Side Effects of Gem/Cis

Hi Mary,

Your experience sounds familiar although not truly alike, my mom had the same drain you were talking about inserted into her abdomen a few months ago. Initially, my mom was on gemcitabine/cisplatin and it worked wonders for her. She did no experience any swelling of the feet/ankles nor did she have fluid in her abdomen as a result of the treatment. She developed the fluid about four months after stopping gem/cis. Having said that, she was having the same problems as you regarding the swelling and after being drained by needle the doctor recommended they place the drain to provide her with additional comfort. The procedure itself was very quick, and my mom had minimal pain once it was complete. She was able to go home about an hour or so after its insertion. It was a very simple solution to the problem, was not messy and very easy to use. In Canada, we are provided with palliative nurses that come to your home and remove the excess fluid as often as you need it done. My mom was doing it once or twice a week and then later moved to every other day. It definitley helped alleviate her uncomfort but it also decreased her blood pressure in several cases (if it is drained too often etc). You have to remember to drink lots of fluid to help replenish yourself after having the fluid drained. My mom was also seeing a naturopath at that time and I know her recommendations helped a lot as well (unfortunatley my mother was at the end of her journey, I truly believe had we started earlier her fate would’ve been different). Nevertheless, I think it is a valuable tool to have to deal with this symptom, it is not permanent and can be removed should that be the case (god willing). Please feel free to contact me should you have any additional questions.

P.S – showering is a bit tricky as you are not supposed to wet the area. The palliative nurses provided my mom with a waterproof tape which they placed over the drain to protect it (so she wouldn’t get it caught on anything etc) and then I would place saran wrap over the area and tape it again when she showered and then I would take it off once she was done.

Mary….so sorry for not responding earlier. Had it not been for codfish posting a message to you, I may have overlooked your posting.
Correct, Stacie had met with the hepatobiliary team in anticipation of our first Stakeholder meeting at the end of this month.
This meeting is chaired by Dr. Abou-Alfa and he will be accompanied by other physicians within his working group including; your treating oncologist. We are very excited about this conference as it brings together about 50 physicians (many of which are mentioned by members of this board) and numerous others focused on the disease of Cholangiocarcinoma.
Hugs,
Marion

Mary…..I believe that you are talking about a Percutaneous Drainage Catheter placed by an Interventional Radiologist. I recall a few years ago a person touched on this very lightly, but we have not had any recent reports on it. Hopefully someone will chime in and share thoughts on this.
I so much hope for you to get some relief, dear Mary.
Hugs,
Marion

Mary….biliary drainage had been discussed a few days ago. I hope this link will be of help to you:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=84475#p84475
Hugs,
Marion

Hi, Mary,
sorry to hear about the side effects;you have go thru a lot in the past 22 months;as a patient myself, I know how you feel;indeed ,for myself, my CCA journey is like a tiny wooden sail boat going nowhere in the middle of the ocean.
Do I have advise for you,my friend? the answer is NO because I really do not know about the answer even most of you think I can.
Do I want to give you hope? the answer is YES.
Do I want to give up the fight when it seems there is no hope? the answer is many times.
What I want to do is to give you a hug and pray for the Holy spirit to guide you in the best way that will help you both mentally and physically exactly like when I need it the most.
From one patient friend to another

God bless.

Dear Mary, I am so sorry you are having such a rough time right now and the only thing I can suggest is to tell it all to your ONC as maybe some changes are needed. I can relate even though I do not have CC the UC is driving me nuts and the Remicade is tough and there are times I want to throw in the towel. But when I think of the alternative its not welcome either. I think its a good sign that you had shrinkage and gosh I did not know there was a drain that you could drain the fluid yourself. I had been crying a lot and now some new thing has popped up and my GI put me on 10mg of Lexapro (mild antidepressant) never been on one and it has really helped in coping with my situation so you might want to think of something like that. Sometimes we just need a little extra help. Wish I could wave a magic wand for you and wish it all away!