One more update on Vince and a question...

Update: Since ending tx on Aug 31, was back at work full time by Oct 1st, on his first int'l business trip in early December to Asia, headed to Europe today. After being out of action since April, he has a lot of catching up to do. He continues to amaze me and his docs how quickly he's returned to a life we recognize, the PET/sarcoidosis episode not withstanding. Only tough issue he's still dealing with is dry mouth, which when you consider where he started, we will take it!

Question: He still has his port in. At what point do they normally take the port out?Thanks Ana

P.S. His hair is back, same beautiful silver hair as before. That said, get a call from his first trip out saying his hair is growing crazy. I ask where, he reports eyebrows (ok, get that) and left ear. Left ear?? I suppose that's what personal trimmers are made for, but of all the weird things!

A port can stay there for many months after it is not needed. Just make sure it gets flushed monthly. I had my port for a year after I was finished with my treatments. Since it needs to be surgically removed, I was in no rush to have the removal procedure done.

It sounds like your husband is doing very well with his recovery! Being able to work full time and do international travel is quite a significant improvement in only a few weeks post rads.

Best wishes with continued improvements with his recovery

They usually remove it after treatment when it's no longer being used, and when a patient is finished treatments, if eating, drinking by mouth solely for at least two weeks, is maintaining their weight, all which vary with everyone. I have my 2nd G-tube since 12/10, so it's 2 yrs., and reason I didn't have it removed yet was due to my recurrences, and didn't want to have it removed like the first one, and then need again a month later like I did. Keep it clean with soap and water, after showering I clean it with a gauze with some peroxide around the base plate, and if needed, I sometimes put OTC Bactrim ointment on it or if needed, prescribed clotromizole ointment for any fungal infection, and as ChristineB mentioned, to keep flushing it. I do not cover my peg tube nor do I place any gauze between the plate and stomach not wanting to harbor any moisture. Mine is the balloon type peg tube, so it's just yanked out in the gastro doctors office.

Thanks for the feedback folks. Paul, I think you have PEG (which my husband didn't have) and port mixed up...:) Christine, the port needs monthly flushing? Glad you mentioned this, because this is the first we've heard of that...will definately check into that. I see where yours was left in for a year post-tx. It's my understanding that reoccurances are not limited to, but most likely to occur (if they do) in the first year post-tx, that makes sense. We were just curious as the subject had not come up with any of V's docs yet. Thank you for the best wishes, we feel incredibly lucky how well Vince has come through this so far, Ana

Thanks. I misread lol, and was talking about the peg, but I have the same port for 3 years, which does need monthly flushing with a flush solution, like ChristineB mentioned, which checks for blockage, and blood return. Once finished with treatment, and there is no further treatment, doctors like to have it removed and has its risks for infection. I don't think they consider chance of recurrences as reason for keeping a port unless there is a suspicion or indication there is, but I did and keep mine for this, and other reasons. Lets just say the percentages are in his favor of no recurrence.

Paul,
I had to have my port removed early, but thankfully after chemo was done. I got a MRSA infection in it and let me tell you, it can be serious. Luckily, the skilled eyes of a nurse looked at my port site and did not like the looks of it. He said it looked "angry"...all red and puffy. They had to yank it out with minor surgery that day. Luckily, the MRSA had not spread to my blood and was localized to the tip of the catheter, but it's still a huge deal. I had to take heavy duty abx called vancomycin twice daily.

Every time a health care provider sees me, she/he has to don a gown and gloves. This goes on for months while they culture the inside of your nose to see if the infection is gone. One of my very best friends just had a baby after 7 years of infertility failures and I cannot got meet her due to the MRSA (she's also a premie).

In other words, you don't want to get MRSA, so IMO get the port pulled as soon as you don't need it anymore. It is a great way for a major infection to start.

Always looking out for my OCF friends,
Kerri

Hi Ana,
We are about 15 months out of tx and Kev still has his port. He wants to leave it in until the 2 year mark as he did NOT enjoy having it put in. He does have it flushed about every 6 weeks though. It's a quick office visit.
Kathy

Thanks. Some do get infections. Usually MRSA is hospital (healthcare) acquired, and some community based. I had MRSA, staph, sepsis, septic shock, c-diff, invasive candiasis, and many others, but not from the port or feeding tube, and was in isolation for 6 months in the hospital with gown, and gloves required for anyone entering, so I know how you feel. They left mine in for TPN feedings, and was in no condition for any surgery or even completing treatment back then, and used the port less than a month ago for chemo treatment, and a blood transfusion. Basically, I have been having some kind of treatment, surgery, transfusion or in recovery for three continuous years, so I doubt it's coming out anytime soon, until after a clean scan or two or unless I get an infection lol.