Swollen eyelid, face and neck..in the morning
 

For the past few weeks when I have woken up first with eyelids lid swollen, then I felt my cheek were bigger (but was not sure) and this morning my neck and shoulder blades (partcularly one side) are all swollen.. It is getting worse pretty quickly and I do not know what it means.. It really makes me look rather strange. I am thinking blocked lymph nodes and bad drainage..it get better during the day.. any of you have had something like that?

Re: Swollen eyelid, face and neck..in the morning
 

Sounds like a drainage problem. Probably need to call your doctor Monday, just to get some reassurance and possible solutions.

It must be quite uncomfortable and scary. Rest well and know that we are thinking of you.

Re: Swollen eyelid, face and neck..in the morning
 

Sorry to hear you are having these strange symptoms. A phone call and visit first thing to your doctor is in order! Praying you get information and relief on Monday.

Re: Swollen eyelid, face and neck..in the morning
 

Hi K -
Not fun, such symptoms.

I had something like what you dwescribe with my blocked veins from my port-a-cath.

Do you still have a port? If so, you may want to have a CT Venogram to check for blockages.

My port was working just fine, but my veins were not liking having a foreign thing running through and starting to surround it causing some serious narrowing of my vessels.

Mine also got better as the day wore on. Affected my eyes as well.

Re: Swollen eyelid, face and neck..in the morning
 

It has been dx as superior vena cava obstruction which needs to be comfirmed at 9am by a ct scan..

Can be life threatening i wonder what it may mean for the trial..

Re: Swollen eyelid, face and neck..in the morning
 

Dear K -

Your symptoms sounded similar to mine. My vena cava was quite narrowed and an angioplasty was performed to open the passage with the balloon.

This should not affect the trial unless they need to remove your port and a port is required. I finally had mine removed, and now if I ever need another port it will have to be of the trans-thoracic type used for children.

The angioplasty was a day procedure and I had no after effects, besides my bodily fluids being able to drain!

Re: Swollen eyelid, face and neck..in the morning
 

Hey FOB!
Sending prayers and good vibes your way! Keep us posted.
Denise

Re: Swollen eyelid, face and neck..in the morning
 

Sarah, Hoping and praying all goes well today!

Re: Swollen eyelid, face and neck..in the morning
 

As it turn out I have also a blood/cancer clot. So they plan to put a stent on tuesday then they want me to stay on heparin for 5 weeks ( not allowed on TDM1, I checked) so they said two weeksmin and aspirine (<235mg is allowed don't know if that enough). The scan of the chest was done at 13 days interval and there are new tumours in the breast and the biggest tumours has grown from 4.7 to 5.1 and now my supra clavicular node are growing to 2.2 the biggest..

I try not to think about anything I have told them that I wanted a brain scan that I am getting on Monday, so i can see if it is worth continuing fighting to be on the trial and if I am not excluded anyway because of brain mets, I pray pray pray that I get that break and get to have a summer in relative health and mobile.

Love, hope and life

Re: Swollen eyelid, face and neck..in the morning
 

Sarah,
Well, that is a nasty little detour eh? The hold due to being on heparin is important, as TDM1 does cause significant drop in platelets for most people - they do recover but you don't want to mess around with that plus blood thinning agent. But it sounds like this will not preclude you from getting into the trial, just delay.

Re the brain scan, I am hoping for the best for you on this - remember your noggin was relatively protected by the tykerb/xeloda for a while. So lets expect that there will be nothing of note in your head. Worst case, in some TDM1 studies might not be an exclusion criteria but might delay start. One step at a time tho.

In the meantime, I agree with your approach, try not to think too much! (ha ha)
Good luck on Monday

take care
Chris

Re: Swollen eyelid, face and neck..in the morning
 

Sending good thoughts your way - try to take it a minute at a time...things just have a way of working out and don't forget to breathe. We are with you!

Re: Swollen eyelid, face and neck..in the morning
 

Sarah - my thoughts are with you.
A xx

Re: Swollen eyelid, face and neck..in the morning
 

Dear K - (She is not Sarah, even though there is a similar dog at the end of her posts)

So sorry that they also found something else. My vascular surgeon put me on PLAVIX instead of a blood thinner.
Could you see if that would be allowable? Or is it due to the clot thing that you need the Heparin?

I have been using 325mg aspirin now for years, ever since my narrowed/clotted vena cava. Take it every night. It seems to do the trick, since I could not tolerate the Plavix for very long.

Re: Swollen eyelid, face and neck..in the morning
 

I have some good news! my ct head scan is clear, thank you thank you thank you. Tomorrow stent and Steph, i don't know about plavix..I will ask I think they will be more aware of what is up once they go in. Today is good news. tomorrow another day. Maybe 235mg aspirine may be seen as a suboptimal treatment but still acceptable.

And yes not sure where this Sarah name came from..but I appreciate the thoughts and kinds words

Right I need to sort puppy looking after for tomorrow I not sure the attachment of file will come up but here is a pic of her taken yesterday

Re: Swollen eyelid, face and neck..in the morning
 

I'm sorry about your the blood clot. Heparin and then later Coumadin (Warfarin) will be needed for that. I had a blood clot after my breast surgery as well. I will be praying for you and sending hugs your way.

Re: Swollen eyelid, face and neck..in the morning
 

Good luck FOB for tomorrow. I will be thinking of you and hoping the NHS provides you with a really good service.Please let us know how it goes.Hope your home soon to your lovely puppy

Ellie

Re: Swollen eyelid, face and neck..in the morning
 

I'm so sorry FOB! The Sarah thing was my fault! I wasn't sure what everyone was talking about with the Sarah name until I looked back at my post to you. My niece Sarah was over at the time and I absentmindedly put her name there I'm so Sorry Fob please forgive me. I follow you and care a great deal for you.

Your friend,

Nancy

Re: Swollen eyelid, face and neck..in the morning
 

Again some goog news!!

I had the stent (2) put in yesterday and they did not do a thrombolisis as the clot was hard which mean they could mesh it over (over something like that). They are aware of my situation with regards to the trial and they said just one week heparine and 150mg aspirin (allowed) after would then now be prescribed!! the fact that it was hard made the difference allowing them to do that, thank thank thank you thank you..

I want this summer, I want the drug I am hoping for to work, have a break from all the treatments I have had that were so hard and getting back on track thank you all for your support