• magdem's Avatar

    magdem posted an update

    Here I am in Houston. Hopes shattered. Was waiting to have the Whipple next Tuesday. Had abdomen and pelvis CT scan this morning then met with oncologist.Cancer has spread. Lesions in lower part of both lungs. Everything canceled - no Whipple. I asked how long and she said 2 years from date of dx which means 1 1/2 years. Right now I am devastated. Lots of tears with husband. Have appointment tomorrow to see how we will proceed and try to get clarification. Was so shocked I know I didn't hear/understand everything.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Sorry your in that wait and see state. That's frustrating. Maybe they can give you a nice plan of attack and make you feel better knowing whats going to happen. Try to slow down and think when they are talking to you, take it all in, write things down or take a tape recorder. It's best to have someone with you who is taking notes or getting the information. I have been to the Dr. untold numbers of times over 25 years of treatments, etc. I always either forget to ask something, or I just plain forget what he said.
      We wish you the best!

      almost 8 years ago
  • magdem's Avatar

    magdem posted an update

    The rest of my question didn't show, so here it is: My surgery will be out of town and I don't want to pack too much or unnecessary things. The hospital stay is expected to be 8-10 days, then 1-2 weeks in a hotel room. What kind of clothes will I be able to wear ? The surgeon cannot tell me yet how long the incision will be, so are pants practical. Were you ladies able to wear a bra? Any advice you can give is much appreciated as my husband won't be able to 'just run home' and pick up what I need. Thanks so much in advance and have a wonderful New Year.

  • magdem's Avatar

    magdem posted an update

    Thank you so much for all your answers. Since it was the weekend, I will be on this first thing Monday morning. This forum is such a blessing - thanks again.

  • magdem's Avatar

    magdem posted an update

    Had 3rd ERCP in as many months last Friday. The first two were to place temporary plastic stents, this last one was to place a permanent metal stent. Had full anesthesia each time and had absolutely no problems the first two times. This time I woke up in recovery ready to sprint on out to the nearest restaurant since I hadn't been able to eat for 2 days.Doc and I finally compromised on a small bowl of Cream of Wheat. Got back to hotel room, husband prepared COW and the nausea started. The only thing I could do was lay in bed with head hanging over the side vomiting/dry heaving into a trash can all night long. At 6:30 AM I called the emergency number and they sent me to the ER thinking the ERCP had caused pancreatitis. X-rays, blood work, urine sample, etc. Vomiting/dry heaves, IVs for dehydration and nausea medication (which didn't put a dent in the nausea). Finally sedative so I could sleep. 12 hours later the diagnosis - constipation! Now I'm no doctor, but it seems they pulled that one out of the "if all else fails". Was given the obligatory enema and discharged into misery. Nausea continued non-stop, it was paralyzing. Just the thought of food, or a commercial showing food, or the smell of anything associated with food brought on vomiting/dry heaves. This went on until Wednesday when I had a small pang of hunger and was able to take a couple of sips of Ensure and Gatorade. My poor husband was at his wits end trying to help me and he celebrated every sip. Yesterday, I was able to keep down solid food for the first time in almost a week and this morning I woke up wanting to raid the fridge. IMHO I think my body needed to adjust to the new 'foreign object". Next Monday I start chemo and radiation and I'm scared to death of the nausea. Treatment ends November 14 and I hope to be home for Thanksgiving and Christmas. Whipple now scheduled for January 8.

  • magdem's Avatar

    magdem posted an update

    Much better today, ball is rolling again. Medication for blood clot making Whipple impossible at this time. Plus have gallbladder infection. Will insert tube to drain fluids from GB and scheduled for 3rd ERCP to replace temp. Stent with permanent one, just had current one put in last week. Start chemo and radiation next week but docs want it done here in Houston so just extended hotel room for 5 weeks. Hubby has to get back to work because I'll need him when they do surgery, plus we're down 1income as of this month. They plan to do 5 weeks of chemo and daily radiation, then stop for 6 weeks. Yippee, I'll get to go home. Then back in Dec or Jan for Whipple. I asked again today what stage I am and he said stage II either A or B, he couldn't say for sure. At least something is happening again. I don't do well when things come to a complete standstill.

