Topic: Mum on chemo (only Gemzar)

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

Re: Mum on chemo (only Gemzar)

Hello Kate and welcome to our wonderful family. I do believe you are our first member from Poland!:)  I am very sorry to hear of your Mother's journey with CC. Gemzar is one of the more popular choices for Chemo and many times it is given with Cisplatin. We call it our Gem/Cis cocktail.
If Mom is getting nausea from the chemo there are many things the doctor can order for her nausea. There are also meds for the diarrhea. No need for her to suffer from the chemo. I have a suggestion, can you talk to Mom's doctor and ask him any questions you have? Also if Mom has not told him, you need to make him aware of what she is experiencing with side effects.
We cannot predict what any outcome will be as everyone is so different. The best we can do is to be strong and be realistically optimistic. Is anyone around who can help Mom? I know it is so hard when you are in separate cities. You have come to the best place here on our CC site and I know some other members will show up soon with some more ideas. Please keep us posted as we 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.

Re: Mum on chemo (only Gemzar)

Hi Kate,
My family and I are also from Poland (Stalowa Wola)  but now live in the United States.  My mom who is 56 has been fighting CC for the past 5 months.  As Lainy has said, Gemzar is usually administered with another drug such as Cicplatin.  There are other options and combinations though.  My mom has been tolerating this combo well but I know that the doctors give her nausea medications, as well as steroids for the few days after her treatment.  Also, I would  suggest that you listen to this webinar http://www.cholangiocarcinoma.org/treatment.htm  that took place several weeks ago.  As you scroll down, it's the second one titled "Review of Chemotherapy Treatment in Bile Duct Cancer". 
All the best to your mom.

Re: Mum on chemo (only Gemzar)

Hi,
As always, please confer with your doctor first  before any change of administration medications suggested by this web site including me who was on gemcitabine for 14 month. This is for informational purposes only.
BEFORE Tx
1.Give lorazepam  0.5-1mg or alprazolam,same dose, by mouth 30min. before the start of chemo for anticipatory nausea/vomiting purposes.
DURING Tx
2. As pre-medication prior to gemcitabine to control nausea/vomiting ;Ondansetron(or granisetron or dolasetron)+ dexamethasone as IVPB  will be given over 30minx 1dose.(dose determined by body surface area of the patient).
3.Gemcitabine sholud be given just for 30min and no more than that  in  duration in order to minimize the side effect.;I always make sure the nurse understand this.
AFTER Tx
4. Then when you are home,take 25-50mg of benadryl(diphenhydramine)-an antihistamine and 0.5-1mg alprazolam or lorazepam together  with sips of water and go to bed right away, if she needs to vomit,let her do it first,then take the med  and go to bed ;she will wake up in about 3-5 hour and will feel better.Encourage her to drink water or juice or soy milk as much as possible especially in the first 8 hour after gemcitabine.(ie;3-4 glass of 240ml size  /day or more) to flush out the gemcitabline to minimize its side effects.
5. I do not need any other meds to control the N/V until the next week of chemo;but if you mom needs it,ask to doctor to have some promethazine 10mg on hand for nausea /vomiting and take it  by mouth every4-6 hour as needed.
For diarrhea,Imodium or Lomotil  are the choices, Take  one   by mouth every 4-6hrs AS NEEDED  for diarrhea and not to use more than  8 tablets/day.

Again, every patient is different in physiology and the state of health at  time of diagnosis. You MUST consult your doctor first for his recommendation .
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: Mum on chemo (only Gemzar)

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

Re: Mum on chemo (only Gemzar)

Hi Kate,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum as well. But I am glad that you did come here as you will get a load of support and help from us all. I know the relief that you feel from having a virtual talk with us all, I felt that too when I first came here after my dad was diagnosed. He was diagnosed back in 2008 with inoperable CC and coming here helped me so much and I am sure that it will help you as well. The members here have a lot of knoweldge gained from personal experience and you have done the right thing for your mum in coming here and seeking information .

My dad never had chemo of any type, but he did have a lot of nausea issues and for that he took a variety and combinations of medications for this. Some worked better than others and this was adjusted over time. Have you had a read through the chemo board that we have here? There is a wealth of information there that has been shared between the members here and that may be of use to you.

I hope that you will keep coming back here and please keep us updated on how your mum is doing. And if you have any more questions then please ask away and we will do what we can to help in answering them. We know what you are going through.

My 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: Mum on chemo (only Gemzar)

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

Re: Mum on chemo (only Gemzar)

Hi,
As always,this is for information purpose only,consult doctor before any change of treatment plans is a must.
Gemzar or gem/cis do not seem to offer an advantage  for ductal cancer
(eg hilar CC)  patients as for intrahepatic CC patients;  5FU is another alternative of chemo treatment commonly  used. So it is ok to use 5FU instead of Gemzar. It is not stronger than Gemzar;it just works differently. 5FU can be  combined with other chemo agents like cisplatin  and it also comes as an oral  dosage form called capecitabine (xeloda).
Again, systemic chemo is only one of the ways to due with CC;other option for ductal CC included radiation treatments like PDT,EBRT,SBRT and clinical trial.
If you can,  get a 2nd opinion on using radiation as treatment opinion may not be a bad idea because your mom is only 47 years young.
CC is a long and winding road that requires patient , courage and knowledge to navigate .If you look at CC as a CHRONIC disease,then you will feel more positive about the situation and have more energy to help your mother in the long run.
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: Mum on chemo (only Gemzar)

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.

Re: Mum on chemo (only Gemzar)

Kate...The occurrence of fever is not uncommen with this disease.  I do not know whether you Mom has a stent but, if that is so then you would want to make sure to have an infection ruled out.  I would assume that blood tests are taken on a regular basis.
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: Mum on chemo (only Gemzar)

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

Re: Mum on chemo (only Gemzar)

Kate...I don't know whether this is the case with your Mom however, this site has numerous postings re: tumor fever.  You may want to ask the physicians.  Also when ill most people are inclined to reduce their fluid intake when in fact, it needs to be increased.  (That is if your Mom is not vomiting.)
If permitted by the physicians you might want to encourage your Mom to take in small sips throughout the day amounting to more than 2 large bottles per day.  Anything will do as long as she drinks it.  Stay strong, Kate.  This disease can present itself to be a big puzzle to all including the physicians.  It's best to take it one day at a time. 
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: Mum on chemo (only Gemzar)

Hi Kate, I am still wondering if they did a blood culture. That is different than a blood test.

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: Mum on chemo (only Gemzar)

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.

Re: Mum on chemo (only Gemzar)

Kate.... we have seen it numerous times (on this site) for disease progression to be the cause of the fever.  Fingers are crossed for it to subside. 
Please, keep us posted and stay strong.  Your Mom will continue to draw from your strengths.
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: Mum on chemo (only Gemzar)

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