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Immunoglobulin levels improved at last (after 19 months on Ibrutinib)

After 19 months on Ibrutinib, I was delighted to hear that my immunoglobuins have improved. IgG and IgM are now within normal ranges, and IgA isn’t far off.

They were all much lower in the past, so I am very pleased, and thought it worthy of sharing. Makes a change to have some good news.

In England right now, it is bluebell season… I love bluebells.. These were in a wood very near our home.

Best wishes to all,

Paula (enjoying springtime).

43 Replies
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Thank you for sharing this wonderful news...and I love the photo, its beautiful!

Debbie

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Glad you like the photo, DebKat. From a distance, these woods have big masses of blue amongst the trees, like a carpet. But when some of the stray flowers are seen as individuals, they have a different sort of beauty. :-)

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So lovely Paula 🙂

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Thanks for the good news. Hope mine are better soon. I have been on I/V for 21 months and no improvement yet. 459 as of yesterday just before getting my IVIG. Had been 6 weeks since previous infusion. Might have to change to subcutaneous if I have to continue as my veins are rebelling. Took 5 sticks yesterday to finally find a vein and get my bloodwork done!

BeckyL USA

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Hi Becky, I'm sorry to hear your immunoglobins are no better yet.

If you're having problems with your veins for IVIG, I'd definitely suggest changing to subcutaneous. Lots of people do that (eg AussieNeil) and all seem to prefer it that way.

I do hope your own Igs improve soon...

Paula

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Becky, with 6 weeks between IVIG infusions, your IgG will be about a quarter of what it was at its peak* after your infusion. So it's no wonder that you are seeing a low IgG prior to your next infusion. It won't quite be a quarter, your actual count will depend on how much IgG you still make, but it's likely that your IgG is at a quite high value just after your infusion. IF you are still getting infections frequently, you either need your infusions closer together to achieve a higher IgG serum count, or should switch to weekly (subcutaneous) infusions to maintain a more constant level. This post shows the difference I saw in the average IgG level maintained by both methods:

healthunlocked.com/cllsuppo...

*IgG has a half life of 21 days, (the time it takes for half of what's provided to be used by your body, etc) so after 6 weeks or 42 days, two half lives have gone by, meaning three quarters of your infusion has gone.

Neil

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Thanks Neil, have never had it explained that way, and it makes sense. Yes, I will definitely go the subcutaneous route rather than get a port, if IVIG is small that I need. (Depending on insurance, Medicare etc)

BeckyL

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Good news Paula,

My IgM is still low after 15 months but everything else heading in the right direction ! But thank god for IVIG

Bluebells are beautiful

Colette x

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Thanks Colette.

Good to know that apart from your low IgM, everything's going in the right direction for you. As you say, thank God for IvIg.

Paula x

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Great to hear this Paula.

Peggy 😀

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Bluebells are out and your Bloods have improved...…….what more could a girl want lol.

great news Paula well done

Regards

John x

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Yes John, what more could a girl want, other than bluebells and better bloods? :-)

Well I'm hoping for my lymphocyte count to get back to normal ranges too. It's come down from 600 to 43 (thousand) though, so I guess I shouldn't complain.

Best wishes,

Paula x

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Super news Paula. This is consistent with some of the literature that suggests ibrutinib can actually help restore our immune system. Your news is very encouraging indeed.

Here is an article about ibrutinib improving t cell function:

ncbi.nlm.nih.gov/pmc/articl...

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Yes Jeff, it was certainly very encouraging news. My haematologist thought so too. :-)

Thanks for that article. Very interesting.

Paula

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Great news Paula

I love bluebells too!!

Suexx

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I'm glad you love bluebells too, Sue. :-) Those in my photo are native British bluebells, rather than the imported Spanish bluebells. All are beautiful, but I have a soft spot for our native variety.

Paula xx

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Agree with you.

Suexx

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Brilliant and reassuring news Paula! 😊

Newdawn

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Wonderful news Paula!

Wonderful picture!Thanks!

Greeting

Olga

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Thanks for the great news. It is so nice to see things are going in the right direction. Taken in the pretty flowers can only help ones mood

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Great to hear that Paula, thanks for sharing.

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Excellent news, Paula. Love your photo. I was in a bluebell wood last week. Joy

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Thank you for posting. I was wondering if I would see improvement of my immune system.

