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Rituxan- Bendamustine and Veins

PeprmntPat55's picture
PeprmntPat55
Posts: 63
Joined: Aug 2016

I have my first infusion this Monday coming, Rituxan - Bendamustine, then Bendamustine only the following day.  Every third week, 20 days (give or take)

My Onc didn't say I needed to get a port and when I asked he said he didn't think I would need one.   I have Follicular Lymphoma, Stage 3, low grade.  

When I met with the nurse for my education, she seemed surprised that I wasn't getting one, but she did show me everything about it in case I decided I needed one.  

I am currently ordered for 6 cycles with a scan after 3 or 4.  

I am wondering what others who have taken R&B experienced?  Maybe these drugs are not as hard on your veins?  

Is it better to wait and see about how your veins hold up, or should I go ahead and get one?

Thanks for input, 

PP55

 

KarenSMZL
Posts: 16
Joined: May 2016

I am currently on the same treatment regimen, I have a port and I am happy I have it.  It is possible that after your six rounds of Bendmustine and Rituxan that you will be put on a maintenance dose of Rituxan only.  So you will have 2 IV starts every cycle, you will most likely have lab drawn every week during treatment, you will most likely have IV contrast used for your CT scans.  All of this stuff wears on your veins and can make it more and more difficult to get an IV started on you.  I feel like this would put you through unnecessary pain, not to mention the danger of having the Bendamustine infiltrate your tissues if an IV goes bad during infusion.  You also might want to get a power port so that it can be used to inject the IV dye with your CT scans.  I had the port put in and only missed 2 days of work.  Hope this helps, and wishing you well during your treatment.  I have had 4 cycles of BR and had grade 4 neutropenia this month.  I hope your insurance will approve Neulasta for you so that won't happen to you.  Wishing you every good thought, Karen

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3489
Joined: May 2012

Pat,

People vary a lot on how well they tolerate or appreciate IV ports.  Clinics and oncologsits vary on when to recommend or demand that they be used.

I found a port install to be very minor, and never paid mine much attention, but for others they are bothersome.  Many clinics REQUIRE a port for certain chemos if they are vesicants: drugs that are blister agents, that will scald flesh if spilled, but not all practices are standardized, even on this. (Vinblastine, Vincristine, Adriamycin, Mustargen, and several other drugs are vesicants, whereas others are rated as harmful if spilled, but less dangerous, and are usually referred to as "irritants."  Neither Rituxan nor Bendamustine are listed at chemocare.com as vesicants.  So, at virually any clinic, port use would be optional; your decision.

Me -- I would get one. They are a little inconvenient, in that they must be flushed by a nurse occasionally, which is only an issue when you are not receiving treatment (practices vary as to how often a port should be flushed, but I have heard of people going many months without a flush).  After removal, a port will leave a little scarring. They are almost always installed upper chest, just below the collar bone, left or right side is acceptable. A cath is run from the port to the superior vena cava, a large vein, or an alternative, if complications require. A general surgeon does the operation; mine took about 30 minutes.

As Karen mentioned, do get a "power port": a port that will receive scan contrasting agents(chemical dyes). Mine was not a power port, so for CT scan contrasting infusions, I had to get an arm or hand IV.  (Some of the CTs you receive will be "with contrast," others, without.) 

Some people, usually when hospitalized and who do not have a port, will have a "PIC Line" installed under the arm. These are quite unpleasant for a variety of reasons, and ideally are not kept in very long.  I would never choose a Pic Line myself.

A few items for you to consider, but if you feel yo want a port, I suspect your doc would order it.

I did years in the Navy. When a young relative saw my scar one day and asked about it, I told him it was "just my port hole."

 

max

Anonymous user (not verified)

i had over 20 R infusions with no port. No problems with veins.

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Hi PP55, I had 2 ports. The first one became infected and had to be removed. My second port never gave me any problems but I was very protective of it. On my doctor's recommendation, I never allowed it to be used for anything other that chemo. Blood tests were drawn from my arm. IV's for PT and CT contrast were placed in my arm. Having said that, I did allow blood transfusions into my port. Also I once had a home health care nurse. I gave myself two 1 1/2 hour antibiotic infusions each day for 2 weeks. That wouldn't have been possible without using my port. 

