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Many progressive hospitals are working with high dose vitamin C. Cancer Treatment center of America has a study going right now. My husband Dave went to a local holistic doctor who had him on very high doses 100 grams 3 times a week IV. Oral vitamin C does not work because high levels give you diarrhea, but IV it does not have this effect as the stomach is not involved in the process. It takes a long time for that to work and Dave stopped the treatments because we finally got into CTCA where he is getting a different treatment.
Wishing you the best. hope this info is helpful in your decision.
PatriceOh
what wonderful news Lisa. All the best to you. We’ll be here waiting for word from you and I will have 2 glasses of wine in your honor!!!
PatriceSo sorry Michele. I know reading this was difficult so writing it must have been horrible. I will be hoping for that miracle for you and some comfort for you and Tom as you face this difficult decision.
Patrice
Hi Patti- not sure if you have read any of my posts, but Dave’s CC is almost exactly the same as yours except he has multiple large tumors in the left lobe but nobody has ever really seen any bile duct tumor and he has never had any typical symptoms.
Hypercalcemia almost killed him which was what brought him to the hospital. That usually goes with lung cancer so they did a CT scan of his lungs and saw the liver tumor.
Initially they called it CUP but then after a second bx at Mayo they decided it “may be CC”. His blood work does not indicate anything. We went to Mayo but they said too many tumors for transplant and that “it” would probably go to the new liver. He then had 5 rounds of Gemzar and Oxcilliplatin with no change except pulmonary edema that again almost killed him. In fact he stopped breathing and I resuscitated him.
They stopped the chemo and said go home and wait and see. He felt quite good for awhile but then the hypercalcemia came back and he spent most of the time in bed from fatigue. Still no typical symptoms but the tumors were enlarging.
In January we went to Cancer Treatment Centers of America and it was the best decision we have made. Unfortunately you can only go there if you have a PPO insurance, and can come up with the co-pays, but the treatment there has been beyond incredible. They have provided a lot of hope and different options for treatment and actually care about you which is a big change from the Boston Hospitals. I can’t recommend them enough. Dave may not survive this but we feel we are getting the best and most progressive treatment available.
CTCA has 5 hospitals in US now with a new one opening soon in Phoenix. Hope this is of help to you and that you will stay connected with us here on this site as it has been a life-saver for us having access to other people fighting this horrible battle.
Our Doc at CTCA is checking out the new drug we found out about on this site….triphendiol. It looks very promising for reducing liver tumors. Sorry to be so long-winded but it can be difficult to try to go back and re-harsh people info, so thought i would make it easier by giving you a synopsis. Best to you.
Patrice
Hello all-Dave and I are back from CTCA where we met Matt and Val Wilson. We share the same doctor there and we asked him to look into this drug and hope to have some news about it next month when we go back. Dave was really bad when we got there with a calcium of 14. Feeling much better today after a new drug for the calcium and a week of chemo. Keeping up the fight. Hugs to all.
Patrice and DaveMy heart goes out to you Bill. Hold on to each other and to whatever your beliefs are and find strength in the love of your family and friends including all of us. Patrice & Dave
Hey Jeff-re: DMV, Dave always says “policy is the last refuge of a scoundrel”! Ha! I think judging from your post that it really might be better if the spouse’s had their own venting chat room. I know all patient’s do understand inside that this disease process is very hard on the caregivers but I still think it must be hard to hear us venting this way. I know Dave wouldn’t like it. But we caregivers have such a common thread. Each one of the posts I read made me feel so good as I wan’t sure if I was the only one thinking these things. It so hit home when Jilli said the only conversations are about his condition or treatment. Anyway, anyone who would to e-mail me outside of the chat room, I am happy to chat and we love you Jeff and our spouses and will stand by all of you!!
Carol and Patricia-It is a relief to me to hear you say these things as I am always hesitant to bring up anything negative because I have come to love my chat room family and don’t want to offend anyone. Dave has developed a short fuse but is not really angry but I feel guilty when I feel so sad that our life will probably never be the same again. I miss my husband as now he is so much my patient and I am now responsible for everything in our lives as he just can’t do anything anymore. Then I feel guilty for even carping to myself about that. It just sucks for everyone involved with this horrible disease, but it sure sucks more for Dave than me I’m sure. Thanks for bringing this up and letting me vent.
PatriceWe will think only positive thoughts for you and visualize the infection leaving John’s body.
Patrice & DaveWelcome Terri-we value everyone’s input and the voice of experience is always needed. So sorry about your Michael. My Dave is a fighter too. We will hold you in our hearts on Monday. We will be back at the Cancer Treatment Center of America for another round of chemo then. Take care and keep in touch.
PatriceSteve-Dave was on Gemzar and Oxilliplatin last summer and he also slept 14-16 hours per day. The naturopath at the Cancer Treatment center put him on L-Caratine, and amino acid 2 weeks ago and it did seem to help quite a bit. He takes 2 3x a day. He also had procrit to improve his hematacrit. Hope things get better soon. It is so hard to feel so exhausted all the time….for them and us. Patrice
