carrieann
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Prayers and thoughts are with Jeff’s family. Please know in your hearts what a wonderful person he was to so many of us that only knew him through this site. Such an inspiration! I have shed a tear this morning, knowing of his passing.
Yes, it took a while for my mom’s BR to come down, she went through 2 stents, and 2 bags before they gave her the ok to resect, which when they opened her didn’t continue with because of the cancer metastasizing. After the unsuccessful surgery, she had the metal stent inserted and this seems to be working well. This went on from July to September. I think if they were able to get the BR under control quicker, the surgery might have been a go? Can’t look back and second guess…we just need to move on and help her with the treatment she is now receiving. Her platelets are now low and she is having severe skin reactions to the Tarceva, so her dr is going to start her on treatments every 3 weeks instead of every 2 weeks. I don’t know if they are giving her anything to improve her platelet count or not…need to ask her this. I pray for your mom and family, I and everyone else on this site understand what you are going through, the fear of the unknown…but try to learn all you can to be an advocate for your mom. I will be thinking of you!
Hi QuanYinprayer, I understand your nervousness, and am sorry your mother has to go through this, it would also take many pages of writing to describe my feelings watching my mother go through what she has been enduring. But, she too had many stent replacements, before she received her permanent metal stent, with this in place, her billirubin went to 1, which from what I understood was normal. She had the drainage bags also throughout the months, but with the metal stent in place, and my mother’s insistance on removing it, she no longer needed the external drain. I know she was continually told the billiruben needed to be down before they would do chemo (ideally below 3), I don’t know if it depends on the doctor or what. She will be going in for a follow up discussion with her doctor this Friday, I am curious to see what he will recommend for continuing treatment. She has been doing this chemo treatment since October, and I know if it weren’t for us, she would stop. She is not a big fan of it, which I really don’t know that anyone is. She wants to discuss doing treatment every 3 weeks, instead of every 2. I don’t know what this will do to the tumor, but I am standing by her decision. I think that was my biggest hurdle, to let her make the decisions, it is not my right to do that and all we can do is be there for her! In the mean time, my sister and I are trying to plan a trip to Hawaii with my mother. It is someplace she has always wanted to visit, and I told her we would take her, so we all have something to look forward too!
Thank you Lainy for your reply, we are in NC. My mother is scheduled to visit an oncologist in 2 weeks, and it just isn’t sitting right with me, this type of therapy keeps me up reading and writing, there is an inner feeling that this is what my mom needs to do. How would I find a clinic? If I were to look online, do I search Naturalpathic?
thank you everyone for your replies. We have had a couple pieces of good news. We might have a buyer for my mother’s house, this has been a big concern for us, we have been having to keep up 2 households and it has been wearing us down. My mother will have the option of moving in with us or finding a small apartment in town. She also has an appointment with Disability today, thanks to MaryLloyd’s advice I wrote our congressman and he has stepped in on our behalf to get my mother’s application through the “red tape” and approved. So now she will be able to continue with Medicaid. She did question me that if her cancer is inoperable does that make her automatically eligible for Medicare? Does anyone know, I will research today on that. Also, I have gotten her to start juicing with me. We had carrot/beet/apple/flax seed oil last night and she actually enjoyed the taste. This is a start, now if I can convince her to give up the sweets…
Again, thank you everyone.It has been awhile since I posted, but have been reading everyday, if not 2-3 times a day. An update on my mother: She was scheduled for a liver/bile duct resection, bile duct reconstruction July 14th. I can’t even begin to tell all of you how excited she was to know they will be able to go in and get the mass out of her, and for her to continue on with a “normal” life. She was scared but determined to get in and out and do more than her doctors would ask of her during recovery. Well, I got a call too early into her surgery, the doctor was out and wanted to talk to me. The cancer has metastasized. She has confirmed spots on her liver and 2 small unconfirmed spots on her belly wall. The surgery was stopped. Her doctor is refering her to Duke’s biliary oncologist for palliative chemo and to have her plastic stent removed and a metal one inserted. I hate that word “palliative” addressing the symptoms, but not removing the cancer. I don’t know what to say or do anymore. They are giving her the average of 9-12 months, but could be up to 2 years. If you were to look at her, you wouldn’t know anything was wrong. The only external symptom I see, is her getting more tired as the day goes on. I have been researching juicing/cleansing, supplements and eating raw veggies/fruits. It all makes perfect sense to me, but she doesn’t want to hear about it, she just keeps wondering how the doctors could have told her she was an excellent candidate for surgery, and then to wake up and see that only a couple of hours had past since she went in to the operating room. Duke, these are suppose to be some of the best doctors in the country. After months of ct’s, mri’s, liver protocols, how could they have missed these “other” spots? She is just going to wait and see what is said about chemo. I don’t know if she understands it all, and that researching and eating right and doing everything she can do on her own will improve her chances. My biggest concern is that we live in the country, she lives by herself, very much to herself and is home all alone all day until my son and I stop by after I am done with work. She is not the type to ask for help, or go seeking for someone to talk to. All she does during the day that I know of is review her financial papers, filling out the info needed for Disability and Medicaid and every other place we have found to find financial help. This I know is draining her, the little I have done has drained me! What do I do when she won’t listen to me, or won’t take my advice to heart. I hate for her to be sitting around in her house dwelling on finances, and waiting on what her doctors are going to suggest next. We haven’t even heard yet when date for the metal stent to be inserted is yet, or an oncology visit. Seems like they take their sweet time. Time is not what we have right now to waste…
Thank you everyone for your replies and advice. My mother’s stents started failing last week, they admitted her, removed the stents and placed an external bag. This apparently started draining “too well”, she was ridding more than she was taking in, thus dehydrating her. Her count started going back down yesterday, so they released her and she is back home for the time being. I have contacted the American Cancer Society, they have assigned me an advocate and gave me some numbers to call for financial assistance. They also informed me not to talk with the hospital social worker, because if I do, then my advocate wouldn’t be able to assist us?? This is way too confusing for me…just want to find help with paying the bills that are now coming in without my mother losing her house in the process.
