Post-RadioTherapy Secondary Effects.

[doc1947g]

I am 73 y.o. with G(4+3=7) Grade 3 on 6 cores out off 12 but on a special Scan pre-RT they found multiple tumors on both side., Unfavourable Intermediate Risk. March 2020.

I was treated with VMAT-RT Hypofracionnated 3 Gy X 20 Fx for a total of 60 Gy on the whole pelvic area (139.57cc but prostate = 45.83 cc only). June 2020.

I also had ADT Lupron Depot 22.5 mg/12 weeks X 2. May 2020 to Nov 2020.

I had strong Secondary Effects from the ADT.

But I have started to have burning sensations each time that I urinate.

I saw my urologist this morning and he did a cystoscopy. And another one in March 3rd 2021. He found multiple Uretral strictures.

Anybody had that experience?

[Tall_Allen]

No, do NOT under any circumstances have a cystoscopy now. The burning is just urethral inflammation - take some naproxen and pyridium (over the counter) and it will diminish over time. A cysto puts pressure on very sensitive, friable tissues that can easily tear. It will cause problems.

[doc1947g in reply to Tall_Allen]

I did not ask for it but as I could understand, he will not use the rigid one but the flexible one with a solution of saline to slowly open the way.

Right now I have burning sensation but my flow is very good, and I had urine analysists and culture and there is no signt of infection.

The problem is that I have these burning sensations since 2 months and they stay the same.

I am still on ADT Rx.

[Tall_Allen in reply to doc1947g]

My RO says that all patients who had permanent damage, had a cysto. He always treats conservatively first. Try the pyridium first.

[doc1947g in reply to Tall_Allen]

I just talked with my Urologist and he told me that pyridium could be dangerous for me because I have a Chronic Renal Insufficency and the pyridium will make it worse.

My pharmacist told me the same thing.

[doc1947g in reply to Tall_Allen]

You see, Allen, I have a few other health problems which made all my treatments harder on me.

This morning, I almost choke because I have to wear a PM2.5 filtering mask because my imunitary system is DOWN but it is very hard to breath trough it with my Emphysema Gold 3. I had to use my Ventolin Inhaler.

So Lymphoma, Renal Insuffisancy, Emphysema and more...

[Tall_Allen in reply to doc1947g]

There is only one thing that causes burning while peeing after radiation, and that is inflammation of the urethra. You don't need a dangerous cystoscopy to tell you that. The question is - what to do about it? I suggest you call/email your RO. I don't know if you can take an NSAID with your renal insufficiency. He may have a suggestion.

[doc1947g in reply to Tall_Allen]

How long does the urethra inflamation last?

It is over 2 months. At the beginning, I was not worried but after a while I told my RO about it.

He ordered urine analysies which came back negative. That is when he called the Urologist to check me out.

For a Chronic Acute Lumbalgia following a discoidectomy I am on Fentanyl Patches 87 ug/hr. So I cannot say that it hurt, it just a burning sensation.

And yes, I cannot take NSAID and Tylenol does nothing.

I am already treated for Hypersensitive bladder so I am on Toviaz 8 mg and Flomax 0.8 mg.

And I am not interressed in a suprapubic catheter.

I worked for over 40 years as an Anaesthesia-Assistant, so I have seen a lot of different procedures.

[Tall_Allen in reply to doc1947g]

Clearly, you are sensitive to the inflammatory effects of the radiation. I cannot say how long it will last. For me, it lasted only 2 weeks. Maybe there is a topical anti-inflammatory that can be injected into the urethra? I really don't know.

[doc1947g in reply to Tall_Allen]

Yes and you got SEBRT, if I remember well and you were a low Gleason,

For me it is a different story, more complex and I am paying for it.

[Tall_Allen in reply to doc1947g]

The Gleason score doesn't change the side effects. It's true that your whole pelvic radiation increases the risk of bowel side effects. I think you are just more sensitive to the urinary effects.

[doc1947g in reply to Tall_Allen]

I agreed with you but I dir received more radiation than you.

[Tall_Allen in reply to doc1947g]

The biologically equivalent dose I had was actually more than yours. If your prostate received 60 Gy in 20 fractions, my biologically equivalent dose was 40% higher than yours.

