maryanne80
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I forgot to say that his cancer has metastized to hisliver and 5 spots in his lungs so he is Stage 4. The most recent pet scan showed there are no new areas. This was done just before we started treatment here. mary Anne
My husband also was diagnosed with intrahepatic cc in July of 06 and was seen at Northwestern and Mayo. Their only recommendations were chemo for the rest of his life and he did not want the side effect so we did nothing until this month. Now we are in Mesa Az doing an alternative treatment of Insulin Potentiation Therapy where they use insulin to open up the cancer receptors and then infuse 10% of the normal chemo dose so it goes directly to the cancer. Joe has had no side effects but we won’t know if this is working until he has had 6 weeks of it. He is on his third week. it is not covered by medicare as far as we know and is very expensive but we will see if it is worth it. It is an alternative and a lot of people dont’ believe in it. A raw vegan diet also is used in conjuction with it. The docotr is Dr. Thomas Lodi and he has a website if you are interested. Everyone has to do what they think is right and what the patient can tolerate. We prayed hard for wisdom in our decision and we willl just have to wait and see. Joe still feels really well and has no surgery, stents etc. Good luck with whatever decision you make. This is a tough road but we are trying to focus on the wellness inside that is trying to beat this. God Bless Mary Anne
Hi Robin,
My husband Joe was daignosed in July 2006. He is 66. We live in Chiacago and went to Northwestern but his was metastisized to lungs and the only thing they had to offer was Chemo. We got a second opinion from Mayo in Rochester because they treat 10% of choligio cases a year. They concurred with Northwestern and as a personal choice since Joe has no pain we opted not to start chemo and just go with vegan diet and lots of prayers. So far he is doing well and we are in the warm weather for 3 months. We didn’t even think we would make it this far. The disease is so different for evryone but this website will help a lot to hear from other people and just to express what is going on with you. We wish you good luck and we pray for all the people on this website.Richard,
Sorry to hear Dawn is having troubles again. Maybe you would want to add a blog so we can keepup with her progress. My husband Joe was diagnosed with cc in July of this year and our blog is under Coburn. I read these blogs several times a week to keep up with the families and know what to pray for. It hleps to hear what other people are doing and what is working. Take care Mary anneMy husband Joe and I went to a self hypnosis class at the Wellness House in Hinsdale which has free classes in many area for cancer patients and their caregivers and their families. This was the first class we went to and it was wonderful. We have not been in a support group for cancer and there were 18 in the group. It was great to hear a little of their stories and so many of them have changed their diet to eliminate animal fat, dairy, sugar and salt. Several were also vegan as we are. That is the first people we have actually met that are following our regime and it was good to feel supported in that. They also have yoga, meditation, Tai chi massage and other groups. We have been going at this by ourselves for 3 months (of course our families and friends are supoortive) but it is good to actually see and talk to other people dealing with this. This website is great for people with cc and we have a different problem than other cancers but the one thing they were really strong about is that doctors are not prophets. Don’t let what they say rule your life. Don’t believe it if they say you only have 3 months because your body will start to shut down. Thought that was very good advice. Joe continues to feel good and two more of our children have decided to go vegetarian for health reasons.
Juanita,
what wonderful news. We know miracles still happen in this day and age , we just don’t read about them often. We will pray for you and Dan that this good news continues and you have quality time. God Bless Mary AnneI haven’t written for awhile but my husband Joe was diagnosed with cc July of 06. We have a blog on this website under Coburn. He had mets to the lung when diagnosed confirmed by lung biopsy and a large mass in his liver. They say it is intrahepatic. Second opinion by Mayo clinic confirmed with the only option being chemo. Since he is in no pain and healthy otherwise we opted for no chemo and enjoy the quality of life. We are following a almost raw diet of vegetables, fruits. whole grains, nuts and seeds. We have a free day once in awhile but have been doing this since diagnosis. Went back to oncologist at Northwestern this week and she agreed with our decision. Since there are no symptoms to treat, chemo would be only palliative and we want to enjoy the good days. We feel the diet and prayers are our best option. Joe has long wanted to visit the National Parks in Utah and we did that in October. We go to Bonaire every January to scuba dive and are still planning on that. His attitidue is great, we have a great support system but Jeff your suggestion about decreasing the stress is the one area we have not addressed specifically. Even tho he is 66 and retired day to day things cause stress and I know this is not good for him. We just heard about essiac tea and although he is not a tea drinker we will try it. Thanks so much for the support on this website. We feel fortunate that we have had so many years together but hope to continue our jouney togetheri f it is in God’s plan. We will keep all of you in our prayers and continue to keep in touch.
