Latest Upate (02-25-14) The Plot Thickens

David, what you are now going through warrants a conference between all 3 doctors...waiting another 3 to 4 weeks for everyone to be in agreement is just not an option for you at this point.

It seems that your increase in pain, especially in the upper back, shoulders and arms coincides with when you began using the walker. Something structural is going on and is getting progressively worse. I hope that when your oncologist gets your email he's going to demand that you come in to see him ASAP.

Electrical stimulation may help with any muscle issues you're having in your back (and that could well be the source of some of your pain). I've had STIM treatment during physical therapy for my IT band and it does help to "soften" the tissues and break up any knots. Don't know if you're still going to the oncology rehab center; if you are, may be worth talking to your PT about it. It's not painful or anything like that...just feels a bit weird because the electrical shocks make the muscles jump a little bit but there's no pain or discomfort (at least for me).

May I suggest you get on the phone with your oncologist's office and ask to get an emergency appointment with him. If it means driving a longer distance to his "main" office, then perhaps it's time to ask someone to drive you or at least ride along with you so that you are not alone on the trip.

Hi David I sure hope you have heard from your doctor by now. My thoughts and prayers are with you my friend. I really hate that you're hurting so bad. I hope the doctor will increase your meds, so hopefully you can get some relief from all that pain.

I was going to ask if you drink Ensure to at least keep nutrients that you need going in your body. I miss e-mailing with you. Have you been getting them from me?

I have been going thru withdrawls again, because my stupid doctor didn't get my pain med scripts sent to the pharmacy yet again. She told me it wouldn't happen again, but it did. I guess I'll have to go in once a month to keep from it happening again.

Well, I'll go for now. Take care.

love and hugs
Loretta

Several years back, my Dad went from running 4 miles a night in November to being in a wheelchair in February of the following year.

He had been a runner for at least 20 years.

His cervical and lumbar spine started collapsing and he went from running to crippled in just 4 months.
He had spinal cord compression in three areas.

I do know that he was told not to use a TENS unit at all. He had two neck surgeries 2 weeks apart and then a back surgery a few months later.

There was concern that the spinal cord might not bounce back, but today he is pretty much healed.

However, he doesn't even think about running ever again.

Just thought I would pass on to not consider the TENS unit without approval from your doctor.

With all of the hips collapsing and pain, I had wondered if it was possible that you had spinal cord compression, as that is exactly how it affected my Dad. And quickly!

Hi David

I really hope you get in to see your doctors soon and get a plan of action Something needs to change for you. I hate to hear of you going downhill like this. Not good.

I'm having some problems just now too. about to have yet another spinal fusion on 26th March. This will be my fourth back op in just over two years.

Thinking of you as always

Take care

Jane

David:

I'm sorry that I've not posted lately. I've been following whats happening with you very close but I've been having issues with severe headaches and I'm lucky if I can see straight half the time. It's going on two months with my head hurting every single day.

I hate to hear that you're declining so rapidly. I pray that the spinal doctor does find something that can be surgically corrected for you. I know surgery is scary for anything, but back surgery is a biggie and I'm certain you don't want it, but I'm sure you'd prefer it over the other options. I hate to hear that your pain is now so out of control. I hope you've heard from your doctor by now.

I've not given up my friend, so therefore, you can't give up either. I've not been around a lot posting or staying in touch. You know how hard it can be at times. When my pain levels climb I do poorly mentally, when I'm in a bad place mentally, it's always better that I stay away. I sometimes make comments that upset those I care about and it either worries them sick or they get mad.

I don't want you to think I'm not reading updates on you, I like you haven't abandoned you. I just needed to get myself pulled together before replying to your thread. I understand your break from the forum and I appreciate it that you do give us updates. You're missed a lot here, it doesn't feel the same honestly.

Please try to rest and know that you're in my prayers. As you've said many times, there are always those who are worse off than us. I know one right now, my pulmonary therapist's 5 year old grandson, had brain surgery on Monday. He had a large cancerous brain tumor, he's very, very, very, ill and it doesn't look good at all for this little boy. I would gladly take on his cancer IF it would make him better and give him a life to live.

That being said, David, if I could I would take on your pain issues gladly. It's totally not fair that you've had to deal with all that you have. You've had 5 years of total crap and I hate that for you. I've been dealing with chronic pain at a severe level for over 13 years and pain and I have become close friends. I wish I could do something for you, but I really don't know what to do other than be here to listen and offer up my support to you.

I'll be sending many prayers for you this weekend and I pray that your pain lessens somewhat and you're able to relax and rest. You need to be able to sleep that will help both your mind and body. I know that you get anxious when you're alone and have such terrible pain. Please know I'm just a phone call away if you need someone to talk to. I may not be there in person, but I can listen and speak to you and help you thru the moment. If you've lost my phone # just email and I'll send it to you.

I hope that you're sleeping by now and tomorrow is a good day for you. Hang in there my friend, I'll be checking in on your on Sunday. Monday was my daughters birthday and today was mine, so I'm going to go to her university and see her. She called and asked for a homemade bday cake. Her Dad made one a couple of hours ago.

I'm tossing you a rope David, grab on tight, we will hold on together.

Hugs,
Barbara

David, I'm so glad to hear that you'll be seeing the ortho on Monday and the neuro on Tuesday. Hopefully, you'll hear something that gives you hope and a possible solution.

Did you hear from your oncologist about your pain?

Hi David It makes me angry that you didn't hear from your oncologist. You deserve some relief.

I was wondering why you weren't replying to me. Maybe I've been doing something wrong. I'll take a look at your email address again.

