Treatment with immunoglobulin

[jovialsteve]

I listened to Inside Health, a documentary series on BBC Radio 4, a couple of weeks ago. In it it described a patient who had had constant recurring infections over many years and a general feeling of malaise. The doctors had eventually diagnosed "Common Variable Immuno Deficiency" and had prescribed a monthly armful of immunoglobulin. The patient was now doing well. Interestingly patients with untreated CVID often went on to develop NHL.

The patient on the radio sounded presented a medical history similar to mine but I now have SLL/CLL. I have just had my second bout of chemo (Bendamustine) and 6 months after my last treatment I am feeling lousy. As I had a regular appointment with my hematologist the week after the programme I decided to ask about the immunoglobulin levels in my blood. (I am normally given just the cell count.) I have very little immunoglobulin and having discussed it with her colleagues she has decided that I can have an armful every 4 weeks to see if it improves my overall health.

I would like to know if anyone else has had this therapy. I would have liked more reassurance that my suppositions based on a 5 minute clip in a radio programme were sensible but my hematologist told me that she had never heard of anyone receiving it but as I wanted it I could have it.

Thanks for your help

[geoval]

Hi, I was diagnosed with CLL 8 yrs ago. Over the past 7 yrs or so I have been having pretty much constant chest infections. This year I had a bout of pneumonia which knocked me for six. Following this my haematology consultant arranged for me to start four weekly infusions of Immunoglobulin. So far ( had three lots) I feel lots better although I would swear that I can feel the effects wearing off after 2/3 weeks. Next appointment is one week from now and he is going to review dose and frequency. I will keep you posted.

[Cllcanada Top Poster CURE Hero in reply to geoval]

IVIG has an average half life of about 21 days, so it does cycle, high/low... You might ask about the weekly subcutaneous version. It is not used too much in CLL , but there are patients using it with good results, I have heard... it tends to keep levels more constant...

[jovialsteve in reply to Cllcanada]

Thanks for that information. I will talk to my consultant about it.

[jovialsteve in reply to geoval]

It sounds pretty positive. Good luck with the consultant.

[MartyR]

Steve,

Last year I had B + R treatment for CLL under a Clinical Trial (July thro to Dec '13. - see also my B + R posts.)

During this time my immune system dropped (Neutrophil Level.)

About half way my Chemo treatment my Consultant recommended IVIG infusion every four weeks.

This IVIG continued thro the winter until April / May when my N levels had risen to a reasonable level.

I see my Consultant in three weeks when I will ask him about further IVIG treatment for this winter -- if my Immune System is low!

Of course everyone is different - but I had no significant side effects from the IVIG (Or for that matter the B+R.) - and was able to drive myself to and from the daycare centre to receive both infusions.

I presume, like me, that you have had the Influenza Jab - for this period of the year?

If you want to ask me anything else -- just write.

Marty

[jovialsteve in reply to MartyR]

That's very interesting. Unfortunately, my consultant is very busy so doesn't give much time to each consultation so I haven't had much information from her. I have had the flu jab for the year and they are testing me to see if I need a pneumonia jab. I found B and R quite harsh - much harsher than FCR and not as effective so I am hopeful that this new stuff will buck me up.

[Cllcanada Top Poster CURE Hero in reply to jovialsteve]

Baxter has a new monthly subcutaneous Ig, called. HIQVIA

baxter.com/press_room/press...

It is approved for use in CLL by the EU, but not yet for this application in the U.S.

[Mutly]

Watch and wait for 12 years which the lead to 6 months of chemo from Sept 2011 to May 2012. A couple of months of feeling well and able to have a holiday, unfortunately from Nov 2012 through to late summer 2013, numerous infections of various degrees which lead to monthly IVIG transfusions. About to have 11th treatment today, slight side affect on first Infusion only. Feel great u til about week before next one. Came as a surprise therefore on last consultants check to find that require more treatment. End of month about to start Bendamustine and 1 other to be discussed next Monday which will mean 3 days at hospital not sure if it is fortnightly or every 3 weeks whilst continuing with monthly IVIG. Lots of visits then to hospital but if it keeps it at bay it is all worth it.

Keeping positive is the key and avoiding anyone with known infections which can be difficult with Grandchildren as like to see them frequently. Interesting too Granddaughter a it to have live flu vaccine and have been advised to not see her for about 2 weeks as unsafe to be around live vaccine the same as the Shingles vaccine.

[splashsplash]

I recently went on holiday with my family including four young children. One by one everyone came down with a stomach bug except me who you would expect to be the first victim as I was recovering from chemo.

I think it was all the precautions to protect myself against infections that I've learnt over the years since dx of CLL.

I had my own special cup, my own water bottle, my own towel/flannel, my own soap and toothpaste, I didn't share any food, frequent hand washing and I practiced social hugging not kissing.

All these precautions can make you seem stand offish but people don't take it personally if you explain your behaviour.

[jovialsteve in reply to splashsplash]

In an attempt to ignore having cancer I just carry on as normal at work and at home. As I am a teacher I come into contact with a lot of kids with various infections. Fortunately I teach 1 to 1 so I don't have to have time off when I am feeling crap and it cheers me up to see my students. Your precautions to avoid infections are obviously sensible and I am going to start implementing them and get the students to use hand gel and sterile furniture wipes between lessons. You have definitely made me think. Thanks for your response.

[anaturallearner]

I had two serious infections in the months before receiving treatment for CLL at stage IV(C). During the second, pneumonia, I received a dose of IVIG and I believe this helped the antibiotic get on top of the infection. During and after treatment for CLL (8 months of 3 weekly cycles of cyclophosphamide, rituxan, prednisolone with an antifungal and some neulasta) I had monthly infusions of IVIG. I am in partial remission and receiving 12 weekly infusions of rituxan. We stopped the IVIG a year ago soon after treatment stopped as I had a hives reaction to one brand and got the rigors while being infused with another. Since then my immunoglobulin levels have remained low and I have had trouble shifting colds and coughs over winter but nothing serious or needing treatment. And my hematologist is happy to keep me off IVIG for now. It's expensive to make apparently (makes sense given what it is) so I guess it's something they don't widely advertise as a treatment.