Topic: Gemzar/Cisplatin - experience/what to expect??

Hi there guys, I was wondering if I could get some information from you all, we saw Dr. Javle two days ago and the lung biopsy came back positive so mom starts chemo this Friday. I'm flying down to Houston since I don't want her going through this ordeal without me by her side. Can you please give me an idea as to what to expect, side effects, hair loss? should I get her hair trimmed/buzzed early? Does the hair fall out right away? She is so scared of losing her hair, I think this is causing her more grief than the agony of sitting at the hospital for 6 hours.

She will go through 4 cycles every other week, ideas on how to many time go by fast when we are there, anything and everything will help for me to get an idea as to what to expect and how to deal with the ordeal that is upon us.

Thank you so much in advance.

Re: Gemzar/Cisplatin - experience/what to expect??

Hi there,

My mom is having gemzar/cisplatin at the moment and the side effects are relatively mild. After 3 rounds she still has her hair altough it is a little less. But you can hardly see it.
Especially the second and third day after infusion my mom suffers a lot from nausea (even with meds) and loss of apetite. And I think tiredness is a symptom that most people will experience. But like i said at the moment the side effects are relatively mild and i hope they'll continue this way.

I hope they will be mild as well for your mom.
Keep hope and be strong for her.

JvN

Never give up, your miracle is on its way

Re: Gemzar/Cisplatin - experience/what to expect??

Dear MMML, sorry to hear about your Mom's biopsy. I can't help on the chemo but to pass time, I know I love Scrabble and have a small portable Scrabble Game I take on trips. If not that, any other small Board games would do. Do you both knit or anything? I laugh when I think of my first mother in law and how I would sit with her through her 10 years  with Lukemia. Well, I decided to knit a  cardigan sweater. That was my first mistake. Came time to put it together and I had knit 2 left sides!
Oh, you could also have a box filled with materials to make some Family Albums together. Best of luck to her and who knows some of the chemo stuff may not even happen.

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: Gemzar/Cisplatin - experience/what to expect??

Hello MMML,

My partner Ben has gone through two full protocols - 8 cycles in Dec-April 2011 and just recently Jan through June of 2012) of Gemzar/Cisplatin.  He had very few side effects through both regimens.  Not everyone experiences hair loss.  Ben did experience some hair loss on the first regimen a after the first two rounds of chemo....eventually he shaved his head as it became more noticeable (but as a man with short hair I think that's an easier decision).

Unlike other chemos - from what I know with GEM/CIS not everyone experiences hair loss - and it doesn't all just fall out at once if they do; so I would recommend just hang in there until you see what happens.

(if you care to look through some of my historical posts I did post more details on the chemo - but to save you time - it was mostly a long day, and he felt tired a lot of the time throughout chemo but still able to function).

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Gemzar/Cisplatin - experience/what to expect??

My daughter, Lauren started out with really long, thick hair. She got it cut to chin length right before she started chemo and donated her hair. She was on Gem/Cis and 5-FU. Her hair started falling out a lot after 2 or 3 months. She got it cut really short because she was getting hair everywhere. She never shaved it, but it was so thin you could see her scalp. If she had it to do over, she would have just shaved it all off instead of trying to hold onto it after seeing pictures of how bad it looked. We think it was the Cisplatin that made her hair fall out because she was taken off Cisplatin later and was only on the other two chemos and her hair started growing back. She is on two different chemos now and her hair is short but really thick and growing! She had a couple wigs, but was too hot in them. The only other side effects she had with Gem/Cis was being really tired and achy and a low grade fever for a few days after. Her platelets dropped a lot too from the Cisplatin. They have to be 100,000 or greater to get chemo where she is treated. Everyone reacts differently to every chemo. I hope your mom has an easy time and tolerates it well. As for things to do during chemo, Lauren brings her laptop, knits, watches tv, reads magazines,
snacks, and naps. Take care and good luck.

-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: Gemzar/Cisplatin - experience/what to expect??