[doc1947g in reply to Tall_Allen]

The 60 Gy VMAT-RT Hypofractioonnated is equivalent to 78 Gy Conventionnal.

You had your RT about 10 years ago ?

[doc1947g in reply to doc1947g]

The SBRT is usually 5 treatments over 2 weeks at 8 or 9 Gy per day.

Am I correct ?

[Tall_Allen in reply to doc1947g]

Yes. What I had is equivalent to 115 Gy if given in 1.8 Gy per fraction - much higher dose.

[doc1947g in reply to Tall_Allen]

With my cancer the SBRT was not for me. Spead in the two lobes and too close to the capsule with a perineural Invasion.

So the best my RO could do was VMAT-RT + ADT.

[Tall_Allen in reply to doc1947g]

My SBRT was delivered by VMAT.

[doc1947g in reply to Tall_Allen]

So you got 5 treatments?

[doc1947g in reply to doc1947g]

Was it SBRT or CyberKnife ?

[Tall_Allen in reply to doc1947g]

Yes. On Varian Truebeam with RapidArc.

[doc1947g in reply to Tall_Allen]

So what you got on another name is VMAT-RT Hyperfractionnated with 8Gy X 5 Fx.

[Tall_Allen in reply to doc1947g]

No. What I had Stereotactic Body Radiation Therapy (SBRT) - it is ultrahypofractionated. While you probably had cone-beam CT tracking at the beginning of each session, I had it continually throughout each session. That kind of precision is necessary when you are delivering 8 Gy per session instead of just 3 Gy. The heightened degree of image guidance is necessary because even a small "miss" could be quite toxic and underdeliver the curative dose to the prostate.

[doc1947g in reply to Tall_Allen]

Did you had seeds marker implants?

[doc1947g in reply to doc1947g]

With the pandemia I was expecting to have a long waiting for my cystoscopy but I have it for Nov. 16th 2020. With a flexible scope.

[Tall_Allen in reply to doc1947g]

That's a very bad idea. They all have flexible scopes.

[Tall_Allen in reply to doc1947g]

Yes- I have 3 gold fiducials.

[doc1947g in reply to Tall_Allen]

So now you have a very expensive prostate.

[Tall_Allen in reply to doc1947g]

LOL. I wear all my jewelry on the inside. My brain wiring and implants are platinum/iridium and my crowns are gold. I'm worth a fortune if I were cremated.

[SPEEDYX in reply to Tall_Allen]

I think we find the Bionic Man again!!!

[Tall_Allen in reply to SPEEDYX]

Tall Allen is a cyborg.

[doc1947g in reply to Tall_Allen]

How old is the cyborg?

[Tall_Allen in reply to doc1947g]

I'm 67, but my implants are only 3 years old. I plan to have all my parts replaced eventually.

[doc1947g in reply to Tall_Allen]

So you got your PCa at 53 ?

That is young for that type of cancer.

[Tall_Allen in reply to doc1947g]

57 - 10 years ago.

[doc1947g in reply to Tall_Allen]

Mistake in my math. But still under 60.

[doc1947g in reply to Tall_Allen]

And you are very lucky. My brother in law got an RP in 2009 than a Salvage RT in 2016 and another rescidive in 2019, More RT and ADT for the next 24-36 months.

[SPEEDYX in reply to Tall_Allen]

That explains everything!!!...and here I thought you were a Vulcan.

[doc1947g in reply to SPEEDYX]

From his picture, he does not seem to have pointed ears.

[SPEEDYX in reply to doc1947g]

😂.....its an old picture...they start to become pointed after 60 Vulcan years

[doc1947g in reply to SPEEDYX]

It is amazing how our conversation went from very serious to very funny.

It is a good medication for the morale.

PCa is so annoying that a good laugh help.

[SPEEDYX in reply to doc1947g]

Absolutely keeps those endorphins going and it keeps my mind focus and sharp...My humor tends to be on dry side not for everyone...Fight on...Doc Holliday ...My Darling Clementine....1947!!!!

[doc1947g in reply to SPEEDYX]

Dry or wet, humor is better than tumor.

[SPEEDYX in reply to doc1947g]

That's Is Sharp!!!😂

[doc1947g in reply to SPEEDYX]

Yes I have an elctric sharpener.

