I am new to this chat. I am 73 and I have Gleason nine. Localized in the prostate. No lymph node involvement. I began Lupron and Zytiga with prednisone 10 mg in November 2018 .I switched to Yonsa and 8 mg methylprednisolone so I would not have to worry about food. Currently I am 10 months of 18 of planned hormone suppression. I am losing muscle strength despite exercise and am considering continuing my monthly Lupron injections but stopping the Yonsa feeling either the steroids or med is the cause of my increasing weakness which has made even walking up one flight of stairs challenging. .In March i began and completed external beam radiation and had Brachytherapy with 2 days of rods in the prostate. My highest PSA was 5.6. My current PSA since tatment has been zero and my testosterone is currently unrecordable.
Gleason 9 localized to the prostate c... - Advanced Prostate...
Gleason 9 localized to the prostate cancer
Sounds good. Who did the HDR brachytherapy?
Dr. Marc Botnick with City of Hope in Los Angeles
Good treatment. Bets of luck!
It sounds like you are on a good track to significant healing.
You might be a candidate for an ADT holiday (after 18 months) and perhaps, you might have conquered the beast.
I was G9 at Dx and had a worse prognosis than yours.
That was 2.5 yrs ago.
Today, I'm on an ADT holiday while hoping that it stays that way for a long time.
My PSA is undetectable while my 'T' is within a lower, normal range.
Keep up the good fight !
Hi RonnyBaby Your situation and my husbands (age 70) are very similar. He was diagnosed Feb 2017 PSA 275, Gleason 9, spread to several lymph nodes, including the para aorta. He started short term casodex, then Eligard. Radiation at Juravinski in Hamilton Ontario. Within three months his PSA dropped to .008 and has stayed there. He only has an RO who decided to stop Eligard without providing a reason other than SOC. His last 6 month shot was Nov 2018. He has been off the ADT for five months, still experiencing hot flashes, muscle weakness, severe pain in hips and back from spinal stenosis, but still chugging along. Planning to try some THC/cbd for pain.
I see that you are still undetectable. Congratulations! A couple of questions. How often do you check PSA and testosterone levels? If your psa starts to rise, have you considered what therapies you will try? Have you ever been told that there may be a cure? Have you been told that you are likely to become castrate resistant? What ratio thc to cbd would you recommend for pain. If we ask the RO any questions, he says he has no time to discuss "what ifs" in clinical hours.
All the best to you!
Catherine
Thanks for the response.
I check my PSA and 'T' every 3 months.
I also plan to do a complete blood panel (was every 3 months until recently) twice a year.
My GP has partnered with me to help monitor my condition(s). You need to establish 'baselines' to see how your body is responding to treatment(s).
Note that when I got my Dx, my node positive state was described to me as 'several hot spots' were discovered during the scanning process.
The scans included soft tissue (contrasting) and bone scans / MRI etc ....
Seeing as I was too far advanced, Radiation and ADT was considered the appropriate means to combat the progression of the disease.
The word 'cure' was briefly mentioned with a disclaimer. I needed to be '5 years clear' , post treatment, but the nature of my advanced, aggressive T3B made me very high risk of getting worse.
I think it is important to note that each individuals case is different and although there may be similarities, there are several factors that make predicting outcomes very difficult.
In terms of what might be (castrate resistant etc ) I arbitrarily quit ADT after 16 months because the side effects were overwhelming for me. In retrospect, I am VERY fortunate that my decision to stop treatment(s) has not yet backfired.
I deliberately wanted my 'T' levels to return to normal because QOL issues have and will drive all my decisions moving forward. (Note that I am 67 yrs old) In addition, the hot flashes made my life miserable.
In terms of ADT withdrawal, I'm not done yet, although my strength has recovered significantly and my muscle mass / body weight has returned to normal.
My 'T' is within (lower) normal ranges, while my PSA slowly creeps up (as expected), but remains undetectable (@ 0.08 a few weeks ago).
My last Lupron shot was in July of 2018.
About THC / CBD ratios and pain management ....
I will again make a point of investigating 'Low Dose Naltrexone". This 'combo' therapy has worked well / complemented my medical cannabis.
As a legal grower, I've discovered a few things that are worthy of note.
From a legal and moral point of view, I avoid THC during the daytime or anytime when I know I will need to drive.
A small amount of THC is OK, provided it is countered with an equal or greater amount of CBD. In fact, CBD is an antidote for THC, meaning that it moderates its effect.
I take about 2 ml of CBD daily (approx 25 mg/ml strength, in an oil tincture form, which I make myself.
The THC that I consume typically occurs after 9 PM, to get ready for bedtime, to combat my severe form of insomnia.
At this point in the evening, I will also take more CBD (indica based genetics). The THC level is again around 25 mg/ml, but I will take 2 ml of THC, about 1.5 hours apart.
I awake in the morning without any form of hangover - I'm ready to go, for the most part.
Also, I mentioned the need to 'rotate' the tinctures with a different genetic mix, to avoid developing a resistance to the oils. The genetics should be similar (indicas). It is the terpines / varied cannabanoids and entourage effects that need to be factored in the mix to keep up the pain management and help with the sleep cycles.
