CyberKnife Treatment

CC52

mlevygm said:

Cyberknife

Swingshift,

Hi there I hope all is well.

I wanted to follow up and share with the group that I completed my last Cyberknife treatment Tuesday September 8th.  So far all is well.  No real side effects except burning when I urinate however that was only early in the treatment.

I occasionaly feel a little fatigued, other than that life is very normal.  I wanted to thank all of you for your knowledge, wisdom and encouragement.  Your posts led me to do more research with regard the best treatment for me.  Please continue.  

If I can help anyone with their decision or provide some personal advice I am more than honored.  Thank you so very much.

I will report back and let you know my latest PSA results.  FYI - My last PSA in late May this year was - 6.8.

Great!

Very happy to hear things are going well. Please stay active with your updates - they are welcome and certainly helpful in providing more detail to the Cyberknife experience.

CC

JoseSF

hopeful and optimistic said:

mlevygm

Good idea to have a Tesla 3.0 MRI before receiving treatment, since MRI can effectively identify seminal vesicle invasion, extracapsular extension and pelvic lymph node involvement. 

 

P.S. I know a man who had SBRT, did not have an MRI before, and as it turns our had extracapsular extension. He is now being treated by a medical oncologist.

Kaiser Cyberknive follow up

Hello:

Just diagnosed, similar stats as yours. Kaiser is proposing either surgery or brachytherapy. I want to ask about Cybernife. Wondering how it has worked out for you now that it's been a couple more months. Also, did you have trouble getting the CK approved at Kaiser or was it relatively easy?

Swingshiftworker

JoseSF said:

Kaiser Cyberknive follow up

Hello:

Just diagnosed, similar stats as yours. Kaiser is proposing either surgery or brachytherapy. I want to ask about Cybernife. Wondering how it has worked out for you now that it's been a couple more months. Also, did you have trouble getting the CK approved at Kaiser or was it relatively easy?

BT vs CK

JoseSF: Please read my lengthy post on this topic in your "Looking for BT at Kaiser Roseville" thread here: http://csn.cancer.org/node/298217.

CC52

Followup to my most recent post:

From completion of CK treatment in September 2014, I'd had an uneventful eleven months. All seemed normal, with very good PSA numbers, urination and bowel function was good (different than pre-CK, but ok), and sexual function was satisfactory.

In late August, problems with urinating began. Increased frequency, a weak stream with difficulty starting (mostly at night and with a full bladder). With my one year check-up scheduled for September 25, I began 4mg Flomax 1x per day on 9/15. At my appt., my RO asked how I was managing and recommended going to 2x per day Flomax. He also advised that for some men, at about one year out from CK treatment this sort of thing happens. He asked if I felt I needed a steroid was necessary, but I told him I thought I could manage with just the Flomax.

About three weeks later, much more serious burning began upon urination. Very uncomfortable. Went for a urinalysis for a possible UTI - came back negative. Was given Phenazopyridine 200mg that coated the urethra to help ease the burning. That stuff turned my urine bright, almost flourescent orange. Weird. Anyway, with the negative on a UTI, I started the steroid (Dexamethasone, 2mg) for a two week cycle. That provided immediate relief. About the end of the second week, burning returned, and my RO ordered another two week round. That med kicked my butt. Very lethargic, extremely tired...not much of a desire to do anything. I worked every day, but came home exhausted and spent most evenings napping until bedtime. Wifey was more than a bit concerned, as were my coworkers.

While this was happening, I began developing a rash on my buttocks very similar to the shingles outbreak I had during my treatment in Sept 2014. Treating Dr thought it was some type of a herpes outbreak. Lab results indicated otherwise - a strep infection - that was then treated with an antibiotic. Completed that prescription yesterday.

Today, at long last, the rash is slowly clearing. I'm off the steroid for two weeks, and urination remains pain free. An occasional sting/burn randomly occurs. Continuing 2x per Flomax. 

