Superior vena cava syndrome.

[Beefcakesgirl]

Hi all,

My bf was diagnosed CLL in 2017. He’s been taking imbruvica for the last 3years with fantastic results. NED as far as the oncologist can say.

Here’s my new found fear....about 3months ago he developed a cough. He’s a woodworker so he attributed it to spraying poly without a respirator. (I know I know). I lectured and scolded. Still he has a cough nonetheless.

Yesterday we were sitting outside and his face swelled up. Like the left side of his lip swelled as if he’d been stung by a bee. When I asked him about it, he said that it’s been happening randomly for over a year or so. He said it’s not noticeable to others because he usually swells under his beard so we can’t really see it. He’s mentioned to me before about areas on his face being puffy but I couldn’t see how extreme it was, I regrettably dismissed it because his complaints would resolve quickly. We figured maybe it was from having his lymph node removed and lack of proper drainage???

So now my mind has combined the random swelling with the nagging cough and I’m recalling that about 8months ago he was stricken with crippling headaches. I mean he’s out for hours if not days with horrid stabbing pain up the back of his skull. (I thought arthritis type strain on his neck muscles and a pinched nerve because of his job and woodworking hobby) he’s had MRI’s and a cat scan. They showed nothing but they were not full body scans mind you.

I say allllllll that to simply ask....does anyone have any experience with superior vena cava syndrome? His symptoms are spread apart but if I connect them...sounds like a possibility. And of course it’s made my eyes fill with tears. Perhaps it’s a puzzle I’m just forcing together??? But I figured I’d ask here while I wait to call the oncologist for some blood work.

Thoughts, prayers welcome. 💜

[AussieNeil Partner Administrator]

There aren't any related posts, so it would appear that this is a rare combination with CLL. Do you think the possibility of a lung fungal infection has been sufficiently ruled out? There is an increased risk with treatment.

Please be aware of the risks of cyberchondria! healthunlocked.com/cllsuppo...

Neil

[Beefcakesgirl in reply to AussieNeil]

Thank you for your reply. I avoid cyber diagnostics as much as possible. But sometimes I fall prey to it. He hasn’t seen anyone about his cough. We haven’t had the greatest experience with Drs. So unless he’s sure he will get an answer....he avoids them at all costs.

[guzzifan]

Hi, if your bf's scans included the chest, they would have shown up any swollen nodes big enough to cause SVC syndrome. If your bf's CLL is under good control as you say, it seems very unlikely that he would have SVC syndrome due to CLL. But you need to talk to your oncologist about it.P.S. I suspect you may have got some replies if you had locked your post. Many people don't want to relate personal experiences in an open post.

Cheers. -Jim.

[Beefcakesgirl in reply to guzzifan]

I apologize about the locking unlocking. I’m not super familiar with this forum and honestly didn’t know that was a feature or a setting. And now I’m not sure how to change it. Hahaha.

Scans didn’t go to the chest. He’s been hit or miss with the doses of imbruvica. Sometimes takes only 3 a week. So it got me wondering if maybe those weeks were enough to allow the chest nodes to inflame enough to pinch the vessel but not enough to make the blood work spike? We’re only getting it every 3-6 months so I thought perhaps it was possible.

Just wanted to voice it out here so it wasn’t running through my head on repeat.

Thanks for your shoulder.

[AussieNeil Partner Administrator in reply to Beefcakesgirl]

I'm very concerned, no, make that extremely concerned, to read about your boyfriend's lacadasial attitude to his health. As a woodworker, he should be taking care to avoid breathing in wood dust. Fungal respiratory infections are an occupational hazard. See for example: ncbi.nlm.nih.gov/pmc/articl... Fungal lung infections are very difficult to treat in healthy people, let alone someone with CLL. It gets worse! As I mentioned earlier, there's an increased risk of lung fungal infections when on Ibrutinib treatment: ashclinicalnews.org/news/12...

Finally, your bf is playing with fire by not taking Ibrutinib daily. You are quite right to be concerned about this, because this is how to increase the risk of a resistant sub-clone developing, with nodes continuing to grow uninhibited, though hopefully in this case it's just his hit and miss Ibrutinib taking that is the cause. Please convince your bf that you want him there for a long time and the best way that he can do that is by getting his lungs checked out for a possible fungal infection and taking his Ibrutinib daily. His doctor needs to know about your bf's woodworking with inadequate protection.

Neil

PS This post explains the whys and wherefores of post locking: healthunlocked.com/cllsuppo...

[joanne17]

Woodworkers have their own set of problems. Don't rule out this vocation as being the cause. Just as coal miners get ill being in and around coal. It might be as simple as that. Why isn't he seeing his oncologist with these symptoms. again, there might be a simple solution but he must be forthcoming in his talk with his doctor.

[Beefcakesgirl in reply to joanne17]

We went to the onc for the headaches. They ordered scans but only of the neck and head. Nothing below the shoulders. And as I said, I’m just now connecting these issues. They were so random that it didn’t trigger anything fir me until I saw his lip ballon up.

We are calling for an appointment. I just wanted to chat it out here. I don’t tell him my hidden concerns so I use this as my support group.