Why don't doctors believe what we tell them?

Angela · 02-28-2008, 02:10 PM

I just got home from the onc. I have been coughing my head off. I've been researching what could be causing this cough and found many women on this site who had a cough with herceptin that went away after getting off of herceptin. I told the onc about it today and he said "I have over 30 patients on herceptin, some have been on it for 8 years and none of them have a cough". So, since none of his other patients have a cough does that mean it can't be herceptin. How do I get him to look at the facts that it can cause a cough? If I am wrong about herceptin causing a cough someone please tell me. Now he has me on hydrocodone and is going to put me though lots of test. He even said that the cough could be coming from my lung met (1spot left) which is now less then 2mm.

Another strange thing...I wanted to take a break from herceptin to see if the cough would go away...he said ok we will wait 4 weeks until your next treatment. I said 4 weeks? The would only be 1 week longer (I usually go every 3 weeks). He didn't want me off of it any longer then 4 weeks. However, back in Oct when I asked to skip a treatment (I was off for 6 weeks) so I could enjoy vacation he said sure, not a problem. Why the difference in attitude?

I know you'll can't answer all of these crazy question. I am just venting I guess. Thanks for letting me vent in a place were others understand what I am going thought.

Love ya,

Yorkiegirl · 02-28-2008, 05:46 PM

Angela I would adivse your Onc. to read the package insert for Herceptin so he can clearly see that having a cough is a side effect of Herceptin. Geez WHY DO THEY NEVER LISTEN?? I had the same thing happen on several issues.

Also here is a link that has the info maybe print out for him to clearly see what he isn't understanding.

http://www.rxlist.com/cgi/generic/trastuz_ad.htm

Carol Carlson · 02-28-2008, 08:17 PM

First of all, Doctors have a hard time recognizing that even though the side effect is rare, it's still a side effect.... that's why they list all of them.
We just went through a similar situation with my husband's treatment with Rituxan , a target drug like herceptin.. he's being treated for a rare form of lymphoma.
because the side effects were not " textbook", one of his doctors discounted the fact that it might be the treatment causing the side effects and was seen by a neurologist yesterday and is having an MRI tomorrow. If the MRI is normal they will probably confirm that yes, indeedy, his unusual, though listed side effects were caused by the treatment.
Doctors, though as wonderful and brilliant as they are can be a rather " odd lot"....
Carol

SoCalGal · 02-28-2008, 08:24 PM

I would ask him point blank your questions. "Coughing your head off" is different than having a cough so maybe that's why he's pursuing other tests. Maybe the cough meds will give you a break. The extra week is nice - I did that for my last few months of treatments back in '04.
Flori

Lani · 02-29-2008, 09:01 AM

above (see the yellow bar) and you will see four threads on this, each of which I posted to including two articles you can print out and carry with you if you feel your doctors don't listen to you

Here are the threads--best to put the words above in the search function as it gives you links

pulmonary toxicity
Angela
02-23-2008 07:22 PM
by Lani
3 78 her2group

Please post your two cents on Herceptin "side effects" real or perceived! ( 1 2 3 ... Last Page)
Lani
02-09-2008 01:33 AM
by Kathy S in Tokyo
374 21,447 Herceptin / Tykerb

Excessive Coughing/Herceptin ???
tdonnelly
01-14-2008 12:07 PM
by Rendi69CA
9 281 her2group

Sick & Tired Ofcoughing Everyday
LOPSIDED

Hope this helps

Paris · 02-29-2008, 09:02 AM

I can totally relate. I have cardiomyopathy and my onc. refused to believe it was from herceptin. I didn't do A/C so I'm sure that's part of why he didn't believe it. I had every cardiac test known to man and the cardiologist assured me it was herceptin damage. He gave me 30 pages of clinical studies to back his assertion up. It is frustrating when doctors don't listen. I have been off of herceptin since January and I've yet to get a call from the oncs. office to see how I'm doing and to schedule an appointment.

pffida · 02-29-2008, 07:38 PM

You have a right to be concerned. I also had coughing about six months into my Herceptin treatments. It started slowly and at first, was kind of brushed off by the nurse. When it started keeping me and my husband awake at night, I knew something was wrong. The onc agreed and started the ball rolling. Within a 2 week period, I had a CT scan (showed small 6 mm spot on lung), that then prompted a PET scan (negative). Went to a cardiologist for echo, 6 hour stress test, nuclear heart scan and halter monitor test.

