Personal Update 2/14

Still hanging in there.

The areas of my body that have been wracked with severe nerve pain has extened even more the past couple of months.  At its worse, it covers my right hip, right leg down to the knee, my entire lower back, and now is spreading to my left hip and leg.  It's become more and more difficult to walk at any length without severe pain.

My oncologist recently has changed the duration of my fentanyl patches from 72 hours to 48 hours, in hopes of avoiding really bad days on the 3rd day of the patch.  He's hoping it will even out the effectivness of the pain patch by shortening out the length it stays on.  A little too early to see if it will help or not.

Fatigue is as bad as ever, still hits me hard by mid-afternoon every day, regardless of activities or medications.

I see the doctor again in mid-April, and a new PSA test will be done.  Will be interesting to see how much of a climb will have taken place between the December and the April readings, a space of 4 months.  It is hoped that the rate of acceleration will at least slow down.

If the PSA has reached 20 or more, from the current 14, some form of PET scan will be ordered to look again for any sign of mets.

I took a break from the Oncology Rehab for the past 2 months, it had reached the point where I believed it was causing more harm than good.  But after going down hill even more physically since then, it's been re-activated, and I am to start again tommorow morning.  It will be for one to two sessions per week, depending on how well I do.

After all this time, its still hard for me to believe, that the faulty SRT I received caused so much damage to my body, what between the loss of my bladder and all the nerve damage.  I may be the rare exception here at among our HW group, but based on conversations with my oncologist and urologist, they have seen many men heavily damaged by RT.  Once the RO's are through with them, the patients get filtered back into the system again through other doctors, and often the damage isnt  being tracked or tied into the RO's and the radiation clinics.

Doing the best I can right now, but I have still seen myself every 2-3 months, dropping more and more abilities and physical strength all the time.  It never goes upward, only downward, if I were to graph my performance.

I have a certain amount of aprehension about what lies ahead, hoping I will have the physical strength to endure whatever is next, and hoping and praying that nothing new pops up on the medical scope to worsen things.

Just got back from a 3 day holiday to Charleston, visiting with my daugther.  Had a good time visiting, but it was very hard to enjoy much activities, as it involved a lot of walking on very rough sidewalks and roads.  Charleston is beautiful, but not at all disabled friendly.  It's virtually impossible to find any handicap parking spaces anywhere in the city.

David in SC

You are spot on regarding RT and the lack of data on SE due to folks not going back to their RO. My doctor made it clear that I should seek help elsewhere is problems develop.

Also, I can't put my finger on it, but my health has deteriorated  a lot starting about 2 months after SRT completion. It may be unrelated, but I was quite healthy until then.

Is a PET scan better than a CT scan?

Mel

joel, thanks for your word.

mel, all i can say for myself, its been a downward spiral for me in every sense of the word since my SRT ended in such a disaster. there has never been any improvement during this time, feel like i am still slowly sliding off a cliff. there were things i could do even 3 months ago, that i no longer have the strength or ability to do. this downward slide is no fun. PET or CT? depends what they are looking fore.

devasted, thank you also. you are quite right in your description of the pain beast. chronic severe pain is something hard for those without it to truly comprehend what it is like to hurt literally 24/7. yes the pain meds have helped a lot, true, but the areas of pain are spreading, making it harder to control all the time. and there are times, despite morphine and loratabs, the pain overcomes it. i am fortunate that my oncologist is also a pain management specialist, so we are really in tune with each other, and he truly is watching my back, making me as comfortable as he can, for which i am thankful.

david

Purg,

Sorry to hear the news that your pain is spreading. I hope that the change in the timing of the patch from 72 to 48 hours helps you. Do your naps help (if you are able to sleep with the pain) in the afternoon for the fatigue? How do you feel about the Oncology Rehab starting again? Is it one of those things that your too exhausted to do, but after you do it you feel better and your glad you did it?

Wishing you the best.

