Has anyone experience face and neck swelling while taking Imbruvica?

[lizfuccillo]

I have been on Imbruvica for 9 months. I had a rocky start and encountered many side effects (nosebleeds, bruising, severe heartburn, difficulty swallowing) over the first 6 months. As my body adjusted to the medicine most of the side effects went away. However yesterday I experienced significant swelling of my face and neck. My doctor advised me to go to the ER immediately as he suspected the swelling could be caused by blood clots. The CAT scan showed no clots (thankfully). Has anyone else experienced anything similar?

[lankisterguy Volunteer]

Hi lizfuccillo,

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I'm surprised that no one else has replied to your posting in 17 hours, so I will try to provide some suggestions for you to explore.

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Your experience with changing side effects is not unusual. In the event of more serious side effects, some CLL experts will pause Ibrutinib for a few days to detemine whether a specific symptom is caused by the drug or another cause. However that should be done cautiously with full support from your doctor, as it may affect your long term PFS (Progression Free Survival) or OS (Overall Survival).

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The regular readers here and on other CLL sites know that any mention of odd symptoms gets a post from me about testing for funguses and re-activation of common childhood diseases, so here it is again.

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"Don't assume you have a single disease (CLL) causing your symptoms, you could have a combination with a virus, bacteria or fungus contributing to the issues."

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We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on immunodeficiency

mutated-unmuated.blogspot.c...

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In 2010 I contracted Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time.

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In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 (an infant disease called Roseola) was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed my fatigue entirely.

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I was on Idelalisib from Dec 2012 to May 2015 and then switched to Ibrutinib until Feb 2016 and had full strength in my legs, I was able to ski like a 40 year old (at 68 years) but after being off the drugs for 8 weeks my ALC was only 43 but the muscle weakness in my thighs returned. We tested for all the above causes but cannot find a smoking gun beyond a drug resistant HHV-6 at log 4 x normal. I've been on Acyclovir daily since 2012, but that has no effect on the HHV-6.

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Since I recently had a full round of Prednisone and now starting Venetoclax, Dr Furman currently has me taking a prophylactic medicine Atovaquone to prevent my contracting Pneumocystis. Here is what Wikipedia says it is: Pneumocystis pneumonia (PCP) is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii.[1]

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Pneumocystis pneumonia is not commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer undergoing chemotherapy, HIV/AIDS, and the use of medications that suppress the immune system

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So is it CLL and an opportunistic infection? You may need to see an infectious disease doctor, perhaps one that treats other immune compromised conditions like HIV, MS, etc. to get an effective work up for these potential other infections.

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Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

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Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your issues, you could have a combination with a virus, bacteria or fungus contributing to the symptoms.

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And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

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Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications.

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Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

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Len

[lizfuccillo in reply to lankisterguy]

Thank you so much for your input. I feel more equipped now to have a detailed discussion with my doctor about avenues we should pursue to identify potential root causes of this rather unusual symptom. I really appreciate you taking the time to respond to my inquiry. Be well and stay safe.

[MN1999]

I have been on Imbru for several months --had to take a break due to low ANC -- but back on now. I had a painful swelling on one side of my face and under my jaw which the oncologist didn't think was too worrisome. I was thinking that it possibly was a blocked salivary gland since it eventually responded to warm compresses and gentle massage.