New to this: travel during ADT & post EBRT?

[conchjoe]

New to this group and the Dx took me by complete surprise. I'm 76 and in excellent health - or so I thought! - and now this happens.

PSA between 7 and 8 over the past year, wait and see. April PSA was 7.4 and DRE indicated a mass. MRI, biopsy followed, showing Gleason 4=3=7, Stage IIC. Did another PSA last week it was over 10! I'm having a PSMA/PET done end of August.

Saw an oncologist and he explained normal course of treatment: start ADT, wait 2 months, do EBRT for appx 28 sessions. Continue on ADT for another few months, total 6 months. I go back to him early September to discuss PSMA/PET results and start whatever it is I need to do.

Questions:

My wife and I are avid travelers, and we were starting to make comprehensive plans, until this came up. I'm wondering how soon after RT I can travel. Maybe I'm too optimistic, but I anticipated being done with EBRT end of November, and thus, I can travel in December. Is this being overly optimistic?

I know I will be fatigued, but I was planning on using a wheelchair if I have to traipse through the airport. I'll keep activity level low on an extended cruise, where I can use the gym to keep in shape. Will being on an extended cruise of 30, 40 days be too long, inasmuch as I will have to go back to the doctors for foll-ups and frequent lab tests?

Post RT and still on ADT, how common and to what defgree debilitating are the side effects?

Maybe I'm jumping the gun on this and deluding myself that things will go back to normal, but it's the travel plans that are giving me hope.

Thanks to all.

[Tall_Allen]

I had no side effects that would have inhibited travel at all. Why would you need a wheelchair? If you exercise heavily, it will lessen any fatigue.

[Alturia]

I finished 32 sessions of radiation in early January 2023 and traveled to France in early 2023 and am returning from a trip to Norway today. Some fatique probably from ADT and abi but just walk a bit slower.

[conchjoe]

Really encouraging replies. I have been reading on various forums and listening to medical professionals, and it has been depressing: seeing a bleak future of Depends and Immodium, and fatigued to the point of complete exhaustion.

[User14952 in reply to conchjoe]

Must be crazy stuff out there in other forums. My husband has been working full time the entire time he has been on ADT and through all radiation sessions (doing the third now). He got up at 5am, drove to radiation, went to work, came home and did it all over again. All while on ADT.

The fatigue is real, but you have to work out daily and it helps. If he had curled into a ball and let the fatigue take him, then yeah, he probably won’t be up for any long vacations! As it is though, we are planning a month in France in the spring.

[maley2711 in reply to conchjoe]

Incontinence NOT a major side effect of RT......more a problem with surgery!!

[Hidden]

Get a CBC with white blood cell differential before your trips. See if you can safely be around people. (Petri dish called a cruise ship)

Abiraterone, along with pelvic radiation will kill off lymphocytes.

[babychi]

G8/9 here dx 2017. Nothing has stopped buddy travelling. 39 EBRT and 96 weeks of Zoladex. We know we may not have 20 years but not missing out on anything. Eat like Dr Michael Greger advocates. No crap, no booze, no carcinogens. Have a ball! Fresh coconut juice and lime soda tastes like a margarita!💪💜

[Bandit99 in reply to babychi]

This is encouraging. My wife and I are travellers and we made many trips during the seven years after my Dx. I had started treatments a few days after a half marathon in two hours flat at the age of 63. ADT including enzalutamide plus docetaxal x6. PSA undetectable for those seven years. Can't travel now as am back on docetaxal (x10) until November. Effects of radiation to the hip and prostate in April are subsiding but a catheter remains. Planning to travel again a couple of months after chemo. Will have to be in a wheelchair because my hip is pooched but I see no problems and will be able to bypass long queues. Yippee!

[babychi in reply to Bandit99]

Yep! Yippee is right on!! We gotta do what we need to do to travel!! I have four titanium joints and I love my walking stick! Gets me thru the FAST lanes! Enjoy buddy!😆✈️💜

[Hidden in reply to Bandit99]

Bandit99, will you be taking your own wheelchair with you or are you referring to the airport provided one? Reason I ask is we’re planning to fly to SoCal in September and my hubs wants to check in his wheelchair chair to use while there but I’ve read that they often get lost or damaged. We’re planning to remove all removable parts and pack them in checked in luggage then wrap the chair in shrink wrap before handing it over to Alaska Air. Have you traveled with a wheelchair before? Any thoughts or recommendations?

[conchjoe in reply to Hidden]

Not Bandit99 replying, but my wife has already done research as we would be flying 12+ hours, then cruising. Seems getting a wheelchair at the airport (if fatigued) is the plan, then, when arriving at destination, have a wheelchair already rented and waiting on the other end. Again, if needed. There's actually a company that does this within US at hundreds of cities and at international cruise ports, you can choose a manual or electric. It's called scootaround.com

[Hidden in reply to conchjoe]

Our flight is short with no stops and we’re renting a car when we arrive in SoCal. We requested an airport wheelchair then had planned to check in his own wheelchair to have while we visit family and friends. He’s afraid if he rents a wheelchair he’ll get stuck with an institutional style, heavy one. Thanks for the website info, I’ll look to see what options are available 👍🏽

[Stoneartist]

I dont see any problems with continuing life as normal. You should assume that you have minimal side effects untill the opposite is proven. Enjoy life (easy to do with fatigue as well).

