Questions about her2 +

SpecialK

jap62 - Unfortunately these are the facts about Her2 BC, not trying to make anyone depressed -  the part I wanted Eve to note was the last part about how the rest of the cells in the body are not affected because she is worried about whether receiving Herceptin will affect them.

jap62

I understand that, just having her2+++, and knowing the facts, just seeing it written down again is depressing

kathleen1966

But don't forget Herceptin.  Those facts about Her2+ are facts WITHOUT the added Herceptin.

orange1

I know I am going to get slammed for this, but I think credability is earned through honesty.

Her2 receptors are present developing and adult heart muscle.  That is why herceptin, when combined with potentially cardiotoxic chemo such as adriamycin, occasionally causes heart damage.  

Here are the numbers from a large clinical study that was conducted after docs learned that they need to monitor cardiac function when giving herceptin + adriamycin. (The study is called BCIRG 006)

Cases of cardiac death:

AC TH (more toxic chemo + herceptin): 0

TCH (less toxic chemo + herceptin): 0

Cases of significant (grade 3 or 4 ) heart dysfunction

AC TH: 21 out of 1068 patients (about 2%)

TCH: 4 cases out of 1056 patients (less than 0.5%).

With TCH chemo, the cardiac dysfunction eventually reversed itself.

The her2 receptor is amplified in other cancers besides breast cancer.  Because of this, women who received herceptin + chemo had about half the incidence of other cancers (such as melanoma) compared to women that had chemo alone.

I am not aware of the receptor being present in other tissues, and a quick google search did not turn up anything, but I am not positive that it doesn't exist in other healthy tissues.

Most of us when receiving the herceptin alone (after the chemo portion of our treatment was complete) experienced a continually runny nose as the most prominent side effect.  I hope your experience is similarly easy.

Best of luck on Monday. 

jap62

thanks orange, I think my doc wnats me to do AC TH, I am going to go to John Hopkins for a second opinion though

kathleen1966

I did the TCH combo.  Adriamycin alone can damage the heart, and it is thought that this chemo with Herceptin could be a double whammy so to speak.  Yes, there is a slightly higher success rate with Adriamycin.  The risk of developing a later leukemia is also higher with Adriamycin, though carboplatin is also the type that can cause leukemia (I actually didn't know this at the time)..

marjie

I had chemo FEC-D x 6, Herceptin x 18 (every 3 wks for a year).  Just finished up the Herceptin - I was monitored by a cardiologist all the way through when a MUGA came back showing a slight change.  I remained active, continued to build my strength back from the "hard" chemo & rads.  Next week I will have what I am assuming is my final cardiologist followup.

The worst problems I had with Herceptin - headachy and tired for a day or so after tx, and ofcourse that damn runny nose!!!  It was really no problem though and given the aggressive nature of the Her2 gene (I'm 3+++) I'm glad I have done all that I can at this point.

suzieq60

jap - they only usually give AC-TH to node positive patients (not sure about hormone negative ones) - you don't show if you had any positive nodes.

jap62

susie, I haven't had any taken out yet, so don't have any idea yet, I just got an appointment at John Hopkins for a second opion, so we will see

suzieq60

Jap - Good luck - the difference between TCH and AC-TH is negligible in outcome but TCH is kinder to the heart. Hope you haven't got any positive nodes.

orange1

AC TH is still some institutions standard of care, even for node negative.  But that doesn't mean you have to go along with their standard.

Also, some may recommend AC TH over TCH for particularly high risk (such as those with LVI).

Best of luck jap! 

Alicethecat

Hi Eve

I've been following your posts for a few weeks now...Understand in a way where you're coming from because I too am HER+. Like you, I have my fears about immunotherapy (Herceptin) and chemo therapy but I'm just going to do it.

How do you think you will feel if you do get cancer in other parts of the body and look back and think to yourself, 'If only I'd given it a go'.

Best wishes

Alice the Cat

AlaskaAngel

A the C,

It is difficult to put much confidence into doctors who recommend difficult, expensive, time-consuming treatment with SE's like chemotherapy to patients, while they make lame excuses for not finding out much about whether or not trastuzumab would be effective when used alone.

Kind of like putting the blindfold on to use a bat on the pinata!

A.A.

Hindsfeet

Someone replied to me and shared that Herceptin does not discriminate between Her2 receptors on cancer cells and her2 receptors on other cells in the body; this is the reason there has been cardiotoxicity in the heart. The heart has more her2 receptor cells than cells in other parts of the body.

This concerns me.

Alicethecat...no matter what choice of treatment you do or don't do there are no guarantees that you are cancer free or won't have a recurrence. I really don't want to discuss chemo or other cancer treatments. I'm trying herceptin alone...I'll let you know how it goes

Moonflwr912

And that is why Herceptin is so important, Jap

! Welcome back Eve. Special k, that article sounds pre herceptin, was it? Herceptin has only been available for about 6or 7years to the general population, I think I read, it is a game changer.

iwillsurvive2010

Hi all...I am from South Africa and was diagnosed with Breast Cancer on 8 Feb 2010. I have had a radical mastectomy, chemo and radiation. March 2011 i started on Herceptin every 3 weeks for 6 months. I then ran out of medical aid funds and had to stop for 5 months. My medical funds are now available again and i start on 22 May 2012. 

I would like to know if the herceptin i had helped at all being that i did not completed the year course or any other information advice that you can give me.

i have been checking on the web for information and then came across this site.

 i would appreciate any kind of help in this regard.

 WISHING YOU ALL A SUPER DAY! XXX 

Hindsfeet

• spleen cells from a mouse that has been immunized with the desired antigen withMix
• myeloma
• Picture illustration on this website and helpful information

  http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/M/Monoclonals.html

suzieq60

What is a HER-2/neu receptor?