[SPEEDYX in reply to doc1947g]

Now that's getting to the point!!!!

[doc1947g in reply to SPEEDYX]

If you were French, I would say that you are "pointu".

Meaning that you are sharp.

[SPEEDYX in reply to doc1947g]

Funny I took French for 4 years...just remember how to order in French restaurant!!

[doc1947g in reply to SPEEDYX]

French is my mother tongue as in language.

I am 73 y.o. and really learned to properly speak in English in my early 20s then I worked 40 years in an English hospital as an anaesthesia assistant so now I consider myself as a full bilingual.

BTW books are so much cheaper in English and I am an avid reader. A book every 2-3 days.

I am confined to my bed following a work accident followed by a discoidectomy that was NOT succesfull since 1994. So I spend my time reading on my Kindle and go out for a 5 minutes walk that exhaust me due to my Pulmonary Emphesyma Stage 3, Chronic Renal Insufficancy Grade 3 and now a PCa G(4+3=7) Grade 3.

I am really unlucky with tha number but it could have been 4 so I keep quiet.

[SPEEDYX in reply to doc1947g]

Well I admire your strength thru this battle coupled with your other issues....My father was an avid reader...learned so much and he learned English by reading comic books as a kid.

[SPEEDYX in reply to SPEEDYX]

I will specifically pray for you too!!!

[doc1947g in reply to SPEEDYX]

Me too and watching Walt Disney on Sunday on the B&W TV and a lot of Sci-Fiction show which is what I read too. I actually in the middle of a 171 books serie of Science-Fiction story.

My email address is the name of a German Sci-Fictions series that they publish every weeks that started in 1961 and it is still published. There are 3089 books of about 60 pages each as of today. They come out every Friday.

It is Perry Rhodan. On one of their sites you can read a resume of each books by using Google Translator which is what I do weekly.

[SPEEDYX in reply to doc1947g]

Wow!!!..Quite impressive...I like Sci Fi...hence Star trek....I remember good old Walt on Sunday's

[doc1947g in reply to SPEEDYX]

BTW how old are you?

[SPEEDYX in reply to doc1947g]

65...iam film and music enthusiast I have over 4000 films from silent to present and over 3000 albums all types from Ragtime to jazz to rock!

[doc1947g in reply to SPEEDYX]

And when were you diagnosted?

[doc1947g in reply to SPEEDYX]

I know you are American and I figured that either you are very rich or you have good insurrances.

Her in Quebec we have a medicare system that cover almost everything except for medication where you have to pay up to a limit depending of your earning. Like me I have to pay up to $96.00 every month so anything that alltogether cost more, I have over 12 different medications that would cost me over $2,000.00 per month but I spend just $96.00. When I was on ADT, then it was another $3,000.00 3times since April 2020.

But I think it is a different story for you.

[SPEEDYX in reply to doc1947g]

Diagnosed January 2019...PSA 340 down to 13 now on lupron and zytiga...scans good so far..work full time...Insurance I hate with a passion...pay 2100 month for my wife and i... and just started medicare...keep both for now as Zytiga is 10Gs a month plus other cost for treatment...it is a complex issue here...when government runs things there is the good and the very bad...but it is what it is.

[doc1947g in reply to SPEEDYX]

I am VERY curious. What was your Gleason score and what type of RT you got?

I gave you all that info.

[SPEEDYX in reply to doc1947g]

Only treatment lupron zytiga...still have prostate no symptons and size was normal..biopsy was from lymph node they thought I had lymphoma

[doc1947g in reply to SPEEDYX]

So you did not get any RT.

I have a Lymphoma of the Marginal Zone in the bone marrow since July 2019.

Until 2017 I never really had any health problems. In 2017 I had a pleuresy (water in the lung envelope. I had a chest tube on the left side for 16 days. Then every thing went dow. Lymphoma July 2019. PCa in March 2020 and Emphysema in October 2020. My Renal Insufficency is from 2000 but I learned to live with it and treated it by drinking about 6 liters of water and ONE Cores Light per day.

[SPEEDYX in reply to doc1947g]

I have been very healthy. No RT...never any symptoms

[doc1947g in reply to SPEEDYX]

For my prostate, I never had any symptoms. In January 2020 when my PSA went from 6 to 13 in a month and a half, I was send directly to an urologist and he took 12 biopsies. 6 of them, all in the right lobe, were positive G(4+3-7) Grade 3 Unfavourable Intermediate Risk and when they did the special planning Scan they discovered many tumours on both sides and very close to the capsule and IntraNeural Invasion.