Hi peter,
Thanks for your post. My husband Joe has intrahepatic cc diagnosed two months ago but probably going on for over a year. He has mets to live and lungs. We have been using a strictly vegan diet called the Halleluia diet(I can’t spell it) but the website is h.acres.com. Is that similar to the diet you are on? I can’t find anyone who has tried diet control and the M.D.’s all dismiss it as having nothing to do with helping. We strongly believe that we have eliminated sugar ,animal fats and dairy for sure and that we hopefully are starving the tumors. Anyone else tried diet of any kind? when you are diagnosed people offer all sorts of helps and some are kind of strange. We know they are trying to help. Joe is going to start drinking a juice called mangostein today. It seems routine medicine doesn’t have a lot to offer if they cant resect the tumor. We will pray for you Peter and keep posting so we know what is going on. Mary AnneThanks so much for your answer angel. I don’t know if you read our blog it is http://www.joesinformation.blogspot.com I tried to get it on this website but can’t figure it out. anyway we saw the doctors, really the 3rd year fellow under Dr. Pitot (who we never saw). He recommended systemic chemo but if we wanted to wait a few months to start in order to take a few trips that would be Ok. Joe is still feeling so well we are questioning whether to do the chemo. The side effects would really change his quality of life and he still continues to have a queezy stomach as his only symptom.
I am so sorry to hear about your Dad. He is even younger than Joe and I know how hard this is for our children. We talked to our kids yesterday about coming to Bonaire this winter. We go there to scuba dive and Joe realizes this will be his last year probably if we even make it that far.
I am glad you are somewhere with hospice care. I am a nurse and value what hospic does so greatly. I will pray for Yia that things will be peaceful for him and that loving family will be with him. God bless and keep posting. We need some place to go to vent and get support. Mary anneWell we are back from Mayo and the doctor there said that he didn’t feel Thersphere radiation to the site was worthwhile. He is main ly recommending systemic chemo but said we might try a shot at chemoembolization directly to the liver tumor. Has anyone has that done? Joe is still feeling so well we aren’t sure whether to go ahead with chemo and ruin his quality time. It is a tough decision. For those of you who were not able to e resected. is ther anyone who didn’t have chemo or used diet to fight this cancer? Mary Anne
We don’t know who we are seeing. We have tests today and get assigned a doctor tomorrow. We may still be here on Monday depending on what they find and if they want more tests. My sisiter Cathy works up her and lives here so we are staying with her and she is taking us to the clinic today to help us find our way around. So sorry to hear your Dad is so sick. They think Joe has had this for at least a year by the size of the liver tumor but not diagnosed until July 26th. Keep in touch. We will pray for you. What is your Dad’s first name.l We like to pray by name. Take care Mary Anne
We are leaving for Mayo’s in Rochester today. Is that where you are. My husband was diagnosed two months ago and he is 66. He has mets to the liver and lung but no pain and only slight discomfort. He is not a candidate for surgery and we are trying to get a second opinion from the one at Northwestern. I will check this board and if you are still at Mayo’s maybe we can meet up. Our appointment is tomorrow and Friday at the Gonda bldg. If you want to call me my cell is 815 531 9573
My husband was diagnosed with intrahepatic cc July 23rd 2006. We are still in the process of evaluating. He also has mets to the both lungs. We are currently at Northwestern but trying to get a second opinion from Mayo’s. No appointment yet. So far what we are doing is eating almost totally raw with fruits, veggies, whole grains, nuts and seeds. Our daughter told us about this program. It is on a website called h.acres.com. Of course the medical doctors don’t think this is necessary and say his immune system is fine. My husband Joe is 66 and has had a queezy stomach for almost a year but they couldn’t find it. Now, he doesn’t even have that symptom but his liver tumor is not resectable and quite large. I am glad to see that the doctors don’t know the length of time. We were told not to ask. Joe is very healthy and has a great desire to live to walk our last daughter down the aisle. I love this wedsite where you can be honest and hear how others are doing. keep on fighting
