My Fiance has been diagnosed with Pancreatic Cancer

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My Fiance has been diagnosed with Pancreatic Cancer

by Melissa78 on Fri Nov 02, 2012 08:46 PM

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I was recently reunited with my first love after 20 years. I don't know what to do or think or feel. I'm literally broken in so many pieces. He went for a Whipple procedure because there was a lesion of some sort at the head of his pancreas, The Dr's wanted to open him up and remove the head. They looked at it and saw what they had feared. He's 37 years old with cirrhosis of the liver. The tumor is localized but where it's at, there's no chance of it being removed. It's wrapped around an artery. They referred him yesterday to an Oncologist. They want to go at him with chemo and radiation. What should we expect? Is there anyone else out there that is going through the same thing? I know NOTHING about those treatments, who has that fear in their minds when things are going well? I am afraid that I may lose him due to the treatments.. Can anyone please tell me what could happen? The Dr's say that he won't "Recover" from this, the treatments would only give him more time? Could he die from radiation? I've only heard bad things about it. Someone, anyone, please help me understand what could happen? or can someone live on these treatments for long? 

RE: My Fiance has been diagnosed with Pancreatic Cancer

by Whippleschmiple on Fri Nov 02, 2012 09:16 PM

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If it is just in the pancreas, even if wrapped around the artery or I am thinking of what they call I believe portal vein, then chemo and maybe radiation MAY shrink it enough to make him a candidate for surgery.  MD Anderson Texas, Memorial Sloan Kettering in NY, Norris Cotton Cancer Center in Lebanon, NH all usually do neoadjuvant treatment partly because some patients are not resectable/surgery candidates until after treatment but requires best drug, knowledgeable doc.  Make calls fast if you think it is still localized there.  I had the same type of radiation for a related cancer and that was over 2 years ago and it didn't hurt me.  Make calls immediately and good luck. Pancan or similar group may know also of ideas of where may try to shrink away from artery/vein.  Good luck!!  I am in a support group and have heard some do very well by having the treatment prior to surgery, some of whom couldn't get it unless they did it in that order.

RE: My Fiance has been diagnosed with Pancreatic Cancer

by DavefromCT on Fri Nov 02, 2012 10:33 PM

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Mellissa - I am a pancreatic cancer survivor and was recently reunited with my first love after 30 years, so I know what you're feeling.

I was diagnosed a couple of years ago, and it was determined that the tumor was close to a major vein so they gave me Fulfirinox (I was one of the first to receive it at Yale-New Haven/Smilow Cancer Center).  The shrinkage was significant enough and others also experienced the same (but not all).  Chemo or radiation will be regulated/monitored closely.  So best case would be that the tumor shrinks and he could then have the Whipple.  The other possibility would be that the chemo would give him more time, and possibly his quality of life better than without.  Only God knows how long any of  us will live ...pancreatic cancer or not.  Doctors are human... they can only give your their opinion which isn't alway correct.

It will be a challenge for him, but have faith and look for God's support.  He can work miracles.

Dave

RE: My Fiance has been diagnosed with Pancreatic Cancer

by sheann on Sat Nov 03, 2012 01:39 PM

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On Nov 02, 2012 10:33 PM DavefromCT wrote:

Mellissa - I am a pancreatic cancer survivor and was recently reunited with my first love after 30 years, so I know what you're feeling.

I was diagnosed a couple of years ago, and it was determined that the tumor was close to a major vein so they gave me Fulfirinox (I was one of the first to receive it at Yale-New Haven/Smilow Cancer Center).  The shrinkage was significant enough and others also experienced the same (but not all).  Chemo or radiation will be regulated/monitored closely.  So best case would be that the tumor shrinks and he could then have the Whipple.  The other possibility would be that the chemo would give him more time, and possibly his quality of life better than without.  Only God knows how long any of  us will live ...pancreatic cancer or not.  Doctors are human... they can only give your their opinion which isn't alway correct.

It will be a challenge for him, but have faith and look for God's support.  He can work miracles.

Dave

Hi Dave,

Saw your message to Millissa, the advice you gave her was interesting - I would be very interested if you would give me your history on folfirinox, how many sessions or cycles you had? also if you have been given breaks, it has been two years since you were diagnosed, it gives me hope, I will tell you a little about my self - started folfiriox just a year ago had 30% shrinkage but also had severe neuropathy after 16 sessions = 8 cycles I was given a break for 6 weeks, scan after the break showed every thing was stable so my Oncology Doctor decided to leave me off treatment, I had another scan last month again stable, my next scan will be January. I am feeling good except for the neuropathy, my energy level is good, eating well, gained weight. So that is my story Dave.  I would really appreciate hearing from you and I do apologize for jumping in on some one else's discussion. congratulations on two years and I hope God's plan is  another two years, Blessings Sheann 

RE: My Fiance has been diagnosed with Pancreatic Cancer

by DavefromCT on Sat Nov 03, 2012 08:31 PM

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I had six sessions/3 cycles every other week.  I was given a lower dose than they wanted to give me because of toxicity issues.  After four sessions they did a scan and the tumor had shrunk about 40% and it was determined they could do surgery at that point.  They aske me to do  two more sessions just to see if the shrinkage would continue but the outcome was for me that there wasn't much more shrinkage when compared to before.  I had the Whipple in Dec. 2010 and then did 18 sessions of gemcitabine every other week.

