy or radiation) because they are highly protective of vasculature. You need not "see," or "feel" or even get an erection, and they will still be protective.
With a Goodrx coupon one can buy 20mg Cialis for about 35 cents each, chop them into pieces, daily cost = 7 cents!
Naturally, seek advice from your Practitioner, including whether or not you can chop up Cialis)
Penile rehab has always been important after prostatectomy but it’s also important when doing radiation and also when being on ADT.
Even if libido is lowered or gone it’s good to do what ever you can; use it or loose it. So, PDE5 inhibitors, penile pump and etc. is important tools to try to keep good health in your long time friend
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Hmm... Why am I on Zytiga?
Am I missing any options / pipeline developments that could allow me to stop HT?
6 monthly update and potential treatment questions
radiation for gynecomastia
HDR boost Brachytherapy + IMRT
