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Blood clot in neck

Skittles
Posts: 17
Joined: Mar 2010

Has any one had a blood clot caused by their port? I was never told to look for an infection or signs of a clot. I woke up one morning with a vein bulging in my neck. I could also see veins spreading out from the port. I googled port and infection, and thought it could be a clot. I went to the doctor, had an ultrasound and they found a clot in the jugular vein. I am now on coumadin and every day and for 8 days giving myself a shot of Arixtra. I think this has scared me more than the cancer and treatment itself.
Just another bump in the road to recovery! The way I look at this is I can get thru anything now!

SueRelays
Posts: 489
Joined: Dec 2009

Oh my gosh...that is so scary! Glad you saw it and got it taken care of immediately.
After my lung surgery, I wsa having some really weird pains in my chest, ended up going to emergency. They rushed me in as they thought I had a blood clot in my lung. When they explained what it could do.....scared the crap out of me! Luckily it wasn't one, but now I'm always worried about those!!!!

z's picture
z
Posts: 1271
Joined: May 2009

Hi Skittles,

I have not had this experience, I am so glad you went to the dr quickly. I have read where ports may clog, and thats why you have to have them flushed. That is really scary, and for those of us who have ports its a good lesson for us to be aware of the possiblity of blod clots. Sue I'm so glad it wasn't a blod clot in your lung. My mom had a blood clot in her lung, when she was about 37, and she had severe pain, and thats why she went to the dr. They attributed her blod clot to birth control pills. Wow, the things we learn from our fellow survivors. I wish you both well. Lori

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mp327
Posts: 3109
Joined: Jan 2010

Hi Skittles--

As we all know, blood clots are nothing to mess around with, so I'm so glad you got this checked out immediately. Are you now in treatment or finished with it? If you are done and no longer using the port or going to the doctor as much, you will want to discuss with them a schedule for flushing the port on a regular basis. Many people have ports for years, even though they are not currently getting treatment, but they must continue to have them flushed to prevent clots. I'm so glad you are okay. My port was removed about 3 months after I finished my treatment.

lemonade
Posts: 62
Joined: Feb 2010

I had my port removed Dec. 2009, after my first 3 month check-up after chemo/rad ended in Oct 2009. At that time I was NED and my oncologist wanted to go ahead and remove it.

I had a scare in October where my ankle was swelling. I couldn't get a return call from my doctor's office so I went to my oncologist without an appointment. He gave me a shot (some kind of thinner) and sent me in for a doppler (sonogram) the next day to see if I had a clot in my leg. The night before was scary because I was thinking to myself that you could die immediately from a clot, whereas cancer takes a little bit longer. The doppler did not show any clot, so I guess I dodged a bullet there.

Barbara

Skittles
Posts: 17
Joined: Mar 2010

I finished treatment a month ago. I saw docr yesterday, and he is talking about removing the port at the end of july, I'm not scheduled for 1st pet until September, I asked about this and he said if we have to they will put in a new port on the other side. I just had the port flushed 4 weeks ago and was due mid july. There was nothing left of my tumor to biopsy after treatment so they were waiting for PET. I see my onc tomorrow and double check with her about removal of port before PET. After this clot scare I want it out of me. They said it is something my body if fighting to get out, which is I guess a good thing as my immune system has kicked up.

z's picture
z
Posts: 1271
Joined: May 2009

Hi Skittles,

I don't blame you, I would want it out too. And like the dr said if you need one, you can always put it on the other side. Sounds to me like your not going to need one. I still have my port, as a matter of fact my 1 year post tx was 6-30-10 YIPEE. My oncologist has recommended keeping it in just in case. I am fine with that, but I know if I start having trouble with it I will have it taken out. I wish you well. Lori

cbarker3
Posts: 3
Joined: Jun 2010

After my first round of chemo I had severe chest pains, dry cough and got out of breath easily. My onco said go to the ER right now, you have pulmonary embolism. The ER doc said that since I walked in on my own and was not panting I did not have clots in my lungs. He didn't even do a CT scan of my lungs. He sent me home on pain meds and large dose ibuprofen. I continued to have some breathlessness and coughing for the next month which all the docs said was due to my radiation treatments.

