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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, 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.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???I know it can be frustrating when the doctors are unable to stent. We got 3 different opinions on this and apparently when the blockages are too high in the liver, the stents won’t help. One doctor told us that it’s better not to stent because it increases the risk of liver infection. My husband’s bili was 3, and the chemo brought it down nicely (gemzar/xeloda). Unfortunately, it has stopped working and now his bili is up to 4.6 and he is jaundiced (not too itchy luckily). Anyway, he just got a port put in yesterday, and he will begin oxiliplatin/5FU on Monday, so hopefully the tumor(s) will start shrinking again, and he will begin feeling better.
Try not to worry too much, I know it can be really hard not to.
DianneHi Debbie,
I’m so sorry that your Mom was unable to have the resection. She may change her mind in the future regarding chemo. It can actually improve a person’s quality of life. It sure helped my husband (for a few months anyway). Now he’s going to try a new regimen to hopefully get it beaten back some so he can feel better again. He is not a surgical candidate. This disease makes him feel so lousy. Anyway, we also live in Columbia. He’s getting treatment at SCOA (off Greystone Blvd.) and we’ve had nothing but excellent care there. You might want to go check it out, it’s a beautiful facility and the people there are wonderful. Waiting is almost non-existent, they’re so efficient. Anyway, I wish you both the best and would love to meet you and your Mom if you are interested.
DianneI’m so sorry you’re family is going through this. Chemo can be so hard on a person. It could be side effects or perhaps he feels so poorly that he is becoming depressed. He really should talk about what’s going on with him. Hope you all are feeling better soon.
Lainey and Percy,
Thanks so much for your quick replies. This has been such a bone of contention between us. I was starting to believe that he (Dr. R. Smith, SC Oncology) wasn’t being aggressive enough (too afraid of side effects) and Chris wasn’t anxious to go down the Gem/Cis route either. I was starting to get frustrated with the whole thing and worried we weren’t doing the right thing. You really set my mind at ease. Thanks.
DianneKris,
Thanks for your input. I think the blood count was the issue he mentioned. I’m really glad the combo worked for you. I don’t know if Chris would be as tolerant of the side effects as you were. He’s had numbness in one of his feet before from a herniated disc and found it to be highly annoying, but if it might beat back the monster, it’s worth serious consideration.
DianneMy heart goes out to you. I know you’re very concerned and frustrated over being unable to be with your parents at this time. Have you considered getting FMLA protected leave from your job? It covers taking care of one’s parents with severe illnesses. You cannot be fired, but you might not get paid either depending on whether you have PTO you can use.
DianneLisaAnn,
Have they placed an NG tube in your father? This can go a long way in alleviating nausea, esp. if things aren’t moving through the GI tract very well. I’d have to say that the presence of bile is a good thing cause it’s obviously getting through his bile ducts into his duodenum. Perhaps he has a bowel obstruction? Is his abdomen distended? He may need surgery for that. I work in an OR and we see surgery for this quite often and it is frequently due to reasons other than cancer. I sure hope they get him feeling better soon. He needs to be in the best shape possible for a liver resection this week.
DianneLisaAnn,
I’m so sorry your Dad is having a rough time. I hope the doctors can get him feeling better real soon. I’m curious about something. What is the reason that these stents get infected so frequently? 2 gastroenterologists discouraged us from pursuing stents for this very reason. But they also said that because of where the blockages were (high up in the biliary tree) they would not help anyway.We’re very pleased to follow all of your wise advice. It’s what we hoped to hear quite honestly. I’m thinking that perhaps if chemoembolization is in his future, that going out of town to this other facility (MUSC) might be a better choice. I believe that being a large teaching facility, that the radiation oncologist there will have more experience. Having said that, I know I’ve got to do my homework. Got to be careful with assumptions!
Thanks so much for your quick responses and the valuable information! I’m feeling much better now about the treatment he’s on, I think we’ll continue on this road until forced to do something else. Quality of life is important too and he certainly has that right now.
Hi Daniel,
I’m certainly no expert in this area, but my understanding about palliative treatment is to hold the cancer at bay as long as possible thereby alleviating or preventing the pain in the first place. My husband is receiving chemotherapy at present and he has no pain (never has) but he did have itching and slight jaundice that has been relieved. We’re simply hoping it buys him more time (a couple decades would be nice!) Never lose hope. I know a surgeon (an ENT) that told me he’s seen 2 cases of spontaneous regression of cancer in his career (true miracles). You just never know!
