Experience with Herceptin Extravasation
 

I have been receiving Herceptin for 2+ years during treatment for
my third recurrence. My port has always been positional for giving
blood for testing but okay for infusion of chemo and Herceptin. Yesterday it refused to give or take and port scan was performed, showing a fibrin sheath at distal tip of port and extravasation of contrast fluid in my chest, just under the port. The port is scheduled to be removed Monday morning. What I haven't been able to find out is what the effect of Herceptin in my chest tissues will be. I know that Herceptin does not have tissue damaging effects, but wonder if it has caused changes in that area of my chest that could explain my recent set of symptoms that came out of nowhere.

For last three months, I have been experiencing deep chest pain in area above (collar bone) and around my port, radiating to upper shoulder area. In addition, an unrelenting tiredness and breathlessness with any level of exertion. My oncologist ordered a cardiac and pulmonary workup, which are still in progress, but have shown no cardiac damage, so far. Of course, Herceptin is suspected, because of the length of my treatment, but my recent MUGA is at 65.

I would really like to hear from someone who has experienced extravasation of Herceptin.

Dear Beverly - I have had taxol n herceptin for the last 3 months once a wk. Just finished taxol and was told I have to hv herceptin for a whole year. I too have been having slight palpitation/slight irregular hearbeat and tiredness/breathessness. I heard about Tykerb which is not as bad as herception re heart symptons and constant cough.
When I had the HER2 test done was negative - but when FISH test requested - showed BORDERLINE - n decided to have herceptin. I know that the mass has gone down considerably - so I am wondering whether I should continue with Herceptin due to the heart side effects. I am getting a MUGA next wk - I do not know what my Muga was 3 months ago.
Talk to your dr re Tykeb just in case.
Esther

Hi Esther,

Glad to hear from you - that was my fist post to the Her2 support group and I wish I had joined earlier.

I really believe in the benefit of Herceptin and feel very fortunate that I have had almost the total recommended regimen. But, the heart risk is real and I guess I will have to see if my symptoms are cardiac or related the port malfunction. My oncologist also mentioned that if my MUGA ever indicated that I was losing ejection
fraction, she would use Tykerb instead. I know from my own research that the FISH test is the best, so far, to indicate true HER2 Neu status, so it sounds like you made the best decision there. When you have your next MUGA, they can tell you what your previous number was and then you can track it. Did your breathlessness start with the Herceptin/Taxol treatment? Is your Herceptin regimen going to be once a week? Mine has been a double strength treatment every two weeks and now I wonder if that was wise. I fogot to mention on my profile that I have been on Femara for the past year but don't think that is related to my new symptoms.

Best Regards,

Beverly,
Are you going to have another port placed? I'm on my third port due to problems with the first two, and my newest one is on the opposite side as the last two. If you've got good Muga scans and no other signs of heart damage, perhaps the next step is a PET/CT to check for progression? Hate to say the word, but it's something we all have to guard against.

<3 Lolly

Lolly,

I won't know until I talk to the surgeon on Monday morning, if another port is even possible. I know that some type of damage has occurred in that area. I have been told that a port is not required for Herceptin infusions, but have always had mine through the port. My previous vascular damage (1999 A/C administered through port that had a fibrin sheath) required that the port be removed and the resulting scarring and subclavian blockage on that side prevents installing another port there.

I had my latest PET in October and a spot showed up in upper right area of my chest - the area corresponding to where my port is. We followed that with a CT in late December, to see if there was change/growth, but nothing showed up on the CT! So, now it seems possible that the PET might have shown inflammation caused by the leakage of the Herceptin into that area.

I am so glad that Herceptin was there for you and has helped you. Will you go back on it after the A/T/C regimen is complete? Thanks so much for your reply.
Beverly ^,,^

Lolly,

How do I attach my diagnosis/treatment profile to my posts?

Thanks

Beverly

Beverly,

To attach your profile to your posts, go to "User CP" (under HER2 Support Group banner at the top of the page). Then go to Edit Signature, and just type in your info, click on Save and that's it; your info will show up on each post, even old ones! If you need to add or subtract info, just repeat process.

I think Herceptin will still be waiting in the wings for me, I don't see any reason not to reuse it as the reason my onc wanted to suspend it for now is there isn't enough data on interaction with Avastin for him to feel comfortable.

<3 Lolly

No Port
 

Beverly,

I did the herceptin q 3 wks with out a port. Had an infection and the port had to be removed just before the last chemo. Got approval for late herceptin ( about a year after chemo) and did it with out a port. My onc nurse was GREAT at finding a good vein once every 3 weeks. It was not a problem. Port was the only way to go for the weekly stuff and the heavy stuff but for herceptin alone.....if you need a break from the port...it was not a problem. Can have another put in place if you need it down the road. Take care, Bonnie

Beverly, forgot to say;

Good news on the PET and followup CT. Inflammation probably WAS the culprit.

<3 Lolly

Thanks. Lolly.

I also uploaded my signature with my diagnosis and treatment bio. I will probably have to revise it a number of times, following the example of yours and others that just gives the info that others are looking for, to match treatments and compare notes. Thanks for the guidance. I would like to hear more about the UofW HER2 vaccine trial.

I will post more after I visit this surgeon on Monday morning.

Best Wishes.

Beverly ^,,^

I am having my port removed on Tuesday, Feb 5. Complications of previous port causing subclavian scarring and this current malfunction (fibrin sheath, extravasation, plus the tubing appears to be pinned between my collarbone and muscle behind it,) require that I have it removed under full surgical conditions, instead of just the normal quick removal in the Drs office, so I am quite nervous.

They are saying that my remaining Herceptin will require a PICC line.
Would like to hear from anyone who has switched from a port to a PICC line or who has PICC line advice.