Installing a Port-a-cath for chemotherapy infusion

My daughter, Meaghan, is at the University of New Mexico Outpatient Treatment Center (OTC) today for her first dose of two for the second round infusions of Rituximab (Rituxan).

Rituxan Official FDA information, side effects and uses.
http://www.drugs.com/pro/rituxan.html

This Rituxan medication is the next step in efforts to achieve remission with her Churg-Strauss Syndrom (CSS) vasculitis. She was taking Methotrexate and Prednisone for the past eighteen months with some success at controlling symptoms, but no remission. She flared last March, and started Rituxan in May. Since then, she has been able to taper completely off the Methotrexate, and lower her Prednisone dosage.

The numerous negative side effects associated with both Methotrexate and Prednisone make lower dosages a significant improvement. The documented side effects of Rituxan are neligible compared to Methotrexate and Prednisone, so we hope this will not only control her CSS, but also improve her long term prognosis by reducing the risks of other diseases related to side effects.

Because she has become a long-term infusion patient, her doctor recommends she have a port-a-cath installed. This will make bloodwork and other infusions requiring a vein puncture easier and safer.

Today was a case in point. For whatever reason, her veins were not cooperative, and it took several attempts before the nurses gave up, and eventually a paramedic was called in to find a vein with the assistance of an ultrasonic imaging scanner. This process of enduring nine or tens IV attempts delayed her infusion by almost four hours, and caused her a lot of suffering.

The doctors talk about this "port" as if it were no big deal. It is fairly common and they see few incidents of complications. They described to her what those complications can be. My research seems to indicate that the rate of complications is something like 1.04/1000 (0.01%).

The complications range from a minor site infection that is treatable, to blockage of the port. Certain more serious complications require removal of the port. These are all rare, and the more serious are the most rare.

That information correlates with a summary web page I found on this topic that I think details the entire issue pretty well according to what the doctors tell me and from what I have been able to research myself:

Portacath Insertion
http://www.sir.net.au/portacath_pi.html

After researching this fairly comprehensively, it seems the Port-a-Cath method of installing a permanent catheter is cheaper and safer than most other choices.

This is not really "permanent" in the traditional usage of the word. When she is successfully in remission, then the Port-a-Cath will be removed.

Big news, but it will make blood draws easier, and it will certainly be more comfortable than the peripheral IV method of administering infusion therapy. The other benefit to this will be that emergency medical personnel will have an easy method for administering medications should she ever have an neeed for urgent care.

So it seems this Port-a-Cath will be more efficient and more economical in the long run. Plus this promises to be more comfortable for the patient, who in this case is my daughter. I am all for sparing her additional pain and suffering.

: Joseph

To other vasculitis patients:
So, what's your story? Let me know how you are doing. You can send me Email.

Joseph W. Carpenter
Email

May Chapter Meeting Notes and Sunday is cancelled

No RSVPs by Thursday and I have other commitments this weekend. SO this Sundays meeting is cancelled.

Go if you like, and if I hear from more than one of you planning to attend, I will let the others know they will not be alone. Otherwise, see you in June!

The meeting today is pretty much a bust. Meaghan and I enjoyed a nice dinner of some pretty good pizza they make on the premises. Tip: Try artichoke and olives!

We sold one Vasculitis Awareness T-Shirt, to Meaghan.

Now, lest you think the month was a waste, we have news.

At the UNM Outpatient Treatment Center (OTC) where they do the chemotherapy infusions, I made an official agreement to supply their patient education center with VF brochures. I left them a stack of 20 to start that I had with me, and I will deliver more in about ten days when we go there again. Let's see how many they go through in that time. I always include a sticker on the back with my local contact information in addition to the national information already printed on the brochures. Let's see if that gets any new people to the meetings.

Now I need to do the same over at Presbyterian. One of the Rheumatology Fellows here is graduating from his fellowship at UNM and may land at Presbyterian, so I will have a built-in connection there.

In other news, almost everything I have heard about Lovelace Rheumatology is bad. Not sure how to proceed, but I am not going to promote them. If any of you have information one way or the other, I welcome your feedback about your doctor.

I welcome your feedback about your doctor regardless. Would you recommend your doctor? Why? Why not? Come on, do tell!

On the other hand, patient anecdotal comments lead me to believe that Albuquerque Rheumatology has at least two excellent doctors. Based on the comments, Dr. Jacqueline Kim Dean and Dr. Leroy Arnold Pacheco. Their patients certainly like them.

The UNM doctors, Dr. Bankhurst, Dr. Sibbitt, and Dr. Johnson are all well respected and even liked. Meaghan certain likes Dr. Sibbitt who has been very responsive to her needs. We are not always happy with the red tape at this university hospital, but we are learning how to navigate the pitfalls. The doctors are great, it is billing and other that cause certain issues.

Next, we met two patients this month at UNM OTC who speak Spanish and one of them speaks no English at all. I was able to pidgin together a reasonable facimile of a conversation, but I do not have the medical terminology in Spanish, so in addition to my picking up a book on Spanish medical jargon, we also need brochures in Spanish language. I will ask VF if such are available, or I will arrange to get what I have translated here. Here in the land of sunshine and enchiladas we have plenty of resources for translation. I already know a professional translator who may be willing to donate his time for this. I will ask. I may also see about getting the best parts of the CNMVF website translated to include Spanish language versions. Anyone out there want to help with this??

