New License Plate/And New Physical Issues

I always think of you and Ron, when I think of survivors surviving.  Its great to be classified as NED, but sometimes that is hard won, and you have a whole new set of problems to deal with now that the beast is tamed. 

I think you're license plate is wonderful, and I hope it gives you added strength and lets others know that you are happy to be alive regardless of the stuggles of long-term side effects.

I pray that you will find relief from your hip pain. It is awful to experience such debilitating pain, and there is no getting away from it. 

Thank you for sharing. 

Kim,

    You're always so positive and supportive. I'm so sorry that NED still holds pain for you. I'm praying for a solution. Some days the battle seems impossible. Other days it's a breeze. My moniker came from my dad years ago. It stands fir Yolanda lives loves laughs mind body and soul. I try to live up to that. Since the diagnosis, it isn't always easy. I'm just working to be grateful for the day. I have so much to be grateful for.  Kim, your posts have helped me remember that 

Yolanda

   Giant hug coming your way. I know how much pain can control your life. I have stubbornly ridden the pain for over fifteen years . Now it has gotten the better of me. No longer can I just grin and bear it. From the personal perspective , well it didn't really rate as much of a part of my life anyway. I guess when surgery and chemo destroyed what little was left I truly did not mourn its passing . you don't miss what you never really had.  Back to pain. I have started taking oxycodone and noxolene. Interesting drug . It is a combination of opiate and opiate antagonist. Not quite sure how it manages to work but it does. It is supposed to work for twelve hours but that is just wishful thinking on the part of the manufacturer. I have avoided building quickly to high doses. I started at 5/2 mg morning and night . Then I went to 10/5 morning and 5/2 at night .stayed there for a couple of weeks then went to 10/5 morning and night.

         On occassions I still get breakthrough pain . That is where my old ability to grin and rear it comes to the fore. I take a tablet called Targin, thats the oxy/noxolene mix. It is controlled release so there ae no highs just moderate pain relief for around seven hours. I have tried the various patches ,fentanyl and norspan. They were horrible for me ,there was no cosistency or control of the drug release and I suffered nasty side effects . Same with the anti-depressants that they promote as pain killers. I tried endep and had some really bad experiences and totally refused cymbalta.

           I have been taking cyclosporine for nephrotic syndrome of the kidneys. I had a parainfluenza last november that put me in hospital . It also raised my daily protein loss from two point eight grams to seven grams. I went onto the cyclo in January. It has dropped my protein loss to just over two grams and my bp has stayed steady at 140/80. In the past fortnight something has gone wrong and my bp has been spiking. This morning it was 180/120. I suspect the cyclosporine may have stopped working and my protein loss is rising.   Immuno

suppressants don't come much stronger than cyclosporine. I don't think that I have many options left. Dialysis will not help as my kidneys are still clearing toxins it is just that they are getting rid of the protein that stops the blood from leaking thru the walls of the veins. I will see one of my docs on wed and see what he thinks. Hope you can find some pain relief. I am having no problems with the targin so they may be worth a try,Hugs Ron.

I know what you mean about lasting effects from chemo and radiation.  I walk like a 80 year old lady.  I go to the bathroom about 20 times a day.  So frustrating.  I can't use toilet paper, I use wipes and if I forget to bring them with me if I go anywhere, we have to stop.  I used to walk too, now just walking around the house can be difficult.  I am also diabetic, so not sure if foot pain is from that or chemo or combination.  I am 51 and feel so old!  Hope you are feeling good today, you are not alone.

Sandy

ron50 said:

G'day Kim

   Giant hug coming your way. I know how much pain can control your life. I have stubbornly ridden the pain for over fifteen years . Now it has gotten the better of me. No longer can I just grin and bear it. From the personal perspective , well it didn't really rate as much of a part of my life anyway. I guess when surgery and chemo destroyed what little was left I truly did not mourn its passing . you don't miss what you never really had.  Back to pain. I have started taking oxycodone and noxolene. Interesting drug . It is a combination of opiate and opiate antagonist. Not quite sure how it manages to work but it does. It is supposed to work for twelve hours but that is just wishful thinking on the part of the manufacturer. I have avoided building quickly to high doses. I started at 5/2 mg morning and night . Then I went to 10/5 morning and 5/2 at night .stayed there for a couple of weeks then went to 10/5 morning and night.

