Puzzled about a few things
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venkat,
Thank you for your thoughts. We have also been fighting this since April of this year. I’m sorry your friend is in this boat also. Do you know if chemoembolization has been presented to him as an option? This is what is next in our line of treatment. As this is done by an interventional radiologist, maybe he would be able to place external drains at the same time?? We will definitely inquire about that. Anything to keep that bilirubin down.
DianneKris:
I hope that you’ll get a second chance at resection soon! I’ve begun to realize how much that hope means..dmj4ctj:
I just thought I’ll chime in. My friend who’s 58 years old has been battling CC since Apr 2012. He’s not a LT candidate due to size of the tumor, and surgery is ruled out at present because of portal vein involvement.
We are also hoping that the chemo will shrink his tumor and relieve itself from around the portal vein to where resection is an option. He’s getting chemo (only a couple of sessions of gemcitabine so far) at Moffitt, and they have never mentioned this as a possibility. However, when we went to see the doctors at Mayo Jacksonville, they asked us to go ahead with the chemo, and said they would be willing to review his progress via the CT scans to evaluate surgery as a possibility.
As to your other concerns, my friend was also denied chemo initially for an aggravating period of a month on account of elevated bilirubin counts. In his case, what eventually helped was repeated tries at stenting, first internal ones that slipped into the intestines, were removed, then replaced with external drains, one on each side of the liver. Those leaked twice, more delays, but finally now, the external drains seem to be holding up (touching wood as I type this)
Most recently he was held off chemo due to elevated creatinine levels. It’s been a frustrating road for him and his wife, and I wonder at where they get their strength and resilience from.
Stay strong and as others on the forum have advised, don’t hesitate to get second and third opinions, and continue to ask questions. Never hurts to ask.. write down the questions as they pop in your mind in the wee hours of the night, so you have them handy to barrage your husband’s doctor with!
I wish your husband the very best.
venkat
Kris, you make a lot of interesting points. I pray you are able to get your surgery soon. It is heartening to hear that your surgeon isn’t rushing in when he doesn’t feel it is appropriate to do so at this time. Having been an ICU nurse, I saw the results of poorly considered and sometimes poorly executed surgeries. This is something you absolutely don’t want! Sounds like your surgeon is wise and cautious and I really respect that.
I’ve been following your posts and you really have had a lot of ups and downs in your journey. I very much admire your positive attitude throughout it all; it’s all too easy to get discouraged and let the black cloud take over. I know–we fight it every day. Just to get through one day w/o tears would be an accomplishment for us.dmj4ctj:
From my personal experience: I have been denied chemo when my bilirubin was 4 and I have never been jaundiced. And different chemos work better on different tumors. Some better than others. Oxy worked wonders on my tumor.
When I was diagnosed, I was told the tumor was unresectable, but if it shrank, we could revisit the decision. I was finally told it was resectable, but unfortunately I ended up with pneumonia so the resection was cancelled. The tumor grew just enough and metted to the lymph nodes so I was denied surgery again. So, to answer your question, yes, chemo can be denied or adjusted based on bilirubin. And prognoses can change. Unfortunately, I have no knowledge of stents, so can’t help you there.
If I were you, I would decide how much I like the dr. Based on his decisions, do you feel comfortable with his answers? If not, get copies of the latest couple of CT scans, etc., blood work and whatever else you need and go see someone else. Then make an informed decision based on the new dr’s opinions.
Personally, I do not like my onc. I have lost a lot of faith in her. Unfortunately, I have her pump implanted in my abdomen so it would be very difficult to change drs. I LOVE LOVE my surgeon, even if he does say right now surgery is not an option. I’m hoping that in a couple of weeks my new CT scan will show I can have surgery. If not, we try another chemo and try to get things to shrink more.
Good luck with your decisions and keep us posted.dmj4ctj, gee I wish I could be of more help but all I can tell you is that Teddy’s stent (external) was right below his waist. Good work on getting a second opinion. You can even get a 3rd if needed for your own peace of mind.
Thanks for both your quick replies! Indeed, I am very happy he got the chemo and his bili came down and hopefully will continue to go that direction. Doctor said there had to be some shrinkage of tumor from bile ducts or we wouldn’t have this positive result. Thanks Marion.
Lainy as far as stents go, I’m not sure I know where external stents go?? The way one of the gastroenterologists explained it, the blockages are very high in the biliary tree, stents go lower (in the trunk or lower branches so to speak). We asked if an interventional radiologist could help, but both gastroenterologist and oncologist told us no. Doctor told us that the next step would be chemoembolization.
BTW, we did get second opinion from an oncologist who specializes in pancreatic/biliary tract cancers and she also felt that surgery is not an option as the size and location of the tumors would require such an extensive resection that it would be impossible to leave 20% of the liver which is necessary for life. Just wondering if the tumors shrunk???dmj..these are my thoughts: I have learned the following: chemo medications are broken down by the liver which helps “clean” the blood by removing medications and toxins. When the liver is compromised as it so happened in your husband’s case, Doctors may adjust chemotherapy drugs in order to stop the increase of bilirubin. I would be happy with the doctor’s decision as your husband’s bilirubin level dropped significantly.
In regards to your second question: not all tumors are resectable as the location and invasive nature of the tumor, or personal health status may prevent surgery. Although, resections, potentially, can be curative, not everyone is eligible for this type of surgery. At this point, I prefer to define CC as a chronic disease for which various other treatment options are available. I do however; strongly believe in obtaining second or third opinions from a physician “very” familiar with this cancer. These specialists, based on their experience and knowledge, will confirm (or not) the opinion of the surgeon you have consulted with so far.
Hugs,
MarionHi There with a word about stents. Curious if the Docs mentioned external stents? They can usually be guided in from the side by the Radiologist. It’s better than being Jaundice. Next, listen to your GUT, there is nothing wrong with seeking another opinion and we heartily reccommend that especially when in doubt. Sorry, can’t help on the chemo but I know others will be along shortly. Sending tons of best wishes for you both.
Maybe you guys can help me understand a few things, our doctor is a very nice guy but challenging to keep around to answer questions and honestly, most of these questions occur to me later. I’ve read on this board that some doctors don’t do chemo when a patient’s bilirubin is elevated. Last week my husband started Oxiliplatin/5FU when he was obviously jaundiced and his bili was 8.4. Halfway through the treatment the nurse reported his labwork to us and told us that the doctor was cutting the dose of 5FU by half (he was still receiving the OX at the time). Thank God he wasn’t denied chemo that day, I think he would have gone mad! He was miserable. 1 week later, his bili is down to 6.1 and he feels much better. What would have been the point to withhold tx.? I know a lot of people think that stents are the answer in this situation, but we’ve been told by every doctor we’ve talked to that they are not an option for him due to the location of the blockages.
Second question is that we asked the doctor that if significant shrinkage occurs, could surgery be an option? He said no, that if that were possible, we would have gone there first. That’s not what I’ve been seeing here. Some people do seem to become candidates for surgery after other treatments. Do you think that this is just a difference in philosophy? I told Chris that I’ll bet that if we went to Pgh. (we’re near there a lot visiting family) we could find a surgeon willing to do surgery. He says he’s sure I’m right, as this is what surgeons do, but to what end?
Any thoughts??
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