Topic: gemcitabine/ cisplatin questions

I am on my 3rd week of this combo i have the two weeks then one week rest cycle so so far i have only taken it twice. It seems to be okay so far i get upset stomach sometimes and headaches/tiredness a little hair sheding but not much it does get really itchy though i am just wondering if it gets worse as it goes along i have never taken chemo before so im not sure what to expect i heard this is a milder chemo and im not supposed to lose my hair or anything. I also have cealic disease so im allergic to wheat and i cant tell sometimes if my stomach problems are from that or the drugs. Im pretty sure its the drugs because i am very carefull to not eat wheat.
Also is it safe to take peptol bismol if i get diharea i know they give me pills for when im feeling sick but i think that is more for if i have to throw up. I am okay with not taking anything and drinking water and letting it run its course just sometimes if i want to leave the house or if people come over and im feeling sick its not comfortable. i have cancer cells in my liver so i know drugs are hard on it wanted to ask before i do anything to make matters worse than they already are!
One more thing i was wondering is how much hair do people normaly lose on this combo i was told by the oncologist i would lose my hair but the nurses one said no one said i might. its been really itchy and if i run my hands through it a little sheds and when iwash it but not alot so i dont know if it gets worse the more i take the chemo or if now that i have done it twice this is how it is and it will just be like this for the next 6 months. not sure what to expect.

Re: gemcitabine/ cisplatin questions

lostsoul....as far as I remember you are being treated with Gem/Cis.  Although, the side effects vary greatly Cisplatin is known to cause hair loss. It is possibly though, as we have seen it to be on this site, that you will only experience some thinning of the hair. 

I would make sure to follow the advice of the physician in regards to the treatment of the diarrhea however; I am enclosing a link for you also.  Most likely Dr. Knox will agree with the recommendations given by the NCI.
http://www.cancer.gov/cancertopics/copi … s/diarrhea

When are you scheduled for your next scan?  It must be coming up soon.

Hang in there, you are doing great.
All my best wishes,
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: gemcitabine/ cisplatin questions

Thank you! Yup thats what im on next week is my forth week and 3rd iv i still have a while to go. My scan is on january the 11th! i am hoping for good news. Thanks for the link i have an appointment with her on tuesday and my next chemo on wednesday it doesnt seem to be too bad so far. Some dyas worse than others.

4 (edited by PCL1029 Sun, 27 Nov 2011 18:39:52)

Re: gemcitabine/ cisplatin questions

Hi,
You can get Imodium (Loperamide)over the counter for diarrhea.
Take  one capsule if you may anticipate the diarrhea is coming.or every 4-6 hours as needed  for diarrhea;not to exceed 8 capsule per day.You can also open the capsule and mix the powder with liquid and take it that way too but i do not know how it will be tasted like.(you can also buy the Imodium in liquid dosage form too)
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: gemcitabine/ cisplatin questions

Hi. I had 3 cycles of gem/cis and I did not lose my hair.  Maybe a little came out but I didn't have bald spots or anything.

Best of luck to you!
Susie

Re: gemcitabine/ cisplatin questions

Hi Lost soul,
My daughter, Lauren, is on Gem/cis and 5-FU. She has had 5 cycles so far. She is losing her hair alot. She started out with really long, thick hair. She got it cut to her shoulders and it started looking bad. So she got a pixie cut. I am sorry to say it is so thin on top that you can see her scalp. I don't say anything. I'm just waiting for the day she will probably want to shave it all off. It is really thin and she gets cold easy. I feel so bad for her. I hope you have a better outcome. Maybe it's from the 5-FU. I don't really know. Wishing you all the best.

Love,-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.

7 (edited by eli Sun, 27 Nov 2011 21:42:24)

Re: gemcitabine/ cisplatin questions

Hi lostsoul,

Talk to your oncologist about diarrhea. They treat it all the time. Imodium is usually their first choice for mild cases. If Imodium doesn't work, they have other drugs at their disposal.

BRAT diet is another thing they may recommend:

- Bananas
- Rice
- Applesauce
- Toast
- Plain pasta

You said you are allergic to wheat. Can you eat gluten-free toast/pasta?

Best wishes!!

Eli

EDIT:

I went back and re-read your introductory post. You mentioned that you couldn't afford a dietician.

As a cancer patient, you should be able to see a dietician at Prince Margaret. Ask your oncologist for referral. My wife is being treated at The Ottawa Hospital. She sees a dietician on a regular basis. It's all covered by OHIP.

