Topic: I need advice on decision to do chemo. Pls. Help

Hi, I am 62 year old diagnosed with Stage IV Bile Duct Cancer, Inoperable on 5/29/13.  I've been so thankful for the 62 years of good health and this was a real shocker.  I REALLY NEED YOUR ADVICE:  I have been stented four times since June 2013 (the first was not positioned correctly so a repeat was done a week later).  I have a 7 cm tumor on the liver with metastasis to the lymph nodes.  My symptoms are few; I feel fatigue but partially due to sadness, some days I get full quickly and it feels like there is a baseball in abdomen. Other days (when I go out) I feel pretty good and can walk around for hours.  I have refused the chemo Gem/Cis, but my oncologist told me not to wait much longer.  I am scheduled for port placement on 11/5.  I AM SO AFRAID! Afraid that the chemo will do more harm than good.  It seems like people start the Gem/Cis and it works for awhile, some with horrible side effects and others tolerate it rather well.   Who do you think I should talk to regarding my decision to chemo or not to chemo.  I am calling my nurse coordinator today to ask if she can arrange a meeting with people in my similar condition who have taken the Gem/Cis.  My inner voice keeps telling me NOT to do chemo and let nature take over.  Like I said, I am so afraid of triggering a chain reaction of side effects that will make me feel worse.  How did you decide to chemo or not to chemo.  I REALLY APPRECIATE your input.  LadyLinden

Re: I need advice on decision to do chemo. Pls. Help

LadyLinden....The subject of chemo vs. non-chemo is one of the most important issues with this disease.  Thank you for reaching out to our community.  I hope for this thread to be innundated with endless comments from many.
Hugs to you,
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: I need advice on decision to do chemo. Pls. Help

Dear Lady Linden, to chemo or not to chemo is a very personal decision and one of the toughest on this Board. I can only go by what happened with Teddy and perhaps you can pick up some advise there and if not I know you will be getting more stories.
Teddy had an aborted Whipple then 3 weeks later the real deal Whipple. He did have all clean margins and no Mets and at that time (8 years ago) they did not promote the chemo for that beside which 3 ONCS and 2 Radmen said no that it would not work anyway where his had been located.
It returned to the same area 3 years later and he was able to have Cyber Knife which bought him another 2 years. At that time the ONC said they could do palliative chemo and Teddy asked, "If I do Palliative Chemo how much time will it buy me and the ONC said maybe a month. Otherwise we had about 6 months left. Teddy sat and thought about it for 2 days and said no, I want more quality time than an extra month. The ONC was right on. We never regretted his decision as it gave us 6 month to plan and have many goodbyes. Teddy's theme song was My Way and he truly did it his way. I would tell the ONC that you know he can't give a time frame BUT if you did have chemo can he guestimate about how long it will buy you versus not having it. I would also ask him, if you were his mother what would he tell her to do. I wish you a ton of luck this is such a hard decision. You are the one who holds your own destiny. You never know how strong you are until "strong" is the only choice you have!

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: I need advice on decision to do chemo. Pls. Help

Hi. My name is Shelley (aka Shellina). My husband Al was diagnosed a couple of days before Christmas 2012. He made the decision for quality over quantity. At the time they thought he would live 3 to 6 months. Over 10 months later, he is still with me. His biggest problem has been high ammonia levels and confusion. This has now been controlled by Lactulose. However, he also had done a lot of damage to his liver years ago. So, his liver was already damaged before his diagnosis. He also has a stent and an external drain. He still gets around quite well. But, he does get tired easily. I cannot give you advise since it is such a personal decision. I just wanted you to know of someone who chose no chemo and has never regretted that decision. Follow your heart. There are no wrong decisions.

