February 27, 2010 at 1:43 pm #35811lainyParticipant
Hi Gerry. Sounds like you had about what Teddy did. When they went in to do the Whipple they discovered that the dye from the Endoscopy leaked on the pancreas and “destroyed” it. The surgeon waited almost a month for it to heal and then did the Whipple again. Teddy did not have any chemo. While the pancreas was healing he developed a double e-coli infection. What a mess. But now 4 1/2 years later and at 77 he is doing quite well. Yes, a tiny tumor will crop up here and there but then we get it zapped with cyber knife. Considering his age and what he has been through he is truly unbelievable. Have you asked the doctor why the long wait? I am thinking they want to give you a month to recoup after the chemo? Hang in!February 27, 2010 at 4:17 am #35810
We were initially floored by the original, cancelled Whipple and what the future held, especially considering the spot found on BillFebruary 26, 2010 at 10:50 pm #35809hollandgMember
That’s a wonderful story and I’m pleased Bill is recovering and that your family life is returning to normal. I’m currently on chemo which is due to finish on 24th of March and subject to a positive scan, complete the Whipple at end April. The 1st attempt at the Whipple (last December) had to be aborted due to an inflammation in the pancreas. I have an internal stent fitted which is doing its job nicely. I’m aware that resection is the only cure with CC and I’m a bit worried about the delay in completing the resection. Bill experienced a similar delay (about 8-months)….were you concerned at that time? Did you get a 2nd opinion?
GerryFebruary 26, 2010 at 4:11 am #35808
Good luck tomorrow! I’ll thinking about you both.
GailFebruary 26, 2010 at 3:19 am #35807mlepp0416Participant
When Tom had his liver resection, he developed a bile leak from the cut side of the liver. We knew that was a risk going into surgery. But go figure that Tom would have a bile leak! I figure it’s because he’s a rare type guy. He gets a rare form of cancer, gets the bile leak that is generally rare per his doctors, and the average time for a bile leak to heal (per my research on the internet was about 63 days) and he’s so rare that his took over twice that amount of time! He also got three different kinds of infections while he was inpatient. Oh, did I mention that the average time inpatient for that type of surgery was about 5 days, well, he’s so rare that he was there for 21 days! (and I pushed his doc’s and told them we were leaving AMA so they better get home health set up) They got everything set up in record time and we left two days later!
Tom’s VA doctors also said that because he had clean margins there was no need for chemo. All his new civilian doc’s are now telling us that IF he’d had chemo back in 2008 he may not be fighting the fight that he is now going through. And because of his high bilirubin levels with his ‘new’ tumor (inoperable) he has another external drain bag to help lower those levels. He hates the bag, but it’s serving a purpose right now. He’s headed back into surgery tomorrow morning and they will once again try to place an internal stent so the bile flows where it is supposed to go. (They have tried 4 times previously and for various reasons it was not successful). The tumor has now shrunk and some bile is getting through and the interventional radiologist can see the contrast go past the tumor so he feels that he will be able to place the stent tomorrow. Gawd I hope so! All Tom wants to do is to be able to lay on his right side again and can’t do that with the external drain.
We all have something to look forward too! Warm weather is just around the corner for those of us who live in states where winter seems to dump a lot of snow and cold on us. Tom too is looking forward to being able to just sit outside and soak up some sun! He’s been cooped up in the house pretty much since Thanksgiving when he presented with this new inoperable tumor.
You can read Tom’s story under my login name mlepp0416 (My husband and Cholangiocarcinoma)
Go with God and KEEP KICKIN’ THAT cancer.
MargaretFebruary 24, 2010 at 8:44 pm #35806gavinModerator
I am glad to hear that Bill is now home with you and I am sure that the smell of home is far superior to that of the smell of the hospital! I know that when my dad got home from the hospital that his mood improved so much and he also enjoyed the fresh air!
I hope you both enjoyed your walk and I am sure that Bill will enjoy the fattening up process!
My best wishes to you both,
GavinFebruary 24, 2010 at 5:23 pm #35805
Yes, I do have to track the drainage. He’s going to keep his bile drain in until follow up chemo/radiation is done (hopefully by mid to late summer). But they took the bag off of that one; I just have to flush it 2x/day. They did send us home with a bile bag in case something happens. He’s got 2 active JP drains. One is pretty minimal, so I’m hoping they’ll take that off next week when we go back for follow up. No telling how long the last one will stay in. Whatever! Minor inconvenience that we’re happy to deal with:-).
