Questions about treatment

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Questions about treatment

by Barnstable on Tue Jan 08, 2019 06:19 PM

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Hello all,

I am a 70 year old female in good health who was diagosed out of the blue with Stage 3 pancreatic cancer.  Orginally scheduled for chemo and radiation first, that was reversed due to a  complication.  I underwent the Whipple on Dec. 6 and now, almost 5 weeks post op, am recovering fairly easily (after some very tough initial weeks).  My oncologist has recommended Forflinox treatment of 6 months followed by 6 weeks of radiation (I am at MGH). I'm balking.  He was very clear about the unpleasant side effects and the challnege of this treatment while also noting that he had not, nor had his team, given this treatment POST Whipple, so could not recommend anyone with whom I could speak.  We've researched and analyzed the cost/benefit endlessly and I am considering no treatment and letting the disease run its course  (cancer was found in 10 of 40 lymph nodes but with clear wide margins).  Has anyone had experience with this decision?  I am grateful for whatever you can add to our decisions.  Thanks.

RE: Questions about treatment

by mrj2688 on Tue Jan 08, 2019 07:53 PM

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There have been some excellent results with Folfirinox treatments given after surgery.  However, it can be a very difficult regimen.  My mother is eligible for surgery right now, but she's receiving Folfirinox first (with the plan to do more treatments after surgery).  It's obviously a personal decision.  But, if your Whipple recovery is going well, perhaps you should give the Folfirinox treatments a shot.  You can always discontinue treatments later if you don't think the benefits will outweigh the costs.  And, maybe you'll end up tolerating the treatments really well.  Such a tough decision.  I wish you well.

RE: Questions about treatment

by bushy on Wed Jan 09, 2019 12:46 AM

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That’s a hard personal decision,but mrj2688 suggestion of trying Folfironox and discontinue the treatment if it isn’t of benefit is a good one,how our bodies respond to chemo can be different for each individual with side effects and results.Best wishes with your decision.

RE: Questions about treatment

by Barnstable on Wed Jan 09, 2019 01:28 AM

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Thank you, and yes, I completey agree. The question is really about whether one has experienced the impacts of Folfirnixox AFTER the Whipple as opposed to before it, which is the usual routine.  The oncologist told us that he hadn't done it before, so couldn't give us any real insights.  Thx again.

RE: Questions about treatment

by bushy on Wed Jan 09, 2019 04:15 AM

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Sorry for mix up ,a dear friend of mine had folfirinox combined with abraxane in the later stages of pc when she became stage 4 she responded ok with chemo and side effects, she lived longer with treatment however she passed away in the end.That Chemo treatment was started 18 months after Whipple surgery she was in her mid sixties. At that time the combination was the standard treatment for stage 4 in Australia 2013 my oncologist recently told me pc chemo has improved since those days.

RE: Questions about treatment

by Treasure on Wed Jan 09, 2019 07:22 PM

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Chemo after a Whipple is usually recommended as a precautionary measure. Sometimes there are floaters that the human eye and even scans cannot pick up right away. With chemo it goes all through your body, and would destroy any floaters in hiding! Chemo given before a Whipple is usually because the tumour is usually located to. Close to an organ or portal vein that would be to hard to separate. 

Folfirnox is an agressive chemo and usually two treatments. Are given each month for a period of six months. They do have great antinausea drugs that make treatment alot easier then years ago. Hair loss does occur, but depending where you are, cancer care does have a wonderful program .....look good feel good it's called where you can go get a wig and a make over and a supply of lots of skin care and makeup products. As for chemo, you can come off it when ever you want to but as for myself, I did the full six months and I also asked God to take this journey with me. For me, I am starting my 8th year and have been in complete response since chemo. I know I'm only here today by the grace of God! I know anyone taking this journey certainly needs some extra powerful help , chemo is just a treatment, but with God added to this, you can be sure the best is yet to come. Take care

Blessings 

RE: Questions about treatment

by northern232001 on Thu Jan 10, 2019 04:56 PM

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Amen and praise God!

RE: Questions about treatment

by longliveliver on Thu Jan 17, 2019 09:41 PM

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Before you have any further treatment it is vital to find out exactly how much cancer, if any, you have left in your body.  I was having communication problems with the oncologist I saw following a successful Whipple in August of 2016.  When I changed to a different oncologist, he said he didn't want to continue putting poison in my body if I didn't have cancer and stopped all chemo until completion of four or five different tests, including nuclear scans and advanced blood tests.  No sign of cancer anywhere, so PET scan was repeated a month later and another set of tests two months after that. 

Now, two and a half years after surgery and continued monitoriing by my oncologist, I still show no sign of cancer.  My blood tests are great, my weight is fine, I don't have diabetes, high blood pressure or, so far, any of the possible after-effects of a Whipple. 

If you're not sure about treatment get another opinion.  It's too important to embark on a treatment you may not need, and if you do need it, that's important to know too.

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