CSN Login
Members Online: 4

You are here

So much pain

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Hello everyone,I have not been on here in a while but still reading daily. As most of you know I have had Sir Spheres to both lobes now and while I know it takes a while to work, in the meantime I have been in so much pain. I started having pain in belly along with bloating before the Sir Spheres. I mentioned this to my Dr. but he said doing the liver was priority right now. Since the procedure, I have so much pain...pain is in lower back, stomach, sternum and liver. I feel like someone hit me with their fist right in the gut and then you lose your breath (you know that feeling) I get winded very easily. If I eat or drink anything my stomach becomes bloated to the point that it is uncomfortable to walk upright. I have been off of chemo for a while so that I could prep for the procedure. My Onc. canceled my chemo Tues. due to pain and is sending me for a scan today. I am so scared, I just feel that there is something bad going on to be in this much pain. I am taking percocet 4 times a day along with advil in between. Have any of you experienced this kind of pain? Not sure if mets are back in the belly, or something going on in the lungs. I just can't figure it out. It could be something is going on in the colon again. I just can't imagine I could be in all of this pain and there be nothing going on. It is just so scary and lonely.I know that quite a few of you are on pain pills, what kind of pain are you having? I know I am grasping at straws, but just need someone that understands to post. I was so hoping the Sir Spheres would work and then I could just reduce my dose of chemo and be on maint. chemo. I will keep you all posted on the results of the scan. Patti

iluvmms's picture
iluvmms
Posts: 134
Joined: Aug 2009

Patti,
Have they checked your gall bladder? I think it could be just a side effect of the spheres. I am just now feeling better and I just had the one side done. I am still very very tired, and I still have pain in back area and feel sick every night. I think it is something to do with the speres and gall bladder or spleen or pancreas or something. Have they mentioned any of this to you? Ask them to try the Steroids?

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Hey Christy, they did give me a steroid pack this week to try, I have not noticed it doing anything yet, I am on day three of taking them. Did you feel pain this badly? taking pain pills around the clock? I can't even really pinpoint the main pain source, it just seems like it's everywhere. My stomach was bloating before the spheres but I certainly was not in all of this pain before. I had some pain but not like this! It is just scaring the hell out of me, and I have been crying all day. It just makes me feel so out of control, but you know life goes on for everyone around me. Kids playing tennis this weekend, church, etc. I have to put on a happy face and do what I can with all of this pain. Taking the pain pills makes me groggy and emotional but I can't do anything without them. I tried going to the grocery store last night but the pain pills were wearing off, It took everything in me to finish shopping, I wanted to run out crying but I knew we needed food. My poor husband is doing everything right now and I at least wanted to get the shopping done. I am just so sick of this ----!! I can deal with a lot, and have in my life, but pain is the worst. It really makes you unable to function. Patti

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

My sister is in alot of pain, and a few weeks ago the back pain was caused by blocked bile ducts to her kidneys. She had stents placed to relieve the pain. She still is in alot of pain, now they think could be the bladder? Please keep us posted. I am praying for you!
My sister wanted the SIR Spheres, but was denied by insurance. Marie

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Patti,
i am so sorry you are in so much pain, i hate this cancer it is not kind or easy, I feel like we are the forgotten cancer, I was amazed at how little attention we are getting in the media, compared to other cancers. I feel like there is just more to be done. I hope you are able to find out what is wrong and get releif,
I can relate to the grocery store, this is usually where my bg fails and i have to figure out how to get out of there and the groceries home, my heart goes out to you.
Live, Laugh, Win
Penny

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I'll pray that they can find what's causing the pain and quickly fix you up.

Are you having normal bowel movements? Could you have adhesions causing you to bloat up after eating and drinking?

iluvmms's picture
iluvmms
Posts: 134
Joined: Aug 2009

Adhesions make sense. That could be causing the pain. I think amybe the steriods might kick in some too. I swear that it is sphere relalted because I just have started feeling better. Please keep your chin up, i know it is hard, but you can do it!!! What time is scan? Is it a CT or a Pet or a MRI??

sallyjoy
Posts: 102
Joined: Apr 2004

Hi my hubby has been dx with multiple mets to lungs this past fall.. it was extreme pain in liver area (he has had 2 single mets removed in the past from the liver) so we thought he had a recurrance to the liver, however in turned out to be his lungs, both lungs and five doctors later they still cant figure out what his terrible pain is coming from. He was taking 30mg Oxycintin ER 3 x day, with 10-15mg fast release oxycontin 3-4 times a day for breakthru pain, so 4 percocets is nothing... really so dont worry about that its a lot of pain meds... also since he started chemo the pain is better noone knows if its the chemo itself or maybe the steroids. it is extremely frustrating to my husband to not know the source. He does appear form reading his reports that there may be an elarged lyphnode in the general area but the drs just dont seem to think thats it and they say the lung lesions should not cause him any pain... ive wondered about adhesions as hes had several liver and abdominal surgeries in the past, but he disagrees with me... what really worries me is that he is thinking about stopping the chemo cuz he doesnt like the ill feeling, but i fear his pain will come back full force... we cant seem to find a doctor who can help us find the answwer to the pain... very frustrating... wish you the best in your recovery and hope your pain is just a temporary thing... hugs!

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

My Onc wouldn't let me take percocets because she said they were very bad for liver, have you tried anything else for the pain? anything with tylenol, she said not to take if you have a diseased liver. I'm on Oxycotin, and I never have pain. Maybe some aches and pains during chemo, but that's normal she said, it could be the chemo killing the tumors, and nothing else ever shows up on the scan, but I just wanted to say I'm thinking of ya, and hope everything gets better soon, and maybe you should ask for something else for the pain.