Hello-When Dr. Chapman told me all that was wrong and told me about my chemo /radiation plan, he started with "You probably won't lose your hair", I didn't have to ask!!! I think that is every womens #1 anxiety issue!! MY chemo/ radiation was "not bad", chemo days usually meant lunch and shopping!! I would be very tired about 48-72 hours later and sleep for a long day. All my nasuea was controlled with 3 anti-nasuea meds (I always had something in my system), tiredness just meant more naps. I missed chemo once because of bad blood work. Chemo an.d radiation is accumalative so probably more towards the end up she will have more side effects.
Good luck and lots of prayers-Cathy

Re: Gemzar/Cisplatin - experience/what to expect??

Hello,
My hair thinned but I did not lose it on Gem/Cis or 5FU. The chemo made me tired and a little nauseated but nothing too bad.
Good luck
Lisa

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: Gemzar/Cisplatin - experience/what to expect??

Hi....I had 4 cycles of Gem/Cis and lost no hair and had no side effects.....after surgery I received 5-FU..leucovorin...oxaliplatin..and 2 other chemo meds which I forget now...I lost no hair and had no side effects with them...third time I had chemo it was Abraxane...Xeloda....Nexavar...and Oxaliplatin...this was not as kind a combination as the other 2....I lost my hair it started to thin the 3rd week in and then just came out in droves I lost all of my hair within 1 week not to say that happens to everyone all of us are different. I also had hand foot syndrome which I think was caused by the Xeloda..Nexavar...and Abranxane combo. Best of luck to your Mom..you are a wonderful daughter being by her side through all of this I'm sure it gives her more comfort then you will ever know.
Nancy

Re: Gemzar/Cisplatin - experience/what to expect??

Thankyou everyone, it's just been a roller coaster ride, we were hoping for the biopsy to be negative but I guess God has other plans for us. She won't be pleased about me leaving my family behind again  but she will have to deal with me once I surprise her tonight.

I need to be strong but it's so hard, I don't want her going through this ordeal and wish we were not going this route... Oh well...thanks again everyone for your input.

Re: Gemzar/Cisplatin - experience/what to expect??

The first chemo was good, she was so relieved to see me and upset at the same time. The 6 hours went by fast, laughing, watching silly videos on youtube ...now we wait a week and second round begins. She did have a little nausea last night but seems to be doing well today. I just hope the chemo works since dr. javle said her is a 50-50 chance.

Re: Gemzar/Cisplatin - experience/what to expect??

Hi MMML,

Thanks for letting us know how your mums first chemo went. I am very glad indeed to hear that it went well for your mum and my fingers are crossed that her second round goes just as well too. Did they give your mum anything for her nausea? I hope the chemo does it's job for your mum and let us know how round 2 goes as well.

Hugs,

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: Gemzar/Cisplatin - experience/what to expect??

Yes she was given medication via iv for the nausea, and has an rx for Ondansetron 8mg. I ws wondering if anyone here has been through this same experience where the cancer had spread to the lungs and if the chemo had helped at all. She is overall better in terms of doing her daily chores but has some trouble with eating her meals  everyone and then. She does take nexium on a regular basis  which helps a little.

Re: Gemzar/Cisplatin - experience/what to expect??

MMML....great to hear that everything worked out well especially as it was her first chemo treatment.  May the good things continue and may your Mom belong to the 50% of patients responding favorably to this regimen.
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: Gemzar/Cisplatin - experience/what to expect??

Hi,
I just finished 2 rounds of gem/cis with very mild side effects.
I get achy body on the night of chemo but nothing else so far.  I, too worry about hair loss but it hasn't effected me yet.  I'm on 2wks on 1 wk off schdule.
I have no problem with eating and maintaing my weight. My nurse told me that nausea seems to be the most common problem.  Hope she tolerates well.

Re: Gemzar/Cisplatin - experience/what to expect??

Thanks LeeAnn for sharing, she seems to be getting tired a lot and has to go lie down every hour for a bit ; that's expected but other than that she seems to be ding well.