Blood clot from Herceptin?????

Elizabeth1227 · 05-03-2011, 12:17 AM

Hi Everyone,

Well, I hung in there and am getting my herceptin even though the first three infusions caused depression , especially the third infusion. My depression subsided. I only get 7 days of severe fatigue and diarrhea after the infusion. But on April 21st I now have a blood clot in my leg and then my veins started bulging in my hands, forearms, and feet. No swelling just the veins bulging. I had a doppler done (vein ultra sound) and I was put on daily injections of a blood thinner (Lovenox). Eventually they will wean me off the lovenox and put me on cumadin (another blood thinner). Has anyone heard of getting blood clots from herceptin? I am suppose to be on the infusions until September. I get an infusion every three weeks. My echo of my heart I get every three months shows no heart damage. The last echo was April 22. I am 58 years old and am on no other medications. My oncologist ( who works at UCLA medical center where they invented herceptin) said that herceptin does not cause blood clots but I went on the internet and saw that it can cause blood clots. So I am afraid to continue with herceptin and afraid to stop the herceptin. HELP. I appreciate any input you an give me.

Thank you, Elizabeth

SoCalGal · 05-03-2011, 08:55 AM

I have not heard of this but often when you read the super fine print on the prescribing manual, you will see rarely reported side effects. Go to: www.Herceptin.com and you will see a link to the HERCEPTIN PRESCRIBING PDF which you can download, save and read. You don't include your history in your signature - what is your past treatment? Perhaps the Ghost (drugs) from Chemo Past plays a role?

Jackie07 · 05-03-2011, 05:29 PM

Elizabeth,

I went to PubMed (a database of bio-meidical publications maintained by the National Institute of Health) and couldn't locate anything using 'Herceptin' and 'blood clot'.

I did find this statement on the Herceptin website:

"Herceptin (trastuzumab) can cause heart problems including an inability to pump blood effectively, irregular heartbeats, high blood pressure, disabling heart failure, weakening of the heart muscle, and sudden loss of heart function..."

I am not a medical professional, but I wondered if the blood clot (if no other causes can be found) could be formed due to factors such as 'inability to pump blood effectively' and 'weakening of the heart muscle' listed above.

You have had a long chemo treatment and I wondered if either the chemo or the fatigue caused by the chemo (thus reduced physical activity - I've been turned into a couch potato) might have contributed to the blood clot.

I know 'walking' does wonders for me. See if 30 minutes leisure walk everyday will both improve your mood (because of the 'endorphin' boost) and reduce the chance of blood clot forming again.

Hope you will feel better soon.

Lettik · 02-26-2012, 09:23 PM

Elizabeth, I too had a blood clot, but mine was a pulmonary embolism .I did not have any symptoms though. It showed up on my CT. I was shocked. At the time, I was on Herceptin, and I was on a clinical trial, with Everolimus. It was a double blind study so I didn't know if I was on the drug or not. Anyway, I am at UCSD and my oncologist said that it wasn't from one specific drug, but that cancer patients are more susceptable to blood clots. I read everything I could to dispute this, by finding one drug to be the cause and couldn't. I am also on Lovenox daily injections and will be on these indefinately. Didn't like that at all.
I am not sure how old your post is? But what did you decide and how are you doing now?
Take care
Lettik

Elizabeth1227 · 02-26-2012, 11:38 PM

Dear Lettik,

Thank you for your post. I finished my herceptin October 24, 2011. I got the blood clot end of April 2011. They told me also at that time that cancer patients were prone to blood clots. The beginning of November of 2011 I had surgery to remove a lymph node in my iliac area (hip area) and it was more cancer spread from anal cancer (originally diagnosed 2 days after by breast cancer returned February 10, 2010). So I do not think the blood clot came from being on Herceptin like I originally thought. I believe it was from the cancer spread to my hip area. I am surprised your doctor has not switched you from the lovenox injections to cumadin (generic is warfarin). When I got my blood clot I was on the lovenox injections for less than 2 weeks and then I was switched to the pill form--warfarin (cumadin). I have been on the warfarin almost a year except when I had the surgery for the lymph node removal then I went back to the lovenox injections right before and right after the surgery. I did not like the injections but bit the bullet and gave them to myself. Bruising was bad. You may ask your doctor about switching to the pill form. They will want to check your level frequently to make sure you are on the right dosage. But after awhile you may only have to get it checked every 30 days. Also do you have any other areas of suspicion of any more cancer? I hope not. I am currently on Folfox chemo therapy. I will probably stay on the blood thinner until I finish treatment end of June or beginning of July.
Then wait a few months and hopefully get my port removed God willing. I kinda feel it is better to be on the blood thinner while I have a port.
God Bless you, Elizabeth1227

Lettik · 02-27-2012, 06:48 PM

Elizabeth,
Glad to hear you are doing so well and my goodness, it would be a godsend to me to get my port out.

I do not have any suspicous cancer anywhere else. I had lung liesons, but I believe they are scar tissue from my asthma and are so small they quit doing the CT Chest. In March, I will have another CT abdomen for the liver liesons.

I hear that the Warfarin had to be closely regulated by blood tests and have a friend who couldn't wait to get off of it.

I have never heard of Folfox therapy. Are you er+or pr+ and Her2+? Sending my best healing energy to you and keep us posted.

Bless you,
Lettik

Elizabeth1227 · 02-27-2012, 07:14 PM

Dear Lettik,
I would rather take the warfarin than have injections. It is only in the beginning they need to check your levels and then usually after that only every 30 days. I hated the bruising and getting a shot everyday. Pill form for me is much easier except to get your level check so often in the beginning.
I am only hertu-nu positive. I am er/pr negative. My breast cancer never went to my lymph nodes. The anal cancer spread to a lymph node in my ilac area (hip area). I am taking the Folfox chemo for that. I have been diagnosed four times with cancer. Two primary cancers. Breast cancer December 2007 and returned February 2010 and two days later they found the anal cancer. Then had lymph node surgically removed November 2011. It was cancer from the anal cancer. I am very tired. 7 surgeries (two lumpectomies, mascectomy, re-construction, and two other surgeries for nasal polyps, hysteroscopy, and the lymph node removal), radiation twice, chemo for anal cancer now doing it for a second time for six months every two weeks for 49 hours straight. First chemo I was in the hospital for 96 hours of straight chemo two times during the 33 days f radiation.
I wish you the best.

God Bless you,
Elizabeth