I just had my first IVIG infusion, and thought it would be useful to others to report on my esperience.
I'll be six years in Watch and Wait this coming March, and I get seen every six months both locally in South Florida where I live and in Boston. I was diagnosed locally at Lynn Cancer Center in Boca Raton, and I trust the professionals there, but two years into my W&W path my WBC count mushroomed over fifty percent in two months, so I did my homework and decided on the top person at Dana Farber in Boston was who I wanted to guide my future. I still see my local Hematologist Oncologist every six months too, because I feel I might need a local Specialist near home once in treatment, but I gave the reigns to my Specialist in Boston. My type of case can have a tendency to get aggressive, and recently I believe it has done so, so I wanted the one in Boston to call the shots.
I had a six month review in Boston this past March 11th and 12th, with CT Scans of the Chest, Abdomen, and Pelvis, and my regular bloodwork. Although my RBC and HGB levels are low but acceptable, and my Platelet count is low but acceptable, my condition is clearly accellerating. The Spleen is over 20cm with tenderness in that area daily, and the CT Scans showed massive increase in number and sizes of the Lymph Nodes in all three areas. My Boston Specialist said this time that it isn't too early to start treatment, and I should very soon start IVIG. I've been getting Upper Respiratory infections more frequently this year, with one in January that went six weeks until my body threw it away. Then in Mid May I got another URI and that one stayed heavy until Mid July. Then after the recent Boston trip in September I got sick again and entering this past Monday October 2 when I had my first IVIG, I was still coughing up stuff. In between these major ones, I don't count but on and off I go through sneezing and coughing.
I was nervous about starting the IVIG, and was aware that some people get unpleasant side effects frequently including headaches that can last, dizziness, weakness, etc, and in some cases some dangerous ones. I knew to get fully hydrated starting two days before, with stopping any alcohol or coffee due to potential dehydration. They want your blood vessels to be wide when they find the vein and do the drip. Before they start the drip they through the IV give you Benadryl (to reduce allergic reactions) and Tylenol orally for pain and possible headaches. Now for the good news....
My vein was accessed on my forearm easily and painlessly. The drip started purposely slowly at first, to make sure I was handling it alright, and then the Nurse sped it up after seeing I was fine. I never had any side effects at all through the four hour infusion. I didn't need to be held for observation, got up and left with my wife (who went with me in case driving home was difficult), and actually drove myself and her fine. I never felt a thing. That night I improved dramatically, and my wife said the next Morning: "it's a miracle, you didn't cough once or sneeze and your breathing was so much better" Call it coincidence or maybe the IVIG actually began working incredibly for me, but since monday I cleared up completely. No cough, no getting junk up many times through the day and night. I'm perfectly fine. Maybe this next thing is also coincidence, but I've been stronger each day and can stay up working on my computer twice as many hours. I also think my joints are hurting a lot less when I get up from sitting and in other physical actions. I don't know if that last thing makes sense, but I'm really happy.
I'll now have to continue IVIG every month, maybe forever. I decided to hold off on Treatment until February, and discussed it with my Boston Team Nurse Practitioner. I'm on Medicare and if I started in September on Zanubrutinib the first month would be about $3000. Every Month after the first would be close to $800 due to the Catastrophic Stage of Part D. Our medications put us through all four stages of Part D pricing in the first Month, so we're in Catastrophic Stage immediately. In 2024 Medicare Part D has done away with the Catastrophic Stage of Part D, so after the first Month $3000 we will be 100% covered on all our medications for the rest of each year. So as long as it was safe for me wait until 2024 to start the Zanubrutinib, I wanted to save the approximately $6000 I would have spent between September and December 31. My Boston Team said it was alright, as long as I don't feel a worsening of symptoms.
Carl
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wizzard166
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Hey Wizard, so glad you came through the IVIG well. All of these new events can make us anxious but fortunately the caregivers are on top of things.
