starting chemo on may 1 – any tips

Hi Ash,

Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your mum. But glad that you’ve joined us here as you will get tons of support and help from us all.

I can’t help you with personal experiences about chemo as my dad never had that, but I know that you will get a ton of responses from the great members here. Also, have you looked at our chemo board that can be found here –

http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16

There are tons of posts on it from our members and I am sure that it will be of use to you and your mum. Also, as your mum is being treated under guidance from Dr Javle at MD then I know that she is in good hands. If we can help you at all then please just ask away.

Best wishes to you and your mum,

Gavin

Hi,
welcome to our small world.
1. Gemcitabine and Cisplatin are the current standard of choice of Tx for cholangiocarcinoma(CCA). there are still many other regimens to choose from if this one is not suitable for your mom in the future.
Gemcitabine is easy to take,minimum side effect like low platelets count is one of the the most stand out side effect. Nausea and vomiting,loss of hair,fatigue,body ache,nephrotoxicity(kidney);hypomagnseium and hypopotassium are side effects of cisplatin. Nephrotoxity is accumulative and therefore ,depending on the health of the patient,after certain # of cycle(ie: 6 cycles) ;review of the regimen may be a good way to protect esp. the kidney if the side effects cannot be tolerated well.
To start the chemotherapy each time overnite is a good idea and I don’t know why we cannot do this here in the States. It is less anxiety to the patient and they can sleep thru some of the unwanted side effects of the chemotherapy.
2. 63 years young and otherwise healthy individual after left liver resection, (even had a lympth node positive involvement )has a good chance to live long enough for the next new thing to come in radiation oncology or/and medical oncology to extend our lives with much less side effects and enjoy God’s mercy for those who suffer. I do not see a “magical pill “will be discovered in the near future like penicillin for infection that provide a “CARE” for us.
3. Continue to pursuit other options such as radiation treatment ;read and learn about it and other development of treating this CCA is the way to handle this disease. I am a CCA patient for 35months,like your mother,I had the left lobe completely resected;on gemcitabine for 14 months;off the chemotherapy for 6 months,CCA came back;RFA and chemoembolization; then re-resection again.Now is only on Xeloda(pro-drug of 5FU);and the rest is up to God’s mercy.

what I am trying to say is this; CCA is a long and winding road to navigate ; it require courage,knowledge and patience; it is not easy but it can buy time for your mother.
keep in touch,
God bless.

Hello Ash,

Welcome to this site. I am sorry your Mother has to go through this. My daughter has cc and has been on chemo since Sept. 2011. She had Gem/Cis and 5-FU. Recently, the Cisplatin has been dropped because her oncologist said it is too hard on the kidneys to be used for that long. I would say that the Cisplatin was the hardest on her. It was hard on her platelets. They were low quite often. She also lost her hair. We are not sure which chemo did that. She was tired and achy for a few days. Make sure to ask for nausea medicine in the iv when she gets chemo and keep taking a pill form such as compazine for a few days after chemo. Take it around the clock, even if she doesn’t feel sick. Because once you get nauseous, it is hard to get it under control. There is also a popular drug called Zofran that a lot of people use. We discovered that Zofran gives Lauren very bad headaches so she cannot take it. I am not a doctor. This is just what works for Lauren. Since Lauren has been off the Cisplatin, you can’t even tell she just had chemo. She has way more energy and feels better. This is how I know that Cisplatin was the chemo that made her feel bad. Everyone is different, and everyone has different reactions to these drugs. I would also say to keep some food in your Mom’s stomach such as toast, crackers, noodles, and rice. This also helps with nausea. I would go into this with a positive, fighting spirit. Having a good, upbeat attitude really helps. Lauren’s doctors always say they are trying so hard to help her because she has such a positive attitude and is such a tough fighter. I wish you all the best. Let us know how everything goes and if you have any questions, please feel free to ask on here or you can e-mail me.

-Pam