Hi there seen your post and just wondering how you got on? I also have lymphoma with svc obstruction 

Hello Nico1, 

I'm really sorry to hear you're experiencing SVC obstruction - I still remember living with it so clearly and it really is truly terrifying. 

My second biopsy did turn out to be conclusive, and I was diagnosed with diffuse large b-cell lymphoma, stage 3. I went on to have 6 rounds of chemotherapy (RCHOP), which I finished at the end of January. I then had my PET scan in mid-February, which showed complete remission, and then had 15 sessions of consolidation 'belt and braces' radiotherapy (as my mass was originally bulky). I'm now being followed up every three months. 

I hope that your SVCO symptoms are resolved as quickly as possible, and wish you all the very best with your treatment. 

Thanks for your reply! Great you are in remission. 
 

so basically I was having swelling in the face dizzy face going red when bending over visible veins on chest docs kept telling me I was fine which I knew I wasn't so I finially got listened to after 8 months and turns out I have stage 2a Hodgkin lymphoma. The minute I started chemo I had relief from the obstruction I have had my mid pet scan and was negative and no obstruction but my worry is that my veins are still so visible! Did you have visible veins from it?  I currently just had my 8th chemo today so 4 more to go

Hey, I have svc obstruction caused by lymphoma and have visible varicose veins all over my chest & stomach. I also have that head issue when bending over - face going really red & veins bulging and I can’t do anything that involves bending down for long. I’m in remission now and the chemo improved the symptoms but they’ve never fully gone away.
 

Glad you brought up the veins on the front body since they don’t look pleasant, but I don’t actually think it’s possible for them to be removed (at least for me, my svc is not in use after treatment; the varicose veins are instead being used), which is annoying. Don’t know if anyone else has the same experience of these veins still being in use after chemo and not the svc.

Yes I had that before I got dignosed the head feeling full face going red. Lips going blue dizzy etc it's not nice at all. That's great you are in remission!! So have you finished treatment? Can I ask what you mean when you say your svc is not in use anymore? And the varicose veins being used instead ? 

Yes, I finished chemo a few years ago.

In my case, the svc was blocked due to lymphoma but the chemo got rid of this svc obstruction, relieving most symptoms. Due to the svc obstruction, those varicose veins were formed (visible on front body)  so blood could still flow from heart, and acted as replacement for svc. Trouble is, even after chemo, the svc is still no longer used for blood flow - instead these smaller veins are still used. And since these veins are not as major as the svc, the head issues happen when bending over.

I’m not a specialist so my understanding might not be perfect, but that’s my experience. I don’t know if the svc can be reopened/reused after an svc obstruction, but I believe these varicose veins would go away if the svc was used again. It would be good to hear if anyone has actually managed to remove these varicose veins caused by svc obstruction post treatment.

Hello, that's great to hear you're in remission.

I had a stent fitted to my SVC, which immediately resolved all my symptoms and the veins went down and completely disappeared. I was expecting though that they wouldn't go and that they would always be visible (they were across my chest and also on my upper arms). I had my stent before I began chemotherapy, which then meant that my SVCO had been treated before I began chemotherapy. 

Has your team not explained to you why you still have some symptoms of superior vena cava obstruction when you've now finished chemotherapy and are now in remission?

Hello, that's great to hear you're in remission.

I had a stent fitted to my SVC, which immediately resolved all my symptoms and the veins went down and completely disappeared. I was expecting though that they wouldn't go and that they would always be visible (they were across my chest and also on my upper arms). I had my stent before I began chemotherapy, which then meant that my SVCO had been treated before I began chemotherapy. 

Has your team not explained to you why you still have some symptoms of superior vena cava obstruction when you've now finished chemotherapy and are now in remission?

Hey, great to hear you got rid of the veins!

I’m still getting svco symptoms since these smaller veins are being used for blood flow instead of the svc. Basically still have the svco even in remission. I’m trying to speak to a specialist but it’s hard right now with covid.

I’m only 20 so don’t know if getting a stent is the right thing at my age (taking medication daily & side effects etc.) but I’m not too familiar with them. It’s a shame there probably isn’t any other way to reopen the svc, but it’s great that it gets rid of all the veins and svco symptoms, as these are a pain.

I'm sorry you're still experiencing the svco symptoms - I didn't have any headaches when bending over but the veins were really horrible. I hope you manage to see a specialist before too long. Have your team referred you to anyone? 

Can I ask why you're still getting the headaches when the chemo got rid of the obstruction? Has your consultant explained why your svc isn't being used for blood flow despite it no longer being blocked? 

I am waiting to talk to a specialist, but it’s more difficult right now due to covid. Yeah, my veins are pretty disgusting too. Can’t take my top off anywhere because of it haha. I’ll find out for sure when I talk to a specialist, but I think the svco will always exist after the lymphoma blocked & closed the svc. Only way to reopen it is to either force it open if possible or use a stent. It’s weird because I would have thought the svco would be completely gone once the chemo got rid of the lymphoma, but apparently not.

