Hi, just wanted to share some information about this supplement. My Mum's been taking it for the past two months and although it's not making miracles, she's feeling better than - according to the doctors- she's supposed to. Actually I believe that the fraze they used was that "with her clinical results she should be dead by now" (seriously!!!!). Don't know if it's just the placebo effect (she really believes it's working) or what, but despite the fact that her disease is still in progress (second choice chemo didn't work...) she still has some good days (even went shoppping and to the hairdresser last week).

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(15 replies, posted in Chemotherapy)

Thank you Marion, I will definitely keep on coming back, your are all being really supportive and it helps.
All the best from my family and me, Kate

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(15 replies, posted in Chemotherapy)

Lainy, I talked to my Mum's doctor today. Thay did a blood culture but it showed nothing so they think the fever is caused by the disease itself.

The bad news are they found new metastases in the liver so the strength is really needed now (thanks for the wishes, Marion!). My Dad and I decided to try the less traditional chemo and will be talking in a few days about switching to Nexavar and Sutent. I browesed through the site and contacted some people personally and apparently some people tried it and it worked.

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(15 replies, posted in Chemotherapy)

Marion,
Thank you for the advice. Actually, Mum has two stents. Previously, when she had fever, doctors said it was an infection but this time the blood tests apparently suggest it's not and they are not really sure what is the reason.
All the best, Kate

I  don't really pray but will keep you in my thoughts and keep fingers crossed. Sending all the positive energy I possibly can!
Best wishes, Kate

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(15 replies, posted in Chemotherapy)

Hi,

Thank you for the information. I am not sure why the doctors decided not to go with radiation, but I'm going back to my hometown this week and I'll talk to them and ask all the questions I was meaning to.

To be honest I got really depressed after the information about the chemo not working, but now I think I begin to have hope again. You are so right - thinking about it as a chronic disease makes it a bit better. The best advice I got, though, was not to think about future at all and try to live the day. Not sure if that's possible at all but since I'm moving back home I will do mmy best to make my Mum think more about the positive sides of life.

We are also going to try AVERMAR and maybe AHCC, tomorrow Dad is talking with the doctors. Hope it will help.

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(15 replies, posted in Chemotherapy)

Hi,

Sorry I haven't written back sooner, had lots of exams and last weeks were rather hectic.

The bad news is that the chemo is not working. The doctors made MRI and decided to switch to 5-fluorouracyl. I am not completely sure what to think about it, does this one is stronger tha gemzar? Mum says she's feeling worse and she's been having high fever for the past couple of days but she blames fresh fruits she's eaten. Still, I am not living with her at the moment (although I decided to move back home for couple of months so I will be able to observe her myself) and I know mt parents are not telling me everything in order not to upset me...

I am getting more and more confused. I know that chemo will not cure her completely but if it is not helping her at all is there any chance something else will?

Best regards,
Kate

Hi Erica,

For all I know stage 2, especially since the cancer hasn't spread, isn't that bad! So don't loose hope. My Mum is stage 4 and she's lost a lot of weight because of chemo too and the doctor suggested she drinks this thing called nutridrink - it also works for my friend's son with Cystic Fibrosis, so I daresay if its save enough to give it to a two year old is save for your Mum as well.

Margaret, thank you for the leg cramps tips will try them out with my Mum.

All the best to you and your families,
Kate

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(15 replies, posted in Chemotherapy)

Hi,

Thank you so much for your prompt responses. It's quite a relief to be able to talk to people who are in more or less the same situation and know what we are going through. Even if it is only a virtual talk.

Lainy, tahnk you for the warm welcome, I'm also glad I've found this forum, although I wish I never had to... My Mum is on some kind of medications that are supposed to prevent nausea and they were working so far, it was only the 3 dose that caused all those side effects. Thankfully she hasn't lost any hair so far, which is really good for her self-esteem I have to say.

My Mum is living with my Dad and my brother. They are both working full time, though and even though my Dad is being extremely supportive and is  with my Mum every time she goes to the doctor or to the hospital, he can't be with het all the time. Neither can my brother. I've been trying to perduade my parents to get someone to care for the house and my Mum (especially since we can afford it) but they don't want to hear about starngers in their house.. so I'm really happy that I graduate next month and will be able to spend some more time with her.

Lilack - thanks for the  link! My Mum is only on Gemzar, not on any kind of combo, which suprised me a bit, especially after going through all the posts on the forum, where almost everybody mentioned at least two medications they were on. Anyways, hope your Mum is feeling all right! Give her my best.

PCL1029 thank you for the advice. I will consult my Mum's doctor. Right now she's taking medications but they don't seem to be working. Still, today she feels much better and was even a bit irritated that I called her again to ask how she was, which in ger case ia definitelly a good sign smile

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(15 replies, posted in Chemotherapy)

Hi, my name is Kate and I'm form Poland.

Sevent months ago my Mum (47 now)was diagnosed with obstructive jaundice. Two month later the doctors said she had cancer, she's got Clutskin tumor, stage IV accoring to Bismuth- Corllet classification. Needless to say, it was too late for resection. The results of biopsy read as follows:

Adenocarcinoma probabiliter cholangiocarcinoma invasium hepatis. The test for the presence of the mucus: positive. immunophenotype of the cancer cells: CK7(+), CKAE1/AE3(+), CK19(+), CK5/6(-), CDX2(=), PgR(-), ER(-), CEA(-), TTF-1(-), WT-1(-)

Hope I translated everything correctly.

The doctors decided the chemiotherapy (she's getting only Gemzar for some reason) is the best option for her but because she's very weak, she's getting very small doses - one dose a week for three weeks, one week brake, and so on. Now she's havong thord cycle and the side effects begun- the nausea and diarrhea. She can hardly eat these days and spends almost all day sleeping.

I dont live in the same city and can't be with her on the everyday basis. I don't really know what to do and how to help her. The goods news is that it's been seven months now and she's still with us. Nevertheless I know things can get worse.

I think the very least I can do for her is to ask for help- maybe someone could give be piece of advise on what helps during chemo that is based on Gemzar only - I don't know if the same things help for all the types of chemo.

Thank you in advance,
Kate