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Posted 6/15/2012 9:12 AM (GMT -8)
Ian has had chronic fatigue since his treatment ended July/August '10. He experiences shortness of breath walking from one end of the house to the other...carrying our 14 lb dog outside makes him "winded"...any physical excursion leaves him totally weak. (This is not daily but very often.) He had a chest film last year...neg for any problems. His URO says the fatigue is due to the HT and radiation, says we "hit him really hard", HT is also responsible for the brain fog he fights daily. No one has addressed the shortness of breath...he has mentioned it several times. His rad onc says the fatigue should have subsided long ago. All blood work, scans, etc are neg for problems. His PSA is .01. I think the fact he is not exercising or walking adds to the fatigue...but he is too tired to become motivated.

The HT has been very hard on him...drenching sweats as well as the above. Has anyone else experienced these side effects? Have they been as severe and lasted this long? Need some help/advice.

Thanks, Kathy
Posted 6/15/2012 9:17 AM (GMT -8)
Has he seen a cardiologist recently or had an EKG?  My sister-in-law has been having these kinds of problems and just found out she has a leaky valve that may or  may not need surgical repair.

Given the other tests and the other specialists who've been looking at him, it just occurs to me that a cardio workup might be a good idea. 

Of course, I'm not a doctor and have no medical expertise, so it's just a personal conjecture.

Posted 6/15/2012 9:19 AM (GMT -8)
I am no expert, not even close. But a few obvious questions come to mind.
(1) Did he used to be able to do things (carry the dog, walk some distances, etc.) without getting winded?
(2) Is he currently overweight, and if so, how long has he been overweight? how much overweight?
(3) How is his sleep?

I would continue to get opinions from his Docs, even a 2nd opinion.

Can he walk short distances, and he is OK? If yes, you might have him do a short distance, and repeat it a few times each day. See if he can build up, increase the distance.
Posted 6/15/2012 9:27 AM (GMT -8)
Kathy

I have the HT side effects, hot flashes, sweats - but as you know I'm still under treatment.

Ian's last HT treatment was in July/August '10? Am I reading that correctly?

HUGS!

Bud
Posted 6/15/2012 9:29 AM (GMT -8)
Hi KJ63,

It's ms. wampuscat here--
Jim just yesterday was complaining about that weakness and feeling drained. It's pretty hot here and I think he's finally feeling the hot flashes.
We've also been in contact with his GP and they've reduced the amount of blood pressure meds he's been taking and also the statin for cholesterol. He's had REAL low blood pressure problems since HT. He has been exercising more and I still have to encourage him to DRINK LOTS OF WATER.
There are so many things working together here but I think the doctors need to made fully aware.
Hope things calm down for you guys and sure hope we see you in NY in Sept.!

Marie
Posted 6/15/2012 9:43 AM (GMT -8)
Thanks guys for your quick replies. Yes, Ian has had a cardiac workup, last year...good results. My b-i-law is his cardiologist and keeps an eye on him.

He is 20 lbs overweight...has lost about 5 lbs lately. He was able to do normal activities before his dx...the dog, a rescue crippled little guy...has been with us for a year only. Ian played golf everyday...was his passion...all laughed when it would begin to snow...Ian was still on the course. He hasn't picked up a club since Oct '09. Refuses to even go to the course just to see old friends. ? . He does have trouble sleeping because of the sweats...but easily can stay in bed for 14 hours. He can walk when he wants to...just not very far especially now in the hot weather.

Ian turns 70 next month...this entire PC deal has knocked him off of his feet. He is worried about dying, I understand this, and we talk often. Most upsetting to him is the idea something might happen to me...seems fearful if I am not here with him all of the time.

I think speaking to a professional might help him with some issues. There is a counselor he liked very much, he used to speak to him years ago about releasing stress. I have encouraged him to call but he says no.

I am concerned.
Posted 6/15/2012 9:53 AM (GMT -8)
Hi Bud...no, the HT is ongoing, he is scheduled for another injection in 2 weeks, his URO said last month he hopes to take him off HT and other meds next year. I wasn't clear...meant the radiation and brachytherapy. It just seems his SE's are more severe.