I have no way of knowing how all this relates to my CK treatment - except to believe it is somehow connected. Meds and their side-effects, the rash and it's place in the mix is an unknown. All I know is that relief has come through time and meds - one or the other - or both.

All of this has had it's affect on me, but to this point I remain confident that CyberKnife remains atop the list of options that are available to those in the club.

I see my RO in March for my next scheduled appointment. 

CC

(footnote: there is a fellow on the Accuray site that is about 3 years out from CK, and he had very similar issues to mine recently. 

Swingshiftworker

CC52 said:

Followup to my most recent post:

From completion of CK treatment in September 2014, I'd had an uneventful eleven months. All seemed normal, with very good PSA numbers, urination and bowel function was good (different than pre-CK, but ok), and sexual function was satisfactory.

In late August, problems with urinating began. Increased frequency, a weak stream with difficulty starting (mostly at night and with a full bladder). With my one year check-up scheduled for September 25, I began 4mg Flomax 1x per day on 9/15. At my appt., my RO asked how I was managing and recommended going to 2x per day Flomax. He also advised that for some men, at about one year out from CK treatment this sort of thing happens. He asked if I felt I needed a steroid was necessary, but I told him I thought I could manage with just the Flomax.

About three weeks later, much more serious burning began upon urination. Very uncomfortable. Went for a urinalysis for a possible UTI - came back negative. Was given Phenazopyridine 200mg that coated the urethra to help ease the burning. That stuff turned my urine bright, almost flourescent orange. Weird. Anyway, with the negative on a UTI, I started the steroid (Dexamethasone, 2mg) for a two week cycle. That provided immediate relief. About the end of the second week, burning returned, and my RO ordered another two week round. That med kicked my butt. Very lethargic, extremely tired...not much of a desire to do anything. I worked every day, but came home exhausted and spent most evenings napping until bedtime. Wifey was more than a bit concerned, as were my coworkers.

While this was happening, I began developing a rash on my buttocks very similar to the shingles outbreak I had during my treatment in Sept 2014. Treating Dr thought it was some type of a herpes outbreak. Lab results indicated otherwise - a strep infection - that was then treated with an antibiotic. Completed that prescription yesterday.

Today, at long last, the rash is slowly clearing. I'm off the steroid for two weeks, and urination remains pain free. An occasional sting/burn randomly occurs. Continuing 2x per Flomax. 

I have no way of knowing how all this relates to my CK treatment - except to believe it is somehow connected. Meds and their side-effects, the rash and it's place in the mix is an unknown. All I know is that relief has come through time and meds - one or the other - or both.

All of this has had it's affect on me, but to this point I remain confident that CyberKnife remains atop the list of options that are available to those in the club.

I see my RO in March for my next scheduled appointment. 

CC

(footnote: there is a fellow on the Accuray site that is about 3 years out from CK, and he had very similar issues to mine recently. 

Post CK Issue?

The only problem I had post-CK was the irregular PSA pattern which ultimately resolved itself.

I have ALWAYS had some frequency and urgency problems.  Had them before CK (actually that was the reason I was tested for PCa originally) and still have them post-CK.  However, I've never had any pain/burning sensation associated with it. 

I have been on Flomax (as well as daily dose 5mg Cialis and Oxybutynin, which are supposed ot help w/the problem too) for years but sometimes still have to "go" right away or more often than one might think, which is why I always carry a pee bottle with me in my car. 

At this point, I don't know whether this has anything to do w/my CK treatment or just my age (65) but it's not that big of a problem and I haven't mentioned it to my RO or my PCP since I was treated.  Will only do that if it gets significantly worse, since it has been manageable to date. 

 

 

CC52

Swingshiftworker said:

Post CK Issue?

The only problem I had post-CK was the irregular PSA pattern which ultimately resolved itself.

I have ALWAYS had some frequency and urgency problems.  Had them before CK (actually that was the reason I was tested for PCa originally) and still have them post-CK.  However, I've never had any pain/burning sensation associated with it. 