You accumulate a small percentage of 'saturation' after a few weeks of consumption that helps maintain the pain limiting effects.
And last, but not least. I might take some THC earlier in the day if I am having a 'bad pain day', knowing that I won't be driving.
People that see me during the day would have no idea that I am a medical cannabis consumer, because I'm not impaired, while functioning well. Just ask my doctors who are part of my medical team. I have yet to see any push-back, in terms of my ability to function like other folks, while 'being under the influence.
I also know that in terms of the legality of what I do and take, I'm under the levels where I would be charged with impaired driving.
Hope this helps clarify my approach to PCa.
Thanks so much for this informative reply. My husbands RO sees no reason to check every three months and suggested he only check before he sees him in nine months. I wanted to ask him what HE would do if he had stage 4 PC. I like your plan of action, every three months with blood work every six. We will be discussing this with the family doctor.
Dave has been Eligard free for five months with hot flashes staying pretty much the same. (Last six month shot, Nov 2018)
We will look into the cannabis for pain. We have a store in our town and have purchased some CBD oil plus 15/15 THC to CBD. (indica) We have no idea about dosing, so will have a look at your plan.
I totally agree with focusing on Quality of Life as long as possible. Dave has had so many changes after the radiation and hormone therapy, I don't think he may ever get his "original self" back again. The effects of treatment have been quite debillitating and his QL has certainly suffered. I know we should be glad with the .008 (and we are!) but it is hard to see how much it has changed him.
All the best to you!
Catherine
About cannabis dosing .....
Typically, when you get store bought product, you'll get a plastic syringe measured off in 1 1/10 of a milliliter (ml). It might also be measured in 'drops' which will be part of the bottle design. 1 drop = 1/10 ml.
When it comes to CBD, you won't feel a buzz, so it is harder to know how much to take. Experience has shown me that a 'maintenance' dose of CBD is 20 - 30 mg / day or 1 - 1.5 ml / day.
When I mention CBD or THC, I am talking about tinctures with ratios around 20 or 25 - 1. If you are using 1:1 ratios, then you need to factor how the THC is affecting you because that is what will affect you 'legally' and giving a 'stoned effect' from mildly affected to 'couch locked'. .
When it comes to THC, see below about gradual dosing and bio-feedback.
You should start the initial dosing at 1/10 ml or 1 drop to check for adverse reactions. Also note that by consuming an oil, you are NOT smoking it, so you get a delayed reaction ranging from 30 minutes to an hour. After the delay, you will begin to feel the medicine or relief as the effect climbs and eventually peaks, then drops off. The whole cycle, depending on dose, could have a duration of 6 - 8 hrs or more.
Therefore, beginners should start SLOWLY and gradually increase the dosage until you find a comfort zone. I recall the instructions I got when I first started and they had you begin at .2 ml, increasing to .3 within 3 or 4 days. By the second week you might be at .5, working towards 1 mil. or whatever gives you relief.
It's a simple guideline, but it works for most.
Sounds a lot like my situation - right down to the timing. My PCa was diagnosed as G9 3Tb (multiple scans - no metastisis found) in November 2018. Localized to prostate with a "possible" small ECE. PSA 1.8.
Started Lupron on December 3rd. Started radiation treatments on 01/05/19 - 45 treatments, 2 patterns - general/prostate bed, then 20 "boost" directly at the prostate. 81 Gray, IG/IMRT with ARC.
Continuing on Lupron for 18 months minimum (my urologist wants 24).. PSA in April <0.1 - undetectable. PSA last week 0.1 - urologist and radiologist said that's "insignificant" and not to worry about it (since radiation vs surgery does leave prostate material in the body..) I'll be getting another blood-draw this Friday probably since I have an appointment with my medical oncologist later this month.
I'm really looking forward to getting a Lupron "holiday" - side effects are fairly awful as far as strength and endurance.
A quick look shows Zonsa having the same sort of side-effects as Lupron. It seems just a factor of how long your testosterone is suppressed how bad the side-effects are, not what you're using to suppress it. I have similar weakness - I can manage one flight of stairs a few times, but more than that - I start looking for an elevator.
Try keeping up with a 12 yr. old/almost teen on a shopping spree at the mall. You should have seen my face when I read the sign "Escalator under repair". I was really thinking they would find me in a corner of Forever 21, covered in spider webs, and a sign around my neck "Forever 69".
There are no good meds, but it's worth it if they work.Glad to hear you're doing well.
I do not think that a lack of testosterone is the main problem - being poisoned is a bigger problem. Those who choose the "snip-snip" solution basically go back to being sexually 10 years old but avoid the poison and thus the side effects too.
By "snip snip", I assume you mean orchiectomy.
I had the same diagnosis at age 75. I had proton plus 18 month adt (finished adt 1-1-19). Still getting flashes. Last PSA undetectable.
"increasing weakness which has made even walking up one flight of stairs challenging".
I feel your pain....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 10/06/2019 10:07 PM DST
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