[London441]

How much do you exercise and what kind?

[Condor77]

I had a similar situation. I am 69 and had 28 sessions of IMRT and started ADT in January. I had a long scheduled one month trip out of the country and was worried about muscle loss after watching some videos about muscle loss on ADT. At the gym I go to they have a machine called InBody which will tell you how much muscle you have on all parts of the body and total muscle mass. It has an app which allows you to track all readings and keep a history of how muscle mass is changing. I took an InBody reading before I left and when I came back I had not lost any muscle mass.

One thing that I did was bring resistance bands for exercise. The first hotel we got to had advertised an exercise room on the internet. When I got there it turned out the exercise room consisted of 2 treadmills, 4 sets of dumbbells and a mirror. I used my resistance bands for the resistance portion of my work out. This worked fine at the hotels with no gym as I would just exercise on the balcony or in the room. I like to watch the YouTube channel called Fit Gent to get ideas on how to use the bands. Once I got used to the resistance bands I kind of like them to exercise with as they are easy to use as compared to barbells and machines. There are some exercises that are difficult to do with RB like dead lift and squats but I also do some body weight exercises to help with those.

As far as general exercise recommendation, I would say try to do at least 3-4 days a week of resistance training about 45-60 minutes. Hit different muscle groups and take the last set to exhaustion with about 6-8 reps. I generally try and go every day when I can, I also do cardio and have recently started playing Pickleball which I find to be good for overall strength and coordination.

Am on Lupron and Erleada and having regular side effects, but nothing too terrible. I actually don’t feel bad at all. I have actually gained some strength on some lifts. The Oncologist said I was one of the better patients he had had as far as SE from the medicine, but I do the work. I am retired, 1-2 hours a day is not that big of a deal, the Pickleball is fun. Hope this helps.

[Hawk56]

You'll be fine. On this go around, I finished 5 SBRT to a PLN at the end of May, on Orgovyx. Wife and I just got back from Iceland. On previous treatments the only impact radiation had was time, since they were 39 IMRT to the prostate bed and 25 to the PLNs, couldn't travel outside of weekend jaunts.

Iceland

[Billyeff]

My age and diagnosis is very similar to yours. My current plan is to schedule proton therapy for my treatment in the near future. Have you considered this? The book You Can Beat Prostate Cancer And You Don't Need Surgery to Do It - New Edition provides the knowledge needed to help make this decision. I rarely hear much about it on this forum and wonder why.

[Vangogh1961]

I went to Cancun a few weeks after I completed my radiation. Holding the bladder was the only issue I had during treatments and it was nuisance more than anything. No fatigue compared to chemo.

[chefjlu]

Being active is a help to all. ADT, 2 months of radiation, no issues. Worked all through, still working. In for radiation in the morning, 20 minutes later back out and doing my thing every day. Haven't missed a step or a day.

[Horse12888]

The wide range of SE severity makes this an impossible question to answer definitively. For at least 90% of men, the package of fatigues, hot flashes, mental fog, depression, loss of sexual identity, and emotional lability is not sufficient to ruin a travel experience. The problem arises in the other 5 - 10%.

[JRPnSD]

Make your plans...buy insurance....and enjoy!

[ShipModeler]

Welcome to the site. My case is almost identical to yours. I am 76. My initial PSA hovered between 8.1-8.5. I have Mets to my pelvic lymph nodes so I am classified as Stage 4. I was started Lupron two months before my 28 EBRT. The only side effects I experienced from EBRT was diarrhea; six weeks of it, and the sense of urgency when I need to urinate. I understand this is not a common problem. After EBRT I started taking Zytiga. The ADT is what has impacted me the most. I have been on ADT for 15 months. I fatigue easily, my muscles are wasting away and when I go up a grade or stairs my legs feel like lead. Despite the fatigue I travel. I just know my limitations and I sit and rest when I begin to experience fatigue. It's important to exercise so you keeps your muscles as strong as possible.

[Hidden]

You stated "The only side effects I experienced from EBRT was diarrhea; six weeks of it, and the sense of urgency when I need to urinate. I understand this is not a common problem"

It is a very common problem. I had 7 weeks of speaking with others doing the same/;similar radiation. Most had that problem.

[pjd55d]

Go, and go, and go

Climbed to the top pf Mt St Michelle - 409 granite steps, climbed to the top of a sand dune in the Sahara to watch the sun set, RAN for the train in St Amand France, and hiked 8 kilometers in St Emilion because we got lost

If I drop dead doing something I will be very happy

LIVING with prostate cancer

best

[conchjoe]

This is super helpful. From all the reading I've done in the short time since dx, I'm seeing a common number of 50% of men experience fatigue, 50% experience diarrhea, 50% urinary issues, etc. And of course the 50% who experience the urinary issues may not expereince the fatigue, or vice versa. Seems to be luck of the draw, and everyone agrees that exercise definitely helps, regardless of side effects.

[j-o-h-n]

First of all fill out your bio (all voluntary).... Second take all the trips you want..... schedule all the shit around your fun......Enjoy yourself it's later than you think!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/10/2023 6:33 PM DST

[Hidden in reply to j-o-h-n]

After RT, schedule your fun around your shit.🫣

[j-o-h-n in reply to Hidden]

Not the shit shit........ just the shit....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/13/2023 6:31 PM DST