When Dr.'s say radiation and surgery are no longer an option

So sorry
Elle,

I'm so sorry to hear about your mom. I agree with Ro that you might want to get a second opinion and get some of your questions answered. Here are some links on how to find a gyn onc in your area. I hope this can help.

My thoughts are with you and your mom. --llight

Find a Gynecologic Oncologist – this is the referral link from the Society of Gynecologic Oncologists, a professional organization
http://www.wcn.org/findadoctor
Type in your zip code. See The Society’s Membership; not all board certified.

American Board of Medical Specialties – free registration. Worth it!
https://www.abms.org/WC/Login.aspx
Check that your doctor is board certified in gyn oncology.

U.S. News Best Hospitals Data: Cancer
http://health.usnews.com/best-hospitals/rankings/cancer/data

ElleP said:

none is answering my questions
thanks everybody. while I do appreciate all the caring and loving responses, no one is answering my questions. How can her CA 125 be down and she still be in such pain? It hasnt spread anywhere else. Her doctor discovered she has arthritis in her back and she has a UTI infection and needs antibiotics.

And no ladies, hospice is NOT a wonderful thing. That's where you go when you want to practice dying. She is 67, not 80 years old. Hospice is where you throw away someone so they can die and you dont have to bother. I cannot believe you folks would suggest such a thing and call it "wonderful". Whats so wonderful about being thrown away by your family? Would you enjoy it if someone did that to you? I am trying to help her get better. She has no reason to have cancer. She is the healthiest woman I know. we dont even have ONE cancer case in our family. She never drinks or eats or took hormone pills or hormone replacement therapy. Nothing. This is the work of evil - if such a thing exists.

Anyway no one is answering my questions, such as how can she gain weight during chemo and do so well and then deteriorate only a month after chemo is done, and everyone keeps telling me here to send her away to die. Are you kidding?

Hello Elle
Maybe this will
Hello Elle
Maybe this will help:
"Back pain is not a typical side effect of most chemotherapy drugs. However, it is a very common side effect of medicines that are sometimes given after chemotherapy to help keep the white blood cell count closer to the normal range. These drugs are called granulocyte-colony stimulating factors (their common names are Neupogen and Neulasta). They are given by an under-the-skin injection, generally one or two days after chemotherapy, and it is very common for patients to experience bone pain for a few days afterward." -
http://www.everydayhealth.com/breast-cancer/treating/hensley/side-effects-of-chemotherapy.aspx

and:
"Back pain can occur with bone metastases. Bone pain has been described as dull and aching, except when it is associated with muscle spasms, in which case the pain may be sharp and excruciating. Compression of the spinal cord occurs in some bone metastasis patients and is often excruciatingly painful. Cancer cells may spread into the fluid in the spine, causing neck and back pain, and stiffness amongst other symptoms." -
www.paineurope.com/index.php?q=en/book_page/cancer_pain

Maybe she should do a bone scan? I also know that acupuncture is commonly used to relieve back pain. Why not to try it if medicines are not helping?

bea-mil said:

Hello Elle
Maybe this will
Hello Elle
Maybe this will help:
"Back pain is not a typical side effect of most chemotherapy drugs. However, it is a very common side effect of medicines that are sometimes given after chemotherapy to help keep the white blood cell count closer to the normal range. These drugs are called granulocyte-colony stimulating factors (their common names are Neupogen and Neulasta). They are given by an under-the-skin injection, generally one or two days after chemotherapy, and it is very common for patients to experience bone pain for a few days afterward." -
http://www.everydayhealth.com/breast-cancer/treating/hensley/side-effects-of-chemotherapy.aspx

and:
"Back pain can occur with bone metastases. Bone pain has been described as dull and aching, except when it is associated with muscle spasms, in which case the pain may be sharp and excruciating. Compression of the spinal cord occurs in some bone metastasis patients and is often excruciatingly painful. Cancer cells may spread into the fluid in the spine, causing neck and back pain, and stiffness amongst other symptoms." -
www.paineurope.com/index.php?q=en/book_page/cancer_pain

Maybe she should do a bone scan? I also know that acupuncture is commonly used to relieve back pain. Why not to try it if medicines are not helping?