In other news, Meaghan is now taking Rituximab. Wish her well and lets hope this lets her get the other meds down. She popped back up to Prenisone 60mg after flaring through March and April. Now deaing with renewed puffyness, and wishing for time to fly a little faster on that score. Tapers are slow...

Karla is busy with the symphony, and I have not heard from her in quite a while, but from her Facebook updates, it seems she is feeling okay lately.

I met a new patient last month, Luanne, who is housebound. I plan to call her in the next couple of days. Along with a couple of other housebound patients who cannot attend meetings. This may lead to some kind of quasi-teleconference meeting... At least that is the idea if I can figure out how to work it.

I also read in the latest monthly VF newsletter, that the VF Information packets are available now. Once I get a look at them, I will start planning to deliver them to local specialty clinics.

In addition to hopefully being a sorely needed source of good information, they are also a great way to introduce myself to the clinic administrators, and managing physicians in order to establish more and better connections to more patients.

Okay, pay attention. There is NO meeting this coming Sunday.

I think for my own peace of mind, I am going to make it a requirement to RSVP by Thursday night for Sunday meetings. I can always meet any individual you is interested in a one on one breakfast or lunch meeting.

Keep that in mind. If you cannot make a monthly meeting but know you will be in town for another reason, please call me up and we can get together for a drink or dessert to catch up.

One day at a time, let's put one foot in front of the other, and the next thing you know, we'll be walking out the door!

: Joseph Carpenter
Email | (505) 255-1366
PO Box 30888, Albuquerque, NM 87190-0888
CSS Parent, Daughter DX March '08
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org - http://www.vasculitisfoundation.org

Rituximab infusion - The next day

Meaghan was given an infusion of Rituximab yesterday. Well, the infusion day was a it of a roller coaster ride, but ended up a success.

For about a month, Meaghan and I both suffered a quiet anxiety while anticipating the infusion with great hope and great fear. The potential positive results means that other medications with some nasty side effects can be tapered down to lower levels.

On the other hand, the potential reactions to Rituximab ranged from nothing to sudden death. How is that for a range of options? Anyway, Meaghan experienced a fairly serious asthmatic reaction, which is to say she found it difficult to breathe. It is a pure statement of her condition that this is nothing we have not dealt with before.

One nebulizer breathing treatment with a medication called Albuterol cleared up her airways and after a bout an hours delay, she was able to complete the infusion. With the delays, she was in hospital over twelve hours for what was supposed to be a six hour infusion. But it is done now.

We are very appreciative that three nurses and two doctors who stayed late last night. The hospital was literally locked up when we left so we had to walk around the outside of the building to get to the parking garage. Then the elevator in the parking garage was broken so I hiked up to the 4th floor to get the truck. It was as if the powers that be did not want her to leave.

So, what about this morning?

I awoke to the sound of Meaghan singing in the shower. Yeah... singing.

She reported some pain at the injection site last night, but this morning it was all clear.

She had that asthmatic reaction during the infusion, but this morning her peak flow was 800. (Her normal daily is 700-750.)

Meaghan reported no pain and she was very excited.
Partly that could be the 60mg of Prednisone kicking in. She has been on that dose for several days now.
Partly that could be the fact that she got to attend the championship game for the State HS Baseball. She is the team manager for her school.
(I must interject here that her team did in fact win the State Championship. So, how many sixteen year old girls do YOU know who have earned a pin for their letter jacket as state champions in boys baseball?)

Meaghan had been prepared to miss the game, but the doctors all say, “Go with how you are feeling,” and she felt very good today.

Partly, and probably mostly, her positive outlook today could be attributed to the successful completion of this infusion. It is like a great weight was lifted off her shoulders. Last night, she even spoke to me of things related to the future, which is a topic I am not even sure she is conscious that she has avoided lately. The vasculitis flare makes a patient wonder if there will be a future, and if so, then will the quality of life be worth getting there? Now Meaghan seems willing again to look forward and that is very very good...

Rituximab has garnered successful results for many CSS patients. We have been hearing about it for a year now when we met other CSSers in June 2008 who were had participated in the clinical trials. They all seemed to love it. One went so far as to threaten bodily harm to any one who tries to take it away. Compared to chemotherapy and corticosteroids, these biologicals are a dream medicine. They are genetically engineered substances that target specific cells in the body and create a specific effect. It really is next generation stuff.

But like anything new, there is that big question mark about long term prognosis.

After the second treatment in two weeks, Meaghan will have a gap of 4-6 months between treatments. You know when it is time to take another dose because your vasculitis symptoms start to return, But she should be able to expect at least three months of improved condition. That is a merry break from daily pills and weekly injections. Oh, the pills and injections will continue for now, but there is a good chance she may be able to taper them down to a less harmful level.

Take Prednisone for example, there are many side effects, and long term use is almost as bad as the disease it acts to cure. The stuff tastes nasty, and puts your brain literally, “on steroids.” Those commercials that are out now about sports are mostly aimed at anabolic steroids, but the effect of corticosteroids is also a double edged sword. They do so much good they are referred to as miracle cures, and they can do so much harm that they are truly a damned if you do, damned if you don’t sort of deal.

So, Meaghan is feeling great today. That is what matters right now.

Tomorrow is another day. We will deal with it when it gets here.

: Joseph