Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Feb 22, 2018, 10:07 AM
Barb Barb is offline
Member
 
Join Date: Jan 2018
Location: Columbus, Ohio
Posts: 28
Port or PICC

I am at the place where I need to make a decision about a port or PICC line. I am actually halfway through my first round of decitabine (Dacogen). The nurses doing my chemo are talking to my medical team about getting this done while my platelets aredecent (80 at last count).

I am curious about other's preferences. I am leaning towards a port as it is less work for me, even though it is more invasive to put in. I understand it can stay in longer also.
__________________
Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
Reply With Quote
  #2  
Old Thu Feb 22, 2018, 10:45 AM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Barb,

I have had both, and found PICC lines uncomfortable and inconvenient due to the placement, and I could always feel it there. The port is generally more comfortable and placed in a way so that it does not interfere with most activities, from the basics of taking a shower, sleeping, giving a hug, to exercising and cooking.

My general preference would be the port. I had one installed with only 25k platelets. It bled a little, but not enough to worry me or the doctors.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
Reply With Quote
  #3  
Old Thu Feb 22, 2018, 11:22 AM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 470
Hi Barb,
My husband has had both also. The PICC line requires constant maintenance and is at great risk for infection - and also very inconvenient. Don had his port in for many years and it never caused any problems whatsoever.
Best wishes,
Sally
Reply With Quote
  #4  
Old Thu Feb 22, 2018, 02:18 PM
Grateful1 Grateful1 is offline
Member
 
Join Date: Jun 2014
Location: USA
Posts: 6
Hi Barb,

When I was first diagnosed with MDS (5q-), accessing my very small veins for the many blood tests and subsequent RBC transfusions was very difficult and painful. Early on it was recommended that I consider getting a port and it really made these procedures so much easier. I’ve had it for a little over ten years now with no problems.
Reply With Quote
  #5  
Old Thu Feb 22, 2018, 09:11 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
I'm glad you raised this topic, Barb, because I'm considering this too. Being a fairly slim person, my veins tend to "roll" and are now also getting rather scarred (causing frequent blow-outs) after more than 6 years of infusions and blood tests.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #6  
Old Fri Feb 23, 2018, 12:30 AM
Barb Barb is offline
Member
 
Join Date: Jan 2018
Location: Columbus, Ohio
Posts: 28
Thank you all for the input. It seems unanimous that a port is preferred by more people. I'm going to really push for them to put one in before my next round of chemo. They wanted me to leave my IV in for up to 3 days but I found it to be problematic and limiting to me so I have been having them take it out daily. Two more sticks then I'll be done for 18 days, other than any needed transfusions.
__________________
Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
Reply With Quote
  #7  
Old Sat Feb 24, 2018, 06:54 AM
lisa3112 lisa3112 is offline
Member
 
Join Date: Jun 2016
Location: Melbourne
Posts: 105
I actually preferred a PICC. I had a Hickman line in, I hated the dressing changes, it really hurt my skin.. If you are possibly having a stem cell transplant the port is better, mainly because its quicker access to bigger veins.
PICCs can also block off. Ultimately both do a way better job then little old IV cannulas. Good luck!
__________________
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Need Help Missy D. AA 13 Sat Dec 6, 2014 02:34 AM
Clothes for port access Marlene General Health Issues 2 Wed Jan 2, 2013 04:04 PM
Quick question about port Al's Wife Questions and Answers 11 Fri Sep 21, 2012 03:42 PM
Getting ready for 2nd round vidaza, getting port replaced Anne Yeomans MDS 0 Fri Jan 27, 2012 08:51 AM
Port problem kgtuck General Health Issues 0 Mon Oct 3, 2011 03:19 PM


All times are GMT -4. The time now is 09:41 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org