my dad’s cholangiocarcinoma..
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Dukenuken…..THANK YOU…..for a great ending line to another great response post. I think some of your way of thinking is spilling over onto me and it’s making me actually happy…..and not so fixated on those statistics. The one good thing that my current onc said to me during the initial consult, was, “Those statistics don’t mean anything in regard to you….the only thing that matters is where YOU are.”
And…thank you for sharing that you were eating such “horrible food”.
I had a very good supper….but craved something sweet…and had a piece of Danish Kringle…almond filling….and I have to say, I enjoyed each nibble, as I made it last for quite a while. I agree about the quality of life. If there are things you enjoy,…..you should let yourself have that option. It is a personal choice…..and when you have those guilt food moments…do them with no guilt and enjoy! The only thing I don’t allow myself is alcohol..which is funny because I rarely drank…maybe one or two drinks a year…so not really a great problem on my part. My dosage of gemcitabine is nominally 200 mg (as long as my platelet count is >100,000). It’s lowered if the platelets are between 90,000-100,000.) I think it also depends on the patient’s weight.
As far as diet goes, you should be eating what non-CC healthy people eat. Low fats and sugars, lots of veggies. Exercise prudently. Could I do better? You bet! Will I? Probably not. To me, this is a little different aspect to “quality of life.” Right now I am eating Fritos and sour cream dip, washing it down with a Coke. Will it take a few minutes off my life? Yes. Does it taste good? Yes. Tomorrow it will be cucumber slices instead of Fritos and chamomile tea instead of Coke. It’s a choice – my choice.
Onc said we sticking with gemcitabine as long as it continues to control the tumors. Plan B will be Folfox with Plan C looking for a Phase 1 trial.
I’ve said it before. I beat the odds to get this cancer and I’m going to beat the odds again by outliving the statistics. If I stop believing that, it’s over.
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!
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.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.
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.
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.
Porterpfox2100 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?
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?
Porterkvolland 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.
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
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