I do know nurses love ports. It is much easier for them to access than trying to find a vein. I also know that some people are much better with needles than others. Right now, I have bruises on both arms where an RN was unable to get an IV started for a CT scan. (She finally got someone else to do it). A few days later, a phlebotomist in my clinic's lab, slid a needle painlessly and easily into a vein for blood tests. There is one person so good at it, I think she could stand in the doorway and throw the needle like a dart and it would go right in. 

As you see, there are many experiences with ports. If my doctor said I didn't need one, I would go with that.

Best of luck. . .

Hugs,

Rocquie

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

My oncologist did not make it an option. I got a power port. It is used for chemo and often for blood tests. For the scans they use my right arm. Before the port the alernated between the left & right arm. around the time I got the port the left arm became almost impossible to use. So I am protective of the arm veins. 

Slowery
Posts: 4
Joined: Sep 2016

I had the exact same treatment except I had it every 28 days. I am now starting my 2 years of maintenance next week. I think that if/when I have to go through this again, I will get a port. Your veins get so sore and bruised from the Bendamustine, I just didn't want to think about having it for 2 1/2 years. I was terrified of the IV, now it's not that big a deal. I have Non-Hodgkin Follicular Lymphoma Stage 4. I was diagnosed in March of this year.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Hi Slowery,

I was diagnosed with the same thing as you back in Dec 2014. R-Chop Jan - June. July scans showed the cancer had retreated from a lot of places but not all. So Aug - Oct I did RICE and the Drs were planning for Stem Cell Transplant. Stem Collection starts in March and was stopped without getting enough cells because it was knocking the crap out of my platelets. It took a few months and another round of test for them to decided that the SCT was not for me. In between all of these on again off again treatments I would get Rituxan. Last week I had a treatment and asked my Oncologist when the maintenance clock started. She looked at the records and decided start date is the March 2016 Rituxan treatment. I look forward to those days. It's a day off from work where I can sit, watch tv, read, nap with a wamr blanket, etc. for at least 5 hours. As my one sister-in-law (cancer survivor on Rituxan maint) calls it "spa day". 

hrveylee
Posts: 3
Joined: Oct 2016

Hi!!! I had moderate vein reactions, most likely from the bendamustine. My right arm veins have been sore, my left arm has one vein that has been a problem; phlebyitis. We decided to put a port a cath in this coming friday. I've had only 4 treatments of the retuxan/bendamustine regimen. My treatments are once a month for 6 months; one day I get both meds and the next just bendamustine.

PeprmntPat55's picture
PeprmntPat55
Posts: 63
Joined: Aug 2016

Hi hrveylee.  

You and I are in very similar situations, it seems.  I started R & B on Sept 12/13.  Same protocol as you; R & B on day one then day two Bendamustine only.  Last Thursday night, a little over 2 weeks after my first cycle, I devut neveloped (or it just became apparent?) a blood clot at my IV sight.  It had been puffed up since Day 2 but never really gave me a problem although it was tender to the touch. I was out shopping and my arm felt funny. When I pulled up my sleeve I freaked out. It was pinkish red at the sight and there was a red streak moving up my arm.  Turns out it's a superficial blood clot.  

So yesterday when I went in for R & B, the same thing started to happen in my left arm. It got puffy, but they said everything was going in ok.  At that point I said "I want a port. Can we do it tomorrow before my 2nd treatment?"  

Lo and behold I was able to get it done. This morning.  I am sore at my neck and tired from everything but am very, very relieved.  

I hope your port insertion goes well for you and that it will be a relief for you as well.  

Blessings, 
PP55

hrveylee
Posts: 3
Joined: Oct 2016

PP55:

Yes we are in a similar situation. A heat pad on the arm will help quite a bit. Now I have a slight carse of itchy scalp and hives; not bad enoiugh to be considered more than a nuisance. Need to increase my benedryl ans probably have prednisone before next treatment. I'll have my fourth treatment in 10 days, actually very tolerable. I was officially diagnosed in august of 2014, but shouls have been diagnosed in 2010; nodes were swollen and my doctor didnt do a follow up. Wouldnt have made a difference. 

BE WELL!!!!!!!!

Harvey

donV2
Posts: 3
Joined: Nov 2016

Same treatment in 2015...Burned viens in right arm...left arm tolerated better...never did the port...Your Dr and nurses should help you decide...hang in there...most of us NHL patients do well with this treatment...1 year canser free.

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