Loading...

tongrenhealer's Recent CancerCompass Activity

  • tongrenhealer has replied to a post on the message board

    Just days away from the one year anniversary of Pat's death. Came back to look at the messages that came through as I compile a book of notes from our friends to give his Mom. Do not frequent the list much anymore, but wonder how some of you are doing from time to time. Hope all is well with each of you I became friends with in the EC years.  

    view post
    • tongrenhealer has replied to a post on the message board

      I think it depends on how he does. My husband never did well in restaurants or around crowds after his surgery. We tried and I got used to being left sitting at the table alone while he went out to the car. It isn't the same for everyone. He would have a vasovagal response to the lights, noise, smells, crowds. We could manage a restaurant in the off hours when it was quiet and not too crowded. Family gatherings were ...

      view post
      • tongrenhealer has replied to a post on the message board

        They really need to be careful of straining. Pat had his bowel herniate into his chest cavity about a year and a half after his Ivor-Lewis. I still think it was related to using our beast of a snowblower in the side yard when a car slid off the icy driveway into the yard. He just had to help and it almost killed him years sooner than the EC recurrences.    

        view post
        • tongrenhealer has replied to a post on the message board

          Pat reacted to reglan but was able to take domperidone and it kept the reflux away. Domperidone does not cross blood brain barrier like reglan does, so the side effects are no longer an issue with it.    

          view post
          • tongrenhealer has replied to a post on the message board

            My husband had no complications related to the surgery and was in 12 days. He had not even had his first swallow test by day 6. His surgeon was a stickler about no fluids till he passed a swallow test to make sure there were no leaks. He also never needed dilation post-surgically (survived almost 6 years past esophagectomy as a Stage IVb at diagnosis). I often think he did so well post surgically for scarring and nar...

            view post
            • tongrenhealer has replied to a post on the message board

              Hi Phil...just checked in on board today and saw this. We had Pat's domperidone compounded at the pharmacy in Beverly once when his dose was increased and I did not have enough. I usually sent the prescription off to one of the Canadian pharmacies because the cost was so much lower than having it compounded. It came from somewhere overseas (think the box usually shipped from Germany), and we never had any problems bu...

              view post
              • tongrenhealer has replied to a post on the message board

                I got your private message. I would not call FOLFIRI a wild goose chase. It is frequently one of the first combos used. My husband was doing well on FOLFIRI and it was more tolerable than any of the other regimens he used in the previous 5 years. It worked well until there was a shortage of 5FU and he was unable to have chemo. Many people were able to switch to Xeloda which is the oral form of 5FU but Pat did not tol...

                view post
                • tongrenhealer has replied to a post on the message board

                  Sorry to hear about your Dad. Hope you have lots of good memories to carry you through the years ahead. I am very thankful for the good times we had with my husband, and knowing that my son will always carry that in his heart. Hard to look at your children and know they have lost a parent. You will be in my prayers. 

                  view post
                  • tongrenhealer has replied to a post on the message board

                    Maria, I have been off the board for several weeks and just checked in. I am so sorry to hear about Joe...guess I need to do some catch up reading because I thought things had been going fairly well for him. It can get ugly very fast if it rears it's head again. Pat was doing well and making progress, then it ramped up so fast it was hard to believe. My son and I went to India with Pat's ashes, and offered...

                    view post
                    • tongrenhealer has replied to a post on the message board

                      If you feel this may be it and he is deteriorating it is time to see how he feels about going on hospice care. They are great with pain management and are familiar with all the options. They can increase the patch dose if he is still in pain. We ended up changing Pat's every two days because the pain would kick in before three days was up. We also overlaped the old patch with the new one for 2-4 hours. We had ot...

                      view post
                      Loading...
                      Load more activity
                      Loading more activity

                      About tongrenhealer

                      Caregiver
                      Esophageal Cancer
                      Alternative Treatments, Acupuncture

                      I was the caregiver to my husband who was diagnosed with adenocarcinoma at the GE junction, and lung mets in December, 2005. We battled recurrences with conventional treatment when we needed to. We complemented that with alternative energy healing called tong ren from November of 2006, along with occasional acupuncture treatments at some point. There were many been ups and downs, but I would encourage all to believe! There are all kinds of reasons, and many ways to fight EC. Pat died in February 2012, more than 6 years after a stage IVb diagnosis due to mets in his lungs and lymph nodes. His initial treatment was chemo/radiation and he had Ivor-Lewis surgery with clean esophageal margins, a clean lung and 3 of 6 nodes removed showing he still had live cancer cells. He made it another six years in and out of treatment after the surgery in spite of the fact we did not do clean up chemo until the EC reappeared in his lungs post surgically. I attribute the fact that he made it so long, and spent many of his post surgical years out of treatment to the fact that we used energy work on a daily basis.

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.