dianamartin65
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My husband’s doctor wouldn’t let him do it. He has 11 cm lesion in one side of liver with multiple other lesions. He said it would be too dangerous, but I am willing to hear from others about this as well, Diana
I am so sorry to hear of your uncle’s passing. My husband has bile duct cancer and we have a 21 year old son with autism. I also know the pain of this disability and would like to send you something special in the mail. Please e-mail me personally at dmartin65@verizon.net.
Sending you prayers…Diana
Hi Everyone,
My husband with the CUP diagnosis (90% sure it is bile duct cancer). Has been on folfox and oxilplatin ( 10 rounds). The doctor is suggesting that he go on a maintenance of folfox in the form of a pill. Has anyone ever done/heard of this?
Also, the needle and tubing fell out of his port in the middle of the night (he has a cartridge of chemo that runs during the night every other week). Chemo and blood leaked out – he complained that he felt that he thought it had loosened at 10:30pm. So, it leaked for about 5 hours before it totally came out and I turned the machine off. Ever happen to anyone? The office is saying that because he was re-connected the next day, that is the best they could do?
Comments, please! Thanks, Diana
Hi Olga,
My husband has been on chemo (folfox and oxiplatin) every two weeks since January. He has a slightly different diagnosis of CUP, but they are 90% sure it is cholangiocarcinoma. We were afraid of chemo side effects at first, but he seems to be doing fine except for muscle aches and fatigue. He also has H pylori and has not been treated with antibiotics because the doctor said that the mixture with the chemo would make him sick, so he is one pantropazole (simialr to prilosec) and that has helped. My husband is in stage 4, met. to the bile ducts and lymph nodes. The chemo has reduced the largest tumor in his liver and has been worthwhile. He has been able to go back to work part-time and although he takes pain medication, it is bearable. If you find that the first treatment of chemo makes your husband sick, they they can alter the amount. It is still very much an art when it should be a science!
The study is at The Mayo Clinic and it is a registry of bile duct cancer patients. You can call Nasra Giama at 507-538-0097 and she can give you more info. I know this is a very confusing time. We are there to help you through it, Diana
Hi – The link to the article is:
I saw this article and it discusses bile duct cancer and the study they are doing. Dr. Rosenberg is an amazing cancer specialist at NIH. My husband was in a trial with him last summer. Maureen (my friend whose husband has melanoma)
http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/doctors-use-patients-immune#.U218JiL-18U.email
— This message was sent by Maureen038@aol.com via http://addthis.com. Please note that AddThis does not verify email addresses.Concerning travelling:
I have been told about Angel Flights which supposedly helps with transport costs of patients with serious illnesses. Also, see if the hospital has any free lodging associated with it. I know that Johns Hopkins has free housing for patients and low cost rooms at hotels.
good luck!
Does anyone know if oxaliplatin and cisplatin can be substituted for one another? I think they are closely related.
My husband has had oxaliplatin with good results. However, the combo of the folfox, oxaliplatin and leucovorin has caused extreme cracked skin on his fingers. Anyone have any suggestions as to what he can use. Eucerin is useless.
Hi Marion,
A person is diagnosed with CUP ( cancer of unknown primary) if the physician is unsure where the cancer originated. Sometimes additional tests (like ones performed by BioTheranotics) will try to determine if the cancer either started or metasticized to the liver. Anyway, it is good to know the origination of the cancer because that determines the best treatment. So, based on testing, an educated guess is made. That is why we started with folfox instead of gemzar (gemzar and cisplatin being the preferred choice of chemo for bile duct cancers from what I read). But I believe gemzar in in my husband’s future. I’m not sure liver surgery is. We’re actually a little afraid of surgery anyway and just starting treatment. Thanks for asking…
You might try NIH, Cancer Center and Johns Hopkins while you are in the area. If you call me at 301-963-4702 I can share our experience with NIH in Bethesda, MD.
