Blacks eyes without injury

[Porter01]

Had to go off treatment due to liver problems a few months ago. Have another ivig treatment soon. Just noticed I have bruises under and beside my eyes. Has anyone experienced that? No injury!

[lankisterguy Volunteer]

Hi Porter01,-

We are not doctors and most of us lack medical training. But that sounds like something that should have immediate attention from your hematologist to make certain you don't have low platelets or another blood issue that could be affecting clotting. Please seek medical care urgently to diagnose the cause. And let us know your status and results.

-

Len

[Newdawn Administrator]

Hi Porter,

Just as an off chance question, have you been taking fish oils or omega 3 fatty acids? They can cause blackness around the eyes. I agree with Len however, this is one for your doctor.

Newdawn

[AussieNeil Partner Administrator]

So you are off ibrutinib? Are you taking any supplements - like fish oils? How low are your platelets? If you share more about your situation, then you'll have a better chance of having more feedback from others who have gone through similar. That's why I encourage members to maintain their profiles: healthunlocked.com/cllsuppo...

I agree with Len and Julie that this is a question for your doctor.

Neil

[Porter01 in reply to AussieNeil]

Thank you Neil

I was only on Ibrutinib a short time. Only took the 420mg for 11 days then a month of 140 for a month and increased to 280 for almost a month. I had a lot of side effects including afib that was lasting 18 hours a day every other day. Ended up having to get an afib ablation. The acalabrutinib wasn’t approved yet for CLL so went back on watch and wait. I my blood count went close to normal for awhile. I use to get ivig every month but my Dr for years retired. I have a hard time getting ivig now. I have to be below 400 or if I have 2 active infections I can get it a bit above 400. The mew Dr asked if I was interested in a new research med that had very low side effects. I signed up for LOXO 305 and started in July 2020 I started having problems was getting really sick. Liver counts were up but not crazy so that took me off temporarily in November. After 3 weeks I was started again. I got sick the first day Took it for 3 more days when my complexion turned to yellow and was extremely sick. My NP said my liver counts were dangerously high. They wanted to put me in the hospital. 2 days later my counts were slowly moving in the right direction. I also had Mohs surgery for skin cancer on my forehead in Oct.

I’m scheduled for surgery for Nutcracker Syndrome next month to have a stent in to open up the vein. It kind of looks like some skin cancer has come back. My new Dr doesn’t understand that I need the ivig before I get really sick. Lymphocytes went into normal for awhile again but now going up. And now have black eyes. My retired Dr told me I should be seen monthly but I’m now scheduled every 3 months. It’s been a bit crazy 😜

There’s more….this maybe tmi in one message.

I’ve enjoyed reading many of your messages to others in the past. Thank you for reading mine 🤟

[AussieNeil Partner Administrator in reply to Porter01]

Hi Porter,

Thanks for sharing your challenging journey with CLL. Life with CLL has given you black eyes figuratively and literally. You are obviously a survivor! This is the kind of information that would help others wishing to support you, be able to better do so, but I can understand why you may not feel like putting that in your profile. Which leads me to ask, did you mean to post unlocked? healthunlocked.com/cllsuppo...

It's great that your liver health is improving and your CLL has remained relatively stable. Seems like you and BTK inhibitors are not a good match! There's still venetoclax and either idelalisib (or via clinical trial duvelisib) to try when your liver is up to it.

I know how tough it is to live without immune boosters that work - IgG and G-CSF in my case. I hope you can get through to your new doctor how important IVIG is to not only your quality of life, but survival in this buggy world.

Neil

[Porter01 in reply to AussieNeil]

Thank you again. It’s so great to chat with someone who understands.

I truly don’t know what unlocked is? Kind of embarrassed to say that. I just thought was on the right one 😜I can put this on my profile if it can help others … if I can figure it out. 🙃

[AussieNeil Partner Administrator in reply to Porter01]

This linked post explains the difference between locked and unlocked posting and how to change it to locked if that's your preference: healthunlocked.com/cllsuppo...

You've posted unlocked, which is how those with CLL find us. Posting locked keeps your post private to just our community.

This linked post explains how to update your profile: healthunlocked.com/cllsuppo...

I can lock your post for you if you have difficulty, but only you can update your profile

Neil

[Porter01 in reply to AussieNeil]

Well I just may need your help…I will check it out So are you on both? I will look at the links you sent.

[Porter01]

I have rarely taken them and when I did it wasn’t daily.