CSN Login
Members Online: 2

You are here

Lots of storms but no port

po18guy
Posts: 955
Joined: Nov 2011

Thursday the week before last, I had my second port pulled, and no replacement was placed. I am no longer in ECP, and the port was giving signs that it was at the end of its useful life. So, out it came. As well, my recent medications have all been oral pills. Sadly, I didn't get to keep this port for my collection Wink For the first time in ten years, there is no lump in my chest. I'll get used to it, but it does leave one feeling like a battle-weary soldier when the armistice is called. What to do now? I guess I'll just go on living life. BTW, my first port is mounted in a shadow box, along with the wallet card bearing Dr. Hickman's name. DW has barred me from placing the box in the dining room. Frown

ShadyGuy's picture
ShadyGuy
Posts: 355
Joined: Jan 2017

Hopefully you will never need another one. I only had mine 7 mos. but I was so glad to get rid of it!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3116
Joined: May 2012

Remarkable, Po, that a guy with two relapses and 19 chemo drugs has no port. You know (you have said it many times) that you are in the fight for the rest of your life, which I say on New Year's Eve, I hope is a very long one.

My port of about seven months left a significant hollowed area where it had been.  You all know that I, a submarine sailor,  jokingly refer to it as my "port hole."  But, ironically enough, there are no port holes on submarines....

It seems to me the Board has been very quiet the last month or so, seasonal I guess. Usually little posting means people are not getting back bad scan reports.  I hope that is the case for all,

max

po18guy
Posts: 955
Joined: Nov 2011

Actually, just started my 20th drug in mid-November. Fortunately, the last three or so have been in pill form. Since I have stopped ECP treatment and the port was ECP specific, and was circling the drain, time for it to go. They said I could not have it because it was a bio-hazard. With a shocked expression, I asked them, "Well then, what is it doing in my chest???!!! No coherent answer to that...

lindary's picture
lindary
Posts: 634
Joined: Mar 2015

Congrats on getting your port removed. It's been a few months for me but there are time I feel the area where it was, expecting it to be there. Can't believe they would call it a bio-hazard when it has been in your body. 

 

po18guy
Posts: 955
Joined: Nov 2011

Yeah, ain't that a hoot!

Rocquie's picture
Rocquie
Posts: 826
Joined: Mar 2013

Po18guy, I'm sure you know that your port was not a biohazard while in your body. It becomes biohazardous once OUT of your body. So is your blood or anything else that comes out of your body. Needles that have punctured your skin become biohazardous. I'm sure you have noticed those red biohazard boxes nurses put syringes into once used. 

My surgeon did let me keep my port, but first it was cleaned and placed in a zippered plastic bag, clearly marked biohazard. 

Cheers,

Rocquie

PS--congratulations on being port free!

lindary's picture
lindary
Posts: 634
Joined: Mar 2015

You made a good point. I hadn't thought of it that way.

 

ShadyGuy's picture
ShadyGuy
Posts: 355
Joined: Jan 2017

are considered biohazard.

po18guy
Posts: 955
Joined: Nov 2011

We learned this back when AIDS was raging and knowledge was far less than it is today. In truth, we are all walking biohazards. But then again, some in the medical industry are simply protocol-driven if not exactly paranoid. In a very strange paradox, when I was hospitalized post-transplant, they had me exercise-walking past open rooms where the strobe light was killing C-Diff! And there I was, with zero immune system. Really? 

PeprmntPat55's picture
PeprmntPat55
Posts: 43
Joined: Aug 2016

On losing the port!  I am looking forward to that myself, hopefully in the next 6 months or so since my last maintenance treatment is coming up next week on Jan 16th. I've had it now for over two years.  It will be a weird kind of ceremony, I think and I hadn't thought of asking my surgeon to let me keep it but now I think I will! Hoping for the best for you po18guy!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3116
Joined: May 2012

It is good hearing from you again, Peppermint, and that all is going pretty well,

max

po18guy
Posts: 955
Joined: Nov 2011

I am was treated in Seattle, which is the world's largest biohazard. Needles everywhere. anyway, the second port was of no lasting significance, inasmuch as it was placed solely for ECP and I am done with that. Actually, i called SCCA yesterday and was told that I have no appointments until June. What??? What do I do now?!?! Then it hit me: live my life! Oh yeah.... I think I can get used to that.

It is a bit stange, after ten years,  to run my hand across my chest and find no lump. I'll get used to that, too.

yesyes2
Posts: 586
Joined: Jul 2009

Just wanted to congratulate you on both the port removal and not having an appointment at SCCA until June.  Is this the longest you have gone with out having an appointment?

I still have my port from when it was placed in 2009.  Because of the PV it's used at least every 2 to 3 weeks.  I would feel lost without it as to me it's like an old friend, always there when I need it.  I was told it's purple in color and when it's eventually removed I'd for sure like to keep it. There was a women on here years ago who had her port made into a necklase.  Strange, but maybe fashion forward.

Po, enjoy life, I know you will.

po18guy
Posts: 955
Joined: Nov 2011

Even those few months in which we stared the stuff down, wating for it to grow some tumors close enough to the surface for biopsy, I still had to go in every 4-6 weeks for a port flush. Now, I've been cut loose from it, so to speak. I never saw the vortex, but  the Power Port is purple, and triangular/heart-shaped. Kinda like a purple heart medal for injury in combat. Ah, but purple hearts are awarded to those who surivive - so I guess it's entirely appripriate.

PV you say? As in Polycythemia Vera? Maybe old news for you, but have you tried Ruxolitinib (Jakafi)? For some odd reason, even though it is aimed at polycythemia vera and myelofibrosis, it is very effective against my chronic Graft-versus-Host-Disease, the first drug that has show real effectiveness. I was tested for MF, but was negative, and that is good. The MDS was enough of a background concern, but it also seems to be gone.

yesyes2
Posts: 586
Joined: Jul 2009

Polycythemis Vera.  I was actually considering Ruxolitnib but it is now off the table for me.  There is a lymphoma connection and is not advised for people with the type of B cell NHL I had.  I have yet to see the research but the studies are very new.  In October I asked my specialist if there was a lymphoma connection, as I heard this at a conference I attended in SF in September.  She said no, let me see if something new has come in, swung around to her computer terminal.  A few minutes later she said that yes there was a finding and for me this drug was not advised.  I see her the end of January and will again visit the subject.

I did just recently read that Ruxolitnib was being used for GVHD in trials.  I'm happy that Ruxo was of help for you.  One of the side effects of PV is sever itching.  I believe Ruxo was helpful along with reducing spleen size.  currently I am refusing to take Hydro and am only doing blood letting.

po18guy
Posts: 955
Joined: Nov 2011

I see that the hydroxyurea has all of the typical old-time chemotherapy side effects. As to the Ruxolitinib, I would not give up on it just yet. Many study cohorts are small and may not be indicative of general experience. More studies will probably have to be conducted. I know that transplant is the nuclear option, but is that on the back burner?

yesyes2
Posts: 586
Joined: Jul 2009

to say no to the hydoxyurea, too many side effects at this time.  What I really wanted to use was Pegasas Interferon which seems to be were treatment is going.  It's the only treatment that can put this disease into remission.  And has the potential for some people to be cured of the Jak2 defect.  However I have a lot of auto immune diseases/issues and I have been unsuccesful in finding a MPN Specialist of a Hemotologist who will give me the drug.  If or when my bone marrow becomes fiberous I could be a candidate for a bone marrow transplant if I were younger.  I'm a few years over the cut off age.  It appears that research is directing that the BMTs should be done prior to waiting until this disease progresses  to MF or AML as the mortality rate is very high.  Now some young patients are going to BMT fairly rapidly.

 

 

po18guy
Posts: 955
Joined: Nov 2011

It keeps moving up. It "was" 60, but I had my transplant at 63, and mine was a moderate-intensity rather than a mini. Lacking serious co-morbidities, I don't think they are out of the question even at 70 or so. 

yesyes2
Posts: 586
Joined: Jul 2009

Seems with my last few birthdays I'm now too old.  Also the cut off for MF and PV patients is a little lower than for other BMT.  Something I think to do with the problems with 3 blood lines.  Not too sure at this point.  I remember when the age was below 60 on them.

 

Rexmax's picture
Rexmax
Posts: 46
Joined: Apr 2017

I'm still here love reading all your posts. Been doing some traveling seeing family past couple of months. So far 9 Rituxan Maintenance done 3 to go, after that I don't know the plan have to wait and see. On my last treatment 5 days ago couldn't use my port it is pretty sore, red looks bruised Dr. put me on Keflex anyone else have this issue? I will be happy to have it remove. Take care all.....Lillian 

po18guy
Posts: 955
Joined: Nov 2011

Never had a single problem. Sounds like some inflammation or possibly a cutaneous or sub-cutaneous infection at the access point. Have they considered an untrasound to make sure the catheter is firmly attached to the port? Even a small amount of leakage could easily cause what you are experiencing. Watch it carefully and check for fevers.

Rexmax's picture
Rexmax
Posts: 46
Joined: Apr 2017

Guess I need lessons on how to add/change photo.....lol

Rexmax's picture
Rexmax
Posts: 46
Joined: Apr 2017

Guess I need lessons on how to add/change photo.....lol

Subscribe to Comments for "Lots of storms but no port"