Hi, Marie....I hate to think of starting with a new doctor...we have been so trusting with his team so far. We are coming to Rochester, I said I would drive up alone...duh, suddenly he changed his mind. lol I am hoping he will accept the hospitality and friendship. He is leery for some reason...this is new...has always been the life of the party kind of guy.

Thanks to all again for your helpful suggestions. Just don't know how to help him.
Kathy
Posted 6/15/2012 9:59 AM (GMT -8)
Hi Fifties Male...the 2nd opinion answer was for you. Guess someone else in this house has brain fog today. haha

Thanks...Kathy
Posted 6/15/2012 10:00 AM (GMT -8)
I guess his BP is okay and that is checked, but if it's been a year since his last EKG I would have that checked just to be sure and rule that out.
Posted 6/15/2012 10:05 AM (GMT -8)
Hi Gleason 6 and Clocknut...yes BP is always good. Will talk to Cass about maybe having another workup or whatever he thinks might be necessary to rule out a problem. Maybe something has developed since last year?

Good thought...thanks.
Posted 6/15/2012 10:37 AM (GMT -8)
He experiences shortness of breath walking from one end of the house to the other...carrying our 14 lb dog outside makes him "winded"...any physical excursion leaves him totally weak.

that was my experience as well especially when i was experiencing the triple whammy (IGRT after BT and during HT).  i'd often have to stop after a flight of stairs and gasp for breath.  now i feel "normal" again.  HT was hard on me too but i attribute that in part to the other treatments.

ed

 

Posted 6/15/2012 10:55 AM (GMT -8)
Hi F8...thanks for your comment, maybe Ian will improve. How long did you feel that way? You are much younger I see, so glad you are feeling normal again.

Kathy
Posted 6/15/2012 4:42 PM (GMT -8)
How long did you feel that way?

about two or three days after my seeds were implanted fatigue and dizziness hit me very hard.  it made working and exercise more difficult.  i hung up my bike and started using the stationary bike in the gym.  i was also very intolerant to sun and heat throughout my treatment.

i started feeling maybe a little better and then it was time for IGRT, and it was during midsummer.  i got my last shot of lupron after IGRT was finished and i felt a little better in about six months except i was very stiff in all my major joints.  a couple months later my testosterone started returning and i slowly started feeling better.  the other day i was thinking that i now feel much better.

your husband is undergoing a very aggressive treatment but he'll be okay cool .

ed

 

Posted 6/15/2012 4:56 PM (GMT -8)
I had severe low T after surgery due to the uro taking me off TRT that I had been on for 20 some years. It left me with the severe fatigue, fogginess and other symptoms that you spoke of . I got a new uro and he put me back on testosterone and the symptoms went away.

A year later I got lung cancer and had surgery followed by chemo. That left me with fatigue like I had never experienced before. It was work to even walk around the house. I began exercising as well as I could and slowly got to feeling better. I lost 30 lbs due to the surgery and chemo and that helped too.

That kind of fatigue is terrible to endure especially if a person has been active before cancer. Mine went away slowly ( about 6 months ) and I nearly got back to my old energy level. So that is my story for what its worth.

Jim
Posted 6/15/2012 5:33 PM (GMT -8)
F8...As I said earlier, Ian's URO plans to stop the HT and 2 other meds next year...I am hoping many of the symptoms will ease and go away. He watered the outside flower pots and is in bed exhausted.
Thanks for your input...I am glad you are feeling much better now.

Biker90..Thanks for your input...I imagine the loss of testosterone is difficult for the body, although in Ian's case it is necessary. I hope you are doing well now...two bouts of cancer...wow. So glad you are doing well, thanks for your story.

Kathy
Posted 6/15/2012 5:38 PM (GMT -8)
Thanks to all who commented...I appreciated hearing how some of you coped with the same symptoms. You also gave me some much needed support.

