November 4, 2007 at 2:14 am #17428
Thank you so very much. A friend of mine was trying to locate this service on the web but was unable to do so! Her Grandmother was able to use a flight to travel for her colon cancer!
Thank you so very much!
LanaNovember 4, 2007 at 2:08 am #17427devoncatParticipant
You might want to look here http://www.corpangelnetwork.org/
to see if they can help with your flights!
Best of Luck.
KrisNovember 4, 2007 at 1:57 am #17426
To all of you that have e-mailed me back, thank you!
I am very excited to tell you that Dr. Canady has reviewed my father’s case. He says that he will be able to do surgical resection. Hopefully we will fly to Pittsburgh this week!! He will first do an embolization on vessels that feed the cancerous part of the tumor. He will then bring us back in about 1 month for resection. I am so excited, scared, a little reserved…and hopeful! I will keep all of you posted. Pray for us!
With prayers back at you,
LanaOctober 28, 2007 at 11:30 pm #17425maryanne80Participant
IPT is Insulin Potentiation Therapy. It is alternative treatment and you can read about it if you google those words. It requires a port and IV administration and takes about 2 hours. We went to Phoenix for three months last spring and worked with Dr. Lodi. He did IV Vitamin c, ozone therapy, nutrients and chelation along with the IPT. He is also a strong advocate of raw vegan diet and juicing and cleansing so it is a radical change if you haven’t tried any of that. We were also partially raw vegan for 9 months before we went. Once we came back home to Illinois we found a doctor in Burr Ridge who does IPt and now Joe is getting it once every other week. Not covered by Medicare but partially covered by some insurance. We chose that because Joe didn’t want the side effects of regular chemo. He had RFA on a tumor that was really active in his liver and was 5 cm in size. As far as I was told, that is the largest they can do at this point. He had embolization the day before to cut off the blood supply to the tumor and then RFA. He has two other liver tumors too big to treat but they are necrotic on the inside. He also has 5 small tumors in his lungs that they haven’t addressed at this point. They have shrunk since being on IPt. Hope that helps. Mary AnneOctober 28, 2007 at 7:40 pm #17424popebaillieMember
Thank you for sharing your info. I read your family blogs. I am interested to know what is IPT? How was Joe offered RFA- seems as if my father was not a cadidate due to size of his tumor. What size was Joe’s tumor when they did that?
God has truly blessed you,
Many more blessings for you,
LanaOctober 27, 2007 at 8:32 pm #17423maryanne80Participant
My huband Joe has intrahepatic. He has mets to the liver and lungs. and I thought we were lucky he didn’t have extrahepatic because I thought he would have less chance of blockage and jaundic.e His only symptom has been a queasy stomach. He was diagnosed in July 06 so we are 15 months now. He opted for no chemo because of the side effects and he was feeling so well. In March he decided to do IPT which is alternative and uses only 10% of the normal chemo dose. You can read our blog to get more details http://www.joesinformation.blogspot.com or we are under family blogs – Coburn. The IPt he got was not covered by Medicare so we have a large debt but it did reduce the tumors and he had RFA on an active liver tumor that developed last spring. He is doing well and now gets IPT only once every other week. He is on lots of supplements and also lo dose Naltrexone which is supposed to boost the immune system.We have also been on a vegan diet since diagnosis. We feel blessed that he has done this well and know that prayers help a lot. We will pray for you and hope we get more answers soon. God Bless Mary AnneOctober 25, 2007 at 7:59 pm #17422colleenParticipant
Popebailie -The doctor that has done my husbands treatmemtns at Johns Hopkins is J.F. Jeff Geschwind. For his first three embolizations they used cisplantin, doxorubicin and mitomycin. His fourth and last treatment I know they mixed up the drugs some, but I don’t know what the combination was. As I said in an earlier post, unfortunately my husband has an abscess and infection now that is a rare complication (4 – 6%) of the treatment. Let me know if you would like any more information. – ColleenOctober 25, 2007 at 7:57 pm #17421robynharMember
My husband also, intrahepatic diagnosed early 07, metal stent for his jaundice at that time. so far so good with that. He has mets to the liver, a 15 plus cm tumor with some buddies in there….so the docs everywhere TD’d us for every surgical procedure. Not that we did not try, going from Tac Gen to University of Wa to Huston MD Anderson. Clinical trials are all that is left. After that trip his regular onc. offered some Tarceva which is not known to work for CC and very spendy. I think he just wants him on “something”. They do tend to generalize in medicine and with CC we are lumped in with other similar cancers for lack of knowledge. He never took the Tarceva, the pharmacist gave us a printout on it that was not from the pharmaceutical company and it was astounding in side effects, especially for a person with only 20% liver function. He is very up and around altho loosing weight. He is now on a high alkaline diet and ,yes, wheat grass shot every day. We know it is only a matter of time, but isnt all life like that. Sieze the day !!! I tell him that every morn and he laughs. He is slipping a bit here and there, but I am so glad that as yet there is no pain. The only meds he takes are to help with sleep. I dont know why cancer patients dont sleep well. I think Bob, the tumor, has nightly parties in his liver……October 25, 2007 at 3:00 am #17420popebaillieMember
Who is the doctor and what chemo was given during your husbands treatments.
