To remove my port or not?

[napa]

Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for you who have or have had a port, did you have it removed, why, and how long did you have it in place? My port bothers me some, not a major bother, I ask healthcare professionals how long a port can stay in and receive numerous different answers usually "years" is the answer. Thank you.

[gardening-girl]

napa, I've had two ports. The first one in 1997, and the second one in 2003, after the first one became clogged. When I got the second port I asked for it to be placed on my right side so that the shoulder strap of my car seat belt wouldn't bother it. I still use my 2003 port. I love it! It has been through so many treatments with me. Infusion nurses don't like my port very much because it doesn't have a rim and doesn't have a blood return, but I love it!

As an aside, soon after my port installation in 1997 I was drafted onto a pick-up basketball team and needed to find a way to protect my still-sensitive port site. I found that one of my kid's soccer shin guards taped to my chest worked reasonably well. 😩 Since I shoot a basketball with my right hand, it's good that the 1997 port along with the shin guard were on my left side!

So, in answer to your question. I had one port removed because it quit working and have had a second port for 19 years.

[napa in reply to gardening-girl]

Thanks Gardening-girl, happy to hear your port is doing well and enjoyed your story. Your input helps my decision making process.

[ViPOR]

Napa, I have had my original port for the past 11 years. It has been a part of my life through 7 treatments in the past 11 years (including 2 CAR T trials and 2 other phase 1 clinical trials). I do get it flushed every 5 weeks to keep it open and working good. It has kept all my veins in great shape and I am now age 74. I am presently in a 19 month CR from a VIPOR trial in the US at NIH for my Follicular NHL that turned into a more aggressive large B cell NHL after my CAR T in 2019. My oncologist said I could keep my port if it is not giving me any problems. I really love the port.

[GLB55]

Hi NapaOne thing they advise on keeping a port is that you have it flushed regularly (I believe every 4-6 weeks) to keep it from clotting. Consider port maintenance when making your decision. After my treatments I continued to have monthly blood draws but when those went to 3 months and then 6 months I was still having to go in monthly for a port flush. I decided to have mine removed when I reached the 6 month interval on bloodwork and everything was looking good. Luckily, or thankfully, 6 years later I've not needed one. Ask your Dr about port maintenance. It's no big deal, the hardest part is showing up. Based on all circumstances only you will know what's right for you.Best of luck on your journey.

GB

[Paul36]

Hi Sorry I can't be of help directly. For your ref it looks as if different hospitals (in different countries) take different approaches to treatment based on individual patient profiles and consultant preference. After a CLL diagnosis in late 2019 I began six months of chemo with Bendamustine and Rituximab, consisting of monthly infusions with just catheters rather than a port. No major problems or side effects, and two years on I'm still in remission with regular check ups.

Hope you stay fit and well, whatever the treatment regimen.

[Big_Dee]

Hello napa

Interesting question. I had B+R and choose not to have a port. I am still a little indecisive over as to have one or not, should I need additional CLL treatment. I did not have port due possible infection and cleaning requirements. After all the damage 6 rounds of B+R did to my arm veins I may have a change of heart, although not sure I would want that much damage close to my heart. In any case I did see many patients who retained their port for one or two months after treatment in case additional treatment for adverse effects was required. I don't recall anyone have ports long term except for maybe other illnesses. That doe not mean they don't, I just never talked to one with long term port use.

[napa in reply to Big_Dee]

Thank you.

[Nanno77]

I had a port at the beginning of my TX with obin, but had it removed as soon as possible when I started on ibrutinib. It was uncomfortable and would have needed cleaning on a regular basic. I can easily get another port if needed.

[napa in reply to Nanno77]

Thanks, Nanno77