I have been on Ibrutinib nearly 8 years,last 18 months I have been getting constant infections mainly skin but now also orbital needing antibiotics to control it and they have started to give me periodically oral steroids. Watch me closely now as my WBC and lymphocytes are high . But just noticed in my last blood report to my doctor. The inclusion of ALP with the number 58 next to it . Never had this before they have said I'm a strange case as although my blood work is poor I have no obvious large b cells , large node's etc and as a result are reluctant to change treatment although they have said previously that I may need to switch to V and R. Back in four weeks and they have taken a CT scan which I wait the results But curious if the new blood work inclusion of ALP
Thoughts would be appreciated
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Immune globulin products from human plasma were first used in 1952 to treat primary immune deficiency. Intravenous immunoglobulin (IVIG) contains the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors.
IVIGs are sterile, purified IgG products manufactured from pooled human plasma and typically contain more than 95% unmodified IgG, which has intact Fc-dependent effector functions and only trace amounts of immunoglobulin A (IgA) or immunoglobulin M (IgM). [1] Initially, immune globulin products were administered by intramuscular injection. One of biggest advances with IVIG in recent years has been the use of sorbitol-based formulations as opposed to sucrose-based formulations, which allow for IV administration with fewer reactions. [2, 3] IVIG was initially shown to be effective in immune thrombocytopenic purpura (ITP) in 1981. [4] There are now multiple alternative IVIG preparations available for intravenous administration that have been approved by the US Food and Drug Administration (FDA) for the treatment of primary humoral immunodeficiencies and chronic immune thrombocytopenic purpura. Also, a liquid, pasteurized, 10% concentrated intravenous gammaglobulin preparation is as effective as a 5% concentrated preparation, making the concentrated versions more convenient to administer.
Thanks well my dermatologist is pushing for this , which would probably be rituxabnab,but at the MDT meetings heamotolgy are not sure and want to explore more options before they change my treatment my dermatologist actually phones me directly she is really annoyed at her finding of clear lymphatic infiltration in my skin biopsies is not being taken seriously.
Alkaline phosphatase (ALP) is a liver function test, used to check whether your liver is managing to process drugs without getting over stressed (transaminitis). My CLL specialists have always included them in my biochemical panel of tests, along with other liver and kidney function tests. Anyone on long term medication should have these checked fairly regularly in my opinion.
I am on Alcabrutinib for the last two months. Initially my platlets went down and WBC counts increased. Now it has stabilised. But my creatine level is slowly increasing and at present it is 1.42
You've been asked to drink 3 litres of water because your eGFR is typically estimated from your creatinine level, which can give a misleading result if you are dehydrated. See this post for more background on how eGFR may be calculated: healthunlocked.com/cllsuppo....
Whether that eGFR result of 40 is a cause for concern, depends on whether it was a once off low result. If you are well hydrated (urine light coloured) around the time of your blood test and you still get a low eGFR result, talk to your doctor about this.
The 3 litres of water is a simplification; you need to consume enough fluids to provide plenty of dilution in your kidney output, indicated by your urine colour. See this post for more information: healthunlocked.com/cllsuppo...
There are four tests that provide different insights into whether your liver is becoming stressed by supplements and medications; GGT, ALP, ALT and AST. Raised or lower results can also be from causes other than liver stress. Lab tests should come with reference ranges and test units. My pathology laboratory specifies the reference range for ALP as between 30 and 110 U/L. I would expect that your doctor would order additional, wider testing if there was any concern.
Raised levels of ALP are usually due to a disorder of either the bone or liver. If other liver function tests such as bilirubin, gamma-glutamyl transferase (GGT) or alanine aminotransferase (ALT) are also raised, this usually indicates that the ALP is coming from the liver. However if calcium and phosphate measurements are abnormal, this suggests that the ALP might be coming from bone. In some forms of liver disease, such as hepatitis, ALP is usually much less elevated than AST or ALT. However, when the bile ducts are blocked (for example by gallstones, scars from previous gallstones or surgery, or by a tumour), ALP and bilirubin may be increased much more than either AST or ALT.
ALP can also be raised in bone diseases such as Paget’s disease (where bones become enlarged and deformed), osteomalacia, in certain cancers that spread to bone or in vitamin D deficiency.
Cleveland Clinic has this to say about Transaminitis
Elevated transaminases are one of the earliest signs of liver stress, especially when both ALT and AST rise together. Damaged liver cells release these enzymes into your bloodstream. Transaminitis can indicate hepatitis (liver inflammation) before any other signs appear. Other liver enzymes, like alkaline phosphatase (ALP) and gamma-glutamyltransferase (GGT), are more suggestive of bile duct diseases.
I’m on ibrutinib for almost 7 years (december) I had blood count yesterday and my APL was about 118, after reading your post i’m a bit concerned but my doc didn’t say a word about it.
I have my IVIG very low, in august 1.09 and started immunoglobulin last month, yesterday they were a bit better 3.75
My doc said that i will change to R+V but not yet, we must wait until plaquets come down to 90, now 139 (but they always up and down).
That's interesting,and like my consultant not keen to change treatment until he really has to .Wish the NHS gave ivig infusions,I really think they would help me and I will suggest it next month. Didn't know we had to wait until platelets came down to 90 , mine were 194 in August and last month 120 .
Do you have any enlarged nodes etc ? As I don't which is puzzling then .
For skin infections The key is prevention and early intervention.
I started using an antibacterial soap and shower brush daily and more often if I've worked up a sweat.
Frequent washing of clothes, especially after sweating, sheets.
My dermatologist recommended using Hibicleanse twice a week with a wash rag to get everywhere. That's what we use in surgery. you can get it on Amazon.
When I see the first sign of a skin infection. I start applying bacitracin or some sort of triple anabiotic ointment.
Any skin breakdown on my feet or cuts or scrapes I keep thoroughly clean and apply bacitracin or some sort of triple anabiotic ointment on them immediately a couple of times a day.
Have tried all that but only oral antibiotics helps now . I have tried everything including hibiclense ,sea salt soap,tea tree oil ,aloe Vera you name it but as my doctor said this week it's my CLL and only new treatment will ultimately resolve my issues. And I think it's only a matter of time before that happens I really don't feel that great at present,so only surpise is not having enlarged nodes etc as I had lots before I started my 1st treatment ibrutinib, maybe it's the ibrutinib I'm still taking that's keeping them in check even if everything else is failing.Thanks
Before my first treatment nothing worked and I ended up closing my surgical practice because I couldn't safely operate on patients with all the infections in my hands.
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Newly diagnosed and hoping for a bit of advice
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Update.
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