chiahuey19
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Genevieve wrote:Andrea,
Is your dad being seen at a large hospital? If he is interested in another opinion, Sydney seems to see quite a bit of CC and RPA would I believe be the biggest. Some of the doctors there have private practices as well if he prefers that.
Best wishes,
Genevieve
No.. We’ve moved back to Taiwan where we’re originally from. Which hospital do you recommend in Sydney? My father is now refusing to do any more chemo as the outcome wasn’t as good as he expected.
DukeNukem wrote:I’m really torn about alcohol. I like a pint of a good draft now and then or maybe two fingers of Crown Royal. But I try to limit it even more. I’m anxious about anything that increases the burden on my liver.Gavin – I didn’t find much about moderate use of alcohol using Search. Do you remember something definitive you may have come across? Thanks.
Duke-
My dad had 6 rounds of chemo but his tumor hadn’t shrunk as much as you did.. It was only 1cm. How are you going with chemo recently?Dukenuken.. thank you for sharing that, my dad’s also eating the stuff he likes now but he’s still on a diet. I admire your attitude, I’ve been telling my dad about your experience and it is a true inspiration for him.
kris00j wrote:Andrea, you might try getting in touch with one of the leading cc oncs in the U.S. if you think you want another opinion about it. I’ve never connected with Dr. Javle from MD Anderson, but I understand he is extremely approachable. Perhaps he can confer with your dads onc if you have concerns.
Good luck to your dad with the new chemo regiment.thanks for your advice Kris, I’ll try my best to get in touch with Dr. Javle after we finish these rounds of chemo. We’ll see how my dad goes this time, thanks again!
DukeNukem wrote:I’m a 63 year old male who was diagnosed in July, 2013. Tumors were found in my liver (19 cm), both lungs, and some lymph nodes. Since then I’ve had eight rounds of carboplatin/gemzar. The tumor in my liver has shrunk to 11.6 cm and the others have also shrunk. The only down sides have been fatigue, lower platelets, and some further degradation of hearing.My onc has taken me off carbo for a little while to help my kidneys.
Surgery and radiation are not in the mix for me, so I am going with chemo as long as there is improvement.
HI Duke my dad’s planning to change his chemo from gemzar/5fu to carboplatin/gemzar. He is getting his treatment in Australia and I know that the hospitals in USA is more experienced, do you reckon the dosage used would be slightly different, and might affect the result?
pfox2100 wrote:Hi Andrea. Fortunately and so unexpectedly towards the 7th cycle I was told I could have resection. I had a resection (trisegmentectomy) in January. The gemcis did shrink my tumor from 17cm to a few less. A big factor for me as to why I become operable was location and my large tumor and one satellite lesion were all in one lobe. I hope your husband responds very well to this next course of treatment and keep us updated.
PorterThanks so much for sharing your story, information that’s crucial to us. My dad’s tumor was in one lobe as well but it has spread to his lungs so we couldn’t risk it to do surgery. My best wishes to you too.
DukeNukem wrote:Not sure what you mean by primary or secondary CC.I’ve stuck with chemo. Diet is a funny thing. I had lost 33 pounds before I started gaining weight. Lots of carbs, proteins, and just plain fat (chocolate cake was a staple). Gained 25 pounds back and have brought greens back in.
Going to an MD who is trained as an acupuncturist and also trained in Traditional Chinese Medicine.
Not sure what is contributing the most, but I don’t have the luxury of conducting a controlled experiment. If it works, go with it.
As in the cancer started in the bile duct? My dad is on some chinese medicine as well, he’s also having L-glutamine. The doc said that it’s good if my dad’s condition is stable but we’re still looking for a cure.. is that possible?
