jamie-d
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Amy;
I am so sorry for your loss. I know the next days will be difficult. Just remember that your Mom will always be with you. Take care of yourself during these next days, especially if you are running a fever and ill. I’ll keep you in my prayers. Take care and God Bless,
JamieKris;
You must be so frustrated. How are you feeling? Have you ever tried Guar Gum to help with your diarrhea? My Dr for accupuncture started me on it and it has helped alot. I get it at the health food co-op and take 1 tsp in water a day. You need to mix it quick and drink it right away because it starts to gel. I am also on a supplement called GI Integrity. It has l-glutamine in it. It is supposed to help the lining of the intestines. There is also a powder that the nurse at the co-op told me about that has the same benefit. It is made of pea protein. Let me know if I can help in anyway. Hope you get your scan soon. Take care and God Bless,
JamieMary;
I really liked Louise’s post. It gives you two choices, hers and her Mothers. I am 52 and was diagnosed 20 months ago. Took option of chemo when I was diagnosed vs doing nothing. Had reduction in size of tumors and ended up having a resection last June. This June the scan showed it is back with a 2cm tumor in liver and spread to both lungs. I was given option of doing nothing and come back in 2 months for another scan or start doing same chemo I was on before Gemcitabine/Xeloda or try just one of the drugs. I opted for both drugs. I want to fight this as hard as possible. Unfortunately my body is not cooperating. I have had to drop one of the meds and start taking shots to boost my white counts. I won’t say I am feeling good, but at least I have time with my kids and family. At this point I plan on pushing my Dr or even changing Drs in order to fight this as much as possible. Maybe at some point I will find that the side effects outweigh the benefits. I go for a scan on July 31st. I’ll see how that goes. We all have to make our own decisions on what we want to do and how much we want to go through. I am still in fight mode, willing to try anything to add time with my family. The Lord only knows what my journey will be with this awful disease and when my time in this life will end. So I take each day one at a time and each decision one at a time praying that it is the right one. Maybe it would be worth getting another opinion before making your final decision. Good luck with your decision and take care.
God Bless,
JamieDeborah;
I am so sorry for your loss. What a blessing that it was a peaceful passing.
I will say a prayer for you and your children during this difficult time of loss for your family. God Bless,
JamieMarion;
My great fear with the talk of the new government run health care is that those of us with rare cancers will not be able to get treatment. It wont be cost effective. I was given statistics that chemo didn’t really work on cc, only 30% had any results and that was just keeping it from growing as fast. That was at Mayo. Obviously, some of us have had results and have seen shrinkage and have outlived predictions. If the bean counters feel that we are not worth the cost, we won’t be able to get it. As a nurse, i have seen how the administrators are often only interested in the bottom line, not quiality of care. If these are the type of people in change I am afraid. We do not have the numbers that other cancers do or the media involvement. We’ll be the first ones cut I’m afraid. And we can forget any new experimental treatments. Just my little rant and fears for what may come. God Bless,
JamieMarion;
I think it sounds like a great idea. I have not had a problem so far with the insurance actually denying anything, it is just what they charge me, my deductible keeps going way up each year and my monthly premium is getting way too high. Since we are on an individual policy and I can’t get insurance from anyone else now, we are at their mercy. I never know however if something will be approved or not. I think if we could get the board to start a thread for your idea, with appropriate subgroups, ie, chemodrugs/medicines, radiology options/ surgical procedures, etc it would make it easier to both fill in and then collect data. Even before it gets put together someone could check the area they are having problems with denial and at least get some info to back their claims. My thoughts would be that we should include type of insurance you have, treatment received, and maybe where you have gotten treatment. I think that maybe some insurances are less likely to deny if they know a hospital uses the treatment regularly and if the Docs are willing to appeal for their patients. These are just some thoughts off the top of my head. I would be happy to help as much as I can. God Bless,
JamieDear Danielle;
I just wanted to let you know that I was thinking of you and praying for you. I hope that the days and nights are getting easier for you and that you have found at least a little peace and comfort. Jim would not want you to pray that you would die. He would want you to find peace and happiness in this life again. I know that is what I hope and pray for my family when I am gone. I don’t want to be forgotten but I want them to be able to go on with their lives and live and be happy. Live for me for the days I won’t have and truly appreciate every today that they have. I pray that you are a little bit better. Take care and keep us updated on how you are doing. God Bless,
JamiePeanut;
I think that all of us on this board can understand your hatred of this cancer, whether we are patients, husbands, wives, brothers, sisters, son, daughters or friends and caregivers, We all HATE this disease. But the wonderful thing is we have each other to lean on, support and learn from. You will find other daughters on this board that know exactly what you are going through. I hope they post soon so you can discuss it with them. In the mean time, I hope that I will do. I don’t know how old you are, but as a Mom let me reassure you that your Mom will always be with you. Everyday that I fight this darn cancer I do it with the thought of being with my kids as long as possible. Wish I could give you a hug in person, but since I can’t let me send a Mother’s warmest thoughts and prayers your way. Let us know how you are doing and if there is anything we can do. God Bless,
JamieWell here’s my update. No real problem with the Neulasta, some pain, but nothing I couldnt tolerate. Raised my WBC to 8.8 the following week, down to 5.5 the next week when I went for chemo. Went to my local clinic for Neupogen injections Tues-Fri last week. Had a problem with my arm and nurse had me see a DR on Fri, ended up with ultrasound to rule out blood clots and now on antibiotic for cellulitis. Did WBC it was at 4.3. Today went back to Mayo was able to get 2nd dose of Gemzar, WBC was 3.6. So at least it is working enough that I could get the chemo but not keeping it up as well as I would have thought. Now I checked with the pharmacy to see if insurance will cover it if I self inject from now on. They will cover a part of it but I just found out for 2 weeks my copay will be $461!!
I told my husband I feel like giving up. Good grief. Now I am worried how much I will have to pay for last weeks injections at the clinic and I am set up to get the rest of this week at the clinic. There is always something it seems. It’s not like we don’t have enough to worry about/fight with this darn cancer, but then we have battles with insurance, poor nursing care like Kris got, increasing costs for the insurance and copays, or cost of Cobra being so high after someone has to stop working. Ok Lord, we, those of us fighting this rare cancer that plays dirty and fights unfairly need a break!! Sorry felt the need for a little venting session too. Hope everyone is having a better day than me today
. Tomorrow will be better.
God Bless,
JamieHi Kris;
You are so right about nurses. Mind you I was an RN for years when I lived in California but haven’t practiced since we moved to the Midwest. I have been appalled at some of the things I have seen and experienced. You have every right to be upset and angry about the care you have, or should I say have not received. I would write a letter to the head of the hospital to let them know what went wrong. There is NO EXCUSE. Enough for my rant, good luck with the drive and PET scan tomorrow. Let us know how it goes.
God Bless,
JamieDear Peanut;
I am so sorry to hear about the loss of your Mom. Like Lainy said Mom’s never leave us. She will be with you always. Your family will be in my thoughts and prayers during this most difficult time. God Bless,
JamiePeanut,
I am so sorry to hear about your Mom. At least they are able to keep her comfortable. As a patient, I think that is one of our fears. As a Mom myself and a victim of this awful cancer also I can tell you how much my children mean to me. I know that your Mom knows how much you love her and that you are there with her. Just be with your Mom during this time and try to enjoy every moment. I love it when my kids will bring up things from the past that we’ve done and we get a chance to remember them. I’ll keep you and your Mom in my prayers.
God Bless,
Jamie