    1 Comment
    • SurvivorLiz's Avatar
      SurvivorLiz

      So glad things are on the move again for you. It's hard to understand why things happen the way they do but, God knows! I'm really glad you are going to have the chemo and radiation before surgery. Your timing is going to be almost the same as mine, I hope your results will be as good as mine. I Will pray everything goes as planned for you and you won't get to sick from the treatments.

      I posted the results of my visit to Roswell Hospital today on my site. Good results again.

      about 8 years ago
  • magdem's Avatar

    magdem posted an update

    Frustration. Here we sit in our hotel room, was scheduled for the Whipple this morning. Did all pre-op stuff yesterday, had green light, told to check in at 5:30 am. Left hospital and on our way out of parking garage got call that everything cancelled and to come back inside. Radiology found blood clot, can't operate. Doctor not available till Wednesday. So sit here another day and wait to get update on how things will continue. Was given meds to self inject. Have I Mentioned I'm frustrated. So now what, do we drive home only to start this roller coaster all over again? Have I mentioned i'm beginning to hate hotel rooms, oh, and i'm frustrated. I am in my pity pot right now, darn this cancer!!!

    2 Comments
    • FreeBird's Avatar
      FreeBird

      Hello! Delays and waiting can be frustrating and exhausting. Know that even when you feel like you're standing still, you are moving in the right direction because the ball is still moving forward on treatment. Who knows? Maybe the doctor will have a better sleep next time. How far away from the hospital do you live? If money is a concern for the hotel, ask on here for resources available for hotels for cancer patients.

      about 8 years ago
    • SurvivorLiz's Avatar
      SurvivorLiz

      I wrote you a note earlier but I must have done something wrong because it doesn't show up. Anyway I'm so sorry you are having such a frustrating time. Jerry tells me I had some setbacks too, but to be honest I don't remember them. I do remember heading for radiation treatment and ended up going to the ER instead. Please keep us posted on how you make out today. I will try to call you tonight. Good Luck Hope they can do your surgery soon.

      about 8 years ago
  • magdem's Avatar

    magdem posted an update

    Spent the week at MD Anderson Cancer Center in Houston. My goodness, what a place. Even though I felt I was on an assembly line, they treated me as a human being. They did all the tests again, although, I feel, much more thoroughly. Met with pancreatic surgeon on Wednesday who told me that there's a 20% chance it may not be cancer. 20% is better than 0%. But that leaves 80% and I don't want to have false hopes. Drove home on Friday and will return next Tuesday. Oh, hotel life. Scheduled for another ERCP next Wednesday to get another biopsy and then the Whipple has been scheduled for September 11. Good news is he doesn't feel I need chemo or radiation until after the surgery. If all goes as planned won't be home again for the next 3 to 4 weeks. Depending on how soon he'll let me travel after release from hospital.

    Had a really bad bout of constipation after the CT Scan. Happened last time, too. I guess it's the contrast that I have problems with, but it's been so painful that I almost went to my ER yesterday. What stopped me was being afraid they would admit me and I wouldn't be able to get back to Houston next Tuesday. I've been afraid to eat much, so I'm living on chicken and noodle, chicken and rice soup at the moment, although I don't have much of an appetite at all.

    When I think about the initial diagnoses on August 2, my doctor here had referred me to have the Whipple with a local surgeon and I could probably have had it by now. I'm so glad my husband convinced me to go to MDA. These people are really the experts.

  • magdem's Avatar

    magdem posted an update

    I got some good news yesterday. After receiving my diagnosis on August 2nd, I got my first appointment at MD Anderson Cancer Center for this coming Monday. Made hotel reservations last night - Let the fight begin!

    1 Comment
    • KarenG_WN's Avatar
      KarenG_WN

      That is great news...keep things moving forward!

      over 8 years ago
  • magdem's Avatar

    magdem posted an update

    Thank you Madison. I wish your husband and you (I know what my husband is going through) all the best. We decided last night to get a referral to MD Anderson in Houston. I researched our local hospitals and doctors and I just don't thnk they have the experience. The initial shock has worn off and now we just want to get moving and have something happen soon. But the roller coaster ride is terrible. I feel my symptoms are getting worse and I don't know if it's my mind playing games. What were your husband's symptoms?