Tired easily, no energy and just diagnosed, is this normal?
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Hi Lisa,
I so agree with what Marion has said to you about getting your mum to the hospital if the chills and vomitting continue. Even if it is just the local hospital and not the major centre that will be doing the ERCP. When my dad’s vomitting started, his GI specialist recommended eating foods that were easier to break down and to eat smaller amounts but more often.
Please let us know how your mum is doing today and I hope you have some success in getting the ERCP brought forward.
Best wishes to you and your mum,
Gavin
Lisa…Your Mom sounds adorable and definitely she has her priorities right regarding hair and dressing beautifully. Hopefully, you will be able to change the date especially, if she continues to feel chilled and vomits frequently.
Best wishes,
MarionThank you Marion.
I just scheduled the ERCP today. I will call tomorrow to see if they can get her in sooner.
Unfortunately, the ERCP isn’t done at our local hospital. We have to go about 80 miles to a major medical center to have this done.
Yes, if she develops a fever or is worse, I will bring her to the ER. This all just was detected Friday, so we are not even a week out. This has been brewing for awhile. Luckily she isn’t jaundice – yet. She is a well dressed 82 year old so jaundice would break her. (it is bad enough if she misses her hair appt!).
Thank you for your support. Best wishes for you.
Lisa
caregiver1…….If you are unsure then I would call the doctor and request an earlier ERCP. If that does not work then you always have the option of taking her to a hospital. Once there they will have to tend to your Mom.
I hope for your Mom to feel better real soon.
Best wishes,
MarionMy Mom is going in for ERCP next week. She has a “obstruction” or tumor (according to the radiologist) in the intrahepatic and extrahepatic ducts. (Common bile duct and hepatic bile duct). Her gallbladder is grossly enlarged. LFT’s all elevated. Her bili is normal (0.7) – no jaundice.
Now the question – she felt very chilled today, just didn’t feel right. Vomited again this evening. I told her to eat light, watch the fat intake. Any other suggestions? She seems to be more symptomatic, and I can’t imagine how she will be until next Thursday.
She takes a PPI inhibitor, which helps with the heartburn.
She is 82 and quite active prior to this.
Thank you all for your input and best wishes and prayers to all of you with your courageous fight.
isellure,
Just came across your post. As for being tired with no energy, that’s exactly how I was even after stent placement and jaundice gone. When first diagnosed there is a huge mental adjustment to go through. All those tests and doctors appointments take a toll on you, too. I do take more sleep now (even the months I’m not on chemo). I certainly do not have the energy I use to have. I’ve accepted that and still enjoy life – I just go to bed earlier.
Charlea,
When my wonderful insurance company approved my referral for an out-of-network facility that had experience with cc, I had the thought it wasn’t a very good business decision to do that considering the prognosis. Well, I’m over that. I understand your feelings, but I think the health insurance companies are just fine financially. They are not non-profit. The masses are paying in to help the “sick”, which is how it should be. Doctors are learning more and more because insurance companies are paying lots of money for procedures. (I’m not considering the medical fraud that happens). Much more needs to be learned about cc on the young and on the elderly; but you’re right, it should be a personal choice.
I was diagnosed in January of this year and was started on Gemzar and cisplatin without reduction in my liver tumor or lymph nodes. I then went on to a chemoembolization in July which is just showing a response on a 9.5cm liver tumor. After these two treatments I have felt better than I have since before my diagnosis and have returned to my previous activities of art classes and working/showing in a local gallery. I was given an initial prognosis of 6 months which I told my doctors that I didn’t believe. Perhaps your mother-in-law would benefit from the chemo combination I had in addition to the other procedures such as stents that others have had. When I saw an oncology surgeon he said that surgery would include removal of the left lobe of my liver where the tumor was present and half of my right lobe and that would stimulate a rapid growth of my cancer due to the liver’s capacity for regeneration. I am 67 and feel like I have had a wonderful life and am not willing to use medical procedures that cost my insurance company incredible amounts of money. Just the embolization cost $46,000. I cannot imagine what an extensive surgery might cost. My husband says you can’t put a price on survival but I want my time to be quality time. For those who are younger I can certainly understand wanting to do all that can be done so that you can enjoy your young families. I pray for all of you being treated for this disease but remember that we all make our choices and they must be accepted as we are the ones who go through the procedures.
Thank you all for so much information. It’s so helpful to know what so many people have found helpful. I am hoping that today and tomorrow are easy on her and we’ll wait til next Thursday for the results. I really appreciate everything. I’d rather know all the options and things that have worked than to know none. We’ve done alot of research and yes we believe in the second opinion too.
Welcome, Isellure:
I was diagnosed with the Intrahepatic Cholangiocarcinoma in Jan-Feb 2010, after jaundice sent me to the ER. Four major things–outside the support of a friend, the grace of God and information and support from this board–have extended my life to this point. 1- Accurate diagnosis, followed by a second opinion from a true specialist in hepato-biliary surgery at an institution with significant experience in cholangioncarcinomas. 2-Chemotherapy. 3-Radiation therapy (tentative). 4-Nutritional supplementation (Nutrapathics). I was very lucky to respond the the chemo and eventually feel better for the present–as I’m told the odds were quite against me even on that. Just information for your mother-in-law and you to ponder if she wants to fight.