Do you still have the stent in the svc? I think this might be my only option so would be good to hear your experience.

I hope the specialist can give you some clarity as to why the svc is still closed when you see them, even though you've finished chemotherapy. Do you have any other SVCO symptoms other than the veins and headaches/dizziness, if the svc is still closed? I had breathing difficulties and a swollen face, but I don't know if the breathing problems I had were due to my svc being obstructed, or because my trachea was also severely compressed. 

I still have the stent, which I've been told will remain in my svc permantently. When I went for my radiotherapy planning consultation, the radio-oncologist contacted the surgeon who fitted my stent to find out if it will be removed before I started radiotherapy. He (the radio-oncologist)  said that as the lymphoma is now gone, I don't need the stent keeping my svc open, making me think the stent must now be redundant. But then I haven't actually been told exactly why my stent won't ever be removed. No one talked to me about the stent once I started chemotherapy, they only checked with me how my breathing was up to my second cycle of chemo (which was predominately resolved by the stent, and completely resolved by the time I had my first chemo). 

I had bad face swelling when I was first diagnosed but the chemo got rid of this. Now just have the veins and face going red when bending over - since smaller veins are being used, the blood has trouble flowing to the head as quick. Not sure if it’s related to the svco but my hair is super thin all over too, which is unusual. Didn’t have any difficulties with my breathing before treatment.

I’ll find out what will happen to my svco but I’m thinking stent is the only solution if I am to get rid of it. I would have thought the chemo would get rid of the svco completely as the lymphoma obstructing the svc is now gone, but if you were told your stent is permanent it must be needed to keep the svc open. I didn’t do radiotherapy if that makes a difference. Do you have to take blood thinners with a stent in the svc by the way? 

I'm not sure about thinning hair being caused by svco, but I would have thought that wouldn't be likely. I'm glad you didn't have any difficulties with your breathing before you began your treatment. 

I don't think the radiotherapy would have made a difference ragarding the stent - I think my radio-oncologist was thinking that, if the stent was to be removed, it would make sense for it to be removed before I began my radiotherapy sessions. 

I did have to take blood thinners, but that wasn't because of having the stent. My mass, by pressing on my svc and causing the obstruction, also caused a blood clot in the vein. My consultant presribed me a 3 month course of blood thinning medication, which got rid of the clot. I was told by the registrar that as stents are foreign bodies, they can increase the risk of a blood clot, but I don't think people have to take blood thinners with a stent unless they do get a blood clot. The blood thinners I was on was definitely to treat the blood clot, rather than having anything to do with the stent. 

I'm also not sure if that's why the stent is permanent - I thought that it was because there isn't any way to safely remove the stent, and that they think it's not worth the risk as having it isn't doing any harm. But then my team stopped talking about the stent after I began treatment so that was just my understanding that it's not possible to reverse a stent. The radio-oncologist definitely said that now the lymphoma is gone, I don't need the stent there keeping my scv open, making me assume that my svc must now be open naturally of its own accord. 

Thanks for responding! I actually don’t know anyone that’s been in the same situation with svco so it’s good to hear your experience.

Yeah, the thinning hair probably isn’t caused by the svco, it’s just normally everyone’s hair grows back as normal after treatment but mine has stayed super thin for ages (so I’ve got no choice but to shave to zero guard).

Ah yes, I had to take blood thinners too during treatment to get rid of the mass but stopped once it was gone. I actually thought you always had to take blood thinners (or some other medication) with a stent to prevent blood clots but it’s good to hear that isn’t the case. This was actually my worry about getting a stent - I’m quite active and like going out so thought maybe the stent would stop me from being able to do certain things. If blood thinners aren’t even needed, is the stent much of an issue or it wouldn’t make a difference if it was there or not? 

You’re right, it’s probably a pain trying to remove a stent so not worth the hassle. Hopefully I can talk to a specialist soon then so I can figure out why I still have svco, as it is a very weird situation haha.

I'm very active myself and the stent hasn't got in the way or interfered at all. Luckily by chemotherapy didn't affect me at all really and I was able to be very active during my treatment too  and, even earlier on when the stent was needed and serving a purpose, it still didn't get in the way. I did some research after the stent had just been fitted, before I began chemotherapy, and people are just to avoid stenuous exercise for about a week after the stent is first fitted (though I wasn't told this by my team, but then I had been in hospital almost a week before I was discharged), but then they can go back to doing exactly what they normally do after that. I hope this helps and is reassuring. 

I really hope you manage to speak to a specialist soon to get an explanation as I know how unpleasant svco is. It defintley sounds a very strange situation too, so it would be good to get some clarification.