pancreatic cancer is there anyone

aggie0053
aggie0053 Member Posts: 110
edited July 2015 in Rare and Other Cancers #1

my wife was diagnosed last may shes going to university of mich clinical trial of gemzar with wee one inhibitor on monday following mon. the same then off a week said stage 2b localized inoperatable in head of pancreaous hasn't spread, the problem is its wrapped around two major arteries they hope the chemo plus next week 28 days of radiation will shrink it enough to pull away from arteries then operate. don't know if this will work?  another we have hap/hmo insurance in mich, johns hopkins called for an appointment but insurance isn't excepted don't know what to do

Comments

  • Oneshot
    Oneshot Member Posts: 153 Member
    Hope this helps some

    Aggie0053,

                   I was told in "08" I had stage 3 . This was after being scanned, x-rayed, sonogrammmed, scoped and whatever other means the cancer doctors had at their disposal to see the cancer.  Needless to say the outlook was not very good. The pancrease, stomach, gall bladder, small intestine and an artery were involved. Doctors told me the artery was encased. I was told the odds were not in my favor ,but, if I wanted to fight it. I might get 6 mos. more.  Chemo (Gemzar) and Rads. Then the Whipple surgery.  I was told they were not really sure if they could remove some or any of the cancer , much less around the artery till I was in surgery and they could see it better.  After 17 hrs. (so I have been told)  , when I awakened.  The surgeon told me "When we opened you up the cancer that was around the artery was as if you held your forefinger and thumb to make a circle and took your other hand's forefinger and put it through that circle ...the cancer was not touching the artery!  We could not see that with any of the tests we took. It had looked totally encased untill we got a better view during surgery."  Now if the rads had done this or not I honesly cannot say.    After recovery from the surgery I started more rounds of Gemzar .   I know there is no promises of a great outcomes when it comes to pancreatic cancer. But, I am trying to tell you and your wife. With all the modern ways of veiwing pancreatic cancer. It is still a hard one to get a good detailed picture of.

    Seems that regiment they have your wife doing is pretty close to what I went through before the Whipple. 

    As far as options in lieu of insurance. If I recall correctly PanCan .org can inform you of some options as well American Cancer Society. I would think Johns Hopkins could possibly send you in the right direction for that info also.

    Prayers to your family,

    Oneshot

     

  • barbaralhancock
    barbaralhancock Member Posts: 2
    my husband stage 4 inoperable pancreatic cancer

    Hi Aggie0053,

    My husband was diagnosed in Oct 2013 with stage IV, inoperable. Luckily we had just moved back to WA state near the Seattle area.  The best place ever for cancer care.  

    His first doctor's appointment pretty much wrote him off, only to give him palative care.  Neither one of us were satisfied, so we went for a second opinion at Virginia Mason with Dr. Vincent Picozzi.  Let me tell you, we won the lottery!!

    He is amazing, my husband was the perfect candidate for a trial, and he and the other 10 people (no placebos) went through it, everyone of them did well.  He is 2 years out, and going through chemo again, the one spot on his lung grew, and he has one on his liver.  The one in the pancreas (which took over the whole inside) still is in the same place, no growth. Smaller than a grain of rice.....

    He has lots of energy, recently built a fence around our small yard, and the future looks a little brighter.

    Good luck to you and your wife!!

  • aggie0053
    aggie0053 Member Posts: 110

    my husband stage 4 inoperable pancreatic cancer

    Hi Aggie0053,

    My husband was diagnosed in Oct 2013 with stage IV, inoperable. Luckily we had just moved back to WA state near the Seattle area.  The best place ever for cancer care.  

    His first doctor's appointment pretty much wrote him off, only to give him palative care.  Neither one of us were satisfied, so we went for a second opinion at Virginia Mason with Dr. Vincent Picozzi.  Let me tell you, we won the lottery!!

    He is amazing, my husband was the perfect candidate for a trial, and he and the other 10 people (no placebos) went through it, everyone of them did well.  He is 2 years out, and going through chemo again, the one spot on his lung grew, and he has one on his liver.  The one in the pancreas (which took over the whole inside) still is in the same place, no growth. Smaller than a grain of rice.....

    He has lots of energy, recently built a fence around our small yard, and the future looks a little brighter.

    Good luck to you and your wife!!

    trial

    What kind of trial? if you don't mind me asking, my wife just finished her radiation, now wait 4 weeks for a scan(hopefully shrinks) then see what they do

  • HalfPanMan
    HalfPanMan Member Posts: 1
    aggie0053 said:

    trial

    What kind of trial? if you don't mind me asking, my wife just finished her radiation, now wait 4 weeks for a scan(hopefully shrinks) then see what they do

    Caught it somewhat early

    on a whim I decided to go to emergency for what I thought was diverticulitis as the symptoms were the same that I had 20 years ago when I did have diverticulitis.  Back then they didn't do a CT scan and diagnosed the divirticulitus by applying pressure to my intestinal area and asking me what I felt.   

