newly diagnosed with cc
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Vincent,
Also mke sure your Mom is drinking a lot of water. After her stent change she really needs to drink a lot of fluids in order to flush the poisons out of her system, That is basically what is happening, the bilirubin is backing up and poisoning her. It takes about two weeks to get her system cleaned out and for the itching to stop. We just went through this in October ’08 after more than 2 years with no problems. My husband had a stent changed and it proceeded to slip out of place and completely obstruct his ducts. He became very ill and they admitted him , put in a new stent and put him on IV antibiotics. It took about 2 weeks for him to really get over all of the sickness that came on within just a few days of being obstructed. Don’t let them put you off – get your Mom in as soon as possible. MaryVincent,
I hate to say it but someone needs to get on the phone and start making a lot of noise so your Mom gets the treatment she needs in a timely fashion. My husband has been getting stents replaced for 2 1/2 years now and they ALWAYS get him in right away as soon as his bilirubin starts going up or he gets fevers. We have never had to wait more than 2 or 3 days at the most when he starts feeling badly. They are very concerned about infection and sepsis so are always prompt about replacing stents. If I don’t hear back I make calls myself to make SURE they get him scheduled. Unfortunately that is the way things get done.You sometimes have to be a pain in the a**, sorry but it’s the truth!! I hope your Mom gets in soon, the itching must be unbearable and there really is no reason for her to suffer. She will get better right away once they get a new stent in!! Best Wishes, MaryHello Sambaman,
Why did they put a stent in the throat? Thanks for you info though, but I don’t think mom can stand it. Last time when they intubated her, she had a hard time with it and it was like a nightmare that she won’t be forgetting. But thanks for your info anyway.Hello Pauline,
Thanks for your info. I’m just wondering if the drug you wrote is the same as the drug that is used as antibiotic. Is it used for itching as off-label? I’ll bring that up to the doctor when we see him.Vincent, whilst in hospital this week I was in a ward with a guy who has had a stent replaced in his throat a couple of times and he is now making fantastic progress. Yes it is a pain but I’m sure they will get it sorted and help your mum.
All the best.
Tom
Hello,
Mom’s temperature went up to 102 F last nite and we gave her 2 pills of tylenol and it went away. She Aveeno soap does help with the itching but doesnt seem to last long (2-3 hrs) so it’s not that good unless she can shower several times a day but i’m afraid she’s gonna get sick from the cold. She ended up trying some Chinese cream that we already had at home and it seemed to work very well. It’s been several hours since she applied it and she told me there is no more itching at this point.I’m wondering if anybody try the “Tian Xian Products #6” and if it’s working? Here is the link
http://www.tianxian.com/products/products.asp#1
I’m frustrated and can’t wait for mom to get the stent. Sometimes it really sucks and it makes me think that why can’t they start chemo on her earlier. I looked back thinking had we not taking mom to Garfield’s hospital but to USC instead, how much of a difference would it make. But at the same time, it was because her family doctor works for Garfield hospital and since she was there, she was stuck for about 6 weeks and by the time mom was discharged, it was Christmas time and every doctors were busy.
Anyway, yeah the healthcare system here can really frustrate people ‘cuz they have to wait for a while to get their treatment done unless it’s super urgent
Vincent….on this board I have seen stent replacements anywhere from every six weeks to six months. With the itching under control (for right now) I am looking forward to hearing from you next week after the stent replacement.
Hugs
MarionIf the itching continues to be a problem you might like to ask the doctors to prescribe rifampicin. My husband, Anthony, suffered from terrible itching for months when he was first diagnosed with PSC and this was the only thing that helped. In fact, once he took it ( one tablet a day) his itching stopped completely which, as I’m sure you can imagine, was a tremendous relief to him.
Best wishes
PaulineHello Marions,
Thanks and yeah, hopefully mom can be eligible. So she Aveeno soap seemed to be working for her so that’s good. In the mean time, we’re still waiting for the GI dr. to put a stent on her. Dr. El khoueri faxed the request over his office and just waiting to hear from him. Hopefully they can schedule her to do it on Monday. We dont know what mom’s bilirubin level is today but she looks yellower and i feel like the plastic stent is no longer working But I hope we can temporarily relieve her itching while waiting for the stent to be done.vincente…so sorry to hear about your Mom’s itching. Showers and then cream seemed to help my husband but, the stent replacement brought him true relief. I am hoping for your Mom to be eligible for the clinical trial. My thoughts are with you and your family.
Hugs
MarionHi Vince, you and your Mom are certainly in our thoughts. I followed up on a cream for Dad that Lainy suggested (SARNA) and it seems to be working quite well (as does the Aveeno). She found it at a drugstore & I found it in a major-local grocery store…. perhaps it may be at Albertsons. Additionally, upon our request the hospital has brought it into their pharmacy as well.
My Dad’s bilirubin level went up to 15.8 a couple weeks back, and then back down to about 2. Dad has a biliary catheter in him, to divert the bile. In fact, he had it changed today, the third one since early Nov. He is expected to start chemo (Brachytherapy) straight through the catheter tube. He is also on the Gem chemo- it has agreed with him pretty well.
Your Mom is lucky to have you there to be with her Vince, that’s a great gift to be able to give her.
Best,
TessHi Vincent. So sorry to hear about your mom’s turn. You have certainly done a great job and are a fabulous patient advocate! Your mom is so lucky to have a son like you! When Teddy had itching we found Sarna (Walgreens) to help the best. Its pretty powerful and cannot be used long but it did help. Also ice bags where ever it was itching. We are praying for her relief and that things take a turn for the better.
Hello,
Just got back from USC. Anyway, at this point we’re gonna stick with USC since they do things alot faster than City of Hope. I got bad news though. On Monday 1/5, they ran a lab for mom and her bilirubin was 2.5 (comparing to 1.7 on Dec 19th). Then today (1/
her bilirubin went up to 4.7 and that is not good. I’m assuming her plastic stent is no longer effective and it start to get blocked. Dr. El-khoeiry tried calling the GI specialist to schedule mom to do a stent but couldnt’ get a hold yet. HOpefully he can schedule her to do it on Monday as mom started to get more itching lately It sucks to see her going through that again while nothing I can do. I tried to buy her the Aveeno oatmeal soap and the lotion which helps to relieve her itching and hopefully it’ll work.
Dr. Vincent Chung called back today and told us the only treatment is chemotherapy. I told him about USC has a trial (phase 2) using Trastuzumab (being used to treat breast cancer) to treat cc with very lil side effect comparing to other combos. Dr. Chung told me that we should take advantage of it if mom is qualified. In order to be a candicate, her tumor has to have a Her-2 target cell. WE gave Dr. El-khoeiry the slide and he will be sending it out to the lab for them to evaluate if it has the her-2 target. Hopefully her tumor has that target. If not then he would try to Gem and 5 FU combo. Anyway, it’s pretty sad to know that mom’s cancer is at stage 4 and both Dr. El and Chung told us that it’s been there for a while already but not recently. I’m just praying that one of the therapy will work for her. In the mean time, i just want mom’s itching will be relieved asap.LuLuu-
I adore your defiant quote and your sheer determination to help your husband in every way that you can. Fighting with foods and supplements is the best approach possible. Keep up the stellar attitude. -ljg
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