HealingWell
Search Close Search
☰

Back in Oncology Rehab again, finding it difficult.

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 23 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/25/2012 4:26 AM (GMT 0)
Good luck, David.

So sorry that you are in so much pain.

Mel

Posted 2/25/2012 4:32 AM (GMT 0)
squirm, the hip pain has always been real deep, feels like its in the socket. the back pain and right leg pain are more like a steady burning kind of pain, sometimes throbbing, even if I lie flat on my back and hold still. The area of the pain is now starting to move to the left hip and left leg, ever so slowly, but that's just how it started on the right side.

Ed - the problem, is that it is not vigorous at all, its baby steps, level 1 stuff, and even after a year into it, they can't get me to progress to the next level, so they work hard just for me to maintain the little bit that I do accomplish.
Posted 2/25/2012 1:27 PM (GMT 0)
David: Despite my not posting I am following your journey. As said before, you are in my prayers every week as I remember all my PCa friends who are fighting this battle.

Your courage gives me and many others strength. I hope you get that in return by the replies you receive back from others.

You are right. Everything must be taken in small steps. We can only live our lives one moment at a time so in turn we work toward our goals in increments.

Right now my goal is to maximize my incontinence recovery to the best that my body can deliver. I am close, but not in the zero pad club, if we have one here in HW.

If you get a chance, send an email.

So glad you have the facilities close at hand to attend to your needs. A small blessing, but a blessing none the less.

Keep hope alive,

Mike S.
Posted 2/25/2012 4:31 PM (GMT 0)
David,
Why can't they (perhaps an ortho) do some steroid injections into and around your hip socket to at least decrease the inflammation and reduce the pain? Has that been brought up? (or at least do a diagnostic injection to pinpoint where the pain is coming from then treat it from there).
Posted 2/25/2012 6:02 PM (GMT 0)
David,

I've had cortizone (steriod) shots in both shoulders with considerable but rapidly dimishing relief, but it generally doesn't seem dictated for hips.

Also, I've had both hips replaced (2006 & 2011) at St. Francis by THE hip/knee guy in Greenville, James Jennings of Piedmont Orthopaedics. In the course of examinations shot therapy was never considered an option because the cartilage was completely gone. This may or may not be the source of your pain.

There is some discussion of hip shot therapy at: http://ehealthforum.com/health/topic30302.html and other sites but go slowly since it sounds like the procedure could leave you in more pain, which you don't need.

BTW, when you're ready to pass-on the name of your Greenville medical oncologist, let me know here and I'll "unmask" my email address.

Mitch in SC

 

Posted 2/25/2012 10:46 PM (GMT 0)
David, I am happy to hear you are back in the Rehab program.  It seems you did a lot the first time back.  As I have said several times in the past, you do what you can do.  Please don't be too hard on yourself.  Even under "normal" circumstances, when returning to an exercise program it can take 6-8 weeks to get back in the groove.  You and your doctor have good communication.  Keeping him informed will help in future decisions.  I wish you weren't in so much pain; you are in our thoughts and prayers! I wish you the best with this, my friend!

James, thank you for passing along the information on Silver Sneakers program.

Take care, guys!

HUgs,

Aimzee

Posted 2/26/2012 4:18 AM (GMT 0)
Aimzee,

That is pretty well my standard routine, even after spending nearly a year there. They had hoped at one point, to get me up to 3 sessions per week, but that never happened. THey hoped to include up to 5 activities for each session, but that never happened either. Their fault? Nope, because I did not have the strength or stamina to endure more at the time. It's a frustrating catch 22 really.

I went to PT Thursday morning, and have had severe back aches every since. Been very rough the past 48 hours. For all the threads on exercise and how good it is suppose to be for you, it's not very convincing for me. Or, its just a whole different world for those that suffer chronic pain.

Not ready to give it up, but am questioning the sense of it all. When I stopped going, started losing my strength and stamnia, this was proven recently, but if I go, it magnifies the pain. This is the part that concerned my oncologist.

Sometimes, its really hard what to do or not do.

David

P.S. Hope Ron is holding his own
Posted 2/26/2012 2:21 PM (GMT 0)

Purgatory said...
?... For all the threads on exercise and how good it is suppose to be for you, it's not very convincing for me. Or, its just a whole different world for those that suffer chronic pain....

David,
I share your doubts. Physical therapy machinery and sometimes physical therapists use a one-size-fits-all approach that takes no account of the patients particuar physiology, sometimes forcing the victim (patient) into uncomfortable or even counterproductive contortions and repetitive motions. For example, I find the treadmill to be more uncomfortable than natural walking.

