MY mom
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- This topic has 12 replies, 7 voices, and was last updated 15 years, 6 months ago by cherbourg.
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June 23, 2009 at 8:44 am #29593hughesdewyMember
Hi Tia,
I desperately hope your mum is fine and did manage that trip to the shore. Something like this puts a whole new perspective on life doesn’t it, and its the little things that are the most important.
I picked up on your observation that the drs said she would be fine for a month before she begins to ‘decline’ again and I’m guessing this is the same as my mum; ie that the potassium given via saline (or orally) lasts about one month before my mum will need more.
I hope they are taking regular cultures of your mum’s bloods and monitoring levels of calcium/potassium in the blood, I’m sure she would be okay with the oral tablets which taste horrible but my mum has learnt to put them in as little amount of water as possible and then follow with a glass of water to take the taste out of her mouth.
Encourage your mum to drink loads and loads and loads of fluids (even when she might not feel like it – like a small glass every hour) as this will really help keep her blood pressure normal. My mum’s has stablised since doing this and of course she’s knocked off the high blood pressure tablets!! Hopefully she won’t be needing those again. I think because everything makes her feel so nauseus (despite antisickness tablets) she has previously stopped putting anything in her mouth. But the nutritional drinks are helping her a bit to feel better.
I’m sure being at home will make a big difference for your mum I’m sure – my mum has perked up since she’s been out of hospital – at last – on antibiotics for the infection, but we’re hoping and praying that the jaundice will begin to clear finally. She needs a break. I desperately hope that your mum and others here get the break they need too.
Keep up that strength, courage and hope and take care,
WendyJune 19, 2009 at 5:01 pm #29604cherbourgSpectatorTia,
The pathology report seems very reasonable and my pathology department will send anything that needs a second opinion to the Armed Forces Pathology Department. They are extremely reliable.
Technically speaking there are all different kinds of adenocarcinomas and cholangiocarcinoma is one of them. Colon cancers are adenos and there are adenocarcinomas you find in the lungs. (The list goes on and on). Most all cancers will eventually end up in the liver as they become metastatic.
Hope this is helpful. Also don’t get too worked up over prognosis and five year survival rates. Every patient is different and the 5year rates are 5 years out of date when they appear.
As my Mom’s oncologist told her when she asked him how long she had, he laughed and told her that if he was able to tell her that then he could charge her a whole lot more money! Only God knows for sure.
As for blood tests here is a link to an excellent site for information:
http://www.labtestsonline.org/
It’s a very reliable site and very user friendly. Hospice is a wonderful resource and my Mom loved her personal nurse. It’s so comforting to know there is someone with knowledge that can help make decisions. They will also assist with equipment, drugs, anything to make her more comfortable.
You and your family will be in my thoughts and prayers.
Hugs to you all,
PamJune 19, 2009 at 3:18 pm #29603jamie-dMemberTia;
I dont know about slowing the disease down, but milk thistle helps the liver work better. I’ve been on it since I found out I had a tumor in my liver. I chew 20 seeds 3Xday. I have a friend who’s Dad was just diagnosed with liver ca, not cc, but he couldnt chew seeds because of dentures so is taking it in capsule form. Also, try and make sure she is getting enough nutrition. I believe that keeping your body fueled helps fight this.
I am praying for you and your Mom. Just remember the Drs dont know everything. Just because they say she will only have a month before declining doesnt mean it has to be that way. It sounds like there is something special in January. Think positive and have her think she’ll be there for it. My Drs originally said I may not be around to see my daughter graduate, well that was a year ago and I am still here and fighting!
God Bless,
JamieJune 19, 2009 at 2:03 pm #29602tiasmealMemberWendy, Thanks so much for your reply. When I read it, it really sounded like my moms. She has had high blood pressure but in the hospital she had low blood pressure.
They are releasing her today. She is pretty stable now. The doctors have told us she is to weak for the chemo, she is 69. But she was able to go to her own home with hospice coming in i believe once daily. I am very excited about this. She was even talking about going to the shore next weekend. They told her she will probably feel good for about one month and then start her decline again.
Does anyone have any herbal medicine that may slow this cancer down until next Jan? Let me know
tia
June 17, 2009 at 12:31 pm #29601hughesdewyMemberHi Tia,
I’m so sorry to here about your mum too – I know how desperately sad that feels. My mum was diagnosed in April this year, and too had high calcium and low potassium levels, which they have managed to balance out by potassium and something else – Vit K i think, via saline drip. She hasn’t had a PET scan yet, but from all the screening she’s had done (x-ray/ultrasound/keyhole/CT) they seem to think that the tumor is contained and has not spread beyond the biliary duct/s. She’s having a bone scan and parathyroid scan today, and we are reasonably confident that there are no secondaries, but will have to see. She is being recommended for surgery and chemo once she is medically stable, and her cancer hasn’t been graded yet because my mum’s is not the specialist hospital – she will have to travel to another hospital for that and surgery – but they are taking advice from the specialist hospital.
