Imbruvica and neutropenia?

[kathymac52]

My husband just started Imbruvica this week. We go for our labs on Monday. He has been neutropenic for 3 months now....his neutrophils are at .5 right now, and his WB count is at 4.7 and platelets are low at 74...his lymphocites are at 84%....we were told his numbers may get worse before they get better.......but he is so severely neutropenic I am terrified. Anyone else deal with this??

[PlanetaryKim]

HI Kathy. I don't think his neutrophils will get worse. I have been on Imbruvica 6 months now. My neutrophils were 0.3 when I started and had been that low for a very long time. They rose to 1.2 in my first 2 months on Imbruvica, but they won't rise higher than 1.2. This is because the Imbruvica itself is preventing them from rising higher. My neutrophil improvement is exactly what my CLL specialist expected it to be, so the same may occur for your husband.

In other words...Yes, Imbruvica can suppress neutrophils somewhat, but it doesn't suppress them as much as untreated CLL at high infiltration does.

best to both of you,

kim

[kathymac52 in reply to PlanetaryKim]

Thank you....so this means he might not be in the normal range ever??? We want to be able to go on vacation some day....have not done anything since last July.............he is going crazy with not planning anything...

[PlanetaryKim in reply to kathymac52]

It could maybe mean that - neutrophils never again in normal range. But my understanding is that so long as a person doesn't fall below 1.0, you're 'pretty safe'. You can go out in public, etc. But be diligent about hand-washing, not eating off communal appy platters at parties, not being around sick people, etc. Some would say no raw food. I just wash my raw food very carefully and thoroughly (fruit, lettuce, etc).

It's possible some people on Ibrutnib are able to keep their neutrophils in normal range. I don't know. I have not been sick at all - even when my neutrophils were so incredibly low. I was hospitalized with febrile neutropenia briefly. But no one could find any evidence of infection. I think the erratic fever was just part of the CLL symptoms, not infection.

Many people here are far more worried about neutropenic protocols than I am. I am as cautious as I can reasonably be without letting the precautions destroy my lifestyle and diet.

kim

[AussieNeil Partner Administrator in reply to kathymac52]

An investigation into what was causing my neutropenia led to my CLL/SLL diagnosis and I've been living with Neutropenia for over 9 years. I haven't had a neutrophil count over 1.0 for over 4 years and it has regularly been below 0.5 recently. Years ago I had to quit taking public transport and mixing with large groups of people in close quarters without wearing a mask, or I'd end up with colds lasting between a month and three. However I have been able to travel with the support of subcutaneous IgG, provided I take precautions, such as staying in places where I don't share a bathroom, treating any breaks in my skin promptly with Betadine and knowing the location of the closest hospital.

Your husband may not need IgG if his levels are adequate. I ended up on it after a 9 day stay in hospital from lymphangitis that put me at risk of neutropenic sepsis. My doctor suspected the lymphangitis arose from an insect bite which I never felt. Provided you are able to get to a hospital promptly for IV antibiotics - I'd suggest no more than 12 hours away (but check with his doctor), you should be able to travel. You just need to be very, very careful with regard to your husband exposing himself to possible infection (including from food and drink). Untreated neutropenic sepsis has a high fatality rate. From the Prognosis section of en.wikipedia.org/wiki/Neutr...

"If left untreated, patients with fever and absolute neutrophil count <500 have a mortality of up to 70% within 24 hours."

healthunlocked.com/cllsuppo...

Neil

[kathymac52 in reply to AussieNeil]

That is probably the scariest statistic I have seen yet.....

[scarletnoir in reply to AussieNeil]

Wow! I had no idea you'd had such a rough time - I think I knew you were on W&W, which to my untutored mind equated with low-ish risk (if with lifestyle problems).

I had 9 days in hospital with a neutropenia-linked infection immediately after my first chemo session, but as the treatment proved successful, my counts have been pretty good since. Having to live continually with that sort of risk must be really wearing. I do hope that the treatments you receive will allow you to return to a more normal lifestyle in the longer term.

[Cllcanada Top Poster CURE Hero]

He will be fine, but might require injections at some point to boost levels...

Bacterial infections are the main concern... I recently went though a few weeks with zero neutrophils.. but I won't bore you with the details...

He needs to be really careful about food and food handling... no deli, no restaurant and no buffets...

Generally everything should be pasterized, including honey, and no blue cheeses.. etc. all vegetables cooked...so no salads, particularly bagged salad.

Wipe your kitchen down with bleach AND hydrogen peroxide wipes... every few days.

Don't use public transport, stay well away from crowds and small children.

Here is a good neutropenic diet there are many more on the internet..

upmc.com/patients-visitors/...

~chris

[kathymac52 in reply to Cllcanada]

Thanks....I have been doing all of this for three months.....we have not been out to a restaurant in 4 months...(sigh)....I am like a crazy woman worried about infection....so far, so good...he wears a mask if he needs to be at a meeting....He misses his greens, but I cook all his vegetables....( but we do see our grandchildren only if they are healthy....can't stop living)

[kathymac52 in reply to kathymac52]

What injections are you talking about??

[kathymac52 in reply to Cllcanada]

He is eating yogurt....and this website said not to??? What injections are you talking about?? We have followed everything except yogurt and deli meat which he loves on his sandwiches. I am an excellent cook, and very careful about cross contamination etc....

[Cllcanada Top Poster CURE Hero in reply to kathymac52]

The injection is the G-CSF granulocyte colony stimulating factor... neulasta or neupogen.... commonly.

Yogurt is fine most is pasterized, probiotic yogurts maybe not great.

Packaged deli meats may be OK, but not stuff sliced in the deli... too much chance of listeria, etc...these things lie in the cooler for days...

[kathymac52 in reply to Cllcanada]

Thanks, I will change up the deli meat....and we were told he could not have neulasta unless he had his chemo......he did have some after his BR infusions....and they did raise his levels, but our team said those were false readings....because they just masked his symptoms...

[kathymac52 in reply to Cllcanada]

He is also 11q deletion with ZAP 70 positive....which makes him more high risk....

[fell]

Hi Kathy,

My neutrophils count went from 0.0 to 1.4 after a month on Ibrutinib.

Best,

Fell

[kathymac52 in reply to fell]

I am hoping so......this is so hard...

[fell in reply to kathymac52]

I know how hard it is to be the one who is not sick 😕 My husband had thyroid cancer and I looked after my ill parents.

My platelets are at 58 and wbc higher than your husband’s, but I’m doing well! I was so tired, had an enlarged spleen and could barely make it up the stairs without stopping for a breath before I started Ibrutinib. I am now back to my normal active self after almost 6 weeks on this miracle drug. Try to keep positive and don’t worry. Make sure that he takes on a neutropenic diet and stays away from people who are sick! Everything is going to be ok 😊

[kathymac52 in reply to fell]

I hope so......he is not that tired, and the BR chemo did shrink his spleen and appendix, and I feel like I have aged 10 years in 10 months with the worry....he has not been in the ER for any infections, etc....so not worrying is crazy hard. Thanks fell.......I need the support more than ever.

[kathymac52 in reply to fell]

He is also 11q deletion with Zap 70postive....sigh....more high risk CLL

[fell in reply to kathymac52]

The good news is that Ibrutinib and the other targeted therapies work well with traditionally poor prognostic factors like 11 Q. I am trisomy 12 and Unmutated.