To Chemo or not to chemo…

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To Chemo or not to chemo…

by jamesz on Tue Feb 12, 2019 09:33 PM

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Hey all, looking for some advice or experience if anyone is kind enough to lend me some.

My mother, 60 has just been sent home with now inoperable Pan Can with mets to the Liver. 

To date she had the whipples op last Xmas then Chemo (Capecitabine) for about 4 months, which she stopped as she said it became too much for her (I can’t help but feel that stopping was a mistake, but then I wasn’t going through the awful stuff). This was around June last year and then her scans were showing clear as of last August, but of course predictably it came back now with the above mets to liver showing on her scan just some 10 days ago.

Her oncologist is now saying she can choose to live out her life to it's natural end, or try the either of the following chemos for a 1 in 5 chance of 2 extra months(!) 

XELOX (CAPOX) or 

FOLFOX though a picc line (I am guessing becuase of the state she got in with the previous chemo IRIN is being left out). 

Time is running out and she won’t make the decision wether to go for chemo and is asking me, my Dad and sister what to do. 

Despite not being in much pain at the moment, she is generally a nervous wreck except for the occasional moments when she sees her 10 month old granddaughter. If it wasn’t for this I would perhaps advise her to go in for the chemo as she’s not hugely enjoying her life as it is.  However, if she has chemo she definitely won’t want to be around her granddaughter through fear of catching a bug or an illness from the little germ machine.  

It's her decision to make, but the onus is on us to help her make a call. An impossible choice. I don’t want to be the one to subject her to the potential misery of chemo potentially depriving her of precious time with her granddaughter for it to make absolutely no difference… I’ll blame myself. But then what if, just what if it buys her some good time despite the oncologists grim statistics?

I just don’t know what to tell her and she’s looking to me for guidance. Seems like an obvious thing to say, but despite being in a constant state of anxiety, she really does want to stay alive. 

Any words of wisdom or any sort will be much appreciated. 

Thank you

James 

(we’re situated in the UK and this all through the NHS, if that makes any difference)

RE: To Chemo or not to chemo…

by bushy on Wed Feb 13, 2019 07:37 AM

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jamesz Is it worth possibly 2 extra months of life,those two chemos can have very harsh side effects,it is your Mothers decision,quality versus quantity,I have thought about those circumstances myself if cancer had returned ,I would try chemo but if I was too ill from it I would stop the chemo ,thank goodness I don’t have to make that choice,best wishes with your Mums decision .

RE: To Chemo or not to chemo…

by Chrisssy on Wed Feb 13, 2019 01:52 PM

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My Mom was diagnosed in 2014 at the age of 69. She did not have the whipple. She started chemo at that time with mets to the liver and was with us until Sunday . She fought a great fight despite the predictions. The chemo was tough sometimes but she weathered it. Your Mom is so young . I personally am so grateful for the extra time. Best of luck to your Mom.I am rooting for you guys . The journey will be tough. All the best.

RE: To Chemo or not to chemo…

by ToddlerFather on Wed Feb 13, 2019 06:10 PM

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What are the side effects of both options of chemo ? Perhaps that will make it easier to choose between none, option 1 and option 2. 

RE: To Chemo or not to chemo…

by JaniceMN on Wed Feb 13, 2019 10:45 PM

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Very sorry to hear about your mom. I just completed a year of chemo along with 7 surgeries and I am currently cancer free. I too am 60 years old. Was diagnosed on my 59th birthday with pancreatic cancer and was lucky they found it while it was operable. 

My chemo treatment was very aggressive. My cocktail consisted of Oxaliplatin, Itinotecan and Fluorouracil prior to my major surgery. I avoided a whipple but they took most of pancreas, my spleen and gallbladder. After that surgery I went on more chemo - Xeloda (pill form) and Gemcitabine.

Going through all of this I told my husband I completly understand why people just give up. It is tough! You feel like you are already dead with no energy, constantly feel like crap and just when you start to feel better - they hit you again with another round.

I totally understand where your mom is coming from. I stayed away from kids and pretty much everyone for that entire year. Was it worth it - yes. Oncologists are giving you their best guess as far as time is concerned. I also have an aunt who has lived with mets breast cancer - she has taken chemo for 15 years and is still going. Her original diagnosis gave her a year.  My uncle surpassed his 6 months a year ago now.

If her scans cleared once, with chemo and prayers it may clear again. I personally would go for it again if my cancer returns. We are too young to give up. Tell her to have everyone, including granddaughter, wash hands and wear a mask when they come over. 

It's a tough decision and I feel for you. Adding you all to my prayers. If you have any specific questions I'm happy to answer. Hugs

RE: To Chemo or not to chemo…

by Chrisssy on Wed Feb 13, 2019 11:39 PM

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My Mom was on folfirnox. She suffered from neuropathy, diarhea, fatigue, nausea. She felt awful but after a few days it subsided. 