((((Elle)))). Your anger is very evident; I'm so sorry.
I can feel your angst and anger clearly in your posts. The sad truth is that when uterine cancer matasticizes, regardless of treatment, almost always the cancer is now seeded too broadly to ever be completely reined back in. I have recurrent uterine cancer and it is considered uncurable and a condition that must now be managed to allow me to stay symptom-free and have a good quality of life. CA125 can be totally unreliable. (Example: I had a CA125 of 45 when my CT/Pet showed no evidence of disease after my last 10-round cycle of weekly taxol), even though when I was in remission the 1st time my CA125 dropped to 11.

You ask how she can do so well on chemo, and deteriorate so badly when she is released from treatment. I can tell you that I sometimes feel BETTER after my weekly chemo infusion, if the node under my arm has been hurting, because the chemo knocks it back. But the cancer quickly advances when the chemo stops. Chemo can help keep you symptom-free, and that feels better than cancer progression dependent on where the cancer is making in-roads. Many times chemo and radiation are used palliatively, given to reduce pain.

If the cancer has also metasticized to the bone (a fairly common recurrence site), that progression may not be apparent on a CT/PET and a bone scan may be in order to rule that out. They are treating the UTI and arthritis, right?? The pain may honestly be unrelated to cancer progression as UTIs can happen when your immunity is comprised by the chemo. Did she had pelvic radiation? That can cause stress fracures of the bones which are incredibly painful and that should be ruled out if that hasn't been.

I agree that I wouldn't yet be ready to accept 'hospice' as my treatment plan; I'd be shopping for another opinion and a more aggressive approach to bring your mother back to a better quality of life, even if that life is interrupted by regular chemo. But hospice really is wonderful when you reach a point where the end is inevitable. I am counting on hospice to help me and my family get through the last few months. But NOT YET. & it doesn't sound like you are ready to go there yet either. But please keep your mind and heart open to it for later. & see if you can get another oncologist with a different plan for your mother.

Cindy Bear said:

Sorry
Hi Elle. It's heartbreaking to read about your mother and I think we can all sense your fear, anger and grief. I could have written your post in June 09. I lost my mother 4 months after being diag. with Stage IV end. adenocarinoma. She was 79. Not ready to die. Like your mother, very healthy, active little lady. Never smoked, rarely drank, loved to walk and work in her yard, ate well, never took hormones No known risk factors. We don't know our family medical history that well, but feel it was something genetic. Her father and a brother had prostate cancer, a great aunt had some kind of cancer. I don't pretend to have any answers and I still rage at times about the unfairness of it all. I'm with you, it's evil. I would def. get a second opinion. The CA-125 is not valid for alot of women. At stage IV before any treatment, my mother's was a 58. The lowest it got was a 21. Two days before she passed, she was in her yard picking up twigs, tending to her flowers, talking to the neighbors. I do know that cancer has to be a certain size to be picked up on a cat scan. I know of two cases where persons had clear scans, but when they had exploratory surgery, they were found to be riddled with cancer. That's sadly, the nature of the beast. My mother didn't live long enough to have hospice care, but I've heard from others that they are wonderful. They will come into the home and help with things like bathing and pain meds. Good luck with whatever you decide . Hugs, Cindy

You made me happy, Cindy, to know your mom gardened...
I love to think that I might be out in the garden grooming my borders and enjoying my flowers 2 days before I die, that I might really feel even that good so close to the end. That's a very comforting thought for me, that the small joys of life could still be mine almost up until the last day,...the sun and wind on my face, the smell of the blooms and the grass, a little chat with a neighbor. Sounds nice. Thank you for that little blessing before my bedtime tonight.

(You never know what you might say that resonsates in a good way, I guess)! Thanks again.