Herceptin side effects

Hello ladies I'm new. I had my original BC in 1997 and last year in June it returned to a lymph node in my chest. In August it spread to my bones mainly pelvis and spine and the latest bombshell a month ago is that it has spread to my lungs.

I have just started on Herceptin and am having side effects that I really didn't expect and actually feel more like I'm having chemo! I am very tired, breathless on exertion and have swelling in my lower legs and feet.

I have just had my fourth dose and it isn't improving did anyone else experience this? Also did you have heart scans before you started your treatment.

Many Thanks

Julia

PS I live in England

I hope you are having more than herceptin. Here, we can get the "Minnie Pearl" regimin which includes herceptin. You need to get the lung and bone mets under control but herceptin alone is only used with stable disease.

Julia
You need to get your symptoms checked out...it sounds like you may have some cardiovascular problems with the Herceptin.....contact your Dr. at once....see if they will do a MUGA san to evaluate your heart.....demand it! And dont wait till your next visit....do it now. There might be some sort of reaction, but do find out. You are in my prayers.
Hugs
Sheila

Julia,
Please listen to Sheila, Go get this looked at NOW! Swelling in legs and breathing problems may be heart related. Go to emergency dept. and get this checked out!
Al

Just like Sheila & Al, this is telling me intuitively that it is more likely to be related to cardio.... I could be wrong, so please talk to a medical professional about your symptoms.

BTW, if it IS related to cardio, then the swelling of legs & feet would indicate poor circulation in body, due to a weak heart. To my knowledge, they treat this problem by prescribing what is called a "water pill" to the patient, at least at my clinic. Sorry, I do not know the formal name of the water pill.

If England does not provide muga's, ask them if they could alternatively administer echocardiograms. Typically, echo's are cheaper tests than muga's, in terms of cost prices.

Also, if your cancer is still spreading while on Herceptin alone, it might indicate that Herceptin alone is not effectively working for you. There are some ladies that would require a combo of Herceptin AND chemo drugs in order to have a better control of their cancers.

Herceptin alone did not succeed in my case, so right after my recurrence, I had to take on hormonal therapy for having a "bigger gun". They have put me in stable for a while, although not very long-term. My onc is concerned more about my having a better quality of life, rather than pulling out the full plug on chemo therapy, one right after another in a series. Talk about weird biology! Oh well...

Best of luck to you! Please do keep us posted.

I am no doctor, but my guess is you have a plural effusion. My breathing problems were due to a fluid build up (pleural effusion) in my lungs. The fluid was a result of the cancer on my lungs. Irritation. I had to have my lungs drained twice by a pulminary doctor before a thoracic surgeon sealed my lungs with talc. You need to get this checked out. Since you said you DO have met's to the lung, the doctor's know the sorce of the fluid build up. Now the question is how to treat it, and if it should be treated. You really should see a pulmanary doctor who will then recommend a thoracic surgeon if you need it. I was to the point where I couldn't walk to the bathroom without stopping for breath. They had me on two inhalers and a nebulizer before the met's to the lungs where discovered. I had the surgery (which is described below) and am so greatful. I can breath, sing at the top of my lungs (not so well) and just live like normal again. It sounds worse than it is in the description - it was so worth it! Also, some of the chemo drugs (taxatere) can cause fluid in the lungs. Please don't ignore this. Once you have taken care of the problem, you will feel sooooooooo much better. E-mail me anytime if you have questions.


Pleural effusion is the abnormal accumulation of fluid in the pleural space.

Normally, only a thin layer of fluid separates the two layers of the pleura. An excessive amount of fluid may accumulate for many reasons, including heart failure, cirrhosis, pneumonia, and cancer. Depending on the cause, the fluid may be either rich in protein (exudate) or watery (transudate). Doctors use this distinction to help determine the cause.

The most common symptoms, regardless of the type of fluid in the pleural space or its cause, are shortness of breath and chest pain. However, many people with pleural effusion have no symptoms at all.

A chest x-ray, which shows fluid in the pleural space, is usually the first step in making the diagnosis. Computed tomography (CT) more clearly shows the lung and the fluid and may show evidence of pneumonia, a lung abscess, or a tumor. An ultrasound may help a doctor determine the position of a small accumulation of fluid.