I'm doing better now. I got my patches on Wednesday. I've been having this horrible fatigue for a month or so, and I can't figure out what's causing it. I've been taking a prescribed iron pill, and a prescribed D3.

I hope you're having a normal pain night.

love and hugs
Loretta

David,

So glad to hear that you'll be seeing the doctors on Monday and Tuesday. I pray that they have answers for you good or bad. I would prefer good, but I want you to have at least some sort of resolution to all of this. I know how disappointing and upsetting it is when you're hope against hope that something will be positive so they can offer you some sort of help. Then to hear everything was normal, I know in my case, I feel as if the ground drops out from under me.

I'm sorry to hear about the pain today and I hope that you won't have to wait to long to get your patches. I'm quite upset with you oncologist for not getting in touch with you. That's totally WRONG in my opinion, you are a cancer patient who is suffering in real pain and he should be returning your calls no matter what. I knew Wednesday was a terrible day for you and I hated that you're suffering so. I totally understand how you are feeling, I've been living at the 8 out 10 pain level for a long time now. Can't seem to get the stupid foot to stop hurting me and my lower back is killing me like crazy even with me using a TENS unit several times a day.

David I'm glad you still have my phone number and Skype number, I want you to know that I really don't mind if you call me. I have several other friends who are having a very difficult time and they avoid calling me because they feel they are bothering me. Like I tell them, sometimes it makes things easier for me to handle my situation when I'm focused on their situation. It stops me from sitting or laying around focusing on my pain or my situation. The phone call from you would do the EXACT same thing for me as it does when I'm talking to them. It takes me away from my world and puts me in a spot where I feel as if I'm doing something good and helpful. So, please feel free to contact me anytime okay.

I'm up really late tonight, but I'm hurting a lot. We drove over to my daughter's college and took her out to dinner and had cake with her in her dorm room. My hubby has night blindness so by the time we left I had to drive us home, since getting my cateracts fixed I can drive great at night. Well, he was really tired and went to bed shortly after we arrived home, he was sound asleep by 9:30pm. Here it's almost 2:45am and I'm still up. I'm hurting quite a bit, daughters room is on the 2nd floor, and no elevators in her building. I made the trek up the stairwell twice today, between the foot, back, and not being able to breath, I'm wiped out and hurting.

I have to stay though, it was fun to watch her when we arrived at the restuarant. She ordered a drink and she was so excited to be carded. I informed the waitress she just turned 21 and the waitress was kind enough to put a lighted candle on her piece of cake a dinner. Daughter mentioned it was my birthday on Friday, but I didn't get carded nor did I get a lighted candle. Guess, I'm to old for that stuff. Overall, it did me a world of good to see my baby and to see her so excited. I hated to leave her, but I new I had to, of course I went overboard with the hand sanitizer LOL.

I hope that you're sleep and not having nightmares. I pray that you awaken well rest and you have a normal pain day today. Make sure you get your patches and get one on ASAP. Next week I should be around most days. I do have a few appointments, but I can email you those, in case you want to maybe try to set up a time to talk one way or another.

Take care and now that your pain buddy up north is hanging on with you. We're suppose to get another 5" of snow on Monday. I sure hope the robins and groundhogs don't freeze to death. They think it's spring here, but mother nature says NOT YET. I hope your weather is much nicer than mine and you maybe can sit outside on your porch or in your yard today and enjoy some fresh air.

Take care and gentle hugs to you.

Barbara

Virtually no pain associated with the crumbling teeth syndrome. It's almost like all the surrounding nerves are dead.

I don't think I have two good teeth left in my mouth, the rest are either pulled already or in various stages of crumbling. Certain the VA will say dentures immediately. Fortunately, since I am rated 100% with them, it should cover 100% of whatever is needed. If I can't make it until the appointment, i.e. tooth pain at some point, I still have dental insurance under my wife.

By noon Tuesday, will have met with both the spine doctor and the neuro doctor, I have to brace myself for whatever has been discovered, or not discovered. As long as one or both can come up with a definitive reason, I can handle it. If not, I will be on the verge of totally giving up, as I just can't keep living like this and bearing so much pain and torment around the clock. There has to be answers out there.

Told my wife just yesterday, that I feel like inch by inch, my body is shutting down. And I wonder, what next? is the stress of all this pain going to set off a heart attack at some point? Or is something going to shut down in my liver? Too much pain, too many issues.

Well, it's "Knight's" Sunday this morning, in an hour, I am suppose to be dressed to the max in my tux and gear, but the way I am aching, the last thing I want to do is to be around people, and to have to be all dressed up. But knowing me, I will tough that out and do it.

David

Prayers David..

squirm - its not believe to be as a direct result of the cancer per say, as no mets have been found, but as the results of ill fated treatments for the cancer.

thanks, diane :)


Paul, amount of words not important, your concern and prayers are more than enough, thanks

David

Purg,

Are you KofC or KT?

I have the tooth issue with Lupron & Prolia. They found two teeth that needed minor fillings in December. For a lot of unrelated issues, couldn't get back until Feb. (what work I can keep so I'm "insured" gets in the way of fighting PCa). One worked fine, but the "easy" one - the tooth shattered when they touched it. They improvised a five piece facing to create a tooth ( I'm not allowed to have a crown done because of the potentail pressure on the jaw). Interesting to hear my dentist, uro, and oncologist all on a conference call because of a filling. $100 visit turned into $500 that insurance would not cover because it wasn't pre-approved. And there will be bills from the uro & onco for the emergency consult. Like I was supposed to call them from the chair.

What doesn't kill us comes back tomorrow to try again ...

I had not remembered these details. My dentist's assistant had me move to a "dry mouth" version of the sensitive toothpaste I use for the night-time brushing. She follows the cancer patients.