I think this is just the way Ian's life will be until the HT is stopped. I pray there will be no reason to change the URO's mind
at the appropriate time.

Kathy
Posted 6/16/2012 1:37 PM (GMT -8)
Hi Ian,Cathy I've done nearly 2 years of ht therapy and can only say that it is horrible.......hot flashes energy loss ,loss of libido .......but worst of all depression and the dreaded brain fog that the manufacturers of these drugs no nothing about ??? ........if this is of any help I've usd the following drugs with some success to combating the side efffects.Sleep problems....zopiclone.Hot flushes....anti androgen 50 ml cyproterone acetate.Depression.......Prozac.Fatigue vitamin b12..
If I can be of any further help please contact me.
Regards Lee.
Posted 6/16/2012 3:23 PM (GMT -8)
Hi Lee,

I would not wish the misery both you and Ian have suffered on my worst enemy. With that said....I am so happy right now to hear from you. There is a measure of comfort knowing Ian is not alone. There have been many wonderful people who have given so much support to us, but you are the only one that relates so well to him.

He is currently on medications for most of the SEs. His URO and onc have tried different meds but so far, it seems to me, there has been little if any success.

You are the answer to my prayers as Ian is emailing you right now. Hopefully, he will open up to you. I see you live in the UK...Ian is originally from Epsom. Thank you from the bottom of my heart.

Kathy
Posted 6/16/2012 4:09 PM (GMT -8)
Lee....Ian has tried 4 times to send you an email....comes back cannot forward. If you would be so kind, please send me an email, I will give you Ian's email address. I hope to solve this...lol

Thanks so much,
Kathy
Posted 6/16/2012 4:22 PM (GMT -8)
Ahh great!

So happy you found someone who can help you and Ian out Kathy!

leeanglo - thanks my brother!

HUGS all around!

Bud
Posted 6/16/2012 4:46 PM (GMT -8)
Ian ,kathy I've mailed you and hope you receive as my email address is attached for you.Hope you can make contact if not I will look into why it is not working.
Posted 6/16/2012 8:09 PM (GMT -8)
Hi Lee...you hopefully have received 2 emails...one from me and one from Ian. (I did not receive yours.)

If you got them, fantastic...if not...we need a Plan B. lol

If you would consider talking to Ian, please send your number to us....it is very inexpensive....we've got a good phone deal for his business.

Many thanks to you,
Kathy
Posted 6/16/2012 8:18 PM (GMT -8)
KJ:

This is a long shot, but...:

2 months after I finished SRT (radiation), I started having symptoms similar to those you've mentioned. The worse was exhaustion and severe heart palpitations. I ended up admitted for tests via the ER. They thought it was a heart problem but I passed all the tests (including a stress test) with flying colors.

It could well have been a delayed reaction to the radiation.

HOWEVER, I had also started a statin due to borderline cholesterol about 7 weeks before the onset of the symptoms. I stopped that drug. A few weeks later the symptoms suddenly started to resolve and they went away completely over a 3 day period.

So, is it at all possible that hubby is on such a drug?

Mel

Posted 6/16/2012 8:45 PM (GMT -8)
Hi Mel,

I just checked, Ian is on VYTORIN 20 mg/ 1 daily. This particular drug is prescribed by our family doctor, and is listed for all 3 of his other doctors as one of his meds. He could ask next week when he sees her.

I appreciate your thoughtful comment, would be excellent if this is the case.

Thanks so much Mel,
Kathy
Posted 6/17/2012 5:00 AM (GMT -8)
Kathy & Ian,

This thread is why I love HW and all of my brothers here (even you Raddad).  I so far, have been fortunate to not have to be on HT so I can not contribute much. But the outpouring of love and help by my brothers is simply amazing. HW is GFMPH. The only thing I can add from reading so many posts on HT is that no 2 guys are affected the same. I have read reports of everything from hardly any SE's, to this HT is killing me and I can't take it. Sounds like Ian is somewhere in the middle and what he is experiencing is to be expected and not outside the norm.

Hope to meet you and Ian at GFMPH NY.

Terry

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