I was interested to read your story. It sounds like the IVIG really helped your body finally get rid of those nasty infections. I'm only now getting a clear idea of how being immuno- compromised can affect all of our systems. I get IVIG also, but usually every other month. Lately I have been coughing more than usual and never know what it is for sure. Allergies or infection; it can be puzzling.
I'm a bit surprised you are only on IVIG only every other Month. Any site I've read online, when I was getting ready for my first infusion, indicated that infusions are always at least every three to four weeks and sometimes even more frequently. Maybe you aren't doing so well because whoever recommended IVIG didn't suggest treatments more frequently. I hope you are being guided by someone truly knowledgeable with the needs of a person who is truly immunocompromised.
I did look up your history and see that you have been through treatment. Maybe when a person is on treatment the Specialists decrease the amount of IVIG after a certain period of time on actual treatment. I don't know and havent started treatment yet. My Specialist did say that when we start treatment our immune systems get knocked down more than they were before treatment (which is already pretty bad). Mine wanted me to start monthly infusions even before my first treatment due to that. Maybe after half a year of treatment or so, the immune numbers come back up a bit and they feel you need less IVIG. I tend to doubt that concept, since what I've seen in posts here our immune system even after treatment doesn't really recover.
You are right in that our immune systems don't recover much after treatment. My specialist said maybe a little and I've clung to that hope
The criteria for IVIG as I understand it is an IGG number of under 500 and/or recurring infections. My specialists ( I actually have two) both agree that an IGG under 500 is the threshold for IVIG and that once it dips below that, IVIG should be administered. I can usually go about 2 months before that happens. Sounds like you had your fair share of infections so IVIG makes sense. So far I have not had any since January, but I do get checked monthly to keep an eye on it.
Some insurance will not cover the IVIG unless you meet those criteria so that is also a consideration.
Thundercat and Wizzard, further to your interesting discussion, some of us have reported an improvement in our ability to produce immunoglobulins after targeted therapies. If it happens with the older chemoimmunotherapy (BR, FCR), it's very rare.
The IgG threshold for starting IVIG (or subcutaneous IgG) varies by country. It's 400 in the UK and Australia for example.
Wizzard, thanks for sharing your encouraging results; I'm glad that you have had such positive results. Just keep in mind that IgG supplementation just addresses in part how CLL compromises your immunity. It won't change your anticipated timing for CLL treatment unfortunately, but will help reduce your increased risk of serious infections during treatment.
Finally, now that you will regularly be having IgG boosts from that provided by much valued blood and plasma donors, see if you can switch to subcutaneous IgG. It keeps your IgG count more even and you can do your infusions at home, so you avoid the risk of infection at the infusion centre and while travelling.
I appreciate you looking out for me and others on our site; you're huge wealth of knowledge is a valuable asset for our members.
I continue now on the fifth day after IVIG to have had no side effects, and my recovery from the URI is total. My breathing is much better of course. My strength seems to be greatly improved, including my ability to sit up and work on my computer for many hours compared to just a couple to three prior to the IVIG. It all actually makes sense, because with the immunoglobins added to my bloodstream I have an army fighting for me. Without the immunoglobins only my own body and its reserves of energy was fighting; thus, my energy reserves are now staying much higher because the immunoglobins are fighting in place of them. I should have listened to my local Oncologist and started a year ago.