God Bless You All–
Tom
isellure…..Your love and caring for your mother in-law shines through in your posting. It is quite obvious as to how much she means to all of you. I agree with Kris and Lisa in that informed patients need to have the ability to make decisions based on what they feel is “best” for them. And, this decision may be contrary to what their loved one’s belief to be the “right” decision. Only too often do patients suffer the consequences of being pushed into treatments not beneficial only, because they do not want to disappoint t their loved ones. I believe that all of us including, the physicians want patients to have the best shot at conquering a disease however, ultimately it has to be in the patient’s choice as to how to move forward with the treatments. Therefore, an informed decision is the best decision for each individual patient especially, when it comes to a disease such as cholangiocarcinoma. We have witnessed, on this board, variable and unpredictable responses to treatments and not until a “definite” cure to this disease has emerged are we in the position of predicting an absolute recovery from this disease. Given the circumstances of your mother in-laws personal experience and her reluctance of wanting to undergo surgery, it might be best for you to obtain as much knowledge as possible about this disease. Armed with this knowledge you will emerge as the most effective advocate on her behalf and that indisputable, is the absolute best you can do for her. There is no doubt for a loving family such as yours that the treatment of choice will be the right decision for your mother in-law. That, coupled with tons of hope, determination and support is one of the most powerful gifts we can offer to those fighting an illness. Please, continue to reach out to us. The experiences and knowledge offered by the members on this board is unsurpassed and you will appreciate quickly the enormous support coming your way. We are in this together.
All my best wishes are coming your way,
MarionI am so sorry to hear of your MIL’s diagnosis. Unfortunately, it is normal to lose energy while fighting this horrible disease. She needs to listen to her body and rest when she can. I concur with Kris, her decision not to have surgery needs to be respected. I had surgery and it didn’t do me any good – it was a lot to go through for nothing. Don’t give up hope, though. This disease treats people differently for some reason, and some live much longer than anyone expects. No reason to think that your MIL might not be one of the long term survivors. Take care, Lisa
I think it is wonderful your mother is being so accepting of the news. It is harder to enjoy what is left if you havent made peace with what the future holds.
Please please get the family to accept your mothers decision. As a patient, I get so frustrated when I see how sometimes family members pressure their loved one into treatment that is not wanted. I personally feel it is unfair to the patient. IT is hard enough knowing you are going to die, and often a painful, messy death, without feeling like you are letting down your loved ones.
I am currently on a downward trend, also losing my strength. For me, I can do a little more in the morning than later in the day so you might want to consider your mothers schedule. I also feel better when I am having regular bowel movements and I have kept up with my hydration and calories. I have started again on the melatonin at night, and that too seems to help. IF I can think of anything more, I will let you know. Just be prepared, this cancer is very tiring. Plus the emotional burden can steal your energy as well.
Kris
You might want to gather up the tests results and send them to Mayo Clinic in Rochester MN or MD Anderson in Houston. They are some of the tops for CC. Are they talking aout a Whipple Surgery? My husband had one at 73 and he did well for 5 years. I guess I would just make sure and would go for that 2nd opinion, that is just my opinion.
Time lines cannot be given however, I don’t feel good about doctors giving up, so to speak. Also not sure why a week’s wait. I am not trying to stir things up for you just trying to show why a 2nd opinion could be very valuable. We have always had Teddy’s test results with in a day or 2. You hit the nail on the head with CC, it is a silent Monster. Again, try to read as much as you can and become knowledgeable as it’s the best thing you can do to help Mom fight this CC. Knowledge is power!Her cancer is in the bile duct and tumor blocking the bile from passing. The doctors told us she would more than likely have the same time frame for quality of life with and without the surgery. The surgery would be such major surgery then recoop time and if all went EXACT then she could expect the same quality of life time. The Dr’s did feel that the surgery may be risky with her due to how involved it is and if they could attach enough to the liver. (Again, someone said the time frame of 6 months has been mentioned, I just cannot get an answer on who gave them this) The doctors at Mayo haven’t given us a time line. The family and her met with Dr Nuygen at Mayo Jacksonville, FL. Once the test are done on Tuesday and we wait a week for the results we will know more then. Waiting is not good, we dont have time on our side. Of course all the kids want her to have surgery and do whatever it takes but she is accepting of the cancer and wants to live life to the fullest right now for the good time she has. It’s a hard decision to make on her end and of course a hard one for the kids to take by her not electing to have the surgery hoping for a miracle. We will ask the doctors on Tuesday if there is anything she can do to get her strength built up, she’s just lost all this in the last two weeks and daily it seems to get worse. We want her to at least feel better and be able to go for a walk on the beach and swim–she did this everyday of her life up until a few weeks ago. This seems to be a silent zapper for sure and not knowing what to do for her is dishearting. She’s such a sweet, gentle and awesome mom and grandmother and we want what is best for her. I am sure we are just like every other family- the shock of this dreaded disease and how fast it takes a toll leaves us without having a chance to take a breath. Thank you all for your care, concern and talking with me about this and allowing me to lean on you for information.
Isselure, you are right 67 is not old. Where is her CC located? I always told myself, when Teddy, was jaundiced then fighting the CC that tiredness is normal, afterall they are fighting a Cancer in their bodies and that zaps a lot of energy. At the top of our page is a Search engine and you can type in any word like energy and up will pop a lot of posts on the subject. Have the doctors said what kind of prognosis she would have with surgery vs. just radiation?
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