Re: I need advice on decision to do chemo. Pls. Help

LadyLinden -
I am with everyone else as this is such a personal decision for you and you are the only one that can make that decision. After my husband had his resection we were given the choice of chemo vs no-chemo since they think they got it all with the surgery. We talked about it a lot and my husband's decision was that the would do it as long as he could handle the ot. He said that if the side effects got too bad then he would quit. We are now halfway through it and other than the occasional night sweats and the cold sensitivity, he is doing pretty good. NO nausea, no weight loss, moderate fatigue but he is still working full time. He is on Gemzar/Oxaliplantin which is not exactly the same as what you would be taking.
We have had a few bad days where he is crabby and telling me he doesn't want to do it anymore but then the next dose rolls around and he is fine with it. I guess it's just another roller coaster.
What I will say is that EVERYONE reacts differently to chemo and to every dose of chemo. What my husband had or anyone else had may or may not be what you have.
What every decision you make will be the right one for you.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: I need advice on decision to do chemo. Pls. Help

I've shared before my husbands story.  He is stage 4 (with mets to lungs
and lymph nodes and one main liver tumor).  He was diagnosed in March
of this year.

We want QUALITY of life as well as much QUANTITY we can get while still
having QUALITY....does that make sense?

He is 44 years young with 4 kids.  We figured we had nothing to loose-
either the chemo would work or it wouldn't.

We feel so lucky that chemo DID work in my husbands case.  We are
8 months into Gem/Cis and have had NO NO NO bad side effects so
far....other than very tired the day or two after chemo.  NO nausea,
no hair loss, nothing "bad" at all.  AT ALL.  I know this is not the case
with everyone, but this is our case.

So for US?  It was worth it...he has had 8 more GOOD GOOD GOOD
months with me and 4 kids.  He has enjoyed life, worked, vacationed, etc.

I would not trade that time for ANYTHING.

If it had not worked (chemo) at least we would have tried.

I think if you choose to try it and have bad results you can ALSO
choose to quit chemo, there is no right or wrong answer.

You could have fabulous results and buy yourself some good years
of life.  So for me, the answer would be at least give it a shot.

(I KNOW IT'S NOT MY ANSWER TO GIVE THOUGH!!) smile

You can also choose to not do chemo--it's a very personal decision.

For me and my house?  We are glad we tried, we are glad we have
bought time, we are glad he has had WAY more great days than
bad days and we are glad he's still here.

This can (and with this cancer WILL) change at any point in time--
but there is no price I could put on having Kyle here with us
here and now.

Best wishes with your decision....You will make the right one for YOU.

Dorien

7 (edited by PCL1029 Fri, 01 Nov 2013 15:22:24)

Re: I need advice on decision to do chemo. Pls. Help

Hi,
You are only 62. Very young by any standard.
Your heart has already set in for no chemotherapy but is afraid is it a smart choice or not?
You are worrying its side effects more than the benefit of the chemotherapy even if the chemotherapy will extend your life. You do want to live but not sure about the quality of life with chemotherapy.
I think to let nature takes its course may not be the way to go; no body knows what will happen in one's journey of life being having this diseases  .
For some, their young life cut short unexpectedly by this disease; For others ,some have to surrender their promising careers and future to just having enough  energy to fight for their lives. For some,  the loving relationships with spouse hijacked and their dreams of growing old together come to an abrupt end. For others, their dreams to play with the grand kids will be a miracle. And of course not to mention how to deal with financial hardship and countless trips far away to get the medical help they needed.
What I want to say is, you are young and your chance to a better life will be better than others if you seek treatment as soon as possible. Surgery is not the only option, there  are other treatments that will provide quality life extension without great suffering.
If you are afraid of chemotherapy, other treatment like chemoembolization will be the least uncomfortable experience procedure. Try to contect an interventional radiologist for such procedure. RFA or nanoknife(IRE) may be consider too but the size of a7cm tumor is of concern. IRE or cryoablation can be used on lymph nodes if not contraindicated .
If you do not take action, you will never know what works for you.