I too am being told by my Hematologist Oncologist (H/O) that I should start IVIG treatment, as he'd like to see my IGG number 'above 500'. I too was/am concerned with potential side effects and was pleased to read the above entries (Wizzard & Thundercat). When the infusion center called to set up my monthly IVIG appointments I asked about subcutaneous (after reading on this site about that option) and was told 'they only did IV'. Not knowing my IGG levels have been low since the first time it was measured (328 on 7-2-21; 299 on 6-29-22; 293 on 12-21-22; 253 on 7-17-23; and 317 on my most recent labs, 10-17-23) I messaged to my H/O, 'why now?" True, I had just come off a 16 day bout with the latest variant of Covid-19, but other than that I have felt 'fit as a fiddle'...2-4 hours of excercising every day (even through Covid) with no S.O.B, muscle soreness (but still have those pesky leg cramps at night) and nary a cough or sniffle (except for now, but my first 'negative' test was only on 10 Nov (four days ago) and I attribute these symptoms to not having fully recovered yet). The reply was less than informative: 'He says he wants your number to go above 500'. No mention of why he wasn't concerned on any of the other visits (I even pointed out how my number had gone 'up' 20% (253 to 317) since my last visit). He did not mention that he was thinking of taking me off of W&W and was 'prophylactically' getting me ready for treatment, but that will be the next Q I send his way.
My question to all of you is does this recommendation of starting IVIG sound 'good'? What I mean is, I realize this is a costly, labor intensive product (from a huge number of donors) and do I 'deserve' it just because my # is low (I read one of the articles linked here somewhere where a Dr. Rodgers said IVIG is case specific, and how folks who aren't typically getting sick and have low numbers (in the 300's I believe the article said) aren't really candidates....or, don't 'need' to have it.
Another question is the 'cost/benefit' ratio. My H/O said it is quite expensive, but my insurance will cover it due to the low #. So, it really isn't the out of pocket expense 'cost' but the 'cost' of 3-4hr/weekly (I thought that was what the scheduler told me, maybe she said monthly, with weekly blood draws to measure my response, I will have to call her back and clarify).
Regardless, the other 'cost' I was concerned about was the 'headache, tiredness, muscle soreness, nausea, etc.' that I read regarding side effects, how would that make me feel every week/month? And, finally, what would be the 'end game'?...i.e. how long would this go on for? I read the half-life is ~ 3 weeks, but doesn't it just 'treat the symptoms, not the disease' or is there evidence that IGG infusions will actually help defeat my CLL? If not, won't it be likely that I'll be on it indefinitely? Again, not sure how much of my info you have access to but I'm 64.5 y.o., otherwise healthy male in W&W. I know there has been a post for a 'spreadsheet' where one can enter in all their lab values and I'll search for that next as I suppose having that info would be of help, but WBC count has been 'stable' (consistently right around 50K) and the only 'blip' was a one time drop in absolute Neutrohil count which 'popped back up' into 'normal' range just a month later (he shorted my CBC from 3 mo. to 1 mo. to check on it).
Thanks for any thoughts ! (Oh, BTW, my last post was whether having a surgical procedure could 'kick start' my CLL (i.e. move me into a stage that requires tx vs. staying in W&W). I had the procedure (hydrocelectomy) and it didn't seem to have a negative impact...although the hydrocele has returned and I've been back to simply have it drained...versus going through another surgery.
It was would be monthly blood draws (only initially until what need is determined) and about 3 to 4 hours for your monthly infusions.
You may not get get any of the side effects, particularly given you'll most likely be given premeds. My main side effect was tiredness and we don't use premeds unnecessarily in Australia. Unfortunately I still get tired with subcutaneous IgG.
As to how long you'll need IVIG, it's unusual for our immunoglobulin production to improve when we have CLL, even after treatment, but some have reported significant improvements.
IgG infusions don't improve CLL, they just counteract the impact of CLL on our compromised immunity.
Hi, I’m glad to hear you’re starting regular IVIG treatment. Like you I’ve been approved to have these infusions for as long as I’m still alive. Unlike you I’ve had approximately 130 infusions and my next one is on Wednesday.
Apart from catching Covid last year and pneumonia twice, I’ve been cold and flu free for 10 years now. Having had chemo numerous times, IVIG is actually something I look forward to, perversely, because the only hassle about it is the initial insertion of the needle. I download programmes to my iPad and just chill for 3 hours or so.
Thanks for the input. Unless I'm doing the math wrong 130 infusions would correlate to a little over 32 months or about three years; unless, you aren't getting one infusion every four weeks like I'm anticipating. Am I right?