ADT screw-up on April 4th then redo on May 31st with VMAT-RT from June 8th to July 7th (20 Rx). ADT will finish on Nov. 16th 2020 and Secondary Effects for 6 to 12 months.

Do you know your Gleason Score from your biopsies and did you had MRI or CT-Scan?

[SPEEDYX in reply to doc1947g]

Had pet scans NM bone etc...no Gleason scores wasn't necessary

[doc1947g in reply to SPEEDYX]

With no GS how did they evaluated your cancer because they put you on ADT and for how long?

[SPEEDYX in reply to doc1947g]

Had in lymph nodes and bone metastases....treatment would not change....Adt for life

[doc1947g in reply to SPEEDYX]

Sorry I did not know. I hope the secondary effects from ADT are not too bad.

I was on Lupron Depot 22.5 mg/12 weeks X 2 and for a while it was very bad. Now I ave little boobs, heat waves, mood swings, etc...

[SPEEDYX in reply to doc1947g]

I fight them with work, exercise and prayer..so far I am good!!

[doc1947g in reply to SPEEDYX]

Are you taking Predisone with your Zytiga?

[SPEEDYX in reply to doc1947g]

5mg

[doc1947g in reply to SPEEDYX]

Me the big problem is that I am VERY limited to move my body.

I am 6 feet 1 inch and weigh about 160 pounds, so I do not have obesity problem but with my back problem and now with emphysema, I am stock to my bed. Walk with a walker for 5 minutes and use Ventolin to get my breath back. Then I go out only for my doctors R/V and for blood tests/

[SPEEDYX in reply to doc1947g]

🙏

[doc1947g in reply to SPEEDYX]

I lost my believe of a Superior Being when I was in the army. I could not accept that God lets all those bad thing happen.

But I respect the one that do and even envy them.

[SPEEDYX in reply to doc1947g]

Remember the world is ruled by the enemy...we all have a free will that God gave us...God will hold our hand and guide us thru this battle of life into an eternal glory...I cant imagine the alternative...I been blessed in many ways and have been thru countless difficulties...but I know he will not forsake me... I have witness miracles and know that he exist and his love surpasses anything we can imagine...I know it is his will not mine in this life...I totally trust his ways...Bless You My Brother!!!

[doc1947g in reply to SPEEDYX]

I hope that the Lupron and the Zytiga will beat your metastasis so that you can live for a while. If your prostate is normal then where dit the metastasis come from?

[SPEEDYX in reply to doc1947g]

From the prostate must have been a very small tumor and cells escaped and went to bone and lymph nodes...Even the DRE results showed no sign.

[doc1947g in reply to SPEEDYX]

Yes but your PSA was very high, mine was sort of low but it doubled too fast (45 days) but DRE was normal. Half of the biopsies were cancer on the right.

But later found on both sides but, no metastasises.

[SPEEDYX in reply to doc1947g]

One of the mysteries of PC we all react different

[doc1947g in reply to SPEEDYX]

Aboout 2 weeks ago, I was diagnosed severe depression. My brain does not accept what had happened to me since 2019. Chronice Renal Insufficency Grade 3, Lymphoma of Marginal Zone in the bone marrow, Agressive Prostatic Cancer Grade 3 and now Severed Pulmonary Emphysema Grade Gold 3.

All of it in less than 18 months.

I am now on Sertraline 200mg/ID and being followed by a psychotherapist next week.

Cystoscopy next Monday and Flue Vaccin on November 28 2020.

[SPEEDYX in reply to doc1947g]

You are going thru so much...i feel for your situation....you are my prayer list!!!!!

[doc1947g in reply to SPEEDYX]

Thanks

[doc1947g in reply to SPEEDYX]

In Canada

At the recommended dose, the average cost per 28-day course of abiraterone is $3,173.

[doc1947g in reply to Tall_Allen]

I do not have any. Parents poor so denture at 14 y.o (cheaper than paying dentist many time). And I think the put some clips for my vasectomy over 24 years ago.

That's all ! Folks!