MY mom

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,
Wendy

Tia;
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,
Jamie

Hi 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,
Wendy

Tia,
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,
Jamie