She also has to drink a potassium mixture which she says is pretty revolting, but it does the trick to reduce calcium and raise potassium. It seems that there is an imbalance with these two minerals in the blood for many cancers, not just cholangiocarcinoma.
However, my mum has suffered parathyroid problems for years (not cancerous though), and has had elevated calcium in her blood for years, it just got thrown way out of balance when she got the jaundice (and was diagnosed with cholangiocarcinoma in May). The doctors did say that the high calcium levels are debilitating (as is her jaundice) and will make her feel very lethargic and nauseus. She has eaten very little, and doesn’t have any appetite for food or drink, but has started to enjoy nutritional fruit drinks (the milkshakes make her feel sick). I read that it is vital to increase vitamins as certainly with jaundice it is difficult for the body to absorb through food. She is also taking tablets to reduce the nausea, but it’s still a problem with her food (esp hospital food!) and she eats like a bird and has dropped 2 dress sizes in as many months – but the drinks are helping to minimize that now. She has suffered from high blood pressure for a number of years, and ironically has suffered from very low blood pressure over the past 2 weeks – again remedied by sorting out calcium and potassium levels in the blood and by her drinking large volumes of water and having saline IVs. She literally had to drink a glass of water every hour. This really helped with everything and it could be that your mum is dehydrated?
I’m sure they will get your mum stable and under control. My mum had a metal stent fitted just last Thursday (after 2 plastic ones didn’t work to clear the jaundice) and it was hoped she could come home from hospital for the first time in over a month, today. But I heard this morning that she has high temperature, so seems it is probably infected, so it may be a few more days yet before she can get home… we live in hope.
I don’t know much about the course of this condition … but one thing I have learnt over the past few weeks is that the doctors are actually on our side, they do want to get my mum better and discharge her from hospital and they are working so hard on our behalf (although at times it did seem that they didn’t really know what they were doing). I guess it takes a bit more brainpower and searching for solutions, because it’s not common condition and it does seem to be different for everyone about how you are affected, and the course.
I hope and pray, that your mum will begin to recover soon and life can get back to some semblance of normality for you all.
Do take care and you are very much in thought..
Wishing you strength, courage and hope,
WendyJune 17, 2009 at 10:47 am #29600louiseSpectatorDear Tiasmeal,
You, your mom, and the whole family are in my prayers.
Elevated calcium level could mean a swollen parathyroid gland. If swollen, it usually means surgery. The parathyroid is in the area of the neck and is usually the size of a grain of rice but it can grow to the size of a grape. Sestamebe is the name of the test for diagnosis. In it, a contrast dye is injected which collects in the swollen parathyroid(s) but not in the “normal” one(s). Then, in an x-ray, the inflamed gland shines big-time. I don’t remember much about the effects of the parathyroid or what to expect if one is removed, but the Sestamebe and the parathyroid can both be studied via the internet.
I could be wrong on the gland name, but I imagine that any glandular issues in someone already fighting cancer could mean major metastasis and worsening prognosis as well as advanced stage. I’m so sorry to hear about your mom.
I don’t want to be alarmist, but I like to learn all I can about health issues concerning myself and my family. The sestamebe is a test my brother had this spring. Since he does not have any report of cancer, the surgery in his case is a standard protocol with great prognosis when the procedure is early enough. Informed consent certainly seems to help the prognosis. I hope this helps.
Louise
June 17, 2009 at 5:35 am #29599tiasmealMemberThanks for writing back I know that I did not explain my moms diagnosis well here is what the pathology report says:
The biopsy shows an adenocarcinaoma in a desmoplastic stroma.We not in your report that the tumor cells are positive for afp cytokeratin 7 and mucin,but negative for cytokeratin 20 cdx 2 and heppar 1. This immunostaining pattern would be unusualfor a metastatic colon cancer the history of which is noted in your report. statistically the tumor is most likely metastatic, but if all other possible extrahepatic primary sites can be reliably exluded clinically, this may be an intrahepatic cholangiocarcinoma. There is no way to distinguish cholangiocarcinoma from metastatic adenocarcinoma with certianty on morphologic grounds alone, and immunostains are not helpful in this circumstance.
This is from is fromthe department of defense armed forces instiute of pathology washington dc.