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Hi Dogger, I do hope you will see some improvement in your immune system. It's an incredibly complicated thing, with lots of different elements to it.

I notice that you're on Ibrutinib, which can at first cause problems for the immune system, but over time things usually improve. They have done with me, but it did take quite a while...

Wishing you well .

Paula

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Thank you for your reply. Did your neutrophils go up?

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When I started on Ibrutinib, first my neutrophils went down, then they soon shot up very high. My neutrophils have always fluctuated widely though, and it's hard to see a pattern or trend. I sometimes wonder if the labs are counting them properly...

Have you got a problem with low neutrophils?

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Good news, PaulaS.lovely photo.

jennyUK

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Thanks Jenny :-)

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Brilliant news Paula.

I love bluebells and have two small clusters in my garden. I'm not sure how they got there but I I am happy to have them.

Netty

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I'm glad you've got them too, Netty. Just seeing the bluebells this spring has lifted my spirits. Winters can seem very long, but eventually spring comes... :-)

Paula

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I love good news! Thank you for sharing.

Here in Wales the bluebells are also magnificent this year, popping up all over the place. As you say, in odd ones and twos and also in great swathes. And don’t they smell wonderful! (Assuming it's a day when I’m able to smell anything!).

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Yes Chrigranny, 2019 seems to be a specially good year for bluebells (in the UK anyway). There seem to be more than usual.

My hubby tells me they smell wonderful, but sadly my sense of smell is never very good. I have to put my nose right next to them to smell anything...

Paula

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Hello PaulaS, good news about your health, but can you explain to me what does this mean, your IgG, IgA, and IgM. I'm fairly new to CLL and don't know all of the terms that are being used, so could you help me to understand the usage.

Thanks and best wishes to you. 🌷🌹🌹

Oh, your picture of blue bells is very nice and I too love all types of flowers. I guess you might say I'm a flower child.😁

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Hi Flowerchild Lulu,

I'm glad to hear you love all sorts of flowers. So do I, even those commonly known as "weeds". The dandelions this year (in England anyway), are also very bright and prolific. I love to see them growing by the sides of the roads.

Anyway, you ask about IgG, IgM and IgA. These are different sorts of immunoglobulins that are all involved in fighting infections, but in different ways. Here are some links that explain better than I could.

kidshealth.org/en/parents/t...

hopkinsmedicine.org/health/...

For us with CLL, our immunoglobulins tend to get lower as the disease progresses. The lower they get, the harder we find it to fight off infections. At the same time our neutrophils are usually also decreasing, which adds to our problems with infections. The immune system is very complicated and has many different elements to it. Others here can probably explain it better than I can...

If people are getting a lot of infections (especially if they have low immunoglobulins and neutrophils) , they may be given infusions of intravenous immunoglobulins (IVIG), from donated blood. This can be a life-saver, but is very expensive and needs hundreds (maybe thousands, I'm not sure of the exact numbers), of donors for just one infusion.

I hope this helps. So many different terms are used with CLL and when you're new to it, it can be very confusing. I'm not new to it any more and I have a nursing background, but I still have a lot to learn and get confused about these things.. Do keep on asking questions...

Best wishes,

Paula

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Great News!

JM

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Excellent news - I, too, have been enjoying the bluebells recently in a nearby wood. (The dog likes the wood, too, though I suspect he's more interested in the squirrels!)

I do hope the good news keeps on coming for you.

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Thanks Scarletnoir, glad you and your dog are also enjoying bluebells.

We used to have dogs too, and I remember trying to make them sit still for photos amongst the bluebells. Never worked very well... Like your dog, they were too interested in the squirrels :-)

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Great to hear that our immune systems can recover, although slowly.

The springtime bloom of the bluebells here in Texas have largely faded as the summer heat starts up. But it is always a welcome sign to see them come every year!

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Hi Indolent, Somehow I'd assumed that bluebells were just a European plant, but it's good to know that Texans can enjoy them too. Sorry that your summer heat is already fading them - not much summer heat here in England yet...

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You guys are too lucky in the UK....it is JUST spring time, right now, here in Maine....but the pictures are beautiful and hearing you Ig levels are where they should be is good nooz Paula :)

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Thanks Scott :-)

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love the photo, and the news! bluebells are so lovely.

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Thanks Sumok :-)

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