Thanks for the update David, although I wish there were more high notes other than a trip to Charleston. I tell people I was doing quite well when all I had was PCa, before surgery and SRT. Havent had a vacation in 4 years now, but will take one this year hopefully. Let me know if you are ever up for lunch as you are only  1 1/2 hours away.

Michael

Hey David:

It's like an Olymoic Event, one hurdle after another, but I sure as heck believe you are still going to win this race, maybe even a podium finish. Your sheer determination and strength demonstrated in all of your posts have helped so many. You are taking care of yourself in a very sensible and methodical way IMO; baby steps if you will.  Still hoping to meet and talk with you in BR in April (after your app't).

Jack

Sending hugs and prayers from 'over the pond'
Willing you to keep fighting the fight David.
x

David, I hope and pray you find relief and this thing starts turning around for you, you are such a positive voice to all of us, I gotta believe it will happen...mike

Thanks Mel,

Hearing about others' experience I feel truly blessed with the doctors I am seeing. I spoke to another RO that my wife used for her breast cancer follow-up and he has treated her the same...with excellence. He is part of a large group that do more seed implants than just about anywhere else. I have spoken with some of their patients (one is a business partner that had seeds and IMRT seven years ago and he gets the same treatment I do) and get the same feedback from them that I have from my RO.

I think the fact that the large seed clinic is here in Atlanta, advertises extensively, and was among the first to show long-term treatment effectiveness numbers that rival surgery has raised the bar for all the ROs in the area. Nothing like competition to raise overall quality.

My RO is young, not yet 40. He is the third generation of the ROs in his firm. They have been doing HDR brachytherapy for ten years and keeping track of everyone to be able to illustrate their actual experience. I don't know if they would ever publish their results, but they shared with me the number of treatments they have done and several graphs showing their results.

The practice was very good about everything right down to the receptionist always asking when I had my water. They have a water cooler in the waiting room. The tech would also ask me before I got on the table. I met at least once a week and sometimes twice with my RO and he went through everything and always gave me a good once over......always included vital signs, height, weight, and looked at the radiation area for any burning, etc.

Maybe others can take my experience and let their RO know that they expect the same or better level of care.

Jack

You do not know me but I feel like I know you...because I followed this forum before my surgery a year ago today.
You are a voice of reason, concern, compassion, and knowledge to name a few.
I am so sorry for the pain you are going through and will pray that your Dr.'s come up with a treatment plan that will bring you some much needed relief.
All the best.

David
It saddens me to read about your issues. You have been such a big help to all of us. I wish you the best.

Wow, a lot more replies than I expected, let me see if I can catch up, lol:

mel - nerve damage is considered to extensive and widespread for the use of nerve blocks in the conventional sense

gleason and bud - thanks guys

michael - my world seems to get smaller all the time, i was thankful for the trip to charleston, the 3 1/2 drive was almost unbearable for me - but it was worth it on the other end. that was absolute limit for me being in a car. lunch - great idea, let's start thinking about a halfway point, i am open

squirm - thanks my friend

jack - on the subject of winning, not sure that means the same thing to all people. i may not win in the end, but if i live out my days with dignity and with the knowledge that i fought the fight, it would all be good in my mind. i spend more time getting through each day, then each week, etc, i rarely spend time thinking about the big picture anymore, as i am not sure what that will really mean to me, but i get your point

jnf - glad i am not the only one with a good caring doctor, i find that critical in my very survival

thanks to overthepond, mike, ger, chris, ein and sam

dude, thanks for the link will check it out

david in sc

David -- i often wonder why i was so hardheaded about seeing the doctor and getting regular check-ups for the 10-15 years previous to my diagnosis.  i think it was mostly because i had fear about the hepatitis which ironically may never be a problem for me.  or may.  i don't know.  all i know is the prostate cancer is the one i think about and fear.  a lot of bad news this week on the forum.  i just hate that.

i know what you mean about your doctors.  i view mine as gods    take care buddy.

ed