Thanks for sharing your experience it’s helpful for us as we’re kind of lost after the chemo my dad just had.
pfox2100 wrote:Hi Andrea and welcome to the site. It sounds like he had completed about 4 treatements (or cycles?) of chemo? You mentioned that the 2cm on the lung look like it had disappeared, did they mention anything about the one in the liver? I too had a 17cm tumor in my liver as well and was on gem/cis for about 8 cycles. My ICC was contained in my liver and had not spread to any other areas of my body. I am sorry you and your family have to go thorough this. Please keep us posted. Is he going to continue the chemo?
PorterHi Porter. My dad completed 4 treatments of chemo and he just started another cycle last Monday. The first cycle of treatment was not as successful as we’d predicted, the tumor in my dad’s liver decreased only 1 cm from the original 18 cm. He’s now on gem/5fu and we’re planning to do 5 treatments this time.
Has your tumor shrink after the 8 cycles of chemo? and are you still doing chemo or you’re thinking about some other treatment?
Thank you for sharing your mom’s story, it’s inspiring for us as my dad’s recently diagnosed with CC as well. My dad had 4 rounds of chemo recently and his tumor only decreased 1 cm from the original 18 cm. Did your mom’s CC spread to any other organs other than the liver?
kvolland wrote:Andrea –
My husband has extrahepatic cc (Klatskin’s tumor) and we were luckily eligible for a liver resection. His tumor was not super large 3 cm x 2 cm x 2 cm mostly in the left branch of the bile duct. He did have some tumor encroachment on the portal vein, one positive node and some tracking along both a nerve and the lymph system. All of that is why we are doing chemo and now radiation…..doc is worried that he is a high risk for it to return.KrisV
Kvolland, my dad’s condition is quite different to your husband’s. The doctor said that my dad’s tumor started growing from the very edge of his liver, so it’s advisable that we’d do surgery if the tumor shrinks after chemo. Best of luck to your husband!
Lainy wrote:Dear Chiahuey since my husband did not have embolism I am not sure enough about it to advise you. I also want to chime in to your post to Duke in that there are no special diets to help CC except to stay away from fats and sugars which seem to feed cancer of any kind. I know that there will be more members chiming in on this for you. Again, best of luck.thanks Lainy, we’ve been avoiding fats and sugars as well.
DukeNukem wrote:I’m a 63 year old male who was diagnosed in July, 2013. Tumors were found in my liver (19 cm), both lungs, and some lymph nodes. Since then I’ve had eight rounds of carboplatin/gemzar. The tumor in my liver has shrunk to 11.6 cm and the others have also shrunk. The only down sides have been fatigue, lower platelets, and some further degradation of hearing.My onc has taken me off carbo for a little while to help my kidneys.
Surgery and radiation are not in the mix for me, so I am going with chemo as long as there is improvement.
DukeNukem. do you have a primary or secondary CC? and did you try any alternative cancer treatment besides chemo, like a diet? thanks..
Lainy wrote:Dear Andrea, welcome to our extraordinary family but sorry to hear about your Father. It is a good thing that the chemo zapped the lung tumor. My husband never had chemo but I feel you may want to ask the ONC about switching chemo or perhaps you need to give it a little longer. But, please don’t stop without talking to the Doctor. It is early morning here, but I am sure you will be getting some other advice on your post, hang in there as this CC requires a ton of patience. Wishing your Father the best and please keep us updated as we truly care.Lainy.. Do you think embolism would be a good option to go for?
DukeNukem.. sorry for the late reply, I’m just started uni and there’s many things to go through. Thank you for sharing your experience, that is very helpful and we’ll ask the doctor about using carboplatin/gemzar as treatment. I hope you go well with the treatment you’re having right now and soon be cacncer free.
Lainy.. thank you for the suggestion, we’ve talked with the doctor and he suggested that maybe we should get rid of the largest tumor in my dad’s liver first – using radiation with Yttrium-90 and we’re thinking it might give it a try.
Kvolland, my dad is going okay with chemo as he had not experienced too much side effects except fatigue. Could I please ask if your husband had similar CC as my dad? Thanks for your consideration and I hope your husband will be cancer free soon.
Marions, thanks
