October 30, 2009 at 10:43 pm #32642lalupesParticipant
Welcome, Huffdog, & I’m so sorry to hear about the problems your sister is having. I know my sister was told she couldn’t start chemo until they were satisfied with her blood results as patients have to be fit to withstand the infusions. I know how slow the whole process felt to me before her levels came down & chemo started. A lot of the time, I still think it’s all going too slowly, but at least treatment has now started.
I send my very best wishes to you & your sister & hope they get the drains sorted quickly so she can build her her strength for the fight.
JuliaOctober 30, 2009 at 4:20 am #32641devoncatParticipant
When I hear about people having problems with drains, I have so much symphathy. It can be so uncomfortable. I have no idea why some people have problems and others just sail through the procedure.
When I was first diagnosed, I had a stent put in to help drainage. Then my liver values fell slowly and then started to rise again, but I had surgery before it became a real problem. When I had the external drain, it was more of a preventative measure because they were poking around so much doing all sorts of invasive tests and imaging. So it really didnt help my values as they werent too bad to begin with.
There are several people here whose values do drop quite dramatically when the drains are flowing properly. That said, my original surgeon was very direct when he said you didnt get this way in a week and you wont get better in a week either…I think I might have been complaining too much about the itching!
This disease is a huge roller coaster and the one really good thing they do here in Sweden is hook up cancer patients with a psychologist from the beginning. Mine is wonderful and has really helped both my husband and I. If that is a possibility for your sister, I would get it. The truth is, for me at least, it has never been easy.
KrisOctober 30, 2009 at 2:07 am #32638huffdogMember
Thank you so much for the responses. She is feeling better today even though the bandage was soaked from leakage. At least her bag was filling. It appears her body position has alot to do with how much leakage occurs at the bandage. It was dry all night and draining, dry in the morning, but for some reason got saturated when she move around a bit today on the couch. We changed it since and now appears to be fine. An option talked about was a suture (I assume at the skin) but the Dr. was a little reserved about that and wanted to wait. Anyone have simular experiences with this drain? When it is draining properly do the liver counts drop pretty rapidly and do you feel better relatively quicker?
Kris, when I read her your reponse, that people here have alot of problems with drains, especially 2 years ago when you had yours, really perked her up. Believe or not that was first encouraging or comforting thing she’s heard since diagnosis.
Her oncologist called today to tell her now they will radiate first. When is this roller coaster ever going to start climbing up again?October 29, 2009 at 2:28 pm #32640lainyParticipant
Hello Huffdog and welcome to our World. Nothing is normal with this disease but when you get 2 different opinions don’t be afraid to seek a third. I also agree with Kris that she needs to get the stent problem straightened out quickly and then move on. Not so sure about what either doctor said. The next time you talk to them you have the right to ask if they have treated many CC patients. If you feel your sister is not receiving the best you also have the right to pick up her files and go for a 3rd opinion. I hope she is feeling better today.October 29, 2009 at 11:06 am #32639devoncatParticipant
A lot of people here have problems with their drains. It terrible when they arent working and you get terrible pains, infections and makes your blood values not so good. I did have this problem almost 2 years ago. Not fun.
The problem is that the chemo is actually hard on your liver. The chemical itself, plus the chemicals released if the tumor dies, can be damaging to your liver if it is not functioning properly. I was regularly turned away for liver value reasons.
There is no right answer to treatment. People on this board get radiation all the time, and usually with pretty good results. But my doctor said no to radiation because he is scared of damaging my liver more. Some people get radiation before chemo, some after. I havent yet figured out why that is.
Yes, treatment should be given immediately as it is possible. But if your sister is not well enough, she will not have the strength for chemo and it could cause more harm than good. Your body needs good reserves to
handle the side effects. Making your sister weaker isnt going to help. She needs to get the problem with the drain sorted out. She will not only feel better, but have more energy to fight.
Best of luck.
KrisOctober 29, 2009 at 8:53 am #2825huffdogMember
Been reading here for a week or so and realize you all are very supportive. Our family truly needs it. She is 58 years old and was diagnosed Sept 23 with CC. Both bile ducts are involved and we have been told it is inoperative. We were told that radiation would not work and palliative chemo will be the path. The external stent (drain) was installed Sept 23. We have had nothing but trouble with it since. She had a bad blood infection and was re-hospitalized the day before she was to start chemo. This delayed chemo a week or two, at that time they readjusted the drain again. She did good for a week or so then the bag wasn’t draining. Again, becuase her liver blood results were so bad the Oncologist told her she couldn’t start chemo and sent her again to have her drain changed out. The surgeon that worked on the drain told us that chemo should be started and waiting for the results with a better drain won’t do the trick. This totally conflicted with what the Oncolgist told us the same day. Now we heard to get the blood results better maybe they will do raidiation. ??????. We are at St. Joseph’s in OC, CA.
This has been totally hell on earth, our sister wants so deperately to fight this but time after time there seems to be a delay. She is failing right in front of our eyes and it’s only been 4 weeks. Shouldn’t there be a rush on treatment? The doctors have not given us one glimmer of hope to hang on to. Tell me this is not normal for this horrible desease.
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