    This time they did a CT scan and told me that I did NOT have diverticulitis but a collapsed bowel which would resolve itself.  The collapsed bowel is why I had the discomfort.  Then they unloaded the bombshell...  They said that in the background of the CT scan my pancreas was waving at them with a 2cm cyst!   

    Thank the good lord I chose to go to emergency that night back in May 2015 because I almost didn't go.  If it were not for that un-anticipated CT scan I would have never known there was something brewing in my pancreas.  I felt better than I had felt over the last 10 years due to a concerted effort to lose weight and get more fit thru exercise.  I had brought my weight down to 215 from 285 over the last 4 years and was feeling great!  

    My PCP ordered a MRI and the MRI didn't show to much more than the CT scan so an Ulta-sound was ordered and the ultrasound showed a large mass in my pancreas and it was the mass that was causing the cyst on my pancreas.

    i was then ordered to see a surgeon and she told me that there was no need for a biopsy because whatever the mass was it had to come out.  The Whipple procedure was done and the pathology tests showed stage 2 pancreatic cancer.  

    My chemo doc ordered another CT scan before my first Chemo treatment to insure no other cancer was visible and he explained to me that as far as what they could see there was no cancer in my body, but due to the nature of pancreatic cancer there was sure to be microscopic cancer cells that they cannot see flowing around that they needed to get.

    I had my first Gemzar treatment on Monday 9/21/2015.  Both Monday and Tuesday were my best two days since the surgery which occurred on 8/14/2015.  Then the symptoms hit me on Wednesday.  I had nuasea, body aches and felt really week.  I woke on Thursday with a terrible eye socket headache.  By the afternoon on Thursday I started to feel more normal and here I sit typing this feeling pretty good.

    For me I know the lord is by my side and I feel quite confident in a positive outcome on all of this and feel lucky that we were able to discover this before it hit stage 3 or 4.

  • Oneshot
    Oneshot Member Posts: 153 Member

    Caught it somewhat early

    on a whim I decided to go to emergency for what I thought was diverticulitis as the symptoms were the same that I had 20 years ago when I did have diverticulitis.  Back then they didn't do a CT scan and diagnosed the divirticulitus by applying pressure to my intestinal area and asking me what I felt.   

    This time they did a CT scan and told me that I did NOT have diverticulitis but a collapsed bowel which would resolve itself.  The collapsed bowel is why I had the discomfort.  Then they unloaded the bombshell...  They said that in the background of the CT scan my pancreas was waving at them with a 2cm cyst!   

    Thank the good lord I chose to go to emergency that night back in May 2015 because I almost didn't go.  If it were not for that un-anticipated CT scan I would have never known there was something brewing in my pancreas.  I felt better than I had felt over the last 10 years due to a concerted effort to lose weight and get more fit thru exercise.  I had brought my weight down to 215 from 285 over the last 4 years and was feeling great!  

    My PCP ordered a MRI and the MRI didn't show to much more than the CT scan so an Ulta-sound was ordered and the ultrasound showed a large mass in my pancreas and it was the mass that was causing the cyst on my pancreas.

    i was then ordered to see a surgeon and she told me that there was no need for a biopsy because whatever the mass was it had to come out.  The Whipple procedure was done and the pathology tests showed stage 2 pancreatic cancer.  

    My chemo doc ordered another CT scan before my first Chemo treatment to insure no other cancer was visible and he explained to me that as far as what they could see there was no cancer in my body, but due to the nature of pancreatic cancer there was sure to be microscopic cancer cells that they cannot see flowing around that they needed to get.

    I had my first Gemzar treatment on Monday 9/21/2015.  Both Monday and Tuesday were my best two days since the surgery which occurred on 8/14/2015.  Then the symptoms hit me on Wednesday.  I had nuasea, body aches and felt really week.  I woke on Thursday with a terrible eye socket headache.  By the afternoon on Thursday I started to feel more normal and here I sit typing this feeling pretty good.

    For me I know the lord is by my side and I feel quite confident in a positive outcome on all of this and feel lucky that we were able to discover this before it hit stage 3 or 4.

    HalfPanMan,
                    

    HalfPanMan,

                     Glad to see you keeping possitive! 

        Nausea, body aches and weakness is the norm (so I hear!)  Don't be surprised if food doesn't taste like you think it should. My tastebuds and smells of food were way out of wack.  Even the smell of things I normally liked would make me sick.  Hope that doesn't happen to you. But, if, it does. It will pass after the treatments.

      I'll give ya a little tidbit that I found out while getting Gemzar after my Whipple.    You don't have to worry about mesquitoes !  They flew within a couple of inches from me but wouldn't even try to land on me while I was getting chemo.  Any other time ...it was like I was the main coarse!  The humorious side of me wanted to see if they would just explode after getting some blood from me. Sort of like the Tabasco commercial.

    Will be keeping you in my prayers for a speedy recovery.

    Oneshot