         On occassions I still get breakthrough pain . That is where my old ability to grin and rear it comes to the fore. I take a tablet called Targin, thats the oxy/noxolene mix. It is controlled release so there ae no highs just moderate pain relief for around seven hours. I have tried the various patches ,fentanyl and norspan. They were horrible for me ,there was no cosistency or control of the drug release and I suffered nasty side effects . Same with the anti-depressants that they promote as pain killers. I tried endep and had some really bad experiences and totally refused cymbalta.

           I have been taking cyclosporine for nephrotic syndrome of the kidneys. I had a parainfluenza last november that put me in hospital . It also raised my daily protein loss from two point eight grams to seven grams. I went onto the cyclo in January. It has dropped my protein loss to just over two grams and my bp has stayed steady at 140/80. In the past fortnight something has gone wrong and my bp has been spiking. This morning it was 180/120. I suspect the cyclosporine may have stopped working and my protein loss is rising.   Immuno

suppressants don't come much stronger than cyclosporine. I don't think that I have many options left. Dialysis will not help as my kidneys are still clearing toxins it is just that they are getting rid of the protein that stops the blood from leaking thru the walls of the veins. I will see one of my docs on wed and see what he thinks. Hope you can find some pain relief. I am having no problems with the targin so they may be worth a try,Hugs Ron.

     Just an update. I went and saw my gp yesterday. We had a good talk. This guy actually listens and we usually reach a mutual agreement on treatment. He asked me what I thought was casusing the bp spikes and I said that it could be that the cyclosporine may have stopped working but more likely that it was that I wake up each morning with a a back pain flare because the Targin is not lasting long enough. He said that he thought that I was right with my second opinion and suggested we raise the Targin dose from 10 oxy/5 noxolene twice a day to 15 oxy/7.5 noxolene. I went on the higher dose last night. This morning I woke up pain free and bp of 125/95.  It is amazing what little victories can do to lift the spirits of people in our situation. He thinks that i will have one or maybe two incremental rises before I reach the lowest sustainable dose.

              Targin is not what I expected oxycodene to be like.. There is no high from it. My gp said it has been a source of great dissapointment to drug addicts that have tried to abuse it. It just does not work . Apparently with a lot of opiates you still have the pain you are just so high it no longer worries you. That does not happen with targin. It actually stops the pain and the noxolene(the opiate atagonist) minimises problems like constipation. I swore that I would never go on mind altering drugs. Well I am glad that I waited till targin hit the market. When I first went on it my nephrologist had to ok it. He was very very impressed with it as a pain relief and was more than happy for me to go on it. Have a talk with your doctor Kim and see what he thinks . It really is helping me. I am not suggesting that it is the holy grail for your problems but it is a good solution for those of us who have problems that are not going to be resolved by other measures. All the best Ron.

Annabelle41415 said:

Thank you all

Thank you all for your responses.  It seems to be a little better now that I'm not walking so much.  Putting a pillow between my legs at night is helping also.  Still going to ask my doctor what he thinks.  I'm just not wanting a bone scan as I've heard it takes hours and with my bathroom issues I'm afraid I'd never last.  Still wishing they could just do some x-rays.  Thank you all for your thoughts and prayers. 

Hugs!  Kim

Have you considered that food might be causing the joint pain?

I was having a terrible time with joint pain, especially my elbows, hips and knees. I thought for sure it was the results from radiation and chemo. When I found out about my liver met, I started seriously cutting down on bread (even though I make my own) and foods with white flour, and cutting down on my sugar intake. 

I didn't notice it at first, but my pain, all of it, went away. 

Well, after my surgery and recovery, I started eating the white flour foods again, and the pain returned immedietely. Now, if I eat a Bagel (the worst trigger of pain) or any white bread type food (Pizza crust, Tortillas) the pain cranks up. 

Just an idea. I know we're all different, but I thought I would throw it out there for you to mull over.