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ADT and SRT Journey

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Posted 1/29/2018 9:03 PM (GMT 0)
Thanks all for the running account. I expect to follow shortly, and your posts help me anticipate what is to come.
Posted 1/30/2018 12:39 AM (GMT 0)
Today was my 30th treatment.

My doc has me slated for 39 ... I'm wondering if that is overly aggressive.

Plus, my insurance changes to a high deductible plan this wednesday, so I'll be paying out of pocket the full cost of the treatment ($1,800) until I hit my $6,000 deductible.

I'm wondering if goto Wednesday and complete my 32nd, if that will be enough...

I see AZ_guy is getting 34, How many sessions are the rest of you guys getting?

Zzarth
Posted 1/30/2018 1:26 AM (GMT 0)
Questions you might want to consider —
How much confidence do you have in the RO’s plan?
Is it a standard treatment for that facility or designed specifically for you?
How many Gy in your 39 vs. in AZ_guy’s 34?
Posted 1/30/2018 1:59 AM (GMT 0)
Regarding Lupron, the first month was not bad. The second month saw increasing fatigue. The third (current) month the fatigue has gotten worse and brain fog is increasing. Weekends are fine, since I can fit in a nap, but working full time+ during the week is not easy. People react differently to Lupron - it's becoming a real challenge for me.

Regarding SRT, I keeping seeing data suggesting 66 Gy is a common minimum dosage.
Posted 1/30/2018 3:49 AM (GMT 0)

Cary1963 said...
Regarding Lupron, ...working full time + during the week is not easy. People react differently to Lupron - it's becoming a real challenge for me.

Yep. It is an ongoing battle. I found taking a 30 minute nap at lunch got me through the afternoon pretty well. Even then, bedtime by 8:30pm wasn't uncommon as I couldn't keep my eyes open any more.

Today, well after Lupron, I'm back to normal. No fatigue problems (apart from being 60 years old that is).
Posted 1/30/2018 4:41 AM (GMT 0)
Zzarth, i had 37 treatments for a total 72 GY. From the guys here that's kinda an average i think. TA has mentioned a couple of times about how 72 is a lot better than 66. The difference with the proton beam is it's only 6mm wide same as a pencil lead so its a lot better and more precise, They will use it for brain cancer, lymph nodes, metastatic areas to relieve pain.

Larry
Posted 1/30/2018 2:40 PM (GMT 0)

Zzarth said...
Today was my 30th treatment. My doc has me slated for 39 ... I'm wondering if that is overly aggressive.

Plus, my insurance changes to a high deductible plan this wednesday, so I'll be paying out of pocket the full cost of the treatment ($1,800) until I hit my $6,000 deductible.

I'm wondering if goto Wednesday and complete my 32nd, if that will be enough... I see AZ_guy is getting 34, How many sessions are the rest of you guys getting?

I had 39 Tx for 70 Gy. I think typically it's 1.8 Gy per Tx... If some guys seem to be a bit over or under then it might be because of different targeting areas (LN boost or something like that).

We had a $6300 deductible when my wife was diagnosed with lymphoma last December... the final month of the plan year. Her oncologist said she was mere weeks from ending up in a wheelchair when we brought her in. In addition, we paid CASH for the two MRI's that diagnosed her, to avoid the delay of insurance approval.

Pay the deductible in any way you can. This isn't like deciding between new tires or tranny rebuild. The wrong decision now could affect you for the rest of your life.
Posted 1/30/2018 10:26 PM (GMT 0)
Waiting to hear how Saipan made out today? Has anybody ever heard of taking boron to combat osteoporosis?


Larry
Posted 1/30/2018 11:47 PM (GMT 0)

Skypilot56 said...
Waiting to hear how Saipan made out today....

Larry

He has a very busy week in Orlando, and probably will not have all his results in before he goes home. He will have lots to consider.
Posted 1/31/2018 12:30 AM (GMT 0)
Well, I had my 39th and final SRT this morning! I'm done with that part. I'll post more of what I had when I get my summary sheet in my 2 week followup appointment with RO. SE still not to bad. Up next PSA and Urology doc appointment March 14.
Stay strong!
Posted 1/31/2018 1:59 AM (GMT 0)
Good for you Noggin. Sending you strong thoughts.
Posted 1/31/2018 3:40 AM (GMT 0)
Congratulations Noggin! And here's to the next 30 yrs. of undetectable psa'!!

Larry
Posted 1/31/2018 11:00 AM (GMT 0)

Skypilot56 said...
Congratulations Noggin! And here's to the next 30 yrs. of undetectable psa'!!

Larry

Thanks Larry and Progressing!

Interesting thing is my Dad had PC in 1992 at age 72. He had radiation only and Lupron later in life. He died at age 94, 2 months away from 95. He was diabetic and his body just wore out. His doc said the PC probably didn't get him. I think he was a G6 or maybe G7. He did have PNI and lymphatic invasion.
He had a pretty good life. I'm planning on being around a lot longer too!
Stay strong my friends!
Noggin
Posted 1/31/2018 3:19 PM (GMT 0)
Congratulations Noggin - good for you!