Following my second round of chemo I was sooooo sick, running a low grade fever and had pulse of 104 beats per second. I got up out of my bed to go to the bathroom, 10 feet away, and passed out on the floor unable to catch my breath. Fortunately I was able to bang on the wall loud enough my husband sitting in the next room heard me. He called 911. Long story short, this time in the ER I had a chest CT scan which showed multiple large clots in both lungs.

The clots originated from my port. As your Docs said, my body was trying to get rid of the port and when it couldn't it tried to protect itself by covering the catheter in my vein with clots. The chemo infusion pushed the clots off the end of the catheter and into my lungs.

Don't know if you have found this to be true with you, but I have a terrible time with docs who are not familiar with cancer and ports telling me that the clots did not come from my port. Mostly the ER docs I've seen don't seem to have a lot of knowledge about this.

I was on coumadin, but had a bad reaction to it. Some people have different liver enzymes, it's a hereditary thing, that prevents coumadin from working. I have been injecting myself with Lovenox twice daily every day for the last two years. I will probably have to do this for the rest of my life.

You are so right that the blood clots are worse than the cancer treatments. The blood thinners are for life. It also had a very profound affect on me.

I had my port removed at two years post treatment. The danger of clots does not go away with the port, but it is so much better to have it out. Putting a port back in if needed still brings with it the risk of more clots. I hope you never need another port.

So sorry you had this same awful experience, but isn't true what doesn't kill you makes you stronger.

sissy310
Posts: 300
Joined: May 2010

Wow, the thread here was a bit scary...made me glad I had a PICC put in because I had low grade fevers and they felt a port would not work with that. Maybe I'm glad. They did remove this PICC and will probably put in another for my second round. It's a pain because all my weekly blood work is done with a regular needle and I'm a black and blue pin cushion right now but to not have to worry about a port and clots is worth it.

Chris3
Posts: 53
Joined: Mar 2010

Yikes! This thread is scary! My doctors said they typically keep the port in for a full year - just in case something pops on a future scan. Now I am leery about keeping it in for so long.

mp327's picture
mp327
Posts: 3109
Joined: Jan 2010

We had a discussion about ports at a seminar I have been attending on stress and cancer. One person said their body started rejecting the port--lots of swelling, redness, etc., so they had it removed. I have known other people who have had ports for years. My doc had my port taken out 3 months after my treatment ended. For those who keep them in for long periods of time, I know they need to be flushed periodically. I suppose since it's a foreign object inside the body, rejection/problems are always possible.

Chris3
Posts: 53
Joined: Mar 2010

Yes, I was told to get my port flushed every 6 weeks.

Not looking forward to having this thing for a year. Since I lost quite a bit of weight, it is very pronounced - you can see (and I can feel) its triangular shape and bumps through my skin. But I figure that it is the least of my worries, so I will follow their advice and keep it in. But, I will definitely keep an eye out for any skin changes, redness, or bulging.

Chris

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pjjenkins
Posts: 173
Joined: Mar 2009

Good idea for a seminar discussion.
I had to have my port flushed monthly. My medical oncologist permitted my to have it removed about 9 months after I completed my treatments.

duckyann
Posts: 162
Joined: Jun 2009

I still have my port and I am 13 months out of treatment. My oncologist flushes it every 3 months.

provincetown
Posts: 4
Joined: Feb 2013

I am researching information for my son and ran accross your posting.  My son has a similar clot in his neck along with swelling in the neck and shoulders.  May I ask how your situation changed?  I hope you are doing well. 

regards,

provincetown

danchi
Posts: 4
Joined: Feb 2013

I had a blood clot in my jugular vein one month after completing treatment. I had a low grade fever and pain in my neck. I was in the hospital for 2 days on blood thinners then home on the self injection thinner for a few days then 3 months on Coumadin. Of course, they removed the port while I was in the hospital.