If I were you., I will try 6 cycle of Gem/CIS  and take a Cat. Scan to see whether it works or not, ask the doctor you Are very concern about the side effects,therefore they may start you on a less dose and more meds for control of your nausea/vomiting to make it easier on you, you can always stop treatment anytime. ( the reason is simple, you know you have tried your best to fight for this disease and there will be no regret in your heart when the time is come.)
Tha above is not my advice but my way of dealing with this disease. I like to explore options and I hope through my journey, patients like me will find some comfort and encouragement  during their treatment.
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: I need advice on decision to do chemo. Pls. Help

LadyLinden, your choice is a very personal one. I have chosen to use all medical knowledge to prolong my life. I am 50, stage IV inoperable, and it's been 32 months. I was on Gem/Ox, and, while it had side effects, the effect on the tumor was absolutely amazing! I also was on Xeloda... Not so good vs the tumor. Radiation? Worked great!
There are many options, and while your decision is yours to make, I feel trying chemo and quitting if it gets too much is the best choice. Then you could have the option of different treatments.
If you are feeling good for the most part, you could ask about trials in your center. They may be a good option.

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: I need advice on decision to do chemo. Pls. Help

Hi as all have mentioned it is a personal decision that we all have to face.  I am very young 34 with 2 young kids and so I felt it was appropriate for me to try everything that has been offered.  I am almost on my 6th cycle and fortunately the side effects haven't too bad.  Mostly fatigue and some nausea (which can be tolerated with certain meds and I have been on and off steroids to help with that as well).  So far I have been fortunate as the chemo regimen has been working and shrinking my tumor.  My tumor is quite large almost 17cm when they finally diagnosed me, so at this point I am willing to try anything to shrink this sucker and so far so good.  I wish you luck on your journey and whatever you decide to do.  I don't think there is a right or wrong in these situations and must do what we feel is right.  Take care.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: I need advice on decision to do chemo. Pls. Help

Dear LadyLinden,

As everyone has said this is a very personal decision.  When I was first diagnosed I was petrified of chemo.  I imagined sitting there getting chemo and puking the whole time.  That was not the case at all.  Zofran is a great anti-nausea med and worked very well for me.  I am on my third different chemo regimen.  I had two different types of radiation in between the chemos.  None of the chemo was as bad as I thought it would be.  Yes, there were some side effects such as fatigue, loss of appetite, numbness and tingling of feet and hands while on Oxaliplatin (went away once I stopped this treatment) and diarrhea.  All were managed well with meds.

I would chose trying the chemo and also asking about high dose radiation such as Stereostatic Body Radiation Therapy (SBRT).  As everyone has said, and I agree, you can make the decision to stop the chemo at any time if you get side effects that are too difficult to manage.

This is definitely YOUR DECISION to make and I wish you the best of luck.

Please let us know what you decide.

Peace, Love & Hugs,
Mary

Re: I need advice on decision to do chemo. Pls. Help

Dear Marion, Lainy, , Kris V, Shelley, Dorien (Bompie), Kris00J,, Porter, Mary, PLC,

Just a note to thank you all for your thoughtful advice and wisdom based on your own personal experiences.  My husband died on June 16, 2011.  He and I were in business together.  I am use to making hard decisions and trusting my judgment and instincts. I realize now that he played a very important part in my decision making.  We worked well together.  Thank you very much for "stepping in" for him.  He would appreciate you being there for me.  Sincerely, Patricia from Michigan a/k/a LadyLinden

Re: I need advice on decision to do chemo. Pls. Help

Dear LadyLinden,

There was no choice for my daughter, Lauren. She wanted chemo and would do anything it took to live. The port was not a big deal at all. Sure, it was sore for a while, but once it healed it was great for getting chemo. Her veins got almost undetectable, so the port was a lifesaver. Lauren started out on Gem/Cis and 5-FU. She wouldn't feel very good for a few days, but then felt better than she did before chemo. It actually made her feel better and really shrunk her tumors. If a certain chemo makes you feel to bad, there are others to try. There are many meds to help with the side effects. I know you are scared, and have every right to be. You might want to talk about it with a social worker at the hospital or cancer center you go to. They really can help you put things into perspective. As you may or may not know, Lauren passed away in June after surgery complications. While I am devastated by the loss of our dear child, I am comforted in knowing that we did everything possible to help Lauren live a happy life which included any kind of treatment offered to us. She always had the final decision on everything, but always thought that if there was a treatment, she was going to try it!! If I were you, I would try anything the doctor suggested. But, since I am not you, whatever you decide will be what is right for you. I'm sorry you have a difficult decision. My prayers are with you.

