shereejoy
11 years agoMember
Recurring extensive blood clots
Hi everyone, I am really desperate for some advice. I have been in hospital a total of 3.5 weeks in the last 5 weeks with cellulitis of the right Lymphoedema arm. But only a weekish of being out of hospital I was admitted again as my lymphodeama arm was swelling worse then I have ever seen it.
Turns out I have a massive blood clot that extends from my neck down across my chest, under my arm and down the inside of my arm to the inside of my elbow!
This same thing happened to my left arm which wasn't affected by breast cancer in April 2013, I was at that point put on clexane 100's twice daily and confined to do so for a few months until I did some research that I could be on xarelto... So ever since have been on xarelto 15mg.
Anyway this clot in the left arm in April 2013 was quite extensive as well... Infact identical and the veins pertruded straight Away but I got alot of relief with clexane with the swelling right down to my fingertips, earlier, unlike this time... I just am not getting any relief from the swelling and infact my hand and forearm are bigger then they were this morning.
So I got this new blood clot confirmed on Monday by an u/s and was increased from 15 to 20mg of xarelto and twice daily injections of clexane 80's. The problem is our family holiday to NZ was booked for Friday ( yesterday ) and my oncologist wanted me to go as in the last month I have been given news of further spread of my cancer and chemo regimes have been changed. So on Thursday my OT lightly wrapped my right lymphodeama blood clot arm to give it a little stability for the plane flight.
All was fine on the flight and I was very conscious of moving my arm during the flight. Anyway Friday night I was actually able to pull the bandages off instead of unraveling as I would normally have to do, suggesting I may have lost some swelling, but unfortunately today I don't think so... Infact we measured this morning and tonight and my hand and the middle of my forearm are up 2cm.
I think my upper arm is to but because measurements were only done midway and I feel like I have pooling happening more above the inside of the elbow the measurements are not indicative of that!
So anyway back to when I was about to have a shower Friday night after taking off the bandages, I am noW seeing my veins pertruding across my chest and the top of my upper arm, all under my arm closer to recon scars and under my boob on my belly.
The worst part is on my chest as it's almost like bruising, it's just black and blue! I gathered it may of been from the flight or compression, but the aim of the compression was to maintain the size of the arm in the aim for it not to get any bigger on the flight as we don't want to disturb the clot i un-naturally, we want the clexane to do it's job and dissolve it before it breaks off.
So basically I am a little worried about these pertruding veins / bruising as nothing presented up until Friday night after the flight. I had assumed that my arm was so big from lymphodeama that I wasn't going to see these pertruding veins like last time as there were no underlying issues With the other arm when I had a clot last year, unlike this curent arm, as like I said lymphodeama plays a big part in this right arm of mine. Anyway I also am on permanent antibiotics for my holiday for the bad run of cellulitis I had.
The infectious diseases dr was happy to do this for me so I could enjoy my holiday without ending up in Hospital while on holidays in NZ.
He said if it keeps it dormant while I am away, then we will deal with it when we get back. So in the last few days I have been coughing and it is getting worse. I am coughing up a lung with yellow / green phlegm. So I am thinking of seeing a GP tomorrow as the antibiotics I am on for the cellulitis obviously isn't covering this chest infection?!
My current chemo is CMF and my mets are all in my lymph system in chest and upper sub- clavicle, under my arm from some lymph nodes left behind, also a number of spots in spine, lower back and hip, and also on the outside of my bowel in the lining of the stomach.
My oncologist hAz said if I don't respond to this chemo I am in a lot of trouble and had said he is trying to get me to Xmas but it's these chronic and acute conditions I have that run me down!
Is there anyone who has problems with extensive blood clots that can shed some light on this?
I want to continue this holiday with my family as it could be my last... And don't want to end up in hospital while over here, and I am afraid that I am so determined about that, that I may be being hasty?
Thanks so much everyone.