Starting IVIG Therapy

[NMgal]

Hi Friends, I've been in remission for almost 4 years, after Ibrutinib and V and O.

My Immunoglobulin levels have been on the decline for 6 months. Not crazy low but I was sick alot this year and I'm usually not.

Went to the Pulmonologist for 6 month long chest congestion. Had numerous tests, imaging etc. She did lots of labs and says the subclasses portion of the Immunoglobulin is very low. I am to begin IVIG next week.

I mentioned this to my Oncologist that Pulmonologist wants me to begin ivig, He says that's fine. Your Immunoglobulin IS low but I have some patients that are in the hospital it's so low.

My question: is this the norm?

Pulmonologist suggests IVIG once a week for the rest of my life??? And a port

I could use your feedback and two cents.

Thanks

Lorna

[AussieNeil Partner Administrator]

Lorna,

It's not uncommon to need something to boost your immunity after living with CLL for a while and you start having serious illnesses. That's because CLL suppresses the production of immunoglobulins/antibodies, the medical term for which is hypogammaglobulinemia. Either long term prophylactic antibiotics or replacement IgG (IgRT or IgG Replacement Therapy) from marvellous blood donors can be prescribed.

There are two ways that IgG replacement therapy can be delivered; by IV (where a port can be useful to save your veins) and via subcutaneous delivery, which is via a couple of fine needles into the abdomen skin. IVIG is typically scheduled monthly, whereas ScIg is done weekly. The latter gives you a more even level of protection against infections and the side effects are less, so you can do this in your own home when convenient.

Many who start on IgRT consider it life changing.

See my posts about my experience for more information.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Neil

[NMgal in reply to AussieNeil]

Thanks alot Neil. Very interesting, I will read on. The thought of feeling better makes me very hopeful.

[W00dfin]

I have been receiving IVIG through IV for 15+ years and no one has suggested that I should have a port. It was monthly until my hematologist reduced it to every 8 weeks 3 years ago.

Best wishes!

[Teagle47]

I have been receiving IVIG for 17 years and they have never suggested a port (which can have its own problems). Ports can be necessary if you have bad veins. As far as I know, IV IVIG is given in a 4-6-8 week intervals (and sometimes longer depending on your IG levels. . It depends on the amount you receive. It has a half life 3-4 weeks if given monthly. Other than SCIG, I’ve never heard of a weekly infusion.

Terry

[NMgal in reply to Teagle47]

Hi Terry, thanks for that. I'm learning that there are few ways to go with ivig and no port at this point!I am to receive weekly infusions and looking forward to having some energy

Lorna

[mrsjsmith in reply to NMgal]

Lorna it seems more usual to have monthly infusions, unless you are having the subcut that you do at home as AussieNeil. You will be spending a lot of time in hospital if you do weekly. Mine is monthly and I alternate arms. Personally I would question the need for weekly infusions, but that would explain the port.

Colette

[NMgal in reply to mrsjsmith]

Hi Colette,Yes I'm starting to see that. Part of my original question is out of curiosity as to why my Oncologist didn't jump in? I understand my numbers are not really bad. I'm new to this pulmonologist. Seeing her for 6 month chest congestion.

My oncologist is aware she is prescribing the therapy, just wondering if this is common.

It's all new to me, so I will put in a call to Oncologist to see about the frequency. I will see what he suggests.

Thanks!

Lorna

[NMgal in reply to mrsjsmith]

Hi mrsjsmith. I answered Colette by accident 😐 yes. Thank you. I plan to question it. I have found over the years that non-cancer Doctor's are sometimes floored by my numbers. Especially in the past Before treatment. I feel the same thing with the Pulmonologist...she does not see low hemoglobin numbers. Perhaps she got excited and suggested weekly infusions? I'll let you know.

[mrsjsmith in reply to NMgal]

Lorna Colette is my given name so you are welcome to call me that.

Do let us know the outcome. Having IVIG can be tiring, especially with the premeds, and it’s also boring, so weekly is quite a commitment but not having frequent infections is the goal.

Colette

[NMgal]

Hi Colette, Beautiful name by the way.

