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betsym's Recent CancerCompass Activity

  • BetsyM has replied to a post on the message board

    Hi All, It has been a while since I've read or posted in here.  My husband is still NED (no evidence of disease) and we are enjoying life.  He had T3 - urachal adenocarcinoma and his tumor invaded soft tissue.  We did surgery and chemo (Dr. Seifker's regimen) and my hubby is still doing well.  We are now 3+ years from diagnosis.  He gets surveillance scans in June.   We know how lucky ...

    February 03, 2015 view post
    • BetsyM has replied to a post on the message board

      So happy to hear more good news, Mark.  You have been through the ringer and I have been praying for you. My hubby is doing well since chemo.  We had a scare after a ct in Aug that showed what they thought were mets in his lungs.  They turned out to be sarcoid.  In addition to this rare cancer, the freak of nature I married has a rare auto immune disease that flared up after chemo. His recent CT...

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      • BetsyM has replied to a post on the message board

        Yee Ha, Mark. I love good news like this.  Stay strong brother.  Thoughts and prayers are with you.

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        • BetsyM has replied to a post on the message board

          Hi Dixie,  I am sorry to hear of your prognosis, but I agree that a positive attitude is always good.  You did not mention why it was not resectable.  Did they give you specifics?  I'm wondering if you can do chemo and/or radiation to shrink it, would it then be operable?  My husband was given news from a doctor that there was nothing they could do if it was metastatic (we won't know if it w...

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          • BetsyM has replied to a post on the message board

            Hang in there Mark.  I hope the cement works and gives you some relief. 

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            • BetsyM has replied to a post on the message board

              You got it!

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              • BetsyM has replied to a post on the message board

                I'm so glad you were able to get Dr. Seifker's opinion.  We met with her in person and we found her to be straight-forward without a lot of "ego."  We trust her.

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                • BetsyM has replied to a post on the message board

                  I just read the new post you created and see that you had stage 3 tumor and negative lymph nodes. That is great news.  Some people take a wait-and-see approach if there is no evidence of disease, but that was not acceptable to us because of the narrow margin - where Jim's tumor had invaded soft tissue, so did go through the muscularis. How aggressive you are with the chemo ends up being a guessing gam...

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                  • BetsyM has replied to a post on the message board

                    Hi Phil,  I so understand your confusion.  We have been on that same roller coaster.  I am not a clinician, so I don't want to give medical advice.  All I know is that, as an adenocarcinoma of enteric type, Jim's tumor is more like a colon tumor than a bladder cancer, so a colon regimen like FOLFOX is one we considered.  We decided to go with Dr. Seifker's regimen because a) she has trea...

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                    • BetsyM has replied to a post on the message board

                      Hi Mark, Glad you are doing well after your recent surgeries.  Hang tough.  Adjuvant chemo is done after/"in addition to" the tumor resection surgery, which MDAnderson definitely does.  Jim had his surgery here in Utah, then got the chemo regimen from Dr. Siefker and is having it done here.  She recommends 5-6 rounds.  As for "preemptive" chemo, that is usually called neoadju...

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