A specimen of the fluid is almost always removed for examination using a needle, a procedure called thoracentesis. The appearance of the fluid may help a doctor determine its cause. Certain laboratory tests evaluate the chemical composition of the fluid and determine the presence of bacteria, including the bacteria that cause tuberculosis. The fluid specimen is also examined for the number and types of cells and for the presence of cancerous cells.

If these tests cannot identify the cause of the pleural effusion, a biopsy of the pleura may be needed, which can detect cancer and tuberculosis. Using a biopsy needle, a doctor removes a sample of the outer layer of the pleura for analysis. If the specimen is too small for an accurate diagnosis, a tissue sample must be taken through a small incision in the chest wall, a procedure called an open pleural biopsy. Sometimes, a sample is obtained using a thoracoscope (a viewing tube that allows a doctor to examine the pleural space and obtain samples.

Occasionally, bronchoscopy (a direct visual examination of the airways through a viewing tube) helps the doctor find the cause of the fluid. In about 20% of people with pleural effusion, the cause is not obvious after initial testing, and in some people a cause is never found, even after extensive testing.

Treatment

Small pleural effusions may require treatment of only the underlying cause. Larger pleural effusions, especially those that cause shortness of breath, may require drainage of the fluid. Usually, drainage dramatically relieves shortness of breath. Often, fluid can be drained using thoracentesis. An area of skin between two lower ribs is anesthetized, then a small needle is inserted and gently pushed deeper until it reaches the fluid. A thin plastic catheter is often guided over the needle into the fluid to lessen the chance of puncturing the lung and causing a pneumothorax. Although thoracentesis is usually performed for diagnostic purposes, a doctor can safely remove as much as 1.5 liters of fluid at a time using this procedure.

When larger amounts of fluid must be removed, a tube (chest tube) may be inserted through the chest wall. After numbing the area by injecting a local anesthetic, a doctor inserts a plastic tube into the chest between two ribs. Then the doctor connects the tube to a water-sealed drainage system that prevents air from leaking into the pleural space. A chest x-ray is taken to check the tube's position. Drainage can be blocked if the chest tube is incorrectly positioned or becomes kinked. If the fluid is very thick or full of clots, it may not flow out.

An accumulation of pus from an infection (empyema) requires intravenous antibiotics and drainage of the fluid. Tuberculosis or fungal infections such as coccidioidomycosis require prolonged treatment with antibiotics or antifungal drugs. If the pus is very thick or if it has formed within fibrous compartments, drainage is more difficult. Sometimes drugs called fibrinolytics are instilled into the pleura space to help drainage, which may avoid the need for surgery. If surgery is needed, it can be performed by a procedure called video-assisted thorascopic debridement or by thoracotomy. During surgery, a thick peel of fibrous material is removed from the lung surface to allow the lung to expand normally.

Fluid accumulation caused by tumors of the pleura may be difficult to treat because fluid tends to reaccumulate rapidly. Draining the fluid and giving antitumor drugs sometimes prevents further fluid accumulation. But if fluid continues to accumulate, sealing the pleural space (pleurodesis) may be helpful. All fluid is drained through a tube, which is then used to administer a pleural irritant, such as a doxycycline solution or a talc mixture, into the space. The irritant seals the two layers of pleura together, so that no room remains for additional fluid to accumulate.

Thank you so much ladies for your replies. I will take myself to the Doctor on Monday to get things checked out. My breathlessness is really only when climbing the stairs so not overly worried but the swelling has been worrying me.

I think it could be a combination of things as I'm taking Celebrex as my background painkiller for the Bone mets and I know that drug is receiving a lot of bad publicity in the states concerning heart/stroke problems. Anyway I will discuss it all with my Doc this week.

I am having Pamidronate for my bones and taking Tamoxifen. My lung mets (6) are tiny so we decided to try Herceptin alone for three months if that doesn't hold it then I will have to start chemo.

Thank you again and I hope you don't mind if I pop in from time to time.


Lots of love
julia x

I called the makers of Herceptin because i have two side effects from Herceptin 1.) my nose drips at times like a faucet. The medical affairs people said in clinical trials rhinitis was seen 14%. 2.) My rings are tight. In their clinical trials periphal edema was seen 10%. Does anyone else have the s/e? I am told because I get a big dose once every three weeks it is more pronounced to the once a week pts.