Topic: starting chemo on may 1 - any tips

hi friends,
my mother had a left hepatectomy on mar 17, for a case of intrahepatic cholangio with spread to the celiac lymph  nodes (1 out of 2 nodes positive).  we live in india, and are getting treated here (under the guidance of dr. javle from md anderson, who has kindly consented to help us).
she will be starting a chemo combo of gemcitabine and cisplatin from tues.  she is a healthy and fit 63 year old, with no health problem (liver has been fine too).
any tips on getting physically and mentally prepared?
the plan is to keep her overnight, and the chemo will be delivered via a port.

appreciate your input,

ash.

2 (edited by Pamela Sat, 28 Apr 2012 05:38:13)

Re: starting chemo on may 1 - any tips

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

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: starting chemo on may 1 - any tips

Hello Ash and welcome to our wonderful family but sorry you had to find us. Can't help with the Chemo as my husband never had it but I do know you are in excellent hands with Dr. Javle even if by long distance. I also know that an upbeat attitude sure helps a lot. I am wishing for your mother to go through her chemo like a breeze. Please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: starting chemo on may 1 - any tips

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: starting chemo on may 1 - any tips

Ash,
I'm sorry to welcome you to this site, also, but you have found people with a wealth of information and experience. All of us on this site are dealing with cc in one form or another: either as the patient, caregiver/family member, surgeon, etc.
I was on Gemzar/Oxaliplatin. Oxaliplatin is another of the platin drugs, with similar side effects. I am now on Gemzar/Xeloda. Gemzar seems to be a constant with cc. I tolerate it quite well. My side effects after about 12 rounds of Gemzar continue to be low blood counts and tiredness for 1 day. That's about it. From what I've read, the platin drugs are harder on the body. My side effects from oxaliplatin were nausea and neuropathy. I discovered it was easier to just let myself get sick 6 to 8 hours after chemotherapy. After about 45 minutes, I was never nauseous until the next round.
As far as mental preparation: just know we call this a roller coaster ride for a reason: there are lots of ups and downs. It's very tough to deal with.
I hope your mother tolerates the chemo well. And I really hope she keeps a positive attitude. That really helps.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: 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 … .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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: starting chemo on may 1 - any tips

Dear Pam, Lainy, Kris, Gavin, Moderator and all the other wonderful people on the site:
Thank you so much for all your help and encouragement. It is extremely informative and comforting.  We start tomorrow and are praying and keeping our fingers crossed at the same time.
I am sure i will be visiting frequently for your advice.

PS- is it possible to configure the settings, such that you receive an e mail, everytime sometime posts a reply to your query. I thought that would be the case, so did not check the page till almost 48 hours later and was pleasantly surprised to see all the replies.

Re: starting chemo on may 1 - any tips

cholangio...many good wishes are heading your way for tomorrow's treatment.  Know that we are here for you, anytime.
In regards to instant notification per personal e-mail: unfortunately, at present we are not able to fulfill your request. However; your suggestion is well received and will be brought to the attention of our webmaster, Rick.
Fingers crossed for tomorrow.
Please stay in touch.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: starting chemo on may 1 - any tips

Ash,

When you reply to a post there is an option to "subscribe to this topic".  It's right under the message square (when you preview message) and right above "submit reply".  Just put a check mark in the box and you will get email notification that something has been added to that thread whenever someone replies.  I'm sure it's also available if you just submit without previewing.  This way, you do not have to get notifications for all threads.

Kathy

Re: starting chemo on may 1 - any tips

Hi Ash,

Thanks for letting us know that your mum starts her chemo tomorrow. I hope that it goes very well for her and I will be keeping my fingers crossed for the best possible outcome to this. And please let us know how she gets on with it.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: starting chemo on may 1 - any tips

Ash-Welcome and sorry you had to find us. I am a CC survivor I will be 3 years cancer free on May 24, 2012!! I have my story and another CC story on my FB page (Catherine Sims Dunnagan), there is HOPE.
I had chemo and radiation, both with very little side effects. I ALWAYS took 3 nausea drugs (compazine, lorazapam and zofran) so I had liitle if any nasuea. My chemo days meant lunch and shopping! I would become extremely tired abiut 48 hours later and would be wiped out for about 24 hours.  I did miss a chemo due to low counts. Radiation was good till about a week after the 6 weeks were over and then I became extremely exhausted for several weeks. My oncologist also recommended a low dose antidepressant.
Lots of prayers for your mom tomorrow-Cathy

Re: starting chemo on may 1 - any tips

Dear friends,

thanks once again for your support and encouraging messages. I am happy to report that the first day of chemo went off well.  It was an extremely long day, with the IVs starting at 10 am and going on till almost 10 pm. First, there was the hydration IV, followed by an oral anti-nausea, followed by gemcitabine, followed by some IV to flush the kidney, then saline again, followed by cisplatin, followed by anti-histamine and anti-nausea med again.

