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    jdub54 started following

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    jdub54 posted an update

    Another 1/4, another clean set of labs and CTs. And I had a great opportunity to chat with other patients while waiting for my copies of discs to print.
    Pancreatic patient who found his cancer by accident...sledding accident! 2 years in and well, living with port in side, and getting scanned and tested even more than I am! Also getting chemo regularly; I am so glad they have chemo that can help pancreatic patients.
    A multi-cancer survivor's wife, who journals everything, resulting in saving him from having a lack of needed service, or harmful treatments. She's his partner in life, in SO many ways.
    Going for imaging is becoming positive for me!

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      sounds promising. Lots of things are changing as time goes along. More and more advances are being made.

      almost 4 years ago
  • jdub54's Avatar

    jdub54 wrote on jan_h's wall

    My ENT surgeon at Jeff is Dr. Marc Rosen. He was able, due to a well forward location (about where my glasses sit on the bridge) to do my surgery intra-nasally. Standard of care was de-gloving of the face (what I call a Learning Channel episode), so I really appreciated his efforts! Oncologist is Dr. Takami Sato, a melanoma researcher, and a good doctor in that he works with me as a member of my care team; i hardly feel like the patient. I did NOT do my radiation therapy there, mainly due to the need for M-F for over 6 weeks, so I moved it to a hospital near me East of Trenton, Nj, and it never came back to the original site. I even used a surgeon at Jeff for my only metastasis 3 years ago (caught early small spot L Lung), and that was minimally invasive thoracic surgery (scope, 3 small holes, quick recovery). Just be a vocal, active self advocate and know your stuff; if so, you will be treated as an equal and be in control of your own treatment. I'd also endorse using the Jeff Center City Imaging unit at 850 Walnut; they even comp parking 100%!!! We joke about my 1/4ly visits earning frequent flier miles....The parking at 925 Chestnut can be valet, and if so, costs about the same as parking it yourself; so get your ticket validated before you leave the doctor's office each time (sure is nice in crappy weather or when feeling crappy!). So much more info to share, let me know if you need more direct contact with me.

    7 Comments
    • jan_h's Avatar
      jan_h

      Again, my apologies for taking so long to respond. I am going into the hospital tomorrow for chemo as an inpatient and have been going nuts trying to get ready and also close things out at work.

      I agree with you about getting copies of your test results. I have done that, but have to admit I have not been consistent about it. I will have to check with Jeff, because I don't have copies of the tests I've gotten there - just two so far.

      Fortunately my radiation wont start for another month or even longer, so I have time to check into it. However, I suspect I won't find anything too close. I live in the boonies. You never know, though.

      Good luck with your quarterly tests! That must be a roller coaster. Always wondering if it came back or traveled somewhere else. I guess I have that to look forward to.

      Please let me know how the tests come out. For the best, I hope.

      Take care.

      almost 4 years ago
    • jdub54's Avatar
      jdub54

      All my best wishes for you throughout your chemo. I have no great advice, having no experience. I hope it is as painless/side effect free as possible.

      I just opened the email with my new blood work; all is well there (Labcorp has a secure test result personal storage "vault" with Microsoft; test last Saturday, results Tuesday, not bad). CAT scans in 20 days. Not expecting any surprises. 59th birthday today, now over 4 years since first surgery, only 2 weeks til I am 3 years N.E.D. All things considered, couldn't be any better-unless I could really retire and not NEED a job! After a 28 year Federal career, i was looking forward to some down time, but it has not been meant to be.

      Good luck tomorrow-how long is the inpatient part? I'm jealous that you have something deemed curable; be a warrior and kick its butt! It may not be much fun at times, but I think throwing all the weapons you have available in your arsenal at your disease is a good move
      If you have a tablet/laptop during your hospital stay, please keep in touch!.

      almost 4 years ago
    • jan_h's Avatar
      jan_h

      Great news on your blood tests! Now to wait for the CAT scans. Please let me know how you do.

      Happy 59th birthday and three-year NED anniversary! I hope you had/will have a big celebration.

      I know what you mean about retiring. I will be 65 next month and I am planning to work until I am 66 for financial reasons, although I'd rather not.

      Jeff provided internet access, but I had trouble accessing this site. I sometimes have the same problem at home. My guess is that there is a lot of traffic.

      My three-day stay at Jeff was basically uneventful, but once the IVs were disconnected I started to experience nausea. That lasted for about three days, and the antinausea meds I was given prevented it from getting really bad. Soon after the nausea started to subside I caught a cold, and I have been doing everything in my power to fight it - mainly eating right and getting lots and lots of rest. So far, so good. The very good news is that the chemo is working. Before I went into the hospital I could not breathe out of my right nostril at all, and could only breathe out of the left nostril sometimes. That improves daily. I can now breathe out of both nostrils, although not perfectly. My headaches aren't as bad or as frequent. I still have no sense of smell and only time will tell if it will ever return.

      I see both Dr. Rosen and my oncologist/chemo Dr (Dr Axelrod) next week. Unless something changes as a result of those visits, the plan is to have one more round of chemo on an outpatient basis, and then take some scans to determine whether the tumor has shrunk enough to do surgery.

      In the meantime, one of the most frustrating things about this whole experience has been dealing with the insurance companies. Have you had problems with insurance companies?

      Take care and best of luck on that CAT scan. I'll be thinking about you.

      almost 4 years ago
  • jdub54's Avatar

    jdub54 wrote on jan_h's wall

    One of the BEST things about your location is the proximity to many good cancer institutes in Philly, and NYC in a not-unreasonable drive. I alternate between Jeff U in Philly one 1/4 and my "2nd opinion" Chief of Melanoma @Sloan Kettering in Manhattan the next. Good luck, I hope it is early, small, and not the version I have!

  • jdub54's Avatar

    jdub54 wrote on GregP_WN's wall

    Greg, having had radiation and teeth pulled before, and several failures since, the one thing that is often recommended is hyperbaric oxygen to promote healing and help fight the infections. So says the outstanding ENT surgeon who avoided de-gloving my face by excising intranasally. He is good; my dentist confirms we may need to consider it if things flare up. If your insurance will accept it, and docs order it, it might give you that edge to control or at least delay this. Just a thought, let me know if you need more info; although I am told it is a well known use of hyperbaric, if it hasn't been discussed with you yet, ASK the docs!.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Thank you sir, that is good information. I have had that talk with my Oncologist, the ENT's , the oral surgeon, one Prosthodontist, and one endodontist. I think there was a cat and dogontist in there somewhere too. HBO treatments were going to be 48K !! And no insurance to cover it. Then there was discussion between my oncologist, ent, and all the others as to the benefit versus the risk of kick starting a dormant cancer cell. Oncologist didn't want to do it, Oral surgeon did.

      Now this same medical center's practice is to just take the teeth out first before you have treatment. 4 years ago, they didn't have that plan.

      about 4 years ago
  • jdub54's Avatar

    jdub54 wrote on GregP_WN's wall

    "even though I hope I'm done fighting for myself."
    From your lips to God's ears, brother!

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Thanks, I hope I'm done. Still fighting the side effects now. My worst problem is the damage radiation done to my jaw bone, teeth, neck area. All teeth are having to be taken out with surgery, at risk of Osteoradionecrosis, (rottening of jaw bone) if they don't heal. I have to go and get a few out at a time. Next visit Valentines day, my wife said "happy valentine's day to her" We get to spend it at the hospital.
      Oh well, nobody ever said having cancer was fun.

      about 4 years ago