Why was Tom’s in for so long? I don’t have any sense of what’s considered a “normal” response/recovery….maybe nothing?!?!?
Warming into the 40s today (woo hoo!), so we’re actually going to try and take a little walk outside to get Bill some fresh air. My parents are here helping out, so my mom is very happy to be cooking for him. We need to fatten him up!
My best to all,
GailFebruary 24, 2010 at 11:55 am #35804mlepp0416Participant
Thoughts and prayers coming Bill’s way. You’ll be amazed at what you can do! Been there, done that all with my husband Tom. Do you have to track the drainage? I had to do that for 7 1/2 months with Tom after his surgery with his bile leak drain. Does Bill have a JP Drain?
Go with God and KEEP KICKIN’ THAT cancer.
MargaretFebruary 24, 2010 at 4:32 am #35803
Thank you, everyone. I got Bill home this afternoon. He’s very happy to be out of the hospital. He had enough of the smells, walking the hallways over and over, getting blood drawn at 3am, etc…When the surgeon (and team) came by this morning, he didn’t like the look of one area on Bill’s incision, so he had to reopen a small part of it and get it cleaned out. They were going to keep him another day because of it, but he talked the dr. out of it. I was already shown how to strip and empty his drains. Now I’ve learned how to pack a wound. A far stretch from my accounting background! But happy to help, of course. And so happy to have him back home.
I’ll keep checking in on everyone. Good night.
GailFebruary 23, 2010 at 2:00 am #35802daddysgirl-2Member
Hi Gail, Happy to hear positive stories on this site. It offers so much hope! Best wishes to you and your family from sunny, but cold Minnesota.
JoleneFebruary 22, 2010 at 9:19 pm #35801devoncatParticipant
What a wonderful story. I hope your husband continues to heal and never has to worry about cc again.
KrisFebruary 22, 2010 at 7:57 pm #35800gavinModerator
Welcome to the site and thank for sharing Bill’s story with us all. That is quite some journey he has been on and I am glad to hear that his recovery is going well. I hope you can get Bill home on Tuesday and that he continues to make good progress with his recovery.
You are right about what you say regarding carers and to take help if you can. I was my dads carer during his battle with CC and am also my mums carer and have been so since 2003, she has COPD and it gets hard sometimes being the carer. We certainly do need to take care of ourselves!
My best wishes to you and Bill,
GavinFebruary 22, 2010 at 5:55 am #35799marionsModerator
Gail….I would like to echo Lainy in welcoming you to our site. This is a tough surgery to recover from but, each day is one more day of feeling a little bit better. I am hoping for you to bring Bill home on Tuesday. You are so very right in acknowledging the fact that caretakers need some caretaking also. We have a caretakerFebruary 22, 2010 at 4:07 am #35798lainyParticipant
Dear Gail & Bill, Welcome to our Family! And Congratulations on all your outcomes. My husband Teddy had a Whipple 4 1/2 years ago at the age of 73 and is doing quite well considering the CC returned a year ago where his duodenum used to be. We got it zapped with Cyber Knife which is a miracle if it can be used. He now has 2 new tumors one near a kidney and one near he liver but for some reason they seem to be shrinking! We will know more after March 17th and a PET Scan. It took him about 6 months and he was back at work part time and gently golfing. You are doing a great job and the Care Taker must take time for themselves. Yeh, yeh, I know easier said than done.
I always say we remain realistically optimistic and it is what it is so now lets take care of it. You have good attitudes and that is exactly what is needed. Please keep us posted and visit often.February 22, 2010 at 2:34 am #3215
In April 2009, my husband Bill (62) ran the Boston Marathon, his 5th since turning 60. A few weeks later, he just didn’t feel “right”. Nothing really hurt, but he had no energy. He thought he was just recovering from the marathon. I convinced him to see his doctor who took one look at his yellow skin and eyes and brown urine and immediately sent him for a CT scan. We had to wait over Memorial Day weekend to get the results. His Dr. reported that there was a stricture that appeared to be in his bile duct and sent us for an MRI. By the next day we had an appointment for the following week (June 1) for an ERCP which confirmed a malignant tumor, CC.
We quickly got connected with a surgeon at Johns Hopkins who has done hundreds (thousands??) of Whipple procedures. He explained that he would go in laparoscopically first to take a look around, the thought being that if there were any signs of metastatic disease, he would not proceed so that chemo could be started sooner rather than later. And that
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