I have been on Flomax (as well as daily dose 5mg Cialis and Oxybutynin, which are supposed ot help w/the problem too) for years but sometimes still have to "go" right away or more often than one might think, which is why I always carry a pee bottle with me in my car. 

At this point, I don't know whether this has anything to do w/my CK treatment or just my age (65) but it's not that big of a problem and I haven't mentioned it to my RO or my PCP since I was treated.  Will only do that if it gets significantly worse, since it has been manageable to date. 

 

 

SSW - 
The burning was mostly

SSW - 

The burning was mostly with urination, but a very sharp and painful stinging sensation at the head of my penis would hit me on occasion. It would definitely get my attention.

I haven't had any problems with urgency, only frequency. Every two hours or so, which for me is more than prior to CK. My main problem related to urgency has been on the other "end", and so far no accidents.

If things were to remain as they have been over the past couple of weeks, while not they way they were pre-CK, would be acceptable for me. Like pain thresholds, we all have unique personal limits as to what we consider tolerable. In spite of these recent setbacks, I'll remain optimistic about continued improvement overall. Unlike your experience, my PSA levels have declined steadily since completing my treatments, and I'm most pleased about that trend to date. Still prepared for a bump though.

 

 

 

 

 

Swingshiftworker

CC52 said:

SSW - 
The burning was mostly

SSW - 

The burning was mostly with urination, but a very sharp and painful stinging sensation at the head of my penis would hit me on occasion. It would definitely get my attention.

I haven't had any problems with urgency, only frequency. Every two hours or so, which for me is more than prior to CK. My main problem related to urgency has been on the other "end", and so far no accidents.

If things were to remain as they have been over the past couple of weeks, while not they way they were pre-CK, would be acceptable for me. Like pain thresholds, we all have unique personal limits as to what we consider tolerable. In spite of these recent setbacks, I'll remain optimistic about continued improvement overall. Unlike your experience, my PSA levels have declined steadily since completing my treatments, and I'm most pleased about that trend to date. Still prepared for a bump though.

 

 

 

 

 

Radiation Reaction?

CC:  The radiation reaction effects you describe generally happen much sooner (usually around 3-6 months) for people who experience them. 

This doesn't mean that the CK treatment isn't to blame for what you are experiencing; just that is seems to be out of synch when when one might normally experience them.  Usually at this stage 12-18 months out, it's the PSA bounce that you see, which doesn't seem to be happening to you yet. 

Whatever the case, I hope that your are able to sort out these problems w/the help of your physician as soon as possible.  Good luck and best wishes!

Billdonaldson

After radiation CK can you still get prostatitis ?

after the one year point has anyone ever had a bout with prostatitis? Just curious as the prostate is basically  scar tissue. 

Max Former Hodgkins Stage 3

Billdonaldson said:

After radiation CK can you still get prostatitis ?

after the one year point has anyone ever had a bout with prostatitis? Just curious as the prostate is basically  scar tissue. 

Never asked

Bill,

I have never heard this asked here before, and do not know the answer myself.  Share if you learn. I would suspect not, since as you noted, post-CK, the gland becomes a Kingsford briquette....

max

CC52

.

An internet search came up with this: https://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html.

From the link:

Urinary problems: Radiation can irritate the bladder and lead to a condition called radiation cystitis. You might need to urinate more often, have a burning sensation while you urinate, and/or find blood in your urine. Urinary problems usually improve over time, but in some men they never go away.                                           

Some men develop urinary incontinence after treatment, which means they can’t control their urine or have leakage or dribbling. As described in the surgery section, there are different levels and types of incontinence. Overall, this side effect occurs less often than after surgery. The risk is low at first, but it goes up each year for several years after treatment.                                                                                                                               

Rarely, the tube that carries urine from the bladder out of the body (the urethra) may become very narrow or even close off, which is known as a urethral stricture. This might require further treatment to open it up again.

I've had some problems with urination in the 3.5 years since my treatment, but nothing ever dx'd as protatitus.