Me again..my face is still swollen..hard blood clot
 

..the blood clot was hard they could not dissolve it and did put a stent over..

WHAT I DID NOT KNOW IS THAT I WOULD KEEP THIS STUPID HAMSTER FACE. I somewhat expected that the medication would get rid of the clot but I have since read that all it does is to prevent a new one from forming..(no one told me at the hospital!!!!! and here I am alone reading this)

Is that true then I have to live like that now? Is there anything any one as heard or something that could be done so I can have the dignity of having a normal face in last part of my journey, I would like people to remember me with my face. Will it go over time why has no one addressed this with me..is the only way to keep taking huge amount of steroids to bring the swelling down to "some" normality..?

My treatment should still go ahead so as far as my blood are ok despite the heparin, I am also yet to be randomised.

Re: Me again..my face is still swollen..hard blood clot
 

FOB,
Wishing you a little peace...for a change. You are really being tested, but hang in there, things are changing at a good pace,
Karen

Re: Me again..my face is still swollen..hard blood clot
 

As you quote, "under no circumstances should you lose hope"
Sounds like it is past time someone spoke with you about this matter. How soon can you get an appointment? Meanwhile, dont assume too much until you have more information. I am not familiar with the problem you are having but wanted to drop in and say keep the faith.

Re: Me again..my face is still swollen..hard blood clot
 

Hopefully this applies to your situation.

http://catalog.nucleusinc.com/displa...ph.php?MID=148

Re: Me again..my face is still swollen..hard blood clot
 

hi
I am a frequent lurker on this site and do follow the threads. I cheer the successes and grieve the losses. I am a 6 yr survivor and did log on infrequently way back in 06 when I was going through my treatments. I have been meaning to re register and stop lurking, today my heart breaks reading your post and it has made me sign on.
I am a vascular access nurse in Canada, that means I have a speciality in vascular access devices and things to do with vascular access. You are describing SVC syndrome, superior vena cava syndrome. Basically your big vessels in your chest that drain your upper body including your head have narrowed or closed off due to a blood clot I believe in your situation. It is like the big highway is closed and the blood needs to find another route. These other routes are called collateral veins, they take time to develop. Blood thinners help to prevent anymore clots from forming. Don't have intravenous in the arm on the side where your port was. With time the swelling usually gets better.
All the best
Nancy85 ( my new user name, when diagnosed at 45 I said that I planned on living till 85!!!)

Re: Me again..my face is still swollen..hard blood clot
 

Thank you for the support and Nancy for the explanations and Rich the research.

I have read that 40-80% of cancer patient who had major surgery go on developing blood clot. Preventative measure is usually sufficient to put a stop to that.

I had major surgery in December 2011 I cannot comprehend why preventative measure where not taken.

When I was NED: If I had had a PET scan in 2009 (when I told them I could feel something in my breast again) or if the CT scans of my checks had picked up the local recurrence (remember it never came back in the liver I did private extra treatment i.e. laser) and they had not missed it twice on the CT scans I would still be NED.

The radiologists realised it was there once I discovered supraclavicular nodes growing) and then compared to previous scans to see were this was coming which showed that it had been there for at last 10 months.. initially small 1cm in the mamary gland close to the breast scar.. This could have so been zapped

They refused to give me radiotherapy of the breast in 2007 (because they were so sure that it would be back in the liver)

When I came to see them with an increased node in supra clavicular nodes in 2010 I was sent home and told come back if it grows.

I have been busy fighting but I I think it is time to sue my hospital for having made me suffer so much having taken away every chances to fight against it and simply doing (far more expensive) crisis management.

Re: Me again..my face is still swollen..hard blood clot
 

Knowing you, and your own sense of justice in your treatment of others, it is all the harder to bear. Do you have someone close there where you are who is helping you with any of this?

Re: Me again..my face is still swollen..hard blood clot
 

Hi FOB
I can hear your frustration and totally understand how hard this all is. The issue of preventive anticoagulent therapy seems very variable in the NHS. Some surgeons absolutely insist on a full 14 days post op treatment yet others do nothing and even on the same unit!
Hang on in there though as it sounds like your body will eventually drain the fluid away naturally from your face.Wonder if sleeping in a more upright position may stop pooling of fluid overnight?
When will you know the outcome of the randomisation??
Ellie

Re: Me again..my face is still swollen..hard blood clot
 

Ellie yes but also simply being given a serious nurse talk about it a leaflet and looking for symptoms, My eye had been puffy for wekks, I was wondering if because my puppy was sleeping in my bed, If I only new it was a symptoms, the clot could have been addressed then then i noticed my cheeck I was wondering if I was not putting on weight but the scale was the same.. I remember asking (too really nice) friends who did not think my cheek looked weird, and another humm maybe a little bit.. That was few weeks ago.. then the trial..

A talk ad a leaflet of the danger would have changed things for me I think.

Anyway no point looking at it now but really..

It should be this Wednesday

Re: Me again..my face is still swollen..hard blood clot
 

FOB
Will be praying that Wednesday brings the news we hope for.There are so many options emerging that are less toxic and hopefully will get approval in Europe very soon.
Please let us know.
Ellie

Re: Me again..my face is still swollen..hard blood clot
 

FOB,
Hang in there. It sounds like you can count on having your lovely face back very soon!
I'll be praying, sending good vibes and crossing my fingers and toes for you on Wednesday! I so hope you get exactly what you need to get your life back where you want it.
Denise

Re: Me again..my face is still swollen..hard blood clot
 

I hope you get some relief and some help for this problem soon.
By all means don't give up.
Hugs

Re: Me again..my face is still swollen..hard blood clot
 

fullofbeans,

Hope to hear from you soon.

Amelia

Re: Me again..my face is still swollen..hard blood clot
 

Amelia and all of you , things are good I first want to say that it is hard to be showing happiness here when I do not know the outcome is for Michka.. i do not know what to say to randomisation, I have this sadness for the women who will not receive it for the chance they wanted and are being denied, and maybe it will not help anyway but a chance..and perhaps one has to believe that the other option was actually the option that was right for them.. and i almost wanted to not say today, I actually found out yesterday.

But my news are good: My blood are good despite taking heparin and will receive first TDM1 tomorrow.

My face is still swollen and things are not improving if anything getting worse. But I talked to the radiologist that did install my piccl line today he is in the team of the one that put my stent (but done at the trial centre another hospital), he said the stent should have kept the vein more open (he could do the test there and then to see what was happening). the vein is still too narrow despite the stenting and not all the "liquid" is going through it and being pushed out via another. Another stent could perhaps being put over my open it more and get my face back they will talk. I will go straight from the trial to my hospital I did not want to delay treatment.

Today was a good day for me.

Re: Me again..my face is still swollen..hard blood clot
 

Thanks for sharing the wonderful news!

Most of us on this Board have been through ups and downs. We always want to encourage each other and be considerate. But we also definitely like to hear good news.

Re: Me again..my face is still swollen..hard blood clot
 

FOB,

So sorry for your trials and tribulations. So frustrating!

I can totally understand your unhappiness about your face.

Hang in there!

Re: Me again..my face is still swollen..hard blood clot
 

Thanks all. things are on the right track I am getting another intervention on Tuesday now to open the vena cava more and hopefully this should wave the face problem good bye, I am hoping.

I am having not much side effect from my first tdm1 and yes I am so relieved this is finally happening soooo relieved.

I am having a nice little break from having to sort things and the stress. I have planned week ends with my friends and contacted old Uni friends who are going to come visit. Some gardening and some healthy food, I have making a lot of raw food (plus fish), sprouting and beautiful salads, things are more peaceful and it is nice.