Skip to content

Riding the roller coaster

Discussion Board Forums Introductions! Riding the roller coaster

Viewing 15 posts - 61 through 75 (of 90 total)
  • Author
    Posts
  • #94407
    middlesister1
    Moderator

    Gail,
    I hope tomorrow is a better day, but if not, thats ok and we’re here for you. Please vent or contact us directly (click on nanes to email) privately) over the years, the folks here supported me through hard times
    Love and hugs
    Catherine

    #94406
    darla
    Participant

    Gail,

    Keep venting all you want and need to. We do all understand and it does help to just get it all out. I am so sorry that you and your family are going through all of this, but know that we are here to listen and to help and support you all in any way that we can. You and your family are in my thoughts and prayers. I too hope that tomorrow will be a better day for all of you.

    Hugs,
    Darla

    #94405
    momof3
    Participant

    Hi everyone,

    Luckily they were able to insert a filter last week, and we were able to start blood thinners once the platelets started to come up. He’s home from the hospital (with a hospital bed since he was too weak to get up the stairs to the bedroom), and today was able to get an 80% dose of chemo since his platelets had gotten all the way up to 128,000.

    Last night I had a call from the oncologist we were supposed to meet with last week about clinical trials. Unfortunately we missed the appointment since he was in the hospital, but she called me at 6pm on a Sunday evening to let me know she had reviewed the Foundation One report and his file. Bottom line is that the cancer is way too advanced for them to be able to offer anything meaningful aside from the chemo. Even though the 2 mets in his brain were resolved, the spots on his spine, femur, and pelvic bone all showed increased activity and while I haven’t seen the CAT scan results from this latest hospitalization I suspect the spot on the lung has grown as well (they mentioned a “lung diagnosis” in the discharge paperwork).

    It’s so difficult to watch someone who wants to fight so badly get beat down by the awful disease. He deserves to be an old man, my kids deserve a father, and there just doesn’t seem to be any hope except to try and get small bits of additional time.

    Sorry for venting like this, but I know you all understand. Hopefully tomorrow will feel like a better day.

    Gail

    #94404
    spokanemom
    Participant

    Gail,
    I am so sorry your husband is back in the hospital. My husband developed clots in his arms after having surgery in December, and it definitely complicated his treatment. He also randomly had a clot in his calf 2 years ago and they suspect that was actually the first indication of his cancer since, as Marion said, gastric cancers tend to throw clots.

    I hope that oncology develops a plan for your husband soon. Remember the positive results you had from the MRI and PET scan! You are moving in the right direction and unfortunately there are these horrible downs to go along with the ups, but I will continue to pray that you are still heading in the right direction.
    Best Wishes,
    Victoria

    #94403
    momof3
    Participant

    Hi Marion,
    They were only able to give him 1/2 dose of lovenox today…without a blood thinner they don’t want him out of bed since there is a significant risk of a clot going to his lung. The right leg was clotted in all the major veins from the thigh down.
    A transfusion is a possibility but they are still in a debate over whether the decrease is related to chemo or the heparin. Hopefully they will come up in their own in the next 24 hours.
    I will meet with his oncologist tomorrow morning so we can discuss the options…my husband brought up the idea of hospice today as he’s not sure what value the chemo can bring if he keeps having these other issues that get in the way.
    We’re both so discouraged since thechemo was making progress but we can’t steer clear of the roadblocks.
    Best,
    Gaik

    #94402
    marions
    Moderator

    momof3…..gastric cancers have a tendency to throw clots, hence I am not sure this will hinder from further treatments.
    The bigger issue are the platelets? Has a blood transfusion been discussed?

    Thinking of you and sending tons of good wishes your way.

    Hugs
    Marion

    #94401
    darla
    Participant

    Gail,

    Sorry to hear of this turn of events. Yes, it is a roller coaster ride. The ride of your life and one none of us want to be on. Thinking of you and hoping that a new plan can be put in place to get him back on the uphill slope. Take care and update us as you can.

    Hugs,
    Darla

    #94400
    momof3
    Participant

    Hi Victoria,
    Thanks for your message. Unfortunately we are now in the hospital with DVT in both legs. They had started him on heparin but his platelets are down to 42k so they stopped it and are waiting for a plan from oncology. I’m definitely worried that this is the start of a big downhill slope.
    Gail

    #94399
    spokanemom
    Participant

    Great news from the MRI and PET!

    Children have a way of forcing us to lead as “normal” a life as possible because they are so active. I am glad that you have a support network around you and that you are open to asking for help. It helped me to have a single close friend kind of manage all the other helpers for me. I would tell her what I needed, and she would update the meal sharing website or track down someone who said they wanted to help, or organize carpooling for my kids. Sometimes I couldn’t motivate myself to do anything other than tell her what I needed, but that was all I needed to do and she took care of the rest!

    Best Wishes,
    Victoria

    #94398
    middlesister1
    Moderator

    Gail,

    The month is understandable with how much you have going on in you family. I’m hoping that May 4 brings a plan and hope for moving forward.

    Best wishes to you and the family,
    Catherine

    #94397
    momof3
    Participant

    It’s hard to believe its been a month since my last post. We ended up with a stent replacement two weeks ago – he spiked a fever of 102.5 but luckily it went back to normal once the new metal stent was installed and the duct was flushed.

    We were able to resume chemo this morning and so far the results have been pretty good – the two mets that were found in his brain 6 weeks ago have been resolved (confirmed by MRI). The repeat PET scan showed reduction in either size or activity of almost all of the areas to which the cancer has spread, except for the bones.

    The biggest worry is that with the degree of spread that has already taken place, that the chemo will not be able to make enough headway against the main tumors to give us a fighting chance. I’m really trying to settle into a day to day existence but with twins starting middle school in the fall and a 7 year old, it’s hard to not think toward the future.

    We’re headed to Penn to see Dr Damjanov on May 4 to find out about clinical trial options based on the Foundation One testing.

    Thanks as always for your thoughts and support.

    #94394
    positivity
    Participant

    Hello,
    My mom has her second set of plastic stents and it’s always nerve wrecking to wait for the conclusion of the ERCP. Metal stents are permanent and can also migrate, and may be difficult or even possible to take out. Another issue is if the tumor grows stent placement could be impossible and it may only be able to be taken out. I dislike the fact that plastic stents must be replaced every 3 months to prevent infection, but hope to extend the time by about another month. I will check more into metal stents in future visits. Keep us informed. Thank you.

    #94393
    positivity
    Participant

    Hello,

    #94392
    marions
    Moderator

    mom…..that’s what I meant by ” things not moving along”. Good news.

    There are advantages to the metal vs. plastic stent. For one, it’s expandable, hence it lasts significantly longer thereby eliminating the constant stent changes. It should last at least 9 months or more. Secondly, should it clog it can be cleaned out and/or a plastic stent can be placed into the metal.

    Hugs
    Marion

    #94391
    momof3
    Participant

    Thanks Marion, luckily it was nothing more than too much constipation. They kept him overnight in the hospital and we got to meet with his GI doctor today…good news is that the plastic stent is still working but it will likely need replacement with a metal one in the next few months. Has anyone been through this recently or have any advice? He’s pretty nervous about the prospect.
    Thanks
    Gail

Viewing 15 posts - 61 through 75 (of 90 total)
  • You must be logged in to reply to this topic.
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation
Scroll To Top