A update with some concerns

[2017cll]

Hi and thanks, now after 7 days I got another visit to the doctor and after I complain about some lumps that came after 6 days on Ibrutinib we send me to test again this time for LNH aggressive, I know this lumps are not related with CLL because they appear after most my lymph nodes got away and that was amazing in only 5 to 7 days, the biggest lump it have a bruising and on my knee a small one with bruising and star to appear on other places, so I ask if any of you have experienced anything similar, and I got more bruisings on other places without lumps, I got the information sheet of Ibrutinib, thanks for any reply.

[lankisterguy Volunteer]

Hi 2017cll,

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There are a variety of skin condtions related to CLL and especially Ibrutinib. Depending on which layer of your skin is involved and whether there is an accumulation of red blood or lymph fluid in various skin layers, they can appear differently. You should alert your doctor (I see you live in Portugal, so I don't know what is needed to see a dermatologist vs. asking you CLL doctor or GP for a diagnosis vs. a referral)

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Purpura en.wikipedia.org/wiki/Purpura

Purpura is a condition of red or purple discolored spots on the skin that do not blanch on applying pressure. ....They measure 0.3–1 cm (3–10 mm), whereas Petechiae measure less than 3 mm, and ecchymoses greater than 1 cm.

Bruising is subdivided into three categories:

1. petecchia - small, reddish, nonitchy usually parallel sided lines about a sixteenth to an eighth of an inch long. They are the smallest recognizable bruises and are usually seen in "small blood vessel bleeding" such as decreased platelets or nonfunctional platelets.

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2. ecchymosis - flat, typically "I don't remember banging into things" bruises. They are usually round or oblong and can have a green/gray appearance to them after a day or two. They can range in size and in color. One special category of these is called senile purpura because it is the type of bruise an elderly person can get after they lose subcutaneous support for their skin (i/e. wrinkling).

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3. hematoma - raised, dark blue turning into a yellow center.

These can be quite big, are always dark in color and over time can appear to "drain away" from the initial site (i.e., like a black eye) These are cause by damage to minor or major breakages in blood vessels such as venules or arterioloes (smaller in diameter than veins and arteries). In some cases, they will follow the outer lining of a muscle when the muscle tissue is damaged but the outer layer (fascia) remains intact. When you hear/read on sports news that a football player has a bruise to his thigh, think of one of these outlining the quadriceps muscle or the hamstring. They can take over a month to heal if they are deep within tissue.

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The longer they take to dissolve, the more possibility there is for them to become calcified and then the lump is permanent. If the calcified lump is in your elbow, for example, it can interfere with motion.

quote from Susan Leclair

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Len

[2017cll]

Thanks lankisterguy, I will let my haematologist know about and ask if we can refer to a dermatologist in the hospital and at list this lumps only give pain if I press.

[Ginajetta]

After a week or two after starting imbruvica I developed lump on the side of my leg and a week later the other leg. Apparently they were two hard bruises not much discoloring but went away. They were not lymph nodes.

[2017cll]

Thanks Ginajetta that much I could see that they are note lymph nodes, but the concern of the doctor and the biggest lump at the time give allot of pain is what got me concern so to say that side effects are present but with only 2 weeks and Ibrutinib is doing is job, all the best.

[Ginajetta in reply to 2017cll]

Mine were painful and pan got less bit tool awhile for lumps to go down. I think it was a deeper type bruise. Like a blood vessel broke deeper under skin and formed lump.

[Temida]

Dear All, I’m on Ibrutinib since Tuesday and I already have lumps on my legs and petechia.. They are painful, hot but after 2-3 days pain is settling and they look more organised. I hope this is not infection. Tomorrow I hope to see my haematologist , so will update you what he thinks. Keep well! ❤️

Temida

[Crowxyz]

Hi, Ibrutinib can cause weakening of the walls of blood vessels which cause bleeding under the skin and in the tissue of the body. I am covered in many lumps, which often result in bruising on the surface of my skin. Most are tender to press. My haematologist is unconcerned but I am worried. If I can feel so many under my skin and all over my body then what is happening inside my body, and in my brain? Some research projects mention patients dying of brain haemorages or strokes. I feel weak & exhausted and fear this may be due to low-grade but persistent bleeding in my body. Does anyone have info on this? Should I be concerned?Many thanks

CarCLL

[Ginajetta in reply to Crowxyz]

When I started om imbruvica in September 2018 i developed petecheas and had l arge lumps on both sides of my legs which took almost a year to resolve. The petecheas come and go and have gotten less. I may get a small lump bruise on my leg but it rarely happens now. Doctor was nit concerned. It was comforting to know others have had sinilar side effects