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OUT OF HOSPITAL

FRANTIC
Posts: 106
Joined: Nov 2004

Hello everyone. I just got out of the hospital. I am beside myself. As you all know from my previous messgaes, I have been incapacitiated with compression fractures of my back. My ribs keep fracturing for no reason at all. I have been bed bound since Nov. 2006. I now have developed DVT in my leg which is extremely painful. I am on pain killers 24/7 for my back. It appears I have severe osteoporosis of the spine. I feel helpless. A once very active woman who went down the tubes. I wear a back brace. I had kyphoplasty done on 2 compression fractures which were successful, however when the surgeon goes in to fixing 1 fracture others occur because the spine is so soft. I am out of work. While I was in the hospital I catscan of abdomen and pelvis was done to see if the blood clot went to the groin. Incidently I do have a filter so the clot cannot travel to the lungs. I flipped out in the hospital as the catscan revealed multiple metastatic nodules of the thighs. Being my thy was blown up with blood clots I thought how can colon cancer go to the thy. Prior to the DVT in the leg my oncoligist last month put me on injections of fragmin which is a blood thinner. I was on 10,000 units a day. And go figure there is no explanation as to why I still had DVT in my whole right leg. Those metastic nodules so stupidly interperted by the oncoligist happened to be the site where I injected the fragmin blood thinners in the upper thighs. Can anybody believe that Impression by a radioligist.?? I am shocked. I was out of my mind all night in the hospital until I saw the oncoligist. I am home now. Still in excrucitaing pain. I still have this disuse colitis of rectum and rest of colon that had been
disconnected since Aug. 2003 for cancer. The surgeon from Manhattan called me as before my back went out I was scheduled to have the rest of my colon out as well as my rectum. These parts have colitis. He feels if they are removed I will
fell better. He said the longer I wait the more baggage I could collect, as something else could happen or go wrong. He scheduled this surgery for march 13, 2007. As of now I barely get out of bed to walk. Don't know what to do, but cry every day. Your friend Fran. I am greatful that the cancer is not back but being incapacitated in constant pain I am trying to deal with. I do not know how I can face an abdominal surgery. I know this colon has to come out. AS when I was in the hospital I had excrucitaing bloody crampy discharge form this disconnected colon.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Well, Fran, you just have to put that business of the thigh out of your mind. I am sorry you had to deal with such incompetence, but that is thankfully in the past now! I am sorry I really don't have any advice about the osteoperosis - but are there any clinical trials involving medications to help in a severe case like yours? I know you have had surgery but have you spoken to anyone who specializes in bone density or has any reccomendations regarding strengthening your back?
I guess the only thing besides that you can do is voice your concerns to your colorectal surgeon about your back. Hopefully he is right and once you get the colon/rectum taken care of you will feel better, at least as far as that goes.
I wish you well. Sorry I don't have any great insights, but just try to rally your HOPE that you will find a solution to this and try to find out as much as you can about possible treatments for your spine.
Best wishes,
Susan

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi again Fran,
Are you on any of the following meds?

Raloxifene (Evista), a selective estrogen receptor modulator (SERM), which is used only in women. Raloxifene slows bone thinning and causes some increase in bone thickness.

Calcitonin (Calcimar or Miacalcin), a naturally occurring hormone that helps regulate calcium levels in your body and is part of the bone-building process. When taken by shot or nasal spray, it slows the rate of bone thinning. Calcitonin also relieves pain caused by spinal compression fractures. Calcitonin is used in men and women.

Parathyroid hormone (teriparatide [Forteo]), used for the treatment of men and postmenopausal women with severe osteoporosis who are at high risk for bone fracture. It is given by injection.

The middle one sounds promising as it says it relieves pain from spinal fractures! Also, I read that some hormone replacement therapies can increase the risk of DVT. Could that be the reason?
I hope this info. is helpful!
Try to keep your chin up and get those docs to find something to help you!
Good luck,
Susan

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Fran,
I am so sorry about you pain. I can only imagine what you are going through. You will be in my prayers.

Kiersten

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

((((((((Fran))))))))) If I could take your pain I would. It makes me sad that you suffer so much,hugs ron.

pink05
Posts: 553
Joined: Mar 2006

Fran,

I am so sorry that you are suffering with so much pain, however, am glad that what they saw on your thigh was not cancer. I hope and pray that God will heal you from this horrible pain. You are in my prayers.

-Lee-

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Fran: I've been thinking about you and wondering where you have been. I was hoping that you were on a cruise having fun, not this terrible experience you are currently dealing with. There has to be something out there that can be done about your osteoporosis, but until they figure it out, I think it is wise to deal with the colon/rectum surgery. At least by alleviating that discomfort, it should help with the rest of what you are going through. Ask if it can be done laparoscopically, because it makes a huge difference in recovery time. I feel so badly for you and the pain you are going through, but all I can do from here is pray, and that I will do. Monica

valeriec's picture
valeriec
Posts: 350
Joined: Oct 2006

Fran,
I am so sorry to hear that you are still in so much pain. Please know that my prayers are with you.
God bless-
ValerieC

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

you have been through so much, and I know what you are going through with your back pain. What kind of meds are you on? Although extremenly addicting,
Oxycontin (extended release) should control your pain. It was the only thing-(other than morphine) that worked. I wouldn't be concerned about the addiction if it controls your pain. bud

lynn1222
Posts: 105
Joined: Nov 2006

Fran, i am so sorry you are going through all this, please stay strong and know than i am praying for you. i know god will poor his love all over you at this time.

hugs, lynn

jams67's picture
jams67
Posts: 927
Joined: May 2006

I'm not in the medical field, but what about an antidepresant? It has to be so very difficult to go through what you are experiencing. I'm glad you let us know so that we could send prayers your way. jams

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Fran,

I"m so sorry that you continue to have such pain. Have they tried using a morphine pump? You need to be on something where you get a steady level of pain meds to try to get it under control. Have they tried the Calcitonin for the osteoporosis? Your doctors need to be aggressive in trying to get the pain under control and the osteoporosis checked so that the fractures stop. The suggestion regarding the antidepressant is a good one. When a person has chronic pain depression becomes a significant factor as well. I wish I could alleviate your pain but I can't. I will pray that someone with more power takes it away.

Your friend, Dick

Slyster
Posts: 8
Joined: Aug 2006

FRANTIC...I think anyone would be frantic going through what you have...And there is a good reason for you to feel helpless. When you think of being very active and then going down the tubes it can be discouraging...Those darn tubes...a person shouldn't be given more than one at a time. Speaking for myself I think sometimes anticipating something is actually worse then the actual fact. We can make up so much in our minds that when we go through something we kind of feel silly. I know I was scared to death of having a colonscopy...I did it when I had no more choices and ended up with colon cancer. When I found out and had to have emergency surgery, I just thought to myself...the (blank) with it, just do it. I am now an eight yr survivor. I tried to find the humor in everything and I think that's what got me through it all. I can't even imagine your pain. I know I wont complain anymore...my prayers are with you FRANTIC.

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