Hugsss!
~Donna

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Patti,

I am sorry you are in so much pain. I want you to know I am thinking of you + hope your pain will soon subside + the doctors will figure out why you have this.

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I saw that you were not posting and thought maybe you were having a rough time of it but hoping I was wrong. You are getting scanned so that is a good thing, maybe they can pin point where the pain is coming from. I sure hope so. I think of you often. Don't know about pain meds, George has not taken any since resection last April. I don't say this often because I don't want to offend anyone but I will say a special prayer for you tonight. Take care - Tina

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

Patti,

I am so sorry to hear about your pain. I have had pain for nearly a year, off and on, from a met to the sacrum. Since January the pain has been severe and unrelenting, and I sympathize with much of what you write. Sometimes pain is difficult to locate and characterize -- mine is. You write that the pain sometimes just makes you feel out of control -- yes, partly because it's so hard to describe and locate the pain, partly because when you have severe pain it's almost impossible to think about anything else, to be creative, to gain an objective perspective on the pain, the cancer, or anything else, to remember that you once had a life without chronic pain. Little tasks become ordeals, what used to be easy and taken for granted isn't any more. And it hurts -- agony.

I take very large doses of pain meds and don't feel apologetic about doing that at all. They help. My goals are what they have been since I began pain control treatments: keeping myself as active and alert as possible during the day and being able to sleep at night. For me that means skimping on pain meds during the day, even if the pain is bad. Keeping physically active (for me, gardening and walking my dog, among other things) and keeping my mind active (reading and writing) help distract my attention from the pain. If it gets too bad, I just lie down and wait until I feel better. I go out less than I used to and have close friends come to our house -- I can keep myself more comfortable that way and I don't feel isolated. Love and friendship help -- so much.

I don't have any other advice, no magical ways to make the pain go away, no assurances that the pain is nothing to worry about. All I can offer is the voice of a fellow traveller who understands some of what you are feeling and hopes that helps at least a little.

John

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

The pain you're describing sounds very familiar, it's happened to me twice in the last year. The first time was after my bland embolization. I don't know what they did to me while on the table but I was virtually immobile for a week after the procedure. I had the sensation that some one had punched me in the middle of my back and their fist came out the front. I had my wife check the alignment on my back and I had a vertebrae poking way out and to the left. She literally hammered it back in with improvised punch and small hammer. She did a great job of realigning me. I had stopped taking the pain meds since they were only making me constipated which added to the area of pain. I was taking valium and ibuprofen which seemed to work much better. But there was an instant of relief when she tapped me for about the 10th time. I could feel the life rush back into me and all the agony wash away. It really turned around for me in just an instant. I think I wrote about it on here, or maybe facebook, I can't remember which.
The second time I felt the pain you're describing is when the Drs or Nursing staff broke one of my ribs in ICU. It was after one of my infection flareups. They fractured a rib right above the liver and I thought for sure the cancer had spread to the bone. They did a CT, Pet, and MRI and didn't find anything. It took one of the radiation techs to ask if it felt like a broken rib, luckily, I had had a few of those and said it did indeed feel like a broken rib. That thought had never crossed my mind. It turns out someone had somehow broken my rib. A simple chest x-ray solved my problem. Again I stayed away from the pain meds but took valium and ibuprofen for pain and inflamation control. The valium help control the soft tissue and muscle spasms associated with the break. I hope this helps

dorookie
Posts: 1736
Joined: Jul 2007

and like you I was scared to death that the cancer had come back and settled in my bones or somewhere that was causing me so much pain. I am even going to a pain doc, had an MRI, which did show a slipped disc, had 3 steriod injections with little to no relief. That made me even more scared that the cancer was somehow back. My ONC had ordered a Ct scan and a bone scan, but the waiting to get the test done, and dealing with the pain in between was the worst. Thankfully, the scans came back clear, so I can understand your fears, but it wasnt anything, so I am praying that will be the case for you too. To this day they have not found what is causing my pain, still working on it, but at least its not cancer and I can deal with that a whole lot better.

Not sure if what I said made much sense or helped in any way, I just wanted you to know that your fears are validated and your not alone.

I will be praying for you (if thats okay) Hope you feel better soon.

God Bless
Beth

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Thank you Beth and everyone that posted, yes I would appreciated prayers always Beth. Do you take pain medication for your pain? where is your pain specifically? It took me from 8am this morning until 12 to get may pain under control to be able to do anything. I do know that I have alot of gas build up in my stomach, it will come out in the form of a burp but not the other way. I just don't know what it is, I started thinking that it's my colon again with all of the gas. But there are so many area's of concern that I just can't pinpoint it. Patti

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

For what its worth, George used to burp a lot. It has slowed down the last 3 months or so. He used to burp so hard that I could not belive it didn't hurt. He does take some prescription anti-acid type thing but he took them before we found out about the cancer. Are you sleeping ok? Take care - Tina

pearl95
Posts: 1
Joined: Apr 2010

Wish you lots of luck! My father was diagnosed with pancreatic cancer a year ago. He is on the G-flip regimen.There was no growth of the tumor, thank God, but also no shrinkage. Just wondering: 1)where did you receive the sirspheres treatment? 2)Is it a common treatment for pancreatic cancer? Thanks. Feel good and take it easy!

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Sir Spheres,Theraspheres are one and he same. I know they are used for liver cancer and colon cancer that has metastized to the liver. Not sure about pancreas. You might want to google Theraspheres or Sir Spheres and you can read exactly how they are used. It is my understanding they are minute (sand like) radioactive beads that delivered to the liver through a vein in the groin to treat the tumors.

Tina

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm so sorry about the pain. I hope the doctors can do something to help you VERY soon.

*hugs*
Gail

Subscribe to Comments for "So much pain"