LaCh
Posts: 529
Joined: Dec 2012

Didn't have any problems with clots or fevers but the port was painful from the day they put it in, throughout treatment and now, even after it's been out for two weeks (I had it removed immediately after I completed the second round of chemo). In place of a gigantic bump I have a smaller one (why, I have no idea) which is sensitive to touch and pressure. Anyone else experience these things after explantation?  If so, did it resolve or does it persist?

provincetown
Posts: 4
Joined: Feb 2013

danchi, how long ago was this?  How are you now?  Are you still on coumandin?  Has the blood clot disolved and has the pain in your neck gone? 

danchi
Posts: 4
Joined: Feb 2013

The blood clot was in July 2012 and I took Coumadin until Oct. when ultrasound showed the clot was gone.  My neck feels fine now. I am now waiting for PET scan results regarding a lung nodule.

mp327's picture
mp327
Posts: 3109
Joined: Jan 2010

I want to wish you the very best on the PET scan results and I hope it turns out to be something benign and not sinister.

rd160
Posts: 1
Joined: Mar 2013

hi i was looking for info on this type of clot and came across this post. my dad was diagnosed with stage 4 colon cancer with metastasis to the liver. after second round of chemo he woke up dizzy and a funny color. found out he has a massive clot from the port sits in the jugular down into superior vena cava and its blocking almost all blood flow from his upper extremeties. super swolen and dark purple face. they are now trying to break it up with meds.

jbug2
Posts: 50
Joined: Mar 2013

Hi, my brother had a port for 3 weeks, then a 4 inch clot was discovered where the port joins the tube, I believe.  He told me when they did the ultra sound on his chest, he saw fluid escaping from a tiny hole in the tube leading up to his jugular.  He underwent a clot busting procedure on Wednesday, Thursday am the tube leading to his jugular was removed, then in the evening hours the old port was removed and a new port was put on the other side (he'd only completed 3 weeks of his 6 weeks of chemo).  He is at home with some sort of pressure sleeve on his arm to help prevent clots, and is giving himself blood thinner shot in the fatty area of the abs twice a day.  All of our communication during each of our ordeals with anal cancer are long distance phone calls and texts, so I can't be more detailed than I just wrote.

mp327's picture
mp327
Posts: 3109
Joined: Jan 2010

Thanks for telling us about your brother's experience with a blood clot.  I hope he is doing well after the new port insertion and that he has no more clotting issues.  I wish him all the best.

jbug2
Posts: 50
Joined: Mar 2013

mp327: thanks for your comment.  I read it and just breathed a huge sign of relief.  I've finally found people who know what I've been through.  I have stuck to myself, just me and my husband throughout this ordeal. I suppose I should branch out to the local c*ncer support center ...

cap630
Posts: 150
Joined: Jul 2011

My husband a clot a few months after treatment ended for colon cancer.  After two trips to the ER they finally disgnosed it.  Almost a week in hospital nada followed by several months of blood thinners injected in to his stomach.  Thank goodness you were on top of it.

 

Blkplgal55
Posts: 2
Joined: Sep 2013

Post Submitted Two Many Times

Blkplgal55
Posts: 2
Joined: Sep 2013

I am being treated for Colon Cancer and after one treatment was hospitalized with a blood clot in my jugular vein.  It is very scary and I had no idea that this was a risk.  I have now had 2 treatments and 10 more to go so my port is not being removed.  I will have to have blood thinner injections for the entire time of my chemo and for 6 weeks after.  I actually thought that I just had an infection in my gland.  Hopefully, by posting this, it makes others aware of blood clots from their port.  I think the port is still the best way to go for the chemo, but you should always be aware of the risks so that you can get the help you need immediately.

eihtak
Posts: 886
Joined: Oct 2011

Wishing you safe treatment.....thanks for posting.

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