Here's to 30+ years of undetectable PSA!


Rob
Posted 1/31/2018 3:59 PM (GMT 0)
Fine story Noggin!! Hope you best your father’s longevity.

How much longer on Lupron for you?
Posted 1/31/2018 4:16 PM (GMT 0)
Thanks Garyl

Not sure on the Lupron but I would imagine I'll be on it for a total of 12 months or 18. Will figure it out in March with my doc team..
Posted 1/31/2018 6:51 PM (GMT 0)
My doc recommened i go for 2 yrs total on lupron. Originally he said lupron was a option, now hes recommending 2yrs... he said there was some new study saying 2yrs was much more effective. Anyone know what trial he was referring to?

Zzarth
Posted 1/31/2018 7:07 PM (GMT 0)
My doc recommened i go for 2 yrs total on lupron. Originally he said lupron was a option, now hes recommending 2yrs... he said there was some new study saying 2yrs was much more effective. Anyone know what trial he was referring to?

Zzarth
Posted 1/31/2018 7:26 PM (GMT 0)
That's interesting Zzarth. My RO at Mayo recommended 6 months. I'd be interested to see that study.
Posted 1/31/2018 8:15 PM (GMT 0)
My HT was scheduled for 2 years until I saw my RO in November. She talked about a study out of Canada that shows 18 months is plenty. I don't know.....I'm banking on her being correct. I'm glad to be coming off the stuff though I'm still experiencing SE's . My energy level goes up and down depending on the day with hot flashes still every day and night.
As long as I can keep the edema under control (which I'm hoping is from the lymph nodes being treated) I think things are getting better. Will have my first post treatment PSA in 2 weeks.
Waiting and being patient is not easy for me ....I think I'm going to need to learn how to deal with that.


Battle on Brothers!!

The Artistic One - Mark
Posted 1/31/2018 9:37 PM (GMT 0)
The sudden shift in my RO's plan of care was a little concerning.

We originally discussed if I really needed HT for my risk profile.

He mentioned 6 month plan... then on the last week of SRT, he's thinking that most aggressive plan is to do a 2 year HT regiment.

I'm already getting 70.2 grays ... and I've been on HT now since October ... gained weight, feel like crap... not sure I understand the true PROs and CONs of the decision -- :/

I guess I'll go hunt the web for some trail info/study results. sad

Zzarth
Posted 1/31/2018 10:11 PM (GMT 0)
Zzarth......HT is tough...there's no doubt about it. I fully excepted the 2 yr plan and was more than ready to do that. I guess what I'm trying to say is I trust my RO. Picking my treatment team was not easy. But..I trust her opinion.....to a point.

I will say ...I'm going to University of Wash. to meet with a new MO that specializes strictly on PC. The topic of 2 years vs 18 months will be mentioned. At this point though I will look at this as a HT vacation and hope that I won't have to go back on it again.
I feel your concern about over treatment . Why would you go through more than you need.

This seems the path one with PC must go through....learning ...listening....having to make decisions about treatment...etc...etc..etc......
Try not to get too twisted up about it ....right?...........sure....
Thanks for your input to HW.
Mark
Posted 2/1/2018 3:10 AM (GMT 0)
Zzarth - I asked about the Canadian study of 18 versus 24. The doctors at the Mayo Clinic here in Rochester don't put much stock in it. They had lots of reasons and if i remember correctly TA kinda guestion it also. What my team told me is a minimum of 2 yrs if i wanted to try for a cure as small as chance it is with my path and coming out of surgery detectable but that there is a good possibility i could be on it the rest of my life or until it doesn't work anymore? I'm kinda waiting to hear what Saipan found out.

Larry
Posted 2/1/2018 5:02 AM (GMT 0)
Good evening, gentlemen. Just a quick question for those of you who had an undetectable PSA after an RP that became detectable at some point down the road: At what PSA level did you and your team decide it was time to start SRT?

I know that other variables such as post-surgery Gleason, pathology, and PSADT can factor into the decision. I'm just trying to get a general sense of how wide that decision-making threshold is.

Thanks!
Posted 2/1/2018 6:15 AM (GMT 0)

Skypilot56 said...
Zzarth - I asked about the Canadian study of 18 versus 24. The doctors at the Mayo Clinic here in Rochester don't put much stock in it. They had lots of reasons and if i remember correctly TA kinda question it also. What my team told me is a minimum of 2 yrs if i wanted to try for a cure as small as chance it is with my path and coming out of surgery detectable...

I assume we are talking about this study

I'm not sure if I classify as HIGH risk disease or not.

Part of me thinks that of course, people who use HT for longer periods are going to have a better 5yr survival rate.

I did some more poking around our lovely forum, and wanted to point out a few links if any of you guys are in the same boat I am with ADT timelines:

(1) a few weeks ago TA linked this report on when ADT can be safely avoided which is a great read.

(2) A good description of the inner-monologue of cancer cells by PeterDisAbelard. smile

Oh decisions, decisions.... smile

Zzarth

Post Edited (Zzarth) : 2/1/2018 12:16:41 AM (GMT-7)

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