One of the unexpected effects of my forced convalescence waiting out the catheter was that my arthritic hips, knees and spine stopped hurting and I was enjoying my bones. Now I'm back to normal activities and things have began to hurt again.

As I have aged, I have come to accept a lesser level of performance and have resolved to enjoy that which I still have. The satisfaction of accomplishing some temporary physical feat that i didn't have to do is far outweighed by days of discomfort afterward.
Posted 2/26/2012 7:26 PM (GMT 0)
David,

I've been away from the forum for a while.  We were vacationing down in Puerto Vallarta, Mexico, and I must say that I thought of prostate cancer only a few times during those weeks.   Now we're back in northern Illinois and re-adjusting to the snow and cold.

Getting back into a physical fitness regimen is always tough, and while a person can set goals, they're only goals, and we may or may not achieve them, but physical activity usually is a beneficial thing.

I remember some years back when I tried to take up running again after back issues had forced me to give it up.  I felt as if I was breezing along at a pretty good clip, only to find that my typical times were not a minute or two slower per mile than when I was  younger.  I decided walking offered the same benefits with less stress on the joints.

I would say, do what you can and don't worry about what you can't do. We all have our limitations, and an injury caused by over-use can put an end to any fitness program.

I saw a thread when I looked at HW while down in Mexico that talked about why some guys stay with HW and some move away. I've been pretty luck in my cancer "journey" (except for the ED thing, which is beginning to look permanent), but I find I have come to take a real interest in the struggles and successes of all the guys here on the site.   We all share certain elements of this battle, and I've gained a lot by taking part here. 

I'm sorry you're finding it tough to get back into the rehab program, but I wish you all the best and hope you're able to keep at it and make progress toward feeling better.

 

Posted 2/26/2012 7:50 PM (GMT 0)
whitebird - i had major "old school" radiation in my neck/throat back in 2000. It was a brutal experience, and it left me, among other things, with perm. chronic fatigue. My oncologist said at the time, that if I was to recover 75% over time, that would be outstanding. I was 48 at the time. Since then, have had 2 major operations and 6 lesser ops, and 2 months of wrongly applied major radiation, all in the name of PC treatments. So the odds are very stacked against me.

my program is not "one sized fit all", its tailored to the needs of each patient. I have only had one therapist the entire time, and when I have my sessions, I am her only patient.

i have realistic expectations. i am never going to be the same as before, i know that. i no longer think the 75% level is realistic, not with all that has been added to the pile since, the goal of my oncologist now, is simple. To keep me from deteriorating even more - to try to maintain as much QOL as possible, try to build my stamina up within reason, control the chronic pain, and prepare me for what lies ahead, as my PC continues to progress. Me and him are on the same team.

good luck to you,

david
Posted 2/26/2012 7:52 PM (GMT 0)
thanks, clock, glad you are back in town. hope mexico did you some good.

david
Posted 2/28/2012 2:57 AM (GMT 0)
Monday Night Update:

Going to postpone tommorows PT session. A quick experiment. After last weeks 2 sessions, ended up with a weekend from hell with severe pain, even beyond the ability of the pain meds to control properly. I feel it was triggered by the PT. Today was 3 days from the last session, and finally had a more normal pain day, one without the severity of the weekend levels. I will go Thursday, and see how it effects me immediately after.

David
Posted 2/28/2012 3:48 AM (GMT 0)
David:

It sounds like you are doing too much.

Can you lessen the intensity?

Mel

Posted 2/28/2012 4:10 AM (GMT 0)
Mel,

Not more to lessen, then to drop out again, lol. Only doing (2) 45 minute sessions per week, and trust me, with all the oxyegen and BP testing they do in-between activities, and the required water and rest periods, not really doing all that much.

I know we got a lot of gung-ho people here at HW with all their exercise routines (and that's great if they can do it safely), but sometimes, the range of motions in exercise in general can cause un-needed pain, which can be counter-productive.

david
Posted 2/28/2012 4:18 AM (GMT 0)
David, have you done water exercises?
Posted 2/28/2012 4:26 AM (GMT 0)
That had been suggested at PT, squirm, but it's not practical with my Urostomy device, the water would make the device come loose and put me in a bad situation away from home. That, and I am not suppose to submit my morphine patch to water and/or heat.

For the first time in at least 9-12 months, I went in our hot tub, but not suppose to do that either for the same reasons above. But I took the chance in the safety of my own home, to see if it would give any relief to the pain in my back. It helped while I was in the water, but didn't last long. Plus, we were going to change out the device tonight, so I didn't mind sacrificing the existing one I was wearing.

