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Louise,
Thank you for your post. It really made me feel at ease to think about meeting with hospice if Mom decides that is what she wants to do. Very interesting about the cost of hospice, I had no idea. I think that they will be as much a help to me as they will be to mom.
I am sorry to hear that your mom is failing. Three years living with cc is certainly different than her 1 year initial diagnosis.
I am so sorry to hear that you and your mom have cc. Goes back to the hereditary question. Mom’s oncologist has reassured me numerous times that cc is not hereditary, but I wonder. I went to the dr and asked about some genetic testing, and insurance told me that one specific test that the dr wanted to do was $3000.00, and insurance wouldn’t cover it. Although if Mom had the testing done insurance should cover more of the charge, since she has cancer.
Thank you again so much for your post. I don’t know what I would do without our little group. Big hugs to you.
Amy
Amy,
You have my sympathy! My mom in Franklin, Indiana, was also referred to Hospice. If you feel so inclined, I encourage you to call them anyhow. When Hospice came out for the initial visit, they came to inform Mom (and my sister whose home she’s in) what services are available and that they do not charge the patient for the care they provide. They do file with the insurance company if the patient has insurance, but they also receive funds from United Way and other sources, so the patient never sees a bill for their services. The idea of getting the initial visit out of the way when the need is not there has a great deal of appeal, precisely because once the need becomes apparent, meeting strangers can be hard. One of the things Hospice did for my dad was to translate all the medical info into layman’s terms for the rest of the family. They will take all the time you need explaining this “foreign” language and answering all the questions you want to ask (or don’t want to know but figure you’d better).
My mom was referred to Hospice a mere 2 weeks ago. She is 88 and chose at diagnosis in 2006 not to pursue active chemo, radiation, or surgery, so she has not been having major treatments and cycles. Her oncologist didn’t think she would last a year, but she had nearly 3. When he saw her a few weeks ago, he was delighted to see how well she was doing. Unfortunately, she has been feeling pain more often than not and it has metastasized to her lungs. She fell this morning and the Hospice nurse came out today (I don’t know if it was previously scheduled or they called for her), but her evaluation suggests that Mom might not have 2 more weeks. Had she not fallen, I don’t think it was that short an expectation, but help was available as needed. Finally, Mom accepted pain meds, which also fit the category of services Mom will never see a bill for. For the oncologist to refer all her patients may be her way of dealing with the fact that so little is known about cc that it cannot be predicted. Some people don’t have long after diagnosis and others live with cancer for years. I’m working on my third. Yes, it is a rare cancer. For Mom and I to both have it is so rare that genetic testing has been suggested. If my insurance will pay for it, I’ll have the genetic testing for myself and the kids my insurance still covers. But if insurance won’t cover it, I’ll have to consider the cost.
Sending hugs and prayers your way!
Louise
Hi everyone,
Mom is now on her 6th day of radiation. She is receiving Trilogy radiation. The dr told her not to lift anything more than 2 pounds, because if she ruptures her vertebrae that would be bad news! The oncologist is going to start her on a treatment plan at the end of August, which includes injections to strengthen her bones, and hopefully keep her from getting any more tumors on her bones, although that is still questionable if it actually does that. She is very very tired and a little nauseous, but the pain in her stomach, back, and groin are gone.
Mom had a talk with her regular oncologist and the radiation oncologist and asked them if they would promise to tell her if the time came that they weren’t able to do anything else for her. The radiation oncologist said that it would be a long time before that come, and her regular oncologist promised to tell her if that time came. She did mention that she encourages all of her patients to contact hospice. She said that way if the time comes that they really need them they will be set up with someone and not have a stranger come into their home. That kind of threw me for a loop. The dr said that many people think that hospice is for when people are dying (which is what I have always thought about it), but she said that she has many patients who are on hospice for years. Mom said that she wasn’t going to call them now, because she doesn’t need them, and we aren’t sure how long insurance pays for them, but she was glad to have had that talk with the dr. Of course I know that she is going to die someday, we all are, but it was still very hard for me to hear that conversation. Mom did tell the dr that she wasn’t going to do chemo anymore. It was just too hard on her. Sorry to ramble on and on. It is just nice to have someone to share my thoughts and feeling with that really understand how I feel.
Big hugs to everyone!
AmyHi, The oncologist was on it!!! Mom started radiation today. She will have 10 treatments. Both the oncologist and radiation oncologist said that this this is just another bump in the road. They said that the pelvis and everywhere else were clean, except for those couple of lymph nodes acting up. Keeping my fingers crossed!!
AmyDear Amy,
My husband had a tumor in his spine that caused pain down his leg. He had Cyberknife treatment and that took away the pain as the treatment deadens the tumor. I think the pain was gone the 2nd day of treatment. Prayers for your Mom….
Karenamylea….the one person coming to mind is JeffG who had radiation treatment for I believe, similar reasons. Others may have suggestions coming your way also but, in the meantime you might want to use the search function to read up on his previous postings. Try “radiation” and enter JeffG for author. Good luck.
Sending my warmest wishes your way,
MarionAmy;
I dont have any personal experience with radiation but a friend of mine had a brother with pancreatic cancer that had spread to any area on his spine.
I know that he went to radiation and that it did seem to help the pain. Sorry I dont have more to offer, but I’ll say a prayer for your Mom.
God Bless,
JamieWell, me again. Not great news today. Took Mom to the ER this morning, she was in so much pain. They did an MRI of her spine and pelvic, and found a lesion on the spine. It is small. Don’t know too much more right now, because we got this news from the ER dr. I will take her to her oncologist next Tuesday and go from there. Any ideas about what can be done? I think what she is looking for with this issue is some relief from the pain. They gave her some new pain meds. We were wondering about radiation. I know that it won’t take away the other lymph nodes that she is dealing with, but if it can relieve the pain from this spot, we would all be happy. They were happy that there wasn’t anything else going on, no new spots in her abdomen, but I wish that this wasn’t going on either
.Thanks!
Amy
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