Bottom line, everyone agreed, it was the Herceptin causing the cardiomyopathy. I was taking it every 3 weeks. I skipped one treatment (total of six weeks without treatment) and the coughing stopped at about the 4 week timeline. We also changed my BP medicine to one less prone to cause coughing.

I am now back on Herceptin, but take it every week. I have had no more heart problems since then. Keep pushing the doctors.

madubois63 · 03-01-2008, 03:35 AM

Okay, here's my 2 cents...The cough MOST CERTAINLY can be from the Herceptin; but since you already have a met in your lungs, when was the last scan you had??? I was "coughing my head off" before discovering the lungs mets. It was explained to me once, but since then I've gotten severe chemo brain and don't retain much. It has something to do with the bodies attempt at trying to defend the invasion causing fluid to fill up the lung. After draining and sealing my lung, I was put on Herceptin. For me, it was hard to differentiate the cough from damage done from the cancer or from taking the Herceptin. I suggest getting an x-ray or PET/CAT scan just to keep an eye out for any fluid build up.

I know having your doctor not listen to you is very frustrating. For me, this would make me consider finding a doctor that knows how to listen. My girlfriend's doctor didn't listen to her complaints...she said she had vision problems. The bc went to her brain. Because he didn't listen or order a simple brain MRI, she's gone now...She was only 41 and left behind 3 young kids. PLEASE CHECK IT OUT...

PinkGirl · 03-01-2008, 08:11 AM

Madame Dubois
I always enjoy your 2 cents - straight to
the point/ cut to the chase.

Could you or someone else explain what
"sealing a lung" means? Thanks.

madubois63 · 03-01-2008, 10:35 AM

Hey Pinkygirl - Love your new picture. I need to update mine.

After draining the fluid with a tube (sometimes left in for days), the doc blows talc in to the tube. The talc adheres the lung to the chest wall so that fluid can't fill the space again.

I had this done 4 years ago, but fluid was slowly able to build up again over the last few years. The fluid really filled in after the relapse was discovered, and you may remember I had to have the procedure done again. So far, there hasn't been any fluid build up, but I am a walking barometer. The change of air pressure effects my breathing. I have woken up many times with shallow breathing a few hours before a storm comes through. Very annoying. If you look at the times of my posts from last night, you can tell last night was one of those nights...finally fell back to sleep after 3 am when there was 2 inches of snow on the ground...

PinkGirl · 03-01-2008, 10:46 AM

Madame Dubois
You said the lung adheres to the chest wall
and fills the space.

Does this mean the fluid was outside of the
lung? I'm not quite getting it.

I'm glad you finally got to sleep last night.
I always knew snow was good for something!!!

CLTann · 03-01-2008, 01:10 PM

Pink,

The following is how lung (pleural space) sealing works:

Sterile Talc Powder is a sclerosing agent intended for intrapleural administration supplied in a single use 100 mL brown glass bottle, sealed with a gray, 20 mm stopper and covered with a flipoff seal. Each bottle contains a minimum of 5.0 g of Talc

USP (Ultra 2000 Talc), either white or off-white to light gray, asbestos-free and brucite-free grade of talc of controlled particle size. The composition of the talc is ≥ 95% talc as hydrated magnesium silicate. The empirical formula of
talc is Mg3 Si4 010 (OH)2 with a molecular weight of 379.3. Associated naturally occurring minerals include chlorite (hydrated aluminum and magnesium silicate.), dolomite (calcium and magnesium carbonate), calcite (calcium carbonate) and quartz. Talc is practically insoluble in water and in dilute solutions of acids and alkali hydroxides. The finished product has been sterilized by gamma irradiation.

CLINICAL PHARMACOLOGY

Mechanism of Action

The therapeutic action of talc instilled into the pleural cavity is believed to result from induction of an inflammatory reaction. This reaction promotes adherence of the visceral and parietal pleura, obliterating the pleural space and preventing reaccumulation of pleural fluid. The extent of systemic absorption of talc after intrapleural administration has not been adequately studied. Systemic exposure could be affected by the integrity of the pleural surface, and therefore could be increased if talc is administered immediately following lung resection or

biopsy.

PinkGirl · 03-01-2008, 02:09 PM

CL,
Thanks for the info. I'm glad the
talc is asbestos-free