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MDS Myelodysplastic syndromes

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Old Thu Feb 22, 2018, 09:07 AM
Barb Barb is offline
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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.
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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Old Thu Feb 22, 2018, 09:45 AM
DanL DanL is offline
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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.
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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.
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Old Thu Feb 22, 2018, 10:22 AM
Sally C Sally C is offline
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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
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Old Thu Feb 22, 2018, 01:18 PM
Grateful1 Grateful1 is offline
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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.
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Old Thu Feb 22, 2018, 08:11 PM
Cheryl C Cheryl C is offline
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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.
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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.
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Old Thu Feb 22, 2018, 11:30 PM
Barb Barb is offline
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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.
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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Old Sat Feb 24, 2018, 05:54 AM
lisa3112 lisa3112 is offline
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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!
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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!
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