My Aunt Babs just died Friday night of this horrible disease
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Karen,
we tried many different ones. I remember Kytril and Prilosec. Others on the board may be able to advise other products. Hoping for mom to get some rest.
Marions.Marion–Thanks for the information again. I forgot to ask you or others on line about acid reflux. Does your husband have problem with this? It seems to be worsening, especially at night. This is mom’s current complaint and keeps her from sleeping well. We want to have some suggestions for the doctor on Wednesday. If you have any input, I would greatly appreciate it!
KarenP
Marion–Although my mom is home from the hospital, (she came home on Friday am), she’s back nauseaous and vomoting again as of last evening. The doctor drained 1 liter of fluid out on Thursday, seemed not to lessen her symptoms. She has a day or two that are tolerable and then right back in the cycle. You had mentioned that your husband switched to suppositories on his meds. Would you possibly share with me what your husband is taking to battle his symptoms? My mom has been on regulan–which recently they upped the dose and she’s got some really wierd side effects (stone like face and drooling) –so we are taking her off of that as of last night. She’s also on zofran for nausea and vicodan for pain management. Mom is not a pill taker (she’s always and up to just recently only taken 1 tylenol for anything). Does your husband have fluid retention problems, and is he taking anything for that? I just need to find some other options other than what we have to ask her oncologist about. She has an appt for Wed. Your reply is greatly appreciated or anyone else out there who has any suggestions, please let me know. Life is a roller coaster these days. I.m so thankful to have my faith at this time and this website.
Karenp
Karen – Sorry to hear about your Mom being back at the hospital. I suppose she now is on IV for hydration and the administration of medication. This will eliminate the use of suppositories during her stay.
Thinking of you, sending good wishes and hoping for the symptoms to diminish.
MarionsMarion–Thanks so much for the information. Actually mom’s back in the hospital after a full day or vomiting. Again abdom. Xrays showed only a ileus. Her potassium was down, could have contributed to the slow bowel. I’ll talk w/ the GI guys and her oncologist regarding meds as suppositories. It’s just such a crazy cycle, a week of eating OK, then vomiting a day or 2 and enough dehydration to land her back in the hospital. I’m just so thankful we’re close to the hospital this time, less running, less stress. We’re thankful for good days, or hours.
Karen P
Karen— Ducolax (stool softener) not laxative has worked very well with me. Especially being on pain medications where your bowel becomes so sluggish. As for myself I took 2 gel tablets for a couple days and then cut back to one daily then one every other day. Very gental and easy. Not as harsh as laxatives. You can get at any WalMart Store. Hope she feels better soon.
God Bless,
Jeff G.Jules–thanks for the information. My mom has areadly had two stent replacements, both titanium. Seems that the stents are clear at this time. My mom was in the hospital for 5 days about 2 weeks ago as they thought she might have an obstruction. Tests, CT, scope, and multiple X rays turned up nothing. They released her saying that she had a paralytic ileus. Although upon release she had kept food down for a few days, the night she came home from the hospital she was back vomiting again. We ended up back at the oncologists office for daily hydration for 3 days and again did not vomit again until this morning. My mom continually complains of stomach pain, and acid reflux, causing nausea. She has been on a few anti-nausea drugs w/ her IV fluids, and had tried several OTC drugs for acid stomach. It seems like her stomach just isn’t empting well. She hasn’t had a normal bowel movenment for a few days. Any information on the use of mild laxitives to keep things going, especially since she has been told there is no blockages? Uses of antibiotics for possible infection and pain killers reak havoc with the digestive system apart from the chemo and the disease itself. If you have any suggestions, even herbal, we’re open to hear about it.
Thanks
KarenpDear Karen
I am so sorry that you are having to go through this with your mum especially having lost your Dad and other close family members so recently. I just wanted to give you some information that might help:
– your mum’s fluid can be drained (a simple and painless procedure that needs to be done in hospital usually over a 24 hr period as the fluid should not be taken off too quickly to avoid drop in blood pressure) – this could be combined with the use of diuretics – spironolactane and frusemide in combination usually works for about 50% of patients. Usually with drainage of fluid it will accumulate quite quickly afterwards although I found that the diuretics worked quite well with my Dad. Also if your mum’s ankles/legs are swollen she should sit with her feet raised above hip level and when she is in bed you might want to try placing a pillow under her calves.
– as regards stents you might want to ask your mum’s Drs if they would consider a metal stent as these tend to be less prone to infection and blockage, generally plastic stents are used as they are less expensive and I found that I had to push hard for a metal stent to be used. If the stent works well and the bile can be drained then your mum’s comfort should be eased considerably.
