Clotting in veins - dang side effect!

[StephN]

I came home from a 24-hour hospital stay this afternoon armed with an anti-coagulant for clotting along the catheter to my port. This is especially worrisome as I am a Herceptin "lifer" and need a port indefinitely.

Been limping along with various odd, uncomfortable symptoms for THREE months now. Had all sorts of neg/inconclusive scans, doppler, etc leading up to this. A CT pulmonary venogram on Tuesday finally revealed some specific clotting. The clotting is adjacent to my "new in Aug" central venous line (left innominate vein). Seems that removing the line would not be the preferred method of treatment since the port is working well.

Symptoms included: puffy face and eyes, puffiness that has advanced to swelling in my neck, hoarse voice, tightness while swallowing, pressure in my upper chest, feeling light-headed and tired - these are the main ones!

The idea to put me on the Lovenox anticoagulant was arrived at cautiously as I have had 2 brain mets and the risk of a bleed in my brain needed to be ruled out as slim to none. Therefore the request for me to check in to the hospital for observation and undergo more blood work and a head CT. They also wanted to check out my heart, which seems fine.

Side effects from the Lovenox - anyone have any??

I am on 2 shots a day, premeasured .6ml dose. I was told that a 3-month course of this drug was best in cancer patients who may have some changes in their blood from treatment. It is expensive at $44/ shot and I have a $294 copay for 14 shots.
They do take it down to one shot per day and then scan at 2 months. My docs said that this drug is more effective in cancer patients than pill form such as coumadin.

[Belinda]

Steph, that's bad news. I hope things clear up for you and that the anti-coagulant works well. Sending "blood tinning" vibes your way! Belinda

[Sheila]

Steph

My Mom was on Lovenox for a problem with clotting, she was on it for 3 months and did not have any problem...just make sure you tell everyone, dentist, etc. as they don't want you to have any routine procedures that cause bleeding while on it....

[Lolly]

Steph, I'm so sorry to hear of this latest hurdle! I hope you'll do fine with the Lovenox and will be able to work around this. Our effecient bodies were not designed to have these foreign elements in place and are simply trying to "heal" us with clots, fibrin sheaths etc. You just have to convince your bod (via Lovenox) that this is a permanent resident and peaceful co-existance is mandatory!
Big hugs and try not to be discouraged.

<3 Lolly

[Kim in CA]

Dear Steph,

I'm sure sorry to hear about this new wrinkle for you. I am of course all ears because my port is getting "up there" age wise. My port is almost 6 years old and I have been having a few blood return issues as of late, not to mention the fact it is just barely beneath the skin anymore. Sticks out like a sore thumb. Interestingly, my Onc took me off Coumadin over a year ago because he said that it wasn't proven to be of any benefit. Hmmmm!

So, did you say you had a new line as of last Aug? And the clotting was adjacent to the line? I'm not sure I am understanding what or where the problem was.

I'd really appreciate any info you could share. Because I am one of the longest surviving Stage 4 BC patients my Onc has, we are really in uncharted territory. I feel that if I don't stay on top of things, who knows what might happen.

So glad that you didn't have to be in the hospital too long. Any time is too much as far as I'm concerned. As Dorothy said, " There's no place like home"

Love Kim

[CLTann]

Steph,

Your problem is very likely allergy to the medication. Edema is a body's reaction to a foreign matter. You may want to suggest this to your doctor and get a medical opinnion on this hypothesis.

Best luck.

[Barbara H.]

Hi Steph,
I'm very sorry to hear about your problem with clotting. I haven't posted lately because I was away in Florida for spring break and have been very busy working on school work and report cards.

Today I went to a breast cancer survivors' conference given by the Dana Farber. One of the keynote speakers was Chris Carmichael, Lance Armstrong's coach.

I also attended a seminar on HER2 where Eric Winer was the presenter, and was able to talk with him. From the nutrition specialists I learned that we should be getting at least 1000mg of vitamin D, and if you live in the northern US, it's impossible to receive enough without supplements. One should actually get a blood test to see how much vitamin D is needed, because it varys from person to person. We should drink less than one class of wine a day, and if we drink, we shoud take folic acid. Most everything else I heard, I already knew about. It was positive to hear Eric Winer say that there is a very positive outlook for HER2 cancer in the next 10 years. I wonder what that means for stage 4 patients?

