• debberz's Avatar

    debberz wrote on bettinfla's wall

    Got it! Replied - it is a long email address!

  • debberz's Avatar

    debberz wrote on bettinfla's wall

    yup on FB search lovins

    2 Comments
    • bettinfla's Avatar
      bettinfla

      didn't come up with anything close to you..lol there is a way to share e mails in the help section here, I don't know how to get to it.

      about 4 years ago
    • bettinfla's Avatar
      bettinfla

      ok found it and sent you my e mail address.

      about 4 years ago
  • debberz's Avatar

    debberz wrote on bettinfla's wall

    Would love to meet sometime. Apparently on this site phones numbers get blocked as it is not posted. Same for the name of church - it is not XXX!!! That is not what I wrote! If your husband is on the same protocol Bob is on - radiation to shrink tumor (if that is your Drs. plan) starts when the chemo switches to 5-FU - short name of this chemo. Together the chemo with radiation is supposed to shrink tumor. However - this is for a tumor on the head of pancreas - not in body or tail. Yes the Zofran is prescript and Creon as well. The Zofran melts on tongue and works almost instantly. Creon is a combination of 3 different enzymes that replace the natural enzymes for digestion. Bob lost weight in the beginning pretty rapidly but gained some back and is maintaining it now but that is only because with out something to help digestion, you cannot keep weight on. It is pricey. It is made by Abbott. There is no generic. Also- we started with a Dr. who specializes in pain management. He has been right on target with time - when he would need stronger pain killers, etc.

    2 Comments
    • bettinfla's Avatar
      bettinfla

      Are you on Facebook? but I'd need your name, don't know how to get around it. I could use the name of the church too.. there's no private messaging on here. Ray not on pain killers, yet.

      about 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      Hi Deb, yes phone numbers and email addresses are automatically blocked for the privacy protection of the users. Some people will post all their personal information, phone, address, name, etc for all to see, that is not safe so it is blocked. If you want to exchange emails, click on the exchange email link on the other persons page you wish to connect to, that way it's done in private.

      As for the church, there is a list of words that are sensored to prevent people from posting words or phrases that are objectionable to some. As you can imagine there are some church words, or names that can be put together to form offensive phrases. It's not perfect, but we err on the side of safety and not offending. If you need anything or help navigating the site, please let me know. We are always here to help.

      Greg P
      3x Survivor
      Team WhatNext

      about 4 years ago
  • debberz's Avatar

    debberz wrote on bettinfla's wall

    Hi again - your husband must be on "gemzar" - just guessing. Bob did the 3 weeks of chemo and one week off also. We did this for 2 rounds and on the second "week off', we left MI to get back here. It is very important to keep calories in him. If he wants chocolate cake and ice cream for breakfast - get it. I stocked up on Boost and carnation instant breakfast and muscle milks. He takes "creon" to replace the enzymes that the pancreas can no long produce for digestion. Zofran is awesome for nausea. If he is on any med that you don't feel is helping - speak up loud and clear to the Drs you are going to. I found that men (most) will never tell the Doc what is really going on so you as the caregiver have to speak up. Also - for support groups - I know that there is a cancer support group with Christ Fellowship church. I know they have a satellite gathering on Sundays somewhere in Stuart. For heartburn he should be seen by a gastroenterologist - in Bob's case the tumor was closing up bile duct so he had to have a stent put in to keep open. I will keep you in my prayers. This is not an easy journey and no one but God knows the outcome. If Bob's tumor shrinks, we go back to MI for surgery. My other thought to tell you is you have to trust the radiologist. I did not like the attitude of the radiologist in MI and I love the attitude of the one we go to in Jupiter. If you want my ph number to chat, let me know. I have been in tears most of morning. Taking down Christmas stuff already. Feel like there is nothing to celebrate as much as I try to stay positive for everyone else's sake.

    1 Comment
    • bettinfla's Avatar
      bettinfla

      Thanks, he is on Gemzar. I just got him Boost -- couldn't do Ensure, made him sick. Are Creon and Zofran a prescriptions? I go to the oncologist doctor with him before chemo treatments..I do speak up. Ray's already had a stent put in -- bile was building up back in October. He didn't do radiology. I would like to chat...here's my cell[phone number redacted]. I wanted to take down Christmas stuff but Ray said, NO, we always leave it up for New Year and we will this year. Have to abide by his wishes. He's still going to work, however, I just applied for Social Security today, don't know what the waiting period is, but for when he can't work. He was 62 December 6. Thanks so much for your info...I know, we have to stay positive but therapist gave me a sheet on crying, it's actually good for you. Deep breaths, also.....Hugs and prayers to you also...Looking forward to chatting or maybe even a lunch. Jupiter isn't that far away or we could meet in Hobe Sound -- maybe halfway. I'm on Hutchinson Island in Jensen Beach.

      about 4 years ago
  • debberz's Avatar

    debberz wrote on bettinfla's wall

    Hi again - I forgot to mention he is 71 and a diabetic to complicate everything.

    1 Comment
    • bettinfla's Avatar
      bettinfla

      Hi Debbie, thanks for responding. I don't know what stage my husband's is but I know it's inoperable. He's had 4 chemo treatments (weekly w/one week off) and has 2 more then a ct scan to see if it's shrunk at all. He's been losing weight for over a year so I would imagine in the later stages. He's still losing weight and has terrible heartburn. I worry about the pain but guess we'll cross that bridge when we get there. My husband is 62...I've just begun some counseling myself; coping with this, as you know is very difficult....

      about 4 years ago
  • debberz's Avatar

    debberz wrote on bettinfla's wall

    Hi - my name is Debbie and I am caregiver to my boyfriend of 6 yrs. We were on vacation in Michigan the end of September when he became extremely sick. hospitalized and diagnosed with pancreatic cancer on head of pancreas. He is stage 3 and in inoperable unless the tumor shrinks and then he might be able to get the "whipple" procedure. We are in Jupiter where he is on chemo pump 24/7 and radiation daily M-F. I don't know how much help I can be for you but I am here. We are in FL until March as we have to wait 4 weeks after last radiation before new pix are taken to determine if he can get to surgery. My first thought of advice to you is the same than was given to me by a husband whose wife was in the same condition: take care of yourself ( which is difficult) and stay on top of the pain, stay on top of the pain and stay on top of the pain. These were his exact words and at this point we are in beginning of staying on top of pain. Hopefully your husband is not stubborn because it makes it harder.