I am starting to understand the commitment part. What confused me was the Doctor said therapy would take an hour or 90 minutes?🤔 But of course with the hydration, benadryl ect it will be longer.

Just trying to accept the idea at this point. Being in remission I have been able to put CLL on a shelf somewhere in my mind...Ivig or SCig therapy reminds me that it's along for the ride.

[Newdawn Administrator in reply to NMgal]

Hi NMgal,

I must admit that I was also rather confused about the weekly infusions because monthly is more the norm when it’s carried out intravenously on the day unit. I can only assume they’re intending to administer smaller doses than normal spread over the month. The time estimated to you suggests this. However that’s incredibly time consuming.

I receive monthly IVIG but due to difficulty in accessing my veins, I’m presently having ‘training’ sessions which will lead me to administer sub cut Igs at home. I can choose the frequency over the month as long as it amounts to 30 grams monthly. I anticipate administering it twice a week. It wouldn’t suit everyone especially with any degree of needle phobia but it avoids endless hospital visits. I’ve never required any prep for infusions and haven’t experienced any issues apart from occasional slight fatigue afterwards. The benefits to me are obvious however and it really supports my immune system from the frequent respiratory infections I was experiencing.

Ask again about the intended frequency because it’s pretty unusual.

Best wishes,

Newdawn

[AussieNeil Partner Administrator in reply to Newdawn]

NMgal, Further to Newdawn's reply, an hour to 90 minutes sounds like subcutaneous IgG, rather than IVIG. That infusion time also fits better with weekly delivery, the norm for Subcutaneous IgG.

Neil

[NMgal in reply to AussieNeil]

Yes Neil, the more I read about both therapies I believe the Dr. was referring to the subcutaneous version. Hopefully I can do that at home? I will find out next week. I'm grateful for the chance to boost my immune system.

Getting sick with every bug out there is exhausting.

Lorna

[AussieNeil Partner Administrator in reply to NMgal]

Yes, subcutaneous IgG is done at home after you've had a few training sessions.

[NMgal in reply to Newdawn]

Hi Newdawn,Thanks so much for the info. It's so nice to be able to check in with fellow cll'ers. Running this past you folks always helps to make me feel connected☺️

I will check with my Oncologist next week.

[TruthJunkie]

Hi NMgal, I have been getting IVIG about every 3 months, since I was diagnosed with CLL almost 7 years ago. I had 3 chest infections in 3 months’ time, right after diagnosis. I asked my oncologist if I could get a port, as I knew that my veins are small and difficult to negotiate. If your veins are not good, a port could be your best friend, going forward. By the way, the brief surgical implantation (not complete anesthesia, something like Propofol) was not a big deal. The area healed quickly. Just my thoughts on the matter. Best wishes.

[NMgal in reply to TruthJunkie]

Hi TruthJunkie,Happy to say they found a wonderful vein on my forearm and all went really well. Absolutely looking forward to Not getting sick! I've had more infections in 2024 than ever.

[TruthJunkie in reply to NMgal]

Oh, good, NMgal! Happy to hear that your first IVIG went well. I have had the infusions about every 3 months, depending upon IgG levels. These have kept me from getting obvious infections, though I have extremely limited my outings to those necessary to treat the CLL, and I always wear an N95 mask. I do not have a CLL Specialist myself, as they are not available here (in Hawaii). Many on this site have recommended seeing CLL specialists, specifically because they know this disease best. I did consult with a CLL specialist (available via LLS.org), prior to beginning treatment with Zanubrutinib. If your oncologist is reluctant about the infusions, you may want to seek out a CLL specialist, wherever you are in the USA. My infusions have been done when my IgG level was below 500, though I will now be having them monthly. Just very weak, almost 7 years into this. Others will tell you that they do not have this severe fatigue, but I am one who does. One day at a time, as they say! 👍

[NMgal in reply to TruthJunkie]

My Hemotologist is an interesting guy, not a CLL specialist. Unfortunately, not one in the State. The new Pulmonologist I started seeing in November, is the one ordering the ivig. I have no idea if this is 'normal', just so glad to get it.

One day at a time or an hour at a time works best for me! It's too easy to allow my mind to worry about things that may very well never happen.

All the Best

Lorna