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Posted 5/31/2018 1:12 AM (GMT 0)
It’s been awhile since I’ve posted. My husband was diagnosed in October, 2016. Had RP in December 2016 at MSK (Dr Eastham). Pathology showed one lymph node positive, but husband was adamant that he would not have further treatment until psa became detectable (and his dr. stated they don’t want to overtreat).
Well, that time has come. We met with Dr Susan Slovin at MSK and will be back to see her to come up with a plan early in July. Will be retesting psa. She mentioned radiation and hormone therapy. We are not shocked by this; knew it was coming. My husband feels that he was able to avoid ht for 16 months, since he would rather not endure the side effects until becoming detectable. I am scared to death, not knowing what the future holds. I know treatments will keep this at bay for awhile. It’s the life changing effect that this disease will have on our life that frightens me so much. And most people don’t get that the side effects from treatment can be debilitating. My husband is the strongest man I know. He will fight for us, for sure, but I hurt for him and I’m just praying that he can tolerate ht. We have such an awesome active life at 58 years old. I don’t want to give that up and never does he!

Thanks for listening......oh, I did have a question! We forgot to ask at meeting with MO. Generally, will he start ht before radiation or at the same time?
Posted 5/31/2018 1:31 AM (GMT 0)
The HT is often started a month or more before the radiation begins to help sensitize the cancer enabling the radiation to be more effective.
Posted 5/31/2018 1:38 AM (GMT 0)
What is his PSA now ? Yes, the ADT will start first, by a month or two..
Posted 5/31/2018 1:46 AM (GMT 0)
In this together... you need to read through the entire ADT and SRT journey thread this is all about what your husband will be going thru. After reading the experiences a bunch of us have gone through
you will see that yes it can be a little challenging but you will get through it just fine. If I can stress one thing if your husband is able to have him start exercising if he isn't already and as hard as he can the guys that are in shape have a lot easier time with the radiation. I lived at the hope lodge for 7 weeks and witnessed among many of the people there at the lodge that everyone who could Mayo would encourage people to exercise as much as they were able to. You will probably start ADT 2 months before radiation. Like I said you and your husband should both read the ADT and SRT thread it will give you good insight on what to expect. Wishing you the best and look forward to hearing about your progress as you proceed through treatment.

Larry
Posted 5/31/2018 2:49 AM (GMT 0)
What specifically are the side effects of SRT that have frightened him so much?
Posted 5/31/2018 7:36 AM (GMT 0)
Hello, ITT,

I just finished 8 weeks of SRT and my first 3 months of ADT. It’s fair to say I dragged myself to these treatments kicking and screaming. I dreaded the ADT especially.

The dual therapies have hardly affected my quality of life and my activity level at all. I’ve had no side effects from the radiation — no bowel or urinary troubles. From the ADH (Eligard) the worst SE has been hot flashes. They’re super annoying and sometimes wake me up in the middle of the night (what time am I posting this?), but they don’t keep me from functioning well at work or play. The first month on ADT I was quite moody and had some low-energy days — I made some dark posts on the ADT-SRT thread back in March — but it seems that once my mind/body adjusted to the new normal of near-zero testosterone, I’ve felt fine psychologically. I haven’t experienced “brain fog” (tho some might say my brain’s always been a bit foggy). I’m about to get my second 3-month injection and have no qualms about it.

I’ve definitely lost my libido. Oddly, that’s been kind of a relief. The slow recovery of potency after surgery had become a source of great obsessive frustration, and the loss of interest in sex has, at least for the time being, been liberating. I’m starting to take Viagra again because of the importance of maintaining blood flow, and am pleased to see my physical ability to achieve an erection is progressing, but I’m ok with the extended sex sabbatical. It hasn’t dampened my feelings for my wife, and we’re as affectionate and intimate as ever. We’re both focused on beating this disease or going down fighting.

Of course, this is just one man’s experience on SRT/ADT. But I think it’s within the range of typical responses, based on what my forum friends have been reporting from their treatment.

Best wishes to you and your husband.
Posted 5/31/2018 12:12 PM (GMT 0)
Thanks for all your replies! I will definitely read the adt and srt journey thread asap. His psa is now 0.31. He is not frightened by srt or adt (definitely nervous though). Its me who is scared but I will learn to get over it. Maybe I’m reading too much but I’m mostly worried about brain fog and depression. My husband is such an upbeat guy that it would really hurt to see him deal with that. Also on top of his recurrence, he is currently recovering from hip replacement surgery. Both surgeon and MO at MSKCC stated that regardless of psa status, he should definitely have surgery. He had bone on bone contact and was stopping him from being as active as he would normally be. Also, exercising was becoming difficult. So here we are, healing from hip surgery and then headed for srt. That is why I asked about the sequence of adt and srt. If he starts adt first then he will have more time to heal.
Saipan Paradise: thanks for your comforting post! I hope my husband does as well with it as you have!
Posted 5/31/2018 12:50 PM (GMT 0)
Skypilot56
Thanks for your reply. I can’t seem to find that adt and srt journey thread....
Posted 5/31/2018 1:19 PM (GMT 0)
Here's the thread about us guys dealing with ADT/radiation.

MD Anderson had me on Lupron July 31 and I think radiation began early November so my ADT (Lupron) started about three months before ART (radiation.)

I did not want to be on ADT since I understood the side effects but my radiation oncologist told me if I don't get on Lupron, no radiation. Obviously MDA feels very strongly about the benefit of ADT as a precursor to radiation therapy.