RE: To Chemo or not to chemo…

by jamesz on Thu Feb 14, 2019 02:02 AM

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Thank you all so much for taking the time to respond, these replies certainly will help us to lay things out to my Mum with a bigger picture now than we were able to yesterday. 

Very much appreciate the kindness and sorry you have all been affected by this. 

Janice, your story is inspirational! Wow.

ToddlerF - Looking at the paperwork, both seem to have almost the same side effects with some that are slightly more common in one than the other. Another question to ask the oncologist, thanks. 

RE: To Chemo or not to chemo…

by Mel256 on Thu Feb 14, 2019 04:17 PM

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I have metastatic rectal cancer.  I have been on both drugs.  I didn't think either were to bad.  I have been on both twice.  I have been on chemo for 3 years.  I have never stayed away from people except hospitals.  I an 49.  None of us can tell her what to do but I would suggest asking about Neulesta for her immunity if she goes with the chemo and research the meds and her cancer.  I will be on chemo the rest of my life which I am okay with.  Not everyone is and that is okay.  I do know sometimes people are cured by chemo when the odds were way against them.  It's a hard discussion but it's hers when all is said and done.  There is no wrong decision.  I wish you all peace with her decision.

RE: To Chemo or not to chemo…

by cksherman on Thu Feb 14, 2019 04:57 PM

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Hi Janice, I am slated to have US Gemzar and US Xeloda end of March early April. I have been diagnosed with ampullary cancer and in two lymph nodes. I had the Whipple surgery in December and have been dealing with two infections in the drain tubes. My question is how did you feel about your last round of chemo which included the two medications listed above. This is all new to me and after having the Whipple (I still have no energy) I am dreading this treatment. Could you tell me your side effects and what I should expect. Thank you. Chris

RE: To Chemo or not to chemo…

by WYLife2live on Thu Feb 14, 2019 06:53 PM

Quote | Reply

On Feb 12, 2019 9:33 PM jamesz wrote:

Hey all, looking for some advice or experience if anyone is kind enough to lend me some.

My mother, 60 has just been sent home with now inoperable Pan Can with mets to the Liver. 

To date she had the whipples op last Xmas then Chemo (Capecitabine) for about 4 months, which she stopped as she said it became too much for her (I can’t help but feel that stopping was a mistake, but then I wasn’t going through the awful stuff). This was around June last year and then her scans were showing clear as of last August, but of course predictably it came back now with the above mets to liver showing on her scan just some 10 days ago.

Her oncologist is now saying she can choose to live out her life to it's natural end, or try the either of the following chemos for a 1 in 5 chance of 2 extra months(!) 

XELOX (CAPOX) or 

FOLFOX though a picc line (I am guessing becuase of the state she got in with the previous chemo IRIN is being left out). 

Time is running out and she won’t make the decision wether to go for chemo and is asking me, my Dad and sister what to do. 

Despite not being in much pain at the moment, she is generally a nervous wreck except for the occasional moments when she sees her 10 month old granddaughter. If it wasn’t for this I would perhaps advise her to go in for the chemo as she’s not hugely enjoying her life as it is.  However, if she has chemo she definitely won’t want to be around her granddaughter through fear of catching a bug or an illness from the little germ machine.  

It's her decision to make, but the onus is on us to help her make a call. An impossible choice. I don’t want to be the one to subject her to the potential misery of chemo potentially depriving her of precious time with her granddaughter for it to make absolutely no difference… I’ll blame myself. But then what if, just what if it buys her some good time despite the oncologists grim statistics?

I just don’t know what to tell her and she’s looking to me for guidance. Seems like an obvious thing to say, but despite being in a constant state of anxiety, she really does want to stay alive. 

Any words of wisdom or any sort will be much appreciated. 

Thank you

James 

(we’re situated in the UK and this all through the NHS, if that makes any difference)

Jamesz,

I was diagnosed with PC 17 months ago.  I went thru 30 weeks of chemo and chemo/radiation.  My scans were then clear and my tumor markers very low.  My tumor also was inoperable so my oncologist recommended a maintenance chemo dosage every two weeks.....indefinetly.  I was not too jazzed about that because as you know the chemo will just keep pressing you down and down.  I opted instead to go to Mexico to an alternative cancer clinit in November (no side effects).  My last scans in December were still clear and currently I feel great.  I get another CT scan and blood work in three weeks.  I am praying for good results but am very optomistic based on how I feel and I'm keeping weight on even with going to the gym 6 times a week.  Maybe looking into an alternative treatment could be an option for you.

Blessings

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