I am afraid that muscle wastage, lack of appetite, nausea and extreme lethargy are all too common symptoms with this disease. The best that we can do as caregivers is to ensure that our loved ones are as comfortable as possible, I know this is an utterly exhausting time however if you are able to fight your mums corner with the Drs and ensure that she is provided with procedures that can ease some of the symptoms then you will be comforted by knowing that you have done your very best for her as it is clear that you are already doing this by finding this site and researching this disease.
Jules
Dear Karen ……. Sorry about your Mom. I wish you both the best. I would recommend scrolling down and clicking on the Alternative Treatments or further down is Supportive, Palliative and Hospice Care. Also Pain Management. You should find plenty of links and information. It sounds like she needs to have the fluid drained for starters. Also if she is contunuing to have fluid build up talk to your doctor about diuretic usage. It sounds like your Mom has been through quite the ordeal. Karen, wasting and fatigue are prevalent with the disease but also with Chemotherapy treatments as well. Chemo treatments are cumulative with side effects and could be wearing out your Mom’s body more so than the disease at this point. Maybe discontinue chemo for a while, it is her choice. Again I’m really sorry your Mom has to be going through this and you as a caregiver as well. Determine what your Mom wants to do and advocate strongly with her doctors what she feels she needs more help with. And don’t hesitate to use the emergency room to get attentention.
God Bless you Both!!
Jeff G.I’m new to this site. I am looking for support and answers. My mom, 77, was diagnosed with CC in Dec. of 2007. She was told, despite that she was symptomatic that she was a candidate for resection. Surgery was scheduled for Feb. 2007, they opened her and closed, finding more cancer in the abdomen and nodes, not visible on the CT scan. Because of complications of surgery, (infections, stendt(sp?) replacements, she was unable to start a treatment plan until May of this year. She began chemo (Gemzar) and actually did quite well until about two weeks ago. Her weight has dropped significantly and has a great amount of stomach upset, nausea and some vomiting. A recent hospital stay turned up no blockages, but symptoms continue. No new cancer has shown up on any scan or Xray, but there is quate a bit of fluid in her abodmen. The doctors seem to be guessing regarding where she is at with this disease. One doctor told me that she was probably dying, the next day mom perked up a bit. We are connected with a teaching hospital (University of Chicago) and Northwestern Memorial, but the information seems so scarce. I’m the only caregiver for my mom. My dad, a close aunt, 2 uncles and 2 close neighbors died within the same timeframe all of cancer (one year ago) that were my mom’s support group. I guess from reading messages that wasting and fatigue are the symptoms that are the most prevalent. We are faithful people and God is giving us the strength to get through this. It’s just so hard, seems no relief. Any information on non-traditional therapies that had eased the symptoms in this cancer? Thanks for posting your stories. It makes us feel that we are not alone in dealing with this diesase.
Karen
Dear Ginger – i’m very sad to hear for your loss. I can only hope that your aunt has peace, and your family is able to heal.
Putting the incidence into perspective, in 2006, approximately 16% of all new cancer cases were from breast cancer. (source: http://www.cancer.org/downloads/stt/CAFF06EsCsMc.pdf) Breast cancer is one of the larger cancer types, however it made up 16% of all new cases in 2006. Compare that to biliary, liver, and gall bladder cancers, which accounted for approximately 2% of all new cancer cases in 2006. (Breaking cholagiocarcinoma out from the liver and gall bladder cancers is difficult to do because intrahepatic is often lumped in with liver cancer, and extrahepatic is often lumped in with gall bladder cancer.) Yes, we are smaller than the largest cancer types. However, 2% is not necessarily rare – at least not in my book.
The only known cure, at least at this time, is resection or transplant. Since very few of cholangio patients are candiates for these options, early detection becomes key. The only way we’ll ever arrive at early detection is through education and research, and we’ll need to leverage that 2% value as much as possible to assist the researchers and clinicians towards finding better solutions.
Dear Sandy,
There is no known cure other then the potential of curative treatment through surgical resection. We, the ones having been touched by CC, are not going away until this cancer is brought to the forefront of modern medicine and, as you said, our voices are heard.
Hoping and wishing the very best for all.
MarionsDear Ginger,
Please accept my sympathy on the loss of your Aunt. This is a HORRIBLE disease, but it is a little known one, because it is so rare. I wish we could make people more aware of cc, but since it only makes up 1% of all cancers, no one is interested in donating or funding for research. I’m from Delaware, but I consulted with John Hopkins when my husband was diagnosed, and they told me the same things the Dr.s here in DE had told me. Usually, once you have symptoms, it’s too late for a cure.
I wish we could make our voices heard!Sincerely,
Sandy
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