ThanksOctober 23, 2007 at 8:47 pm #17419julesParticipant
My dad had intraheptic which was apparently wrapped around the portal vein, he had one aborted resection, when we sought a second opinion we were recommended to consult with Prof Lodge who is well respected in the field of liver surgery who performed a successful resection. The surgery was complex however Peter Lodge is well known for attempting surgery and offering hope with such cases. I would recommend getting a second opinion and be prepared to travel to find the right person.
I don’t know if anyone from the UK was watching ‘Holby City’ this evening on TV – it showed a similar case of cancer that was resected using a patch on the portal vein. Programmes like this have consultants to advise them regarding medical accuracy, the procedure was groundbreaking and complex however it was achievable. When we spoke to Yuman Fong in SK he admitted that resections are possible with artery involvement – just complex and risky. Half the time I think it is just about finding someone who is prepared to make the effort and isn’t dismissive just because it is cancer and ‘it will probably come back anyway’. Keep going until you find a Dr who is prepared to go the extra mile for you.
Good luck, JulesOctober 23, 2007 at 6:14 pm #17418scragotsMember
I was diagnosed with intrahepatic cholangiocarcinoma on 12-29-06. I had surgery (right lobectomy and cholecystectomy) on 1-29-07. My tumor was 5.5×5.5cm. My doctor (fabulous, at IU Med Center in Indianapolis) said that she has actually excised tumors around 10cm size. I wish the best for you and your dad. I’m afraid I can’t offer you any advice about how to proceed as my case was “incidentally” found “early”, so I was offered the surgical choice. So far, so good. I have another CT in December and continue to keep my fingers crossed that the surgery continues to work. Many people on this site will have both of you in their prayers, me included.
SueOctober 23, 2007 at 5:18 pm #17417
I feel your pain!!!! It is very difficult for me to to try and understand the research as #1- I believe that being the intrahepatic cc is even more rare than the extrahepatic…difficult to know what is effective or not due to the control group. When doing research one has to look at the number of people being studied as well as the variable factors that may/may not be involved. Due to the limited research and few number of people being studied, I feel that a lot of times the 2 groups are clumped together. #2 I wonder if there are people that are misdiagnosed and diagnosed with primary hepatocellular carcinoma…or liver cancer.
Food for thought!
LanaOctober 23, 2007 at 4:42 pm #17416colleenParticipant
Lana – My husband has intrahepatic, he has had his stents for 7 months, basically since diagnosis. As with your dad, his couldn’t be in a worse place and we also have artery and vein involvement. Right now we are battling an abscess and infection in/on his liver, this is a bad complication from his chemoembolizations according to his doctors. Right now we are taking things ond day at a time, with so little information it only makes it that much more frustrating. – ColleenOctober 23, 2007 at 3:40 pm #17415
Thanks again Joyce,
Dad had to have stents- apparently it blocked off his bile duct, was in both portal veins and hepatic artery, thus the doctor saying it couldn’t have been in a worse place. I am frustrated by the lack of research regarding cc- I feel that there is not a lot of monies or emphasis due to liver involvement. When we hear liver cancer, some may think of people that are self destructive…alcohol, drugs. I know this as I work with these people daily in ER. I am currently doing some research re; natural therapies, would like dad to try wheat grass juice. Reading a lot about the ph of body, keeping it more alkaline, etc.
LanaOctober 23, 2007 at 3:13 pm #17414jmoneypennyMember
My mother had intrahepatic – from what I’ve learned and from my experience, I think there are usually less noticeable symptoms with intrahepatic. No need for stents or drains, usually, as the ducts outside the liver aren’t usually affected. My mother never had jaundice until the very end, had some pain and fatigue and nausea but it showed up pretty late and it wasn’t too bad until the end.
I’ll write more later if I can think of it – it makes a difference if there are metastases, too.
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