RE: My Fiance has been diagnosed with Pancreatic Cancer

by sheann on Sat Nov 03, 2012 09:20 PM

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On Nov 03, 2012 8:31 PM DavefromCT wrote:

I had six sessions/3 cycles every other week.  I was given a lower dose than they wanted to give me because of toxicity issues.  After four sessions they did a scan and the tumor had shrunk about 40% and it was determined they could do surgery at that point.  They aske me to do  two more sessions just to see if the shrinkage would continue but the outcome was for me that there wasn't much more shrinkage when compared to before.  I had the Whipple in Dec. 2010 and then did 18 sessions of gemcitabine every other week.

Thank you so much for your speedy reply, I think for me surgery is out of the question because I have mets to the liver and nodes, when it shows its ugly head again I will go back on to folfirinox and hope it will work for a second time. Good Luck to you. Blessings Sheann

RE: My Fiance has been diagnosed with Pancreatic Cancer

by tlbschwab on Sun Nov 04, 2012 08:58 PM

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Melissa- My mom's pc tumor sounds similar, localized at the head.  Took her to Johns Hopkins for 2nd opinion, they said since there was 75% encasement they could not do the surgery (they can replace the vein though, just not the artery).  Their plan of action is 5 or 6 rounds of folfirinox (done at her hometown cancer center), evalute for tumor shrinkage then try IMRT or Stereotactic therapy, trying to kill the tumor (will do at JHH).  She got 2 full doses of folfirinox (tough chemo for a 70 year old!), had to take a 3 week break due to side effects (nausea only, could not eat well), she recovered from her break and is now taking 3 of the 4 drugs in the folfirinox mix.  From what I have read on this site and the Johns Hopkins discussion board the reducted rates are effective even at somewhat of a reducted rate.  I have heard that radiation is not nearly as bad as the chemo (not reached the radiation point yet...).  Also, for some people the tumors have shrunk away enought to be considered for surgery.  Praying that it works that way for my mom and for your friend too!  Stay positive! 

RE: My Fiance has been diagnosed with Pancreatic Cancer

by Whippleschmiple on Sun Nov 04, 2012 10:35 PM

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The radiation I underwent for related ampullary cancer was at the entry/nodes area to liver and entry/nodes area to pancreas and where tumor had been.  I always felt fine and skin was normal before, during, and after 5 1/2 weeks of radiation (AT A TOP CANCER CENTER with a doc who treated lots of pancreatic cancer and related cancer patients so he knew how to radiate the area without damage to surrounding areas).  The last two weeks and for 2 1/2 weeks after I developed fatigue, but fully recovered.  Chemo nausea "may" benefit from seabands on wrists, drugs for nausea, lavendar, ...  I never needed drugs for it, and only threw up one time during entire period of chemo when dose was a bit much.  If needed schedule can be modified and, or dose.  

RE: My Fiance has been diagnosed with Pancreatic Cancer

by Melissa78 on Sun Nov 04, 2012 11:13 PM

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I'm not even sure if they can even remove it from what one of the surgeons have told him the day of his release from the hospital. They said the treatments would help him live longer but will always be there. He will die from this illness, from what the surgeon had said. But we're being hopeful and pray that the treatments will shrink the tumour and hopefully with enough faith, it will give him alot more time then just "a bit" .. We're going to research Pancreatic Cancer tomorrow morning and find out what exactly we're dealing with and what we can do to help the treatments. I'm scared that radiation will do more harm then good..It's scary.. but reading everyone else's post makes me hopeful that things will be OK. 

RE: My Fiance has been diagnosed with Pancreatic Cancer

by andiwants2know on Mon Nov 05, 2012 12:05 AM

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Dear Melissa,

I feel your pain, but please know that there are very high hopes.  Please check out cancertutor.com (the page for stage iv cancers is exceptionally good) for the very best alternative cancer treatments.  It's good to look at national stats for conventional treatment and then check out their stats for cancer treatments.  They are significantly much higher.  Best of luck and much light to you.

Blessings,

Andi

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