My first infusion, and I imagine each one I'll have, comes right after they put Benadryl in the IV line. They also gave me pills of high strength Tylenol. I think the Benadryl put me to sleep. It didn't knock me out, but I happily and slowly drifted off. I don't sleep well ever, so getting that extra sleep (maybe one and a half hours) was beautiful. Do they stop giving me the Tylenol and Benadryl if I've shown on a few infusions that I don't get side effects like headaches or allergic negative reactions?
thank you so much for posting this. It’s so helpful.
Sorry to hear that you are having to wait for your treatment. My spleen symptoms disappeared within a week of getting the first part of V & O.
Actually now I come to think about it, mine was delayed for months because of a mysterious glowing PET lesion, which in the end was just a patch of inflammation.
I don't have to wait for treatment; instead, I asked if I could put it off. I communicated with my Specialist's Nurse Practitioner on Mass Gen Patient Gateway about it. I wanted to wait until beginning 2024, only because of the huge added expense if I started in the last four months of 2023. I'm on Medicare and Part D Rx is a truly horribly structured insurance. I should know; I represent it. In 2023 I'd go through all four stages of Part D Rx in the first Month, so I'd be in Catastrophic coverage from second month onward. First Month will be $3000 and each month in Catastrophic is about $800. In 2024 thank God we have the first big improvement in Part D, in which Catastrophic stage is eliminated. If I start in 2024 therefore I'll only have the first Month at $3000, and after that I'll have $0 on all Rx for the rest of the year.
The Nurse Practitioner told me that it would be alright to wait until beginning of 2024, as long as the pains I was feeling in the abdomen don't increase and I don't start having urological problems. The massive increase of lymph nodes and the greatly enlarged Spleen are the cause of the abdominal pain, and its not impossible the growth of the Lymph Nodes could press on the Kidneys and create an issue there. So as long as the abdominal pain, which is light, doesn't get worse that is good. As long as I have no changes urologically that is good. If both stay fine, I'll just plan to start Zanubrutinib around February 1. I have my next six month visit with Jennifer Brown at Dana Farber in Boston on March 5 (I live in South FL), so if I start Zanubrutinib on February 1 it will coincide with the suggested one month office visit after starting the Zanubrutinib. So far so good with no change in the symptoms, but I can always start Zanubrutinib quickly if need be by contacting the Nurse.
Have you contacted the drug company directly yet, to see if you qualify for free drug? If that's the main problems around expense, free drug doesn't enter in to the Medicare equation, and you could start treatment sooner since you've reached time to treat. Unlike many government programs, the drug companies only look at income not overall assets.
I also think it may be wise to be prepared get bloodwork/be seen sooner than the 1 month stated in the literature, especially if you put off treatment. If your CLL variant happens to strongly react and your spleen & nodes dump out, that is a massive stressor on your system, and metabolic changes may need support. I've heard a few too many stories of people starting BTK's and then getting severe nausea/vomiting/having weakness as their nodes melted away within days. TLS is starting to show up in the literature with BTK use, and I think we would be smart to start treatment early in a week and be prepared to go to clinic if we start feeling unwell.
"Tumor lysis syndrome secondary to ibrutinib has been reported in an increasing number of cases".
While I don't think the risk of TLS is as great as with venetoclax, I do think treatment recommendations 5 years from now will include earlier/more monitoring labs after starting therapy.
my IVIG was monthly for the first 12-13 years then my hematologist reduced it to 8 weeks. He says 8 weeks IVIG intervals are the standard at the hospital where he trained in New York. Since I have a two hour drive each way this was a welcome change. Still keeping decent IgG levels.
HopeMe is right though, when I think about it, the number is more like 120. I started in February 2014. I’ve never experienced any issues during my infusions. There is no prep here in NZ — just the infusion followed by a saline flush. I drive about 45 minutes each way and don’t need anyone to accompany me.
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