November 2, 2013 at 1:21 am #76931pamelaParticipant
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,
-PamNovember 2, 2013 at 1:06 am #76930ladylindenParticipant
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 LadyLindenNovember 1, 2013 at 10:01 pm #76929mcwgoatParticipant
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,
MaryNovember 1, 2013 at 9:31 pm #76928pfox2100Member
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.
PorterNovember 1, 2013 at 9:16 pm #76927kris00jParticipant
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.November 1, 2013 at 9:01 pm #76926pcl1029Member
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.November 1, 2013 at 8:53 pm #76925thebompie4Member
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!!)
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.
DorienNovember 1, 2013 at 7:23 pm #76924kvollandParticipant
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.
KrisVNovember 1, 2013 at 7:13 pm #76923shellinaMember
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.November 1, 2013 at 6:22 pm #76922lainyParticipant
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!November 1, 2013 at 5:17 pm #76921marionsModerator
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,
MarionNovember 1, 2013 at 5:09 pm #9085ladylindenParticipant
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
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