Re: gemcitabine/ cisplatin questions

Thank you for your input i had a doctors appointment yesterday with her and my first round of the second cycle today so i asked her yesterday. The nusrse said that since my head has been very ithcy that means that it might be getting ready to fall sad and that it might fall in patches or bald. its itching soooo much i notice quite a bit of sheding in the shower now too i try not to wash my hair too soon im scared its all gonna drop when i go in i guess im ready for that! yay for scarves!

I asked about the immodium she said its okay but not to take too much of it i wasnt planning on it only if its really bad. I will follow that bananas and rice plain foods diet that seems to help and yes i do follow a gluten free diet i try to stay away from dairy and too much sugar when i can too i think it bothers me more now with the chemo sad which sucks because i loveeeee cheese but you gotta do what you gotta do!

Good news though im always hungry hungry hungry and my jaundice is almost gone which she said means my inflammation is almost all gone so the chemo could be working! smile im happy with the results from my first cycle of  chemo i hope it stays like this. one down 5 more to go.

Re: gemcitabine/ cisplatin questions

Hi, Lostsoul,
I was on Gemzar/Cisplatin from Sept. '10 to June '11 and my hair got very thin.  I had gotten a wig just in case I would need it.  But since it did not come out in patches, I did not really need the wig.  When I was off of chem for three months, my hair grew back, but now that I have started the chemo, again, I am beginning to notice more hair in the comb.  I have only had chemo three times so far as I have had to cancel a couple of times because of low platelets or white blood cells.  I was hoping to do 2 weeks on and 1 off, but it looks like the most we can hope for this time is every other week.
Best wishes to you.

Re: gemcitabine/ cisplatin questions

i am on my 2nd cycle so this is the third time having it cause i am on the two weeks one week rest last week was my rest i do notice it really really itchy did that happen to you before it started to fall in patches? i guess everyone is different one nurse said yes yes it will fall lol one said no its not and then one said i might or might not the one who said yes said the itching and burning is what happens  before it falls i wish it would just happen if its gonna happen i think the anticipation of knowing it might or might not fall or you might or might not get really sick is what makes me and probably most people nervous .  I guess its not the end of the world as long as this thing is making me better! i can deal with some hair loss and sickness for 6 months or longer if need more just fix me... stupid cancer grrr..*shakes fist* at least it looks llike its working! cant wait for my cat scan in jan!

Re: gemcitabine/ cisplatin questions

Dear Lost Soul, You are really doing quite good and your attitude helps so much. I remember when our Kris was worried about her hair and she opted to have it taken off and got some cute hats then decided to jump to wigs. Stupid cancer is putting it mildly, you are way too nice! I will be wishing for the best Scans ever for you in January. Be strong and take care!

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.

12 (edited by Pamela Thu, 01 Dec 2011 09:56:18)

Re: gemcitabine/ cisplatin questions

Dear Lost soul,

My Lauren has the same itchy head. Poor kid is really looking bald on the top of her head. She had a doctor'd appt. yesterday and I asked him which chemo was making her hair fall out. (She is on gem/cis and 5-fu). He said none of them were actually known to make hair fall out, just thin a bit. He said the combo of all three together probably is the culprit. I think she is getting pretty close to shaving her whole head. The one positive that will come out of that is that my son will have to shave his head too. My husband and son said they would shave their heads if Lauren did to show their support. Right now my son looks like Wolverine. Long sideburns and a huge mop of hair. It was funny, yesterday at the oncologists, the doctor said to Lauren, "Your hair is really thinning, do you want a hairpiece." The way he said it cracked us up because it sounded like he had a little wig shop in the back and could go whip one up for her! We had fun with that all day. For all the sadness, you gotta have a little humor. Personally, Lauren and I don't care for wigs. We think a bald head shows a person to be a warrior and they are fighting. Not to say people who wear wigs are not warriors as well. Everyone should have that choice. Well, I hope everything goes well for you.

Love,-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: gemcitabine/ cisplatin questions

Hi Pam. I really think that Lauren is so beautiful that no hair will enhance her big eyes even more! I can see her in some floppy hats, gorgeous! New trend setter. I love that others will follow her new look.

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: gemcitabine/ cisplatin questions

Lost soul,
I did an 8 cycle course of gem/cis from november 2010 to april 2011. I did have hair thinning, but not complete hair loss. I have heard that nioxin shampoo can help. I did find that the gem/cis was ok to handle. I didn't have much in the way with nausea, but the meds for that are awesome. For me attitude is a key in keeping myself feeling good and I try to keep as normal a routine/life as possible. I am currently doing an oral course of Xeloda and the side effects are effecting me more. Good luck to you and I will keep you in my thoughts.
Shari