For Sandy, and others that have posted their concerns, please know that you are in my thoughts. I just haven't had the time to respond to everyone's post.

Best wishes,
Barbara H.

[michele u]

Steph, i don't know if this has anything to do with you or not, but google Lupus coagulant. I know your ANA titer was high like mine. A patient of mine had this. I really don't understand it, but maybe has something to do with your clotting problem????

[StephN]

Thanks for all the thoughts and for Barbara's report from a fascinating conference. I do supplement Folic Acid and probably NOT enough vit. D!

What I have is a DRAINAGE problem - the clotting is in a vein that leads down from my head and neck. There is something called Superior Vena Cava syndrom and my problem mimicks that - just in another vein.

Sheila - thanks for the word on your Mom with this drug. What did she need it for?? I caught up on my dental work last Fall/Winter. They said I could keep my scheduled colonoscopy while on this anticoag.

Michele - my ANA was positive, but not highly so, and I was given some test for Lupus a couple of years ago (was neg) when I had that connective tissue swelling in my hands and wrists. Will look up as you suggested.

Ann - I have had this swelling and puffiness creep up rather gradually, and I was not on any new medication during that time. In fact it was during my "Herceptin holiday" and no one thinks that has anything to do with the problem. Just began the Lovenox yesterday so am still waiting for this to take effect.

Kim - the clotting is along the catheter line of my new port. It is in a different vein than the old one which developed the fibrin sheath on it. If your port is not drawing you should have a DYE STUDY done to see what is happening. They do this under a flouroscope and you can watch on the moniter. I bet you are due for a replacement. Just one of those "perks" of being a long-term stage IV patient.

[jojo]

Hi Steph,

Oh boy, this sounds pretty annoying, huh? After all you have come through for the past few months....tsk, tsk, tsk! <shaking head, rolling eyes>

Honestly, the list of your symptoms kinda make me nervous...

Not too long ago, my onc put me on Gemzar / Carbo. I was feeling just fine & dandy, then several minutes I started to experience upper chest pressure as while as the tightness while swalloiwing. They unplugged me, and it turned out that it took several minutes for the tightness to fade away.

They say that the tightness while swallowing is quite a dangerous symptom. I think that anything to do with breathing, they take it seriously. They also view the upper chest pressure as equally dangerously as the tightness of swalloing.

I may be wrong, but it wouldn't if you took a double-check on the symptoms, don't you think so?

Good luck, Steph -- sending warm thoughts up your way!

PS: I must admit that I cannot remember as to whether you would have to take Lovenox, or it was only one-time thing.

[jojo]

I forgot to put in "hurt" before "if you took a double-check......"

[tousled1]

Steph,

Sorry to hear you're having problems. I had blood clots related to my port last year shortly after my first infusion. I was on Lovenox shots for a week - one a day - and then was put on coumidin until a week before my surgery. I haven't had any problems since.

[Kim in CA]

Thanks for the reply Steph. Excellent suggestion.

Kim

[IRENE FROM TAMPA]

Steph - just hope you can get it resolved and can keep your port.

Take care

[StephN]

Well gang, I can feel and SEE a difference already - just since Friday when I began the Lovenox shots.

The first thing I noticed is that my swallowing was easier. Then I realized I was no longer chewing on the inside of my bloated cheeks. Now I can see that my face is less puffy and I don't look like I have been on the nasty steroids or having a severe allergic reaction.

Today the pressure in my chest is subsiding and I have actually spent some time at the IRONING board! More energy as well.

This clotting thing really was handicapping me in many different ways. I am SO grateful that the treatment is having the desired effect and I just MAY get a little of MY life back.

[Lolly]

Whew! SO Glad you're seeing improvement. It's scary how the side effects/complications can take over our lives almost overnight, and amazing when we can reverse them!
Happy news, and hope your dad continues to improve.

<3 Lolly