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Intraperitoneal ports - failed twice before chemo

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Hello all,
My initial chemo treatment plan for high grade serous carcinoma (Stage IIIC) post surgery was via the IP port with Paxlitaxol and Cisplatin. I had the first IP port inserted during my surgery in February. Sadly it had to be removed after two weeks as the catheter moved and was hitting my diaphragm causing intense side and neck pain. A new IP port was inserted by an Interventional Radiologist on March 21st. Sadly a week later it too had to be removed as the catheter was causing excruciating abdominal pain and I could hardly walk. My body clearly does not like foreign objects like IP ports.

I'm curious if anyone has had similar experiences with the IP ports? How was your chemo plan adjusted? We will learn our revised 'non-IP port' chemo treatment plan in a few weeks but I'm a bit anxious in the meantime knowing the preferred plan of attack is no longer viable.

Thanks. There's always so much to learn.

Comments

  • Strongwoman
    Strongwoman Moderator
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    HI @Alwayslearning and welcome to the forum.  I have not had an IP port but had one in the chest that behaved in a similar manner. My body as well does not like foreign objects in it.  I have since had mine removed.  
    There are other options out there and am sure your team will discuss them with you.  Is a PICC line an option for receiving treatment for you?  Is there an oral medication that would do the same thing?  
    I can empathize with the anxiety piece of it. I think that at times when things don't go "as planned" we can often feel pretty deflated and that our bodies are 'giving up' even though we aren't emotionally/mentally or physically ourselves.  It is like we are fighting with our own bodies and wanting to 'will' them into doing or acting the way we want them to.  It is frustrating at times and can cause feelings of sadness.  Fortunately, we are all unique and not text books. I say it that way because how boring would the world be if we were all wired the same way?  Be patient and kind to yourself.  I am positive there are options out there and they will reveal themselves soon to you and your team.  You will then know what to do and these feelings will go away.
    I wish you the best on your journey and thank you for sharing your story with us.   <3
  • Hi @Strongwoman,
    I'm not sure a PICC line will be an option as the IP port is designed to deliver the chemo meds directly into the abdominal area. I will learn of options, if any, at my next appointment in mid April. I do appreciate the advice to be patient and kind to myself. It's hard at times to not be in control however I know I am surrounded by a great healthcare team so know I need to put some trust and faith in them. The waiting game becomes the issue sometimes.
    If anyone else out there has had any IP port challenges I'd still love to understand their journey.
    Thank you for providing this forum!!!
  • Strongwoman
    Strongwoman Moderator
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    Yes, that is what the IP port is meant to do.  I am curious if they will offer something instead if that is not an option and they can't find a work around for you. 
    Will be interesting to see what they do @Alwayslearning
    Being patient and kind to ourselves is one of those things that takes time.  Taking time to pause is good.  Breathe.  You got this....it will all come together soon.  <3
  • leanfries
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    @Alwayslearning
    Stage 3b high grade serous here! 
    My IP port also failed & I still have it in. Was inserted with my surg in Aug/23. When it went to be accessed for treatment, it was rocking & rolling & there was a bit of swearing from the nurses. Thought they had it, chemo leaked all over me. Went home in a hospital gown with my clothes in a biohazard bag. 
    Anyhoo, new treatment was bevacizumab maintenance chemo every 3 weeks at CancerCare. Keep at it until at least Aug of this year. I have no side effects from it tho there are some silent ones. It’s a short treatment time to receive it. There’s always something up their sleeves. Don’t fret! Keep thinking positive & hugs to you. 🩵

    Leanne
  • Strongwoman
    Strongwoman Moderator
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    OMG @leanfries I can't imagine them saying "here are your clothes that are now a biohazard".  Did they tell you what to do with them once you returned home?  How did they clean it off of you?  Probably was not funny at the time but when you look back now what does it look like for you?  
    Glad they had something else to offer you and that it is working for you.  Thank you for sharing your experience. 
  • leanfries
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    @Strongwoman
    Omg!! It was so funny! You have to picture me with my bald head, a hospital Johnny, luckily my sweatpants were not touched so had those on, 2 large bandages on each arm as I didn’t have my Power Port then, hospital bracelets, & no bra walking down the street at the busiest hospital complex in MB. No one batted an eye 😆
    I can’t remember now which drug it was but the nurses said it was lucky not the other one. While this all was going, someone had a reaction in another area so I was left to my own devices for awhile. I understand, I had a chemo reaction back on my 2nd treatment but I was LEAKING!! 😆😆😆
    They just washed me up with soap & water. Didn’t tell me what to do with my clothes but I just washed them later by themselves. We live 2 hours away & after all that, I was hungry so we stopped for a bite. Luckily, my hubby had a hoodie in the car so I changed in the car out of the gown & went for supper hairless & braless. 
    Since no IP chemo, I heard the next day from the oncology team that it would be the maintenance drug & I could have it at our own beautiful CC with all my favorite nurses. 
    I’m possibly facing a recurrence already. Was just done reg chemo in Dec. I am having lower pelvic crampiness at times so waiting on CT in a few weeks, my CA125 is slowly climbing. Until then & a new plan, life goes on. Think positive & enjoy things. 🌻
  • Strongwoman
    Strongwoman Moderator
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    OMG that would have been both a sight and an experience. I am glad you can look back at it and laugh about it.  That is awesome @leanfries I am sorry to hear about the CA125 climbing and the recurrence.  It is hard when we hear those words.  I will look forward to hearing what your new plan is.  I know you will choose what is best for you and what you would like to do.  In the meantime, you are right.....Enjoy what we can!!  <3
  • @leanfries you have certainly had a journey!
    Thank you for sharing. I hope they get you back on track with a new plan. Wishing you nothing but success. As you said, they always have something up their sleeves.