Blood Clots After Port Placement

MommaZilla

So 2 weeks after my port was placed (1 week after my first chemo treatment) I started noticing some swelling and discomfort in my right arm. My oncologist had me to come in immediately for an ultrasound. They found 2 blood clots in my port and arm and was diagnosed with Deep Vein Thrombosis (DVT). Why did I get this? Doc says because "I had a port placed. Sometimes this happens." They gave me a prescription of Xarelto, a blood thinning medication, to reduce and eradicate the clots. (On a side note, this can be a very expensive Brand name prescription. But if you go to their website and apply for patient assistance you can qualify to get it for free.) Thankfully, we found it right away and we have not have any issues accessing my port.

But this was back on April 5. It is now June and I am still taking the blood thinners and still have frequent pain, swelling and discomfort in that arm. When this happens, I just try to rest it and limit the use as much as possible.

My question is how long does it take for the clots to go away and not have these symptoms? I'm just wondering if the medication is working. I would have thought after 2 months it would feel a little better by now. Plus there are a lot of additional risks to being on blood thinners, so I would like to stop taking them at some point.

Anyone else going though this?

Angtee15

Hi there! I am so glad your oncologist acted quickly and took your symptoms seriously. Definitely let them know you are experiencing similiar symptoms. I am no doctor but it seems to me the pain and swelling would be gone by now unless there is some underlying condition. Are you having any breathing problems?

Not port related. But I got bilateral pulmonary embolisms back in January 2016. Not good. I was on Lovenox injections until June 1st and was switched over to Pradaxa. I was told cancer just makes us more prone to blood clots. My hematologist wanted me on blood thinners at least until I finished cancer treatment. I ended up testing positive for factor five Leiden -- a gene mutation -- which really makes you prone to blood clots so I am on the blood thinners for at least another year.

Being on blood thinners is scary but the alternative is worse. Hugs and good luck!!

Jacklin

Hi MommaZilla, I am SO glad to read how quickly your oncologist responded to your symptoms, and good for you for reporting them so quickly too - you may have saved your life!!

I also developed blood clots after my port was placed. I was told that chemo 'makes you blood more sticky, so you're more likely to develop blood clots". I've been on Lovenox daily injections for the last 5 months with 1 more month to go. After 6 months, I stop taking the injections, that will also be 4 months after finishing chemo. Like Angtee says, being on blood thinners is scary (I've learned to give myself the daily belly injections now and it doesn't bother me any more), but having a blood clot move is scarier and can be fatal. While I'm not a doctor, I think that 2 months isn't enough time for the clots to dissolve and so having pain is to be expected, unfortunately.

Wishing you all the best.

cive

A little more than 10 years ago I also got clots in my port and arm and took warfarin (Coumadin). In my case, it was really the IV center's fault because they didn't take my blood work out of my port so it wasn't flushed out often enough. So I ended up doing 3 chemos in self said arm because port was blocked. It never went away. To this day I have poor circulation in that arm and have to have blood draws in my opposite (cancer side) arm. They did let me stop taking the warfarin after they took the port out.

MommaZilla

Angtee15 and Jacklin, thank you for commenting.

I do have really great doctors!!! I'm very lucky. I didn't think much of the swelling and tightness. My husband told me to report it but I was just so happy to finally feel good and be at work I didn't listen. They called me to check up and see how I was doing. I was so disappointed to half to leave work and go back to the hospital again. I waited all day there to see the doctor, get my scans, wait for them to review ... but I'm glad I listened. Your both right, it is a very serious issue and I'm very lucky we found it. I didn't realize it was related to the chemo but it makes sense. I'm just so over all the pain. And it's my right arm, so it makes everything difficult when I can't use it. I'm high risk of lymphedema on my left side, so I can't do too much with either arm.

This was a real wake-up to not assume anything is normal. We have watch out for everything now. And it can be really hard sometimes!!! I know I need to just take things slow. Allow my body to heal. Allow myself time. But when your doing treatments, working, married with two little ones – I want to be Wonder Woman for them when I feel good. But I know I need to take it easy as much as possible. Don't push. And try to rest my arms as much as possible.

Do either of you get additional sonograms to monitor the progress? I'd like to see if they're getting smaller because the pain is just as bad today as it was then. I opted for the pill vs the shot but maybe it doesn't work as good? I don't know?

Pipandor

I wish i had known that people with cancer undergoing chemotherapy are six times more at risk of clotting. The port in my arm was removed after 3 weeks because of the pain and slight swelling. I had to insist, because an arm Doppler did not reveal anything and it was only when the port was removed and a vein scan was performed that thrombosis in the subclaviculat vein was found.

I was prescribed self injected Fragmin for 6 months. Two months later, my arm is still slightly swollen and tight and the veins that appeared on my chest with thrombosis are still visible. I have no idea if the occlusion will ever resolve and will be asking the doctor next week about what can be done if it doesn't.

MommaZilla

Wow, I am so surprised how common this is. I had no idea about this increased risk. I'm curious why you opted for the shot vs taking Warfarin or Xarelto. Even though I've been a pin cushion for the last 5 months, I'm still terrified of needles. Was it a cost or insurance issue? Or is it a better medicine? It would have cost me $425. I applied for patient assistance on their website and was able to get it for free. The XareltoI is a pill. Pretty easy and I don't have any diet restrictions. Same risks with bleeding and bruising. I'm concerned because I still have pain and swelling just like day 1 so I'm just not sure if it's working. But that may just be my inner fears as well.

Angtee15

I didn't find out about the increased clot risk until after I developed EPIC pulmonary embolisms and spent a week in intensive care. Even though my oncologist knew I had shortness of breath she couldn't connect the dots and dismissed my symptoms because it only happened when I was going upstairs.

My hematologist preferred Lovenox injections while I was in active cancer treatment. Recently I was switched to a pill called Pradaxa.

KillTheCancer

My arm is still mildly sore where the clot was. They removed the port and put me on Eliquis for 8 months following the issue (luckily I had completed treatment before I got the DVT).

When I was 24, a day after I had my last child, I had a a Pulmonary Embolism (DVT that traveled to my lung), put me in the hospital for 10 days while they had me on Coumadin (Warfarin) and then several month of continued treatment. They chalked it up to the pregnancy, but I always remained cautious about anything that could increase the chance that it could happen again. I made sure I mentioned this when we were considering the port so they did some blood tests to determine if my blood was prone to clot and the tests showed that I shouldn't have a problem. I did though.

Cancer, cancer treatment and port all increase the chances.

Artista928

One of my scans showed a possibility of this so MO just told me to take low dose aspirin every day. Maybe ask to see if it's ok for you to do this as a prevention.

Pipandor

i was told told that 6 months of dalteparin (Fragmin) injections are the standard for DVT in patients with cancer and my oncologist expects the clot will resolve within that time frame. Not a big fan of needles either at this point but the daily injection in the belly fat is pretty easy. Too bad though that alcohol and blood thinners are a complete no no.