My mom is in the VA hospital in New Jersey currently. They have taken her off her IV’s to see if that is the cause of the vomitting and upset stomach. Her feet and leg are swollen as well. And her calcium is up again. Does anyone know why the calcuim level raising is so important????? The doctors are really concerned about this. Can anyone explain what this report means? Thanks again Tia
June 16, 2009 at 11:00 am #29598darlaSpectatorTia,
I too am so sorry to hear what you, your Mom & family are going through. I agree with the others that this disease is very unpredictable. It never seems to do what is expected. I too would look at getting another opinion and ultimately the most important thing is for your Mom to be kept comfortable and as pain free as possible. In our case, after many tests that found nothing, a liver biopsy suggested CC and a PET Scan confirmed it.
Stay in touch & let us know how things are going. You have found the best people in the world here for help, comfort, support & guidence when dealing with this horrible disease.
I will keep you all in my thoughts & prayers.
Love & Hugs,
DarlaJune 16, 2009 at 5:40 am #29597jamie-dMemberTia,
If your Mom is in the hospital the nurses should be able to give her something to help the nausea and vomiting. You need to ask the Dr what is causing it. There are so many reasons, even being constipated, or as Marion said a problem with an obstruction or motility. I agree with Marion you need to be your Moms advocate. Ask questions, make sure you get answers that you understand and find a Dr you feel comfortable with. Write down the questions before and the answers as they give them to you. Also, you might want to talk to her nurses. They may be able to help answer some questions and if nothing else you can let them know that you expect your Mom to be made comfortable both from the pain and the nausea. What is your Moms age? I was stage 4 when I was diagnosed and I took chemo. I dont know all the factors but I think I would seek another opinion before just accepting this Drs opinion. Maybe chemo isn’t right for your Mom but I would want to know the specifics why and if there were any other options either to make her more comfortable or possibly give her some more time. Let me know if there is anything else I can do for you. You will be in my thoughts and prayers. God Bless,
JamieJune 16, 2009 at 5:00 am #29596marionsModeratorTia….I am sorry to hear about the latest developments with your Mom. It is very difficult to diagnose CC as the symptoms can mimic other diseases also. This is what I have learned and this is what we have seen on this board. I agree with Jamie in that you should talk to the physicians. Also, have her CA 19-9 been elevated? Does your Mom have any pain? If you peruse the search function on top of the page, you will see many discussions on vomiting due to varying reasons such as an obstruction, or motility caused by a tumor, etc. Is your Mom able to hold down any food at all? You also have mentioned that she cannot go to the bathroom. Has the reason for this been explained to you? It might help to have a notepad with questions ready; crossing off everything as you go. You will be your Mom’s best advocate by staying proactive. I am a big believer in second opinions (at least, one more) so you might want to gather all records and search for another expert. The members on the board have always been very helpful in recommending someone they have had good experiences with. Please, stay in touch and good luck.
I am sending my best wishes your way,
MarionJune 16, 2009 at 4:37 am #29595tiasmealMemberThey are not doing anything for my mom. They said it was to late for chemo and the cancer has spread. She is still in the hospital in jersey. I do not know if the doctors specialize in this cancer. Personally I think they are all quacks, because they can not determine if it is cholangiocarcinoma without another biopsy which my mom refuses to have. They have already taken two. She is in alot of pain. They are giving her stool softners saline magnesium (?) and potassium. Tia
June 16, 2009 at 4:31 am #29594jamie-dMemberHi Tia,
I am so sorry to hear about your Mom. How old is your Mom and what are the Drs doing for her? Is she at home or still in the hospital? Where is she located and what hospital? Have they dealt with cc and if so how often. My suggestion would be to make sure you have a knowledgable Dr with this disease and even then get other opinions. The one thing I believe about this awful disease is that it can’t be predicted. I was told originally (Oct07)maybe I’d be able to see my daughter graduate (may08). Well I was there and I’m still here. Others have had the disease progress faster than expected. There can be alot of reasons for the nausea and vomiting. I think you need to talk to the Dr and ask what they think and also what they will do to help her. Have they given her any medicines to help with the nausea? Is she on oral antibiotics for the infection? Sometimes antibiotics can make you sick to your stomach. Not sure this helps but I know others will answer and be able to add more. You’ll find wonderful people here. I’ll keep your Mom in my prayers. God Bless,
JamieJune 16, 2009 at 4:06 am #2416tiasmealMemberHello, everyone
I have been on this website a few times since the beginning of May. My mom was in the hospital the end of march and was diagoned with liver cancer. The did a biospy and found it to be cholangiocarcinoma but do not know if it is primary or secondary. The test were not sure. Last week my mom went but into the hospital with high sugar and calcuim levels. They have come down, but know she can not go to bathroom or eat. She has been vomitting yesterday and today. The doctors orginally gave her 6mths to 18 mths, but I feel she is declining fast. Has anyone else gone through this? I am really scared. I know she will never get better, but I do not want to lose her so quickly. Why can’t she eat anymore with out feeling sick.
Thanks, Tia
PS My Prayers are with all of you as well.
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