Love and hugs,
-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: I need advice on decision to do chemo. Pls. Help

Hi Pam I have never reached out to you much but read your stories all the time.  I remember reading that your daughter was quite young like me.  I sure do admire her strength and determination and I am sorry for your loss.  I feel the same way in regards to if there is anything that can shed a light of hope or benefits to helping me beat this cancer I am willing to try.  I need to give it my all so I can look back and tell myself I tried everything.  I have really appreciated your posts over the last few months.  Thanks.

Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: I need advice on decision to do chemo. Pls. Help

Dear Porter,

Thanks so much for your sweet message. I'm sorry I haven't been on the site much since Lauren's passing, but some days it takes everything I've got to get out of bed!  I do try to read everyone's posts and comment here and there. You seem to have the same spunk Lauren had. That's a good thing! This cancer thing is no picnic. I hope you have a great support system, because I think that really helps. I hope we can chat more in the future. Hang in there. I'm in your corner.

Hugs,
-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: I need advice on decision to do chemo. Pls. Help

Thanks Pam, I am trying. I am responding well to chemo having shrinkage and my ca 19 9 is all wnl now.  So I feel hopeful that things are going in the right direction and I have to believe that bc I will do everything in my power to fight to be here for my children.  I don't come on this site as much as I did a couple months ago but read up when I can. Take care of you. 
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: I need advice on decision to do chemo. Pls. Help

Dear LadyLinden,
I am 67 & was diagnosed a year ago with the exact same Stage IV, inoperable intrahepatic bile duct cancer.  I 1st went to see a surgeon who determined it was inoperable then he sent me to see the radiology oncologist at UCI.  I had 2 SIRT treatments of radioembolization.  They did not shrink my tumor.  I then went on 2 rounds of Gem/Cis with no bad side effects except my blood count went way down & my tumor marker #s increased.  Then went on Oxaliplatin/Xeloda with worse side effects.  I had horrible sores on my legs.  Then had an MRI showing my tumor had grown.  So none of the treatments have worked for me.  I am now on a chemo break.  My oncologist said even if I had more chemo it would only give me 3 - 4 months than with no treatment.  I feel great.  No symptoms at all from the cancer.  Just fatigue.  My oncologist said why not take a few months off chemo & enjoy feeling good!  I will see her every month to check blood & then another MRI to see how the tumor looks.  It is a little scary not having any treatment.  I am trying to see another surgeon for 2nd opinion. 
This disease is crazy.  Seems like everyone reacts differently to treatments.  I believe with all my heart that God is the Great Physician and will lead me to the right decisions regarding further treatment options.  I am not sorry I tried chemo & if it had worked I would probably still be on it. 
God bless you!

Re: I need advice on decision to do chemo. Pls. Help

My mom is taking only Gemzar no Cisplatinn....we went to Sloan and the oncologist knew my hesitation regarding chemo. I read all the time that it is not very effective. I was happy to see that he put her only on the Gemzar. The standard of care is usually the gem/sim combo. I felt that he knew how important quality of life is and did not throw an intollerable treatment her way. She walks or runs every day and feels great. Very few side effects...just another idea to think about.

Re: I need advice on decision to do chemo. Pls. Help

Hello LadyLinden,

To do or not to do chemo, as others have said, is a very personal decision.  I too was very hesitant and scared of doing chemo.  I had had radiation therapy for breast cancer previously and was grateful that I did not need chemo at that time.  When i was diagnosed with this cancer, the thought of doing chemo scared me to death.  I had all these images of losing my hair, walking around looking like sick, nausea, etc.

I was lucky and able to have surgery (Whipple) and the choice to do chemo was mine.  They could not tell me that it mattered if I did it at all.  My husband and I talked about it.  I decided to do it so that I would have no regrets with the understanding that I could stop at any time.

