kvolland

Julie –
I understand that thoughts about the port. Mark had to have his pulled after his first three doses of chemo….clear back in September because of his continual problems with blood infections and the concern that the port was the source. He had to keep it out for two months and then we had the discussion about placing a new port. At the time we were more than half-way done with chemo and he opted to not have the port replaced. So he had to have an IV start every time he did chemo. It was awful. One time we ran over two hours late because it took that long to get a line in and then had to wait another hour for labs. After that they would draw his labs from hie elbow area and then call the IV team to start an IV. I would give him Ativan before we got there so he could make it through. It was frustrating for me because I knew I could get a line in him. Then to top it off he had to have the port put back in before he started the chemo-radiation in March. We should have just done it when we talked about it in November.

And you are right, the port will have to be flushed monthly after you are done with chemo….but you could just have it taken out at that point then have a new one put in if needed later on down the road and maybe it would be better placement.

If you opt to have the port replaced, I would without a doubt have a long talk with the surgeon before hand about having it placed…where it would work better. I would think closer to the middle of your chest. That’s is where Mark’s is. He hunts some and when they decided to put it in the right side, it would interfere with the port so he explained that to the doc and he placed it more center. I don’t think most people realize that you can ask for placement…..I have actually seen a port placed in the inside of the upper arm rather than in the chest.

Keeping thinking positive….the end is worth the battle. And when you get all those gold stars on you calender treat yourself to a spa day or something nice like that. A reward for those stars just like when we were kids. Hang in there. This too shall pass.

KrisV

Snewland66 –
Welcome to our little family. Sorry you had to join us and so sorry you lost your husband to this awful disease.
I have not seen any specific link to those diseases. I know for my husband he had a history of Hodgkin’s lymphoma as a child and they speculate that the radiation he received for that may have caused the cc but nothing definitive. He has a family history of colon cancer. Other than my husband’s experience with both diseases I don’t have an answer.
I know Primary Sclerosing Cholangitis and some other liver infections such as hepatitis may predispose a person to cc. Also in SE Asia the eating of raw fish can lead to a parasitic liver infection with a liver fluke that increases the risk.
I am sorry I could not be of more help. I am sure others will chime and maybe someone can point you in a better direction. Good luck.

KrisV

JanBee –
I feel your pain with the eating. My husband has lost pretty close to 80# since this all started. Thankfully he had some to lose so he doesn’t look too bad. It is really hard to keep calories going in when they aren’t hungry, nothing sounds good and they get full so fast.
I pretty much suggest throwing most diet restrictions (ie low fat, low cholesterol) out the window for the time being…..those can be fixed later. Everyone has had good suggestions and two that I might add would be….dry powdered milk. Yes, most of us will say yuck but it can be added to most anything to add calories and protein. We put it in oatmeal, malt o’meal, cream soups (made those with milk too rather than water) and I have even put it in yogurt and potatoes. The other thing I did was in making jello…..my husband liked it and it does count as a fluid but not a lot of protein (some but not a lot). I made it and substituted Ensure clear (wild berry or mango orange I think are the two flavors) for the cold water. It sets up just a little cloudy but not bad and taste-wise it’s about the same. It also doubles the protein in it.
Also GNC has whey protein powders in many flavors which can be added to shakes or just mixed up and drank.
We also resorted to using Megace to stimulate his appetite and he has been told that once he starts gaining weight, he can stop it. No weight gain yet but he stopped losing finally.

Hope this helps.
KrisV

Suzy –
I am so sorry that you are having to go through all this the way you are….and in such a short period of time.
I would not discount hospice as an option. I understand that it feels like giving up but it’s not giving up but changing course. It might be a question to ask your ONC and see what his opinion is at this point.
I will keep you both in my thoughts that things turn around.

KrisV

Suzyq – so glad things seem to be turning around a little. It just sounded too severe to be chemo brain. I will weigh on the anti-depressant….if she had been on it for a long time them it might be time to switch things up or even ask yourself/her if it is really needed. If you decide to switch then you might look at Mirtazipine (Remeron). It has a couple of side effects that are actually desirable….it is taken at night and often helps with sleep and it also stimulates the appetite. Both of those are awesome when battling this disease.

Hope things get going better.

KrisV

Suzyq –

Wow sounds like more than just chemo brain to me. It sounds more like encephalopathy which is when the brain gets scrambled. It can be caused by numerous things such as meds (chemo can do it) but things like pain medications also. The biggest reason is that the ammonia levels build up in the body due to the liver not processing things correctly. I wonder if you noted that her belly is getting a little bloated over the last few days. If that is the case I would call the ONC ASAP and let them know what it going on. There are medications that can help reverse that….lactulose is a thick syrup like med that you drink and it pulls the ammonia out of the system….it does cause diarrhea but it may be worth it. They can also do other things that can help.
Also if she had lost a lot of weight some of her medications may needs to be adjusted down to smaller doses. So many meds can be weight based and when the weight drops then less is needed. I would definitely get her seen and have them do labs….especially ammonia levels.

Hope this helps.
KrisV

I confess to google. As soon as the first doc said the words, cholangiocarcinoma and cancer in the came sentence. I lurked for a long time before I joined. Of course, I spent a long period of time looking for the good news about it on the internet….you know….what the cure was. We all know what I found. But once I got active on this site, I learned there are successes so it helped me a lot.

KrisV

Oh Matt, I feel your pain….I had my gallbladder out a few years ago and while not like having the resection surgery….fat is not my friend. I have found that bacon and fast food burgers (yes I will admit to both) are my kryptonite. I found that eating something high is carbs before hand helps some….so bread, pasta….okay french fries too. There is a prescription medication that helps bind the bile salts that may help….it’s called cholestyramine (Questran is one of the name brands). It’s often a powder form that you drink before you eat. I have heard a lot of good about that. Not had to use it myself. A little Immodium seems to fix it for me.

The other things my GI doc told me was that sometimes the bile acid will wash back into the stomach (both with just gallbladder and with the Roux-en-Y) which can cause irritation of the stomach. This was causing me heart burn (yeah, okay we took the gallbladder out for that and I still have it….UGH!) so now I take Prilosec twice a day to reduce the acid. That has made a big difference for me.

Ask your doc before adding anything but it might be worth a try….and Mark wishes he had your problem….everything constipates him so no problems with food for him. Hope this helps. Should have just taken the Prilosec and kept the darn gallbladder.

KrisV