She was overnight at the hosp, and is going home now. smile

Re: starting chemo on may 1 - any tips

Hi Ash,

Thanks for letting us know how your mum got on with her first session and thats great to hear that it went well for her. I am sure that after that session she will be very glad to get home! And please let us know how she continues to go with this.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: starting chemo on may 1 - any tips

My mother just had her first round of chemo on Monday the 14th so I am here with you, at the beginning and wondering and anxious about the journey. My mother also tolerated her first round of Gemzar and Cesplatin well and is also on oral Xeloda every day for 2 weeks. She did get a UTI (urinary tract infection) and I am wondering what that's about but it was affecting her ability to sleep. The day after chemo she gardened, she cleaned bird baths, she went out to buy a new computer, and she went to dinner with friends. Now, 3 days later, she is very tired but still going out.

I have heard that the second round can be harder than the first so I hope she does not have a false sense of ease about chemo but then again, I am just trying to stay present with it all and enjoy these good days and not prepare for the harder ones. That's my plan at least.

Re: starting chemo on may 1 - any tips

Melissa:
It's great that you mom is able to do all that after chemo. Just make sure she cleans well after working with dirt, bird droppings, etc. as her blood counts might be low. So she will need to be careful about germs. And also make sure she uses good strong sunscreen! I specifically asked my onc about gardening and she said as long as my counts were low to refrain from gardening, or to be very careful that I clean thoroughly afterwards. And if I went out in the sun to wear 30+ sunscreen.
And I say as long as she has no side effects, let her be as normal as she can be. On my tired days I take it easy. On my "good" days I go dancing!
Good luck to your mom.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: starting chemo on may 1 - any tips

Wow. Thanks Kris. I had no idea to think about the germs in dirt and bird poop but that is good to consider. My mom is also super tan and never wears sunscreen so I will have to talk with her about that. Are you more sensitive to the sun now, or what is the reason for sunscreen?

Hope you get to go dancing soon!

Melissa

Re: starting chemo on may 1 - any tips

Melissa:
Yes, I seem to be more sensitive to the sun. Athough I really wouldn't know since I wear sunscreen IF I go out during the day. And if she is already tan, it might not matter.
I have also become a bit of a germaphobe. I wash all my fruits and veggies before eating. This includes washing cantaloupe and watermelon BEFORE cutting them. Onc nurses taught me that one. They said the dirt will go with the knife thru into the edible meats. Better to be safe than sorry, right?

And I went dancing last night!!! My feet and hands are starting to burn but I'm doing what I can. I say cancer has taken enough from me... it won't get more without a fight!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: starting chemo on may 1 - any tips

Yes! Keep fighting and dancing Kris! And thanks for the advice...think like a germaphobe! Now, any suggestions for swollen legs that will not go down due to blood clots? That's my next area I need to study.
-Melissa

Re: starting chemo on may 1 - any tips

Kris made a very important point. Blood counts can drop like a stone right after the first chemo cycle. Chemo patients can develop infections from their *own* germs, because weakened immune system is no longer able to keep them in check.

My wife took every precaution possible when she started chemo. Yet she quickly developed mouth and throat sores (very uncomfortable). Our oncology nurse said that's very common and that it could have easily been my wife's own germs.

So yeah, bird's poop is not a good idea.

Re: starting chemo on may 1 - any tips

I just copy and pasted these last posts and emailed them to my mom. I told her that we need to rethink these normal activities and be a little more careful. She does not appreciate that this is going to affect her life but maybe she can use gloves when she gardens or clean bird poop now.

Thanks for helping me realize these very basic things. I have so much to learn!

Melissa

Re: starting chemo on may 1 - any tips

Melissa: I don't know what to do about swelling legs etc. But I do know my onc asks about it. I would call if it's concerning you.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: starting chemo on may 1 - any tips

Thanks Kris. I did ask and he says that there is nothing more he can or would do. It might just be like this for the rest of her life. That s a huge quality of life issue for her. So if he has no medical recommendations, I wonder about other therapies. Maybe I'll go over on the CAT page and poke around there.

Thanks again!

Melissa