Good suggestion though

david
Posted 2/28/2012 5:25 PM (GMT 0)
See David, I wasn't the only one that thought about water therapy.  It just seems so logical, but we understand...now.  Ron has been going for a deep massage.  He says it has helped him some what.  The massage isn't in the area where most of his pain is.  nono   It has helped his back and shoulders.  With your areas of pain, this would probably be impossible. Right?

Peace,

Aimzee

Posted 2/28/2012 8:59 PM (GMT 0)
Aimzee,

I can get free massages anytime at PT, but I can't lay flat on my stomach, as in face down, due to the pressure on the urostomy. The urostomy also happens to be on the right side, where my back and right hip hurt so bad. Some good ideas, but not always practical for me.

david
Posted 2/29/2012 12:48 AM (GMT 0)
David,

Sorry to hear that you are having problems with the PT sessions. It must be very frustrating to be losing overall strength an not be able to do anything to counter it.

It seems that the problem is primarily caused by pain in the lower body. Perhaps you could have the therapist develop a plan where you do aerobic work using only the upper body, rowing for example.

Just a thought.

San Carlos
Posted 2/29/2012 4:15 AM (GMT 0)
Hello Sancarlos, my friend, hadn't heard from you in a while!

Your suggestion has been brought up by my therapist, but the problem they see, is that unless you can "re-build" that crucial core area, it's really hard to expand in a meaningful way to the upper body. I sat at a desk today for about 3 hours, and that including getting up constantly for different reasons, and by the time I got home, my back and hip was so sore, that I was on the verge of sheer panic from the pain, and had to spend most of the afternoon and early evening in bed.

Drafting a new letter to my oncologist, to bring him up to date. The pain meds had been properly adjusted for my pain level, but unfortunately, just in the past month, the region of pain has expanded to now include all of my back below the shoulder blades, and has now moved into my left hip and left upper leg. Even on the meds, and laying down flat on my back in bed, the pain can be throbbing and severe. Not giving up, but honestly feel that whatever is going on inside me, is getting worse, and that I am fighting a losing battle.

This part of my PC battle is turning out to be one of the longest lasting and most painful parts of my entire journey. I wish I could get a break at some point. I have hurt severely for so long now, that I can't honestly remember what it would feel like not to be in constant pain. The pain is starting to get to my head, as I see no hope or relief anymore, and can only imagine what its going to be like later on as things progress.

David

P.S. Hope you are doing well. Your PSA numbers are to be envied, my friend. I am most happy for you.
Posted 2/29/2012 4:21 AM (GMT 0)
David,

So you're working during all this? Amazing. Do you also hang out at the Chronic Pain forum? I wonder if that is helpful. But keep coming by here too of course, or we'd miss you.

DJ
Posted 2/29/2012 4:55 AM (GMT 0)
DJ,

I do very limited amounts of consulting work, the kind you do where its all on my terms, i.e. the money part, when and how long I work, nothing resembling a real job, lol.

Yes, I am part of the Chronic Pain gang, I do post with them sometimes as well.

Hope you are doing ok.

David
Posted 2/29/2012 7:23 AM (GMT 0)
David:

Again, what about doing a proper nuclear bone scan/CT scan/ or Pet/Scan.

You said in another thread that you had no mets, but how in the world do you KNOW. I've seen nothing from you to indicate that you have had any of these tests, beyond orthopedic x-rays. HOW DOES YOUR DOCTOR KNOW THERE ARE NO METS?

If the pain is due to mets, aren't there medications that can reverse that for awhile?

I can't remember all the names, but maybe provenge or MDV 3100 or  abiritone (zytiga?). I know I'm butchering the names. In fact, even HT? Or, as you said, chemo such as taxotere.

While your PSA does not seem high enough to indicate extensive mets, maybe there are some mets pressing on some nerves.

If not mets, maybe the scans would indicate something else besides the nerve pain from the bungled radiation.

As you said, this seems to be spreading and you are describing such a dire situation. This is scary and I hope you can escape this state of torpor and do some further investigations. This is just not right and I hate to see you suffering so much.

Mel

 

Posted 2/29/2012 8:18 PM (GMT 0)
Because there was a new bone scan - full body, MRI, CAT scans, and a full set of advanced x-rays.
Posted 2/29/2012 11:26 PM (GMT 0)
David,

I just found your post again about Oncology rehab. I am in the San Francisco bay area further south however.
We are going to UCSF next Wed. and will ask them about any programs in our area.

So sad to hear of your pain.

BOOGEE
✚ New Topic ✚ Reply
1234