I only had Gemzar, which I am told is the most "tolerable" and the only side effects I had were fatigue toward the last 2 cycles, nausea which was controlled by medication (Ativan), and some intestinal 'disruption'. 

Obviously, my situation was different from yours, but the decision process is somewhat the same and still very personal.  I have no regrets. But again the decision is so very personal. 

What I like from what other people said is that if you start it, you can always stop it.

Best of luck to you and please keep us posted on your progress.  whatever you decide will be right for you.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: I need advice on decision to do chemo. Pls. Help

Hello Lady Linden,
I am a little late in posting but I was diagnosed in 2010 and after a resection chemo was recommended. I was so afraid like, Mary, that I would be sick and my quality of life would be poor. I had a port placed which was great and proceeded with chemo. I remember the first treatment sitting in the chair waiting for something awful to happen and nothing! We went out to lunch after. I did have fatigue and minor nausea that was treated with zofran. I since have tried three other chemo regiments but my tumors were not very responsive to chemo. I have had great success with steriotactic radiation and the only side effect was some minor fatigue. I like Percy's advise, try 6 rounds and get a CAT scan to see if it is working and also ask about radiation. If you would like to talk to me please feel free to call me at 330-903-6868.
Hugs
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: I need advice on decision to do chemo. Pls. Help

Hi, I'm on Cis/Gem every other week.  I gave it a try but after two chemo treatments, I've cancelled my future appointments.  The first time I was somewhat hopeful but after spending 9 days in bed with extreme fatigue, extreme soreness in the abdomen that felt like I fought and lost! all month, I went for my second chemo treatment.  I've been sick every day.  I am taking meds for pains, dizziness and do not have the strength to eat.  I have been much to tired to even go to the doctor.  I feel that I am getting better, but not to the point where chemo will be a breeze.  There's other issues, too.  I plan on spending my remaining time at home and find solace and comfort here.  I reached out to the community and decided why not try it.  Well I have, but I'm done.  I know the way I feel is not as bad as others have felt.  The courage of the members is absolutely amazing.  I appreciate your quick response to my inquiry "to chemo or not to chemo?" I hope you are able to find some happiness in your holiday season.

Re: I need advice on decision to do chemo. Pls. Help

Hi,
To chemo or not is an extremely personal choice. I am sorry you had such bad reactions to the chemo. At least now you can say you gave it a go.
I don't know much about how your journey will go now, but know my thoughts and prayers are with 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: I need advice on decision to do chemo. Pls. Help

Dear Kris, Thank you for your note.  Comfort is the only option I see.  Please try to take care, Kris.

Re: I need advice on decision to do chemo. Pls. Help

I am sorry to hear you've had such a struggle with chemo. I hope this doesn't sound condescending, but have you discussed this with your oncologist?

In our experience, and I would guess others have had the same experience, sometimes if you don't ask, they won't tell.....

I don't know if it is an insurance thing, a medical protection thing, or something outside of my thought process, but I do know there have been several situations where we were ready to stop chemo - told the oncologist - and the response was "Oh, we can do this to help". For example, after the first 6 cycles of Gem/Cis (as you know very toxic), my wife was in such pain (nausea, listless, no appetite, etc.) that we cried together while deciding to stop chemo.
We meet with our oncologist, explained the situation, ans was informed " Well we can put you on Emend for nausea and steroids for physical strength". Duh????? Where was this before ?

I am suggesting do NOT accept that you struggle with chemo until you've asked (then challenged) your onc. to explain to you why they cannot help you deal with chemo further.

Having said that, my wife benefited from the chemo regimen - to which we are very grateful. So you also need to make sure it is effective before continuing with this challenging process.

My best to you.
Carl

Re: I need advice on decision to do chemo. Pls. Help

Lady Linden,
I am sorry the chemo did not work out. Praying for your peace and comfort.
Hugs
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: I need advice on decision to do chemo. Pls. Help

Dear LadyLinden,

I am so sorry that the chemo made you feel so bad. I think it is great you made up your mind to give it a try. My prayers are with you to find peace.

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.