Compromised Immune System, but lymphocytes down. Do you need a port for Immunogloblin infusion?

[pdmw]

Just had my annual visit with the NP at my Oncologists office. I was diagnosed 5 years ago next month at the age of 56 but have had it for about 10. I was misdiagnosed during those first five years by 6 doctors.

My CLL is still considered stage 0. My wbc count has remained fairly even, from a low of just over 10K to a high of 16K; currently it's at 15K. My lymphocytes were down from the last blood work in February when I was suffering from the flu. But I'm stage 3 for SLL because so many lymphnodes are involved.

The disappointment this visit was my immune system. I'm officially compromised and was told I will need to get the immunogloblin infusion once my Immunogloblin G drops to 400. Which given how rapidly it's dropped over the past 5 years, will not be too far off.

My question is do you need a port for the Immunogloblin infusion? And when you have a port, does it need to have any type of adhesive to cover it? I'm allergic to adhesives and have a mild case of psoriasis.

Thank you.

[AussieNeil Partner Administrator]

You don't need a port, but tape or an adhesive plastic wrap is used to hold the cannula in place. If you get to the stage of needing IVIG, just let the nurses know of your allergy. You might also like to try subcutaneous IgG, but you'll still need some adhesive to hold the needles in place for the hour or so of the infusion, plus absorbent pads/plasters over the injection site for a few hours after the infusion.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Neil

[pdmw in reply to AussieNeil]

Thank you so much. I had a breast biopsy a few years ago and the only tape they used caused a very uncomfortable rash on my chest (snowflake shaped due to the taping pattern). I told them I was allergic to adhesives and was told "this is the only one we use." It went away in about a week but I only had to have it on for a week. If I have to keep the port area covered it will be a challenge for me. Thank you again.

[pdmw in reply to AussieNeil]

PS. How many infusions are in a series and how often are they required? We're hoping to begin spending winters someplace warmer in another year but I would prefer to get this taken care of at my oncologists office. I am not sure I capable of self administering injections. I tried for years to give myself migraine medicine injections and they were a fail. Same with giving our cat insulin injections. I never got close to mastering it.

[AussieNeil Partner Administrator in reply to pdmw]

If your IgG is very low and doesn't recover, infusions are given every 4 weeks indefinitely in Australia, with the amount of IgG given individually tailored to maintain an acceptable IgG level.

In the USA, the time between infusions does seem to be determined on an individual basis.

I think you'll find that there may be alternative adhesives available too, plus the infusion site is into an arm or back of your hand, where the skin is less delicate. The tape only needs to stay on for less than 12 hours, perhaps as short as 4 to 5 hours if you don't have bleeding from the infusion site.

[pdmw in reply to AussieNeil]

I really appreciate the information. I had no idea it could be as frequent as every four weeks.

Thank you so much for sharing.

[mutamer in reply to AussieNeil]

AussieNeil....I always read your insightful yet objective responses. I sit here in beautiful Santa Fe, New Mexico and am a patient of Dr. Michael Keating at MD Anderson....this far away, yet appreciating all that you share. Thank you.

[BeckyLUSA in reply to pdmw]

In the US, I started out every month and now I am holding at every 6-8 weeks. By the end of the time, my IgG is back down below 400.

You might ask the nurses to wrap with an ace bandage instead of regular bandage. I have had them do that for me on occasion.

[pdmw in reply to BeckyLUSA]

Thank you so much. I've learned so much since I asked this question. I really appreciate your reply.

[Hidden]

I have friends who travel a lot but need frequent infusions. They make arrangements with hospitals or doctors in other cities to have it. I don't know how the payments work though... This is another reason why I am a fan of the subcutaneous infusions: I have a six month supply at home, so I can go away at any time just packing up my supplies to take with me. I need infusions weekly.

As for allergies to sticky tapes, I believe most hospitals stock anti-allergenic tapes, because many people are sensitive to them. The subcut method also involves the use of a very small amount of tape.

Good luck!

Sue (UK)

[pdmw in reply to Hidden]

Thank you so much. We travel a fair amount and this was one of my concerns. I may very well have to learn some new skills to keep on top of this.

[AussieNeil Partner Administrator in reply to pdmw]

I didn't like the idea of self injecting, but after over 60 blood tests and IVIG infusions for nearly a year, I made the adjustment. Spare a thought for diabetics, particularly those diagnosed with type 1 diabetes as children...

[pdmw in reply to pdmw]

I have had the same thoughts. I'm young enough that it's probably best I learn to do this sooner rather than later.

[W00dfin]

I am 66 in the US, diagnosed CLL 2003, and began receiving IVIG in my arms about 3 years later, initially during the cold season. I have been receiving IVIG every 4 weeks year round for the past 10 years in my arms or back of my hands. They use an adhesive patch to secure the injection site. It has not irritated my skin which is sensitive to bandaids. Afterward, they wrap rather than tape the site. I am blessed with good veins and they usually get the IV started with no difficulty. They have not mentioned my needing a port.

Hope this helps.

[pdmw in reply to W00dfin]

Thank you so much! Yes, this helps tremendously as I prepare for this next step.

[MsLockYourPosts Passed Volunteer]

Also in the US. I started IVIG in 2003 with an IgG of @250 and living from infection to infection, and have been getting it ever since - no port and I have graduated to every other month. My doctor follows how quickly my count slides down to determine how long I can go between infusions. Dosing is by weight.

You can ask to have Coban wrap used instead of tape - stretchy like an ace bandage, but sticks to itself, not the skin and is cut to the needed length.

Is your doctor just going by your IgG count, or are you also having trouble with frequent infections or a couple of more serious ones in a year? Some people have low IgG levels, but don't have trouble with infections and so don't get IVIG.