We all have side effects to one degree or another, for me I hated being on Lupron but I realized it was in my best long-term interest and I kept soldiering on.
Posted 5/31/2018 3:50 PM (GMT 0)
Hi InThisTogether;

Everyone is different in how they respond to ADT. I started ADT in December and SRT in early March - a little later than is typical due to some scheduling issues. My RO ideally wants two months on ADT before they start SRT.

Like Saipan Paradise I have hot flashes, also some brain fog - my business partners won't let me forget that I now forget stuff. I also have neuropathy in my hands and feet - feels like tight rubber bands are around my hands and feet just behind the knuckles. Hot flashes are common, and supposed to get better with time - I've only been on Lupron for 6 months - so we'll see. The neuropathy is somewhat unusual, but not unheard of.

Overall, everything has been more annoying than life changing. I'm still working, and now that SRT is done, back to being a road warrior (Dallas last week, Chicago this week and LA next week). As SP said, the complete lack of libido is a shift in my thinking, but really hasn't changed the relationship with my wife - still as close as ever.

Best of luck, and check in with the ADT / SRT threads to let us know how you are doing.

Cheers!

Rob
Posted 5/31/2018 5:37 PM (GMT 0)

InThisTogether said...
If he starts ADT first then he will have more time to heal.

They begin ADT 2 months prior to the start of radiation in order to radio-sensitize the cancer. But in terms of healing, the lack of testosterone may slow muscle recovery somewhat.
Posted 6/1/2018 11:38 AM (GMT 0)
All I can say is that you guys are so inspiring! Thank you for your comments; it sure is comforting to know that so many of you have gone through treatments, and although it may not be a walk in the park, you all seem to have positive attitudes! Good luck to you all and I will keep posting as his treatments begin.
Posted 6/2/2018 4:50 AM (GMT 0)
I had a consultation with Dr Susan Slovin in 2017, but I decided to go with SBRT/CyberKnife at NYU/Winthrop.

Similar positive outcomes, but only 5 radiation treatments in 5 days instead of 40 - 50 sessions.
Treatment completed end of June 2017

Since I was Gleason 9 I opted to add hormone deprivation therapy (HDT).
That was my decision.
Dr. Haas at NYU/Winthrop suggested 2 months before radiation and 6 months after.

The duration of the HDT was a big mistake for me.
Make sure you get a testosterone test before starting HDT.
That way you can see how recovery is happening.

After the 2nd Eligard 3 month treatment I started getting very tired very fast.
I would be able to walk 3 - 4 blocks and then had to rest every 100 feet or so.
No stamina for even mild exercise.

Most people do not have this problem. I did.


I should have stopped the HDT at that point, but took the 3rd treatment in the first week of Sept 2017.
That should have lasted through the 1st week of December.
My body should have started to recover early Dec. 2017.

Feb 2018 my testosterone level was at 13 ng/DL.
The formal medical term for that is "castration level". It is not as nice as it sounds.

April 2018 my testosterone level had started to recover: 104 ng/DL.
I still had no stamina.

It is now June 2018. I plan to get another testosterone test next week.
I am walking using a hiking stick now because I still get very tired very fast.
I may be starting to recover. But, very slowly.

Again, many men do not run into the stamina loss side effect.
I have 2 friends who were diagnosed with prostate cancer after it had spread. They are on HDT for life.
One of them is age 79 and playing tennis 3 - 4 times a week. No stamina problem.

If I were to do it again, I would probably do the 2 months before radiation treatment and then stop it.
Posted 6/2/2018 7:12 AM (GMT 0)
InThisTogether

Come join our ADT / SRT journey thread! ... he shouldn't worry ... the side effects aren't that bad.

smile

A supportive partner is the best reciepe for success btw, which seems like you are already down that path! ... if he gains a little weight, and is a little confused ... just shrug it off and chuckle about it... he'll be fine... it's just another part of the journey ... and plus, why worry? .. never helps, right? ... think positive. smile

Zzarth
Posted 6/11/2018 9:36 PM (GMT 0)

Hello, In This Together!

It sounds like you are getting a treatment plan mapped out, step by step.

Form a tight, trusted bond with your husband's medical team. Their insight and expertise is essential!

Even though it's hard to think about treatments and side effects, we all need to do what's best, when the time is right, in terms of starting new treatments.

There's something powerful that happens, too, once treatments begin --- it's at that point that we all begin to feel like we are actively DOING SOMETHING.

Going into treatments, it's important to learn as much as you can, in advance --- so you can take a proactive approach and find ways to mitigate potential side effects.

This website is a tremendous resource for that --- here you will find numerous threads on whatever treatment approach might be in your future.

Continue to post, when you get your treatment plan all mapped out ... and remember all the valuable first-hand insight that you can glean here on whatever treatments might be in your future.

And remember, more than anything else --- we ARE in this TOGETHER !

Handshake, support, encouragement ~
CYCLONE ~ Iowa State University
Posted 6/12/2018 5:39 PM (GMT 0)
Inthis,
Had my 3-month Lupron shot on April 30 and will start radiation July 2 (two months later). Have occasional night hot flashes, not every night, and don’t seem to have Lupron fog except that at one month in I gave up 3-times a week tennis because I didn’t care about hitting the ball coming to me.
Now, though, six weeks in, I played 9 holes of decent golf with a cart yesterday afternoon and walked 9 more holes of also decent golf this morning. Will try tennis again too.

So stick with exercising, moving, and it may be that our systems get used to the absence of testosterone.

Most important of all is your partnership, and next is the information and support on this site. Hope you’ve found the ADT/SRT thread by now —I know it helped me anticipate.

Best to you both!
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