surfer1

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 40 total)
  • Author
    Posts
  • in reply to: Hello all #90507
    surfer1
    Participant

    My husband had a portal vein embolization in January 2014. It was a fairly uneventful procedure. One night in the hospital. Not too much pain. Best of luck to you.

    surfer1
    Participant

    We just met with a doctor yesterday and this one came up. It is suspended right now, but he had said they were showing some promise with it. Hopefully they figure out the issues and reopen it.

    in reply to: Portal Vein Embolization question #87312
    surfer1
    Participant

    My husband had PVE, although not through the jugular. The procedure required an overnight stay in the hospital and some discomfort, but very tolerable.

    Best wider to you and your husband.

    in reply to: Ablation or cyber knife? Decisions #85541
    surfer1
    Participant

    After consulting with the surgeon again, he suggested moving forward with the cyber knife. My husband is having the fiducial markers placed as I type this. It took a while (too long in my opinion) to get all the approvals in place, but at least now the process has started. The oncologist also started him on capcitabine. So far, he’s been tolerating it well.

    Let’s hope this thing works.

    in reply to: *Resection recovery – what to expect* #84891
    surfer1
    Participant

    My husband had his resection surgery in April of this year and following his surgery he could only tolerate a tablespoon or two of food at a time. He couldn’t stand to look at a plate of food so I just put a tablespoon or so on it. After about a month, he could eat a little more at a time. By a few months out he was eating about half what he did presurgery. He still doesn’t eat as much as he did before, but he it careful to eat mostly healthy food and as much protein as possible. He mixes protein powder with hot chocolate to help increase his protein intake.

    He still doesn’t have as much energy as he did before, but it has increased over time. It just takes time to heal from such a major surgery.

    We found that stool softeners and coconut water (mix it with some juice if you don’t like coconut) help keep him regular while he was on pain meds following the surgery and while he has been on chemo. He usually has two small containers of it a day.

    Good luck with your mom. It’s tough watching them go through this and you feel like you can’t make it better for them.

    in reply to: Mayo Research Study #83290
    surfer1
    Participant

    Yes, Nasra just responded to my email and she is going to send the billing info to give quest.

    in reply to: Mayo Research Study #83288
    surfer1
    Participant

    I received the kit for my husband. I tried having our clinic do the draw but they won’t deal with the shipping portion, even though it is pre paid, pre labeled for FedEx. I then went to quest diagnostics but they won’t do it without billing information. I explained that it would be patient paid and they said no, it has to be set up for billing the mayo or insurance.

    Any suggestions?

    in reply to: Could this be a new lesion? #84234
    surfer1
    Participant

    Congratulations! Great news.

    in reply to: Good scans! #83387
    surfer1
    Participant

    Thanks all! He went out Sunday and just paddled around but today he caught a wave. I haven’t seen him that happy since this all started last July. It’s amazing how just one wave made him feel normal again. It really was the best prescription the doctor could give him.

    in reply to: CLEAN SCAN #83365
    surfer1
    Participant

    Wonderful news Porter! Congratulations. I think it is time to celebrate and do something nice and pamper yourself.

    in reply to: Information requested please #83056
    surfer1
    Participant

    My husband was on gem/cis for seven months prior to his resection. He took zofran the day of the infusion and for two days after to help form getting nauseous. He didn’t have nausea except maybe once or twice and it was very mild. He started with the two on/ one off schedule but that changed to every other week due to low neutrophils (a portion of your white blood cells). We learned that we needed to be flexible because each round was different. Some times he felt good, others he could barely get out of bed. Some times he had to have his infusion postponed due to low counts. We just had to roll with it and realize we couldn’t control everything (very frustrating).

    Hydration is important -make sure he drinks a lot. The worst side effect he had was constipation. We found that drinking coconut water the day before infusions and for the next five or so days, along with two stool softeners at each meal worked the best.

    Good luck with it. At least you know there is an end in sight.

    Take care.

    in reply to: My husband is going to have resection surgery! #81329
    surfer1
    Participant

    My husband had his surgery six weeks ago yesterday. They ended up taking more liver than they expected since the tumor grew since his previous scan. It was a good thing he had the portal vein embolization procedure done so that they could take more liver. It was a long surgery but he did well. He was in the hospital for seven nights and then came home. He had a rough time with fluids in his belly and legs, and had to be tapped two separate times and was placed on diuretics and a low/no sodium diet to keep that in check. He was hospitalized overnight at three weeks out due to the fluids and difficulty breathing. They did an MRI to make sure everything with the surgery was working okay and it was. At six weeks, he is doing better and starting to do more every day. He’s lost over thirty pounds since his surgery. We are working on getting him to eat more (especially protein) and walking more. It’s a good thing he was in excellent shape prior to all of this.

    The pathology report indicated two satellite tumors in addition to the one tumor we knew about (making him stage t2b). We see his oncologist again next week and will discuss chemo plans. She said she wants him to do chemo but the specifics aren’t known at this time. It seems like the gem/cis he was on previously didn’t do too much to kill off his tumor so I’m wondering what the best cocktail will be. The did say they got negative margins and no lymph nodes were involved. We are just focusing on recovery at this point and will deal with chemo when it comes.

    Thanks for all the positive thoughts and prayers.

    in reply to: DONE! #81634
    surfer1
    Participant

    Such happy news. Congratulations to you both.

    in reply to: Looking for specialist in Los Angeles #81091
    surfer1
    Participant

    My husband is being seen by Dr. Colquhoun at cedars sinai in Los Angeles. We also got opinions with Dr. Selby at USC and Dr. Imagawa at UC Irvine. All are knowledgeable about cc.

    in reply to: another resection member #81492
    surfer1
    Participant

    Such great news! She’ll be in my thoughts.

Viewing 15 posts - 1 through 15 (of 40 total)
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation