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Rituxan Maintenance without a Port?

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

I had my 2nd Rituxan maintenance, blood work, and a doctor visit yesterday. My blood is back to normal--yay. It was slow coming up, but got there. All lymphoma markers are normal--yay!

My doctor said we need to think about getting my port out. He said that even though it is being flushed monthly, there is still a chance of developing a blood clot at the site. The nurse did have a little difficulty getting it flowing yesterday, and had to flush is several times. (It is also my 2nd port--my first one developed a staph infection).

I certainly won't be sad to see it go. It worries me. And I have been told by more than one person, for years, that I have very good veins. It makes me feel good to think that the doctor thinks I won't need it. Smile

The question I have, and didn't think to ask the doctor, is about the length of time it takes for an infusion. Yesterday, the nurse cranked up the flow rate, a little at a time, until that bag was dripping pretty fast. I took a big bag of Rituxan in only 3 hours. I can't imagine it flowing into a vein that quickly.

Anyone have experience with this?

Thanks,

Rocquie

 

 

 

Shoopy
Posts: 210
Joined: Jul 2013

All I can tell you is that my oconologist seem to give me a choice on a port installation before scheduling my first treatment.  I went with the port for convenience but probably wouldn't hesitate to take in the vein if it was near the end of treatment.  Mine port has been in since late May with no problems.  Hope it helps.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

Roc,

I would KEEP the port. Although rituxan is not very caustic, the infusion is usually a very long one (my rituxan bag used to take 3 hours).

I would rather get a flush occasionally than get a cath put in each time.  Just my two pennies' worth.

I hope your decision is best for you...

max

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Rocquie,

I've had my port in for 3 years and have never had one problem with it. I finished my Rituxan maint in Feb 2013 and my Onc wants me to keep mine in for at least 2 more years. The port is suppose to be good for 5 years, so as long as I continue to not have a problem with it I will keep mine in. It makes it so easy for blood draws. We all react different with our treatments and ports, so I guess this will have to be a choice for you to make. My R treatments usually lasted for 3 1/2 hours and the once a month port flush just isn't a big deal for me. Let us know what you decide to do. Best wishes...Sue

(FNHL-grd2-stg3-typA-Dx 6/10) age 62

NANCYL1
Posts: 225
Joined: Jun 2012

Roquie:

In 2012, I started Rituxan, but not as maintenance.  I had one infusion four weeks in a row in May.  Same thing last November and this year in June.  In six months I will have the final "set."  Things have been going well.  At the end of this year,  I will find out what is next.  I have B Cell Lymphoma, non-Hodgkins.   I don't have a Port. 

Nancy

NANCYL1
Posts: 225
Joined: Jun 2012

Roquie:

In 2012, I started Rituxan, but not as maintenance.  I had one infusion four weeks in a row in May.  Same thing last November and this year in June.  In six months I will have the final "set."  Things have been going well.  At the end of this year,  I will find out what is next.  I have B Cell Lymphoma, non-Hodgkins.   I don't have a Port. 

Nancy

NANCYL1
Posts: 225
Joined: Jun 2012

Roquie:

In 2012, I started Rituxan, but not as maintenance.  I had one infusion four weeks in a row in May.  Same thing last November and this year in June.  In six months I will have the final "set."  Things have been going well.  At the end of this year,  I will find out what is next.  I have B Cell Lymphoma, non-Hodgkins.   I don't have a Port. 

Nancy

illead's picture
illead
Posts: 489
Joined: Aug 2012

When he was dxd, his blood count was so low and he was in such poor shape that his doctor was afraid he wouldn't survive putting one in.  For the 2 weeks prior to his chemo and well into his regime he had hydration infusions everyday at first,  EPO shots every week and bloodwork twice a week.   He still does not have a port and has about 7 mos left of 2 yrs rit.  He has never had a problem, however he could be the poster boy for a human pin cushion.  The last time he had his infusion, the nurse said " I know that you requested not to have a port"......WHAT!!!!!  His first doctor is long gone however and he has just, the last 2 times, had a permanent doctor after losing the second one also then 2 temporaries, so I think the port business got lost in the shuffle and we didn't think to ask about it after he was better. In hind sight, that was stupid.  At any rate, he does not have a problem with rituxan now and it takes about 3 1/2 hours.  I think you will be fine.  You can ask the nurses to reassure you about the length of time.  Becky

NANCYL1
Posts: 225
Joined: Jun 2012

I finish my 2 years of Rituxan around Nov./Dec.  Seems to be working well.  4 doctors?  That would be hard to deal with, to say the least!!!!  I still have the same Onc. and like him.   Nobody offered me a port, but after reading some port stories, maybe we are better off without them.  I spend about 3 hours or so when I get the Rituxan infusion, and fall asleep from the Benedryl.  I see others reading, chatting, using laptops and I just snooze.

Nancy

illead's picture
illead
Posts: 489
Joined: Aug 2012

.......we have some stories

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Max, I think that Huber needle being poked into my chest is much more painful than a thin needle going into an arm vein. Smile Sue, no blood draws, via port, are done at my oncologist's office. The only thing the port has been used for is chemo (and now Rituxan), blood transfusions, and once I had home-health antibiotics through my port.  All along, I've been stuck in the arm veins for blood draws. I also have gotten peripheral IV's for all CT and PET scans. Shoopy, Nancy, and Becky--thank you so much for the feedback. I really appreciate it.

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

Rocquie,

The value of these Boards is a multiplicity of viewpoints and experiences.  You have a lot of "port" information now !  And, of course, it is out there for all newcomers to consider as well.

I never had any pain with the port needle insertion, but the infusion center always offered to spray the site thoroughly with some sort of numbing agent (and I had them use it).  Below the ball of the port (the visible section) is a larger disk, which is stiched into adjacent muscle, to prevent the port from moving about. Any pain or sensation would have to be that muscle being pushed on a bit as the needle is inserted. My next-door neighbor had his port in for three years, and only got it flused during his six month follow-ups, although they wanted him to come in more often.

After my first one or two bags, my rituxan took about three hours, perhaps a little less. Once they confirmed that I had no allergic reactions at all, they were able to "pour it in."  I am not certain, but since it was always one of my first meds, it seemed to make me feel "cold" for a while, but nothing significant. 

As I mentioned, rituxan is reportedly pretty mild on the veins, and therefore is not a drug that would highly suggest a port.  My infusion center REQUIRED a port for any chemo drug that is a "vesicant" (blister agent), like the Vinblastine and Adriamycin in abvd (and the Vincristine in "chop"), so I really had no choice in the matter.   These blister agents rapidly kill any tissue that they leak into, and the residue ordinarily has to be immediatley cut out surgically, so there is a lot of concern for the veins also.  I have read here where others did NOT use a port for abvd, so their infusion centers must have different application protocols.   May rituxan do the trick for you, however it is administered !

max

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Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

I agree with you about the value of these boards. This site and the people who participate here have been very helpful to me. I'm glad I found it.

I am thankful to the replies I have received about whether to have my port removed and take the Rituxan through my vein. Like you, my infusion center required the port for my R-CHOP.

I have decided to go with my doctor's recommendation to have it removed for several reasons.

  • It is ugly and I want my chest back. (It shows in some of my cute summer tops).
  • I had a horrible staph infection in my first port and was hospitalized for 11 days.
  • It is a reminder of a horrible disease.
  • It is a foreign object in my body which could develop a blood clot.
  • I have good veins in my arms.
  • My doctor thinks I won't need it again. Smile
  • My 3 year old granddaughter always manages to plop her head right on it, causing pain. And a loving embrace from my beautiful granddaughter should not hurt!

Thanks, Max, as always for your words of wisdom.

Rocquie

 

 

Mary N.
Posts: 79
Joined: Jun 2013

I enjoy reading all the posts and there is such a difference in how we feel.  It seems that for rituxan it is not as important to have as for some other chemo.  I personally have to get monthly chemo Rituxan each month and then high dose MTX every four months.  I also have all the blood drawn if at the clinic or hospital through the port.  I have two holes so they can run a couple of IVs.  I am so glad that I have the port because I have little pain ( more like pressure) when they put in the needles and I had to have so much chemo at first that now just monthly is a breeze.  It takes me about 3 hours for my rituxan sometimes 3 1/2 hours.  It doesn't seem to make much difference from the comments whether or not it is in the veins.  Best of luck whatever you choose.  blessings.

girliefighter's picture
girliefighter
Posts: 198
Joined: Mar 2013

Rocquie,

Please let me know what you decide on this, as I too hate my port and it hurts like a mother for them to access it for chemo....I also only use mine for chemo .

I agree that it is an ugly reminder of an ugly chapter in my life, my oncologist won't take mine out however. I am still stuck with it for 2 more years, I can't run or do some of my regular workout stuff because it hurts too much when it get moved around.

I hope it all works out for you and keep me informed, I started rituxan maintenance in november and I will be on the 2 year countdown to removal

XXXOOO

Carie

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi girliefighter,

 

At one point in my journey, because I am a hard stick, I was advised to get the port.  A few months later, I began to experience a little pain when they accessed the port.  Then I felt pain when I slept on my tummy or side.  In time the pain got worst.  It turns out even though I was getting the port flushed regularly, it was infected.  First, I was admitted to try to clean it via an IV.  Then, it had to be removed.

Ignoring the pain may not be the way to go.  Just based on my experience.  Good luck to you.

 

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Rocquie,

Sorry for the late reply,

I also don't have a port and I'm currently on my last round of Rituxan. Today was my third infussion, one more to go and then I'm done yay!!! The only bad thing about not having a port is that your veins really do take a beating! My veins are in such bad state that it actually burns if the nurse puts the treatment too fast! She has to go really slow and not just for the Rituxan but for all my Prep medication. I would really think twice about getting it removed, just because we never know what's going to happen in the future. Good luck on whatever you decide, we're behind you 100% :D

Sincerely,

Liz

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hello Rocquie,

 

I have been on the Rituxin maintenance for about 3-4 years now.  While on the maintenance schedule, I have never had a port.  It takes me three hours.

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

Win,

I am glad to see you contribute here again. Your posts are always the best ! No one has the spirit to win the way you do.

While I am basically a "pro port" guy, I was told during treatment that lab blood draws are best done from the arm, NOT from the port. Some tests specifically, my doc told me, do not always give correct values when drawn from a port. I do not recall which ones, or the reason why it would make a difference, but it is another known limitation of some ports.

Keep winning !

max

Mary N.
Posts: 79
Joined: Jun 2013

They take my blood when I visit my oncologist and am going to have my chemo through the port.  This gets me all set for the infusion.  When I go into either the office or to another facility and they are just  drawing blood they always use my arms.  Most places do not have RN's and only an RN can access a port.  It takes a person with a lot less education to draw blood through the veins.  Even when I'm in the hospital and they come to get my blood drawn, when i say I want to use my port (it is all ready accessed) they have to have the RN do the tests.  I don't think I've ever heard of a port changing anything so the test would be altered at least my doc has never indicated that to me.

My port was a real bother to me for about the first 6 months and then I just seemed to get used to it.  I can sleep on the side of the port and it doesn't even bother me.  However, since I will be getting chemo monthly for the rest of my life, I really am glad that I have it in.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

Mary,

I looked it up, and it is the LDH values that can be off due to port draw. I have also read this online. LDH is a specialized test, usually in a metabolic profile, and it may be that the doc does not test yours, or your values may be good either way.

I never had any discomfort with a port, either sleeping, or with needle insertion, or anything. I gues I was lucky in that regard.

http://www.webmd.com/a-to-z-guides/lactic-acid-dehydrogenase-ldh

max

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

The discussion got me thinking about whether blood drawn from the port would be different from that of a vein. I did a little research and seems it can be. Blood from a vein has circulated through your heart and all over the body. Also, even though your nurse flushes your port with saline/heparin, it may not do a perfect job. Your port line may still contain drugs, saline, infection, uncirculated blood cells, or even blood clots.

I love conversations with you guys!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

The oncology group where I received treatment (28 MDs, and part of US Oncology, which is a network of about 1,400 MDs nationwide), about 4 years ago, discontinued ALL blood draws from ports.  All blood tests are now pulled from the arm (or hand, or wherever). Prior to that, all of my blood draws were via the port.  I never asked about the change, but will next week.  As I wrote above, there is documentation about port draws skewing specifically LDH values (causing, on occasion, false high readings). 

Both port and arm draws, of course, are "drawn from a vein," since chest ports are run directly, via a short cath, to the superior vena cava, the largest vein in the body.

Why the port would ever skew a few, rare values I don't know, but Rocquie's explanation makes sense and works for me.  I may ask around, since between my own doctor visits and carrying a friend to infusion lets me speak with different  Nurse Practitioners. 

The value of a port for blood draw and the value of a port for infusion of chemicals are, of course, two separate questions.  

I remain convinced that, in most cases, especially in long-term treatment, or with treatment with extremely toxic chemo drugs, the port is much to be preferred.  As noted above, some drugs clinically DEMAND a port; arm application is not allowed. Almost all clinics treat VESICANT drugs (blister agents)  this way, for good reason.  Vinblastine (in abvd) and Vincristine (in chop) are both vesicants, among several other common chemo drugs.

 

max

Seabrook
Posts: 6
Joined: Sep 2012

My husband has gotten Rituxan for years, both with and without a port, and I can tell you that it always takes about three hours.  The first administration is longer so that they can monitor your reaction.  But once it has been established that you can tolerate Rituxan well, three hours is pretty standard in our experience.

Mary N.
Posts: 79
Joined: Jun 2013

i will have to ask my Doc about ports changing results.  I don't have difficulties with most of metabolic panels so maybe that is why.  I'm so glad so many of you know so much about this stuff.  I've been really doing so much better than anyone expected that I just don't worry about what doesn't seem to be a problem and don't ask questions.

Mary

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