Human epidermal growth factor receptor 2 (HER-2/neu receptor) is a molecule present in small amounts on the surface of certain types of cells, such as breast cells and ovarian cells. The HER-2/neu receptor binds to human epidermal growth factor (hEGF), a molecule that can stimulate the multiplication of the cells. Some types of breast cancer cells and some types of ovarian cancer cells produce abnormally high levels (called over-expression) of the HER-2/neu receptors on their surfaces. Certain patients with breast cancer that over-expresses HER-2/neu receptors may be treated with the biological medication, Herceptin (generic name trastuzumab, which is a special type of (monoclonal) antibody. As Herceptin can block the binding between the HER-2/neu receptor and hEGF, Herceptin treatment can slow the multiplication of breast cancer cells that over-express HER-2/neu receptors. Also, Herceptin bound to the HER-2/neu receptor can help the immune system to try to rid the body of the cancer cells.

Herceptin (chemical name: trastuzumab) is one of the first targeted therapies used to treat breast cancer. It specifically attacks, kills off, or stops the growth of cells that make too much of a protein called HER2/neu-and it leaves most normal cells alone. About one out of every four breast cancers are "HER2/neu positive"-they make too much of this protein.

Herceptin works differently than standard chemotherapy. As chemotherapy kills cancer cells, it can also damage normal cells that are rapidly dividing. This is why chemotherapy causes more side effects than Herceptin. In contrast, Herceptin is a more targeted treatment-it only kills off or stops the growth of cells that make too much HER2/neu.

How Herceptin Works
About 25% to 30% of breast cancer patients have cells that suffer from an excess of a protein called HER-2/neu. This causes the cells to grow faster, and make tumors that are more aggressive.

Herceptin finds and attaches itself to the HER-2/neu protein on the surface of these cells, slowing their growth. There is little if any effect on normal cells, which do not have an excess of HER-2/neu. Herceptin also works by attracting the body's own immune cells to help them find and destroy the cancer cells.

orange1

Hi Eve,

I understand your concern about the possibility of Herceptin targeting her2 receptors in heart muscle.  But as I have learned in the science field, that often what is seen in tissue culture or pieces of animals is not predictive of what happens in real life.  Whole animals (humans) are so complex - with systems that metabolize drugs or actually activley pump drugs out of cells, that you can never be certain what the affect will be in a living animal.  And even when things work (or cause harm) to some species, they don't to others because the overall system is hugely different. That is why most drugs ultimately fail in clinical trials - they are optimized to cure mice, not humans.

Fortunately, it is required that drugs be tested in humans - since that is the only way to understand how they will help or harm humans.  And thanks to the brave women who participated in the BCIRG 006 trial (and other herceptin trials) it is known that despite a theoretical detremential effect on heart, this occurs in real life in humans very rarely - less than 2% of the time when herceptin is combined with cardio-toxic adriamycin, and less than half a percent when combined with less toxic TCH chemo.  I would think that since you will not be recieving cardio-toxic chemo, the odds of herceptin alone negatively affecting your heart are no more than a half of one percent (less than 1 in 200).

Good luck on Monday! 

SpecialK

moonflwr - the part I excerpted was from Genentech, the manufacturer of Herceptin, from their own website.

Hindsfeet

Thanks Orange, all of you have helped me a lot. I do have more confidence walking into the infusion room...with shaking knees This treatment is really radical for me as I don't do vaccines and never been into drugs...rarely take an aspirn. I am going to Walmart today to purchase "the Living Proof" on herceptin story. I heard Walmart sold it.

Do you need to bring a light blanket? I heard it gives you the shivers. What are the best foods or drinks to bring a long? Do you feel anything when it goes through your veins? My daughter gave me a Kindle Fire for Christmas...will have to see how it works and read a good book. Silly questions

SpecialK

eve - I never noticed having the shivers.  I usually brought something to nibble on that did not have a strong smell, in order not to bother anyone around me.  Something like trail mix, or crackers.  I usually brought a hot drink in an insulated cup and also a bottle of juice.  I used my Nook (like your Kindle) and read.  I had a port so didn't feel anything in terms of veins.  There are differing thoughts on infusion time - it can range from 30-90 minutes.  I preferred 90 minutes since the one time (first Herceptin alone after chemo) I received it in 30 minutes I did get some aching in hips and legs for a few days, but nothing that a Tylenol couldn't take care of.  After that asked for a 90 minute infusion and didn't have that happen again.  You are going to do just fine, the anticipation is worse than the event.  Your questions are not silly - more information always makes us feel more prepared.  Wishing you the best.

kayfh

Eve I have been having Herceptin treatment every three weeks since May 2009. For the first 8x it was with taxol then I took letrozole every day and had Herceptin still ever three weeks. Have been only on Herceptin since June 2011. I think that the s/e are only from Herceptin. I am very very cold after the infusion, very tired and headaches for 2 days and have a runny nose just about all the time. Other than these rather mild s/e (compared with chemo and then with the AI) I am fine. Herceptin has changed a very nasty disease into something I can deal with, most of the time. I am grateful to the women who went before me, the researchers, who made this game changing treatment possible. Kay

MizMarie

I too have just the persistent runny nose as my only SE from Herceptin.  I never for a moment hesitated about taking it.  The way I see it is there is not much point in worrying about long term side effects if the alternative is not being around to have them....

Ang7

I agree with that MizMarie!

Good thoughts coming your way evebarry...

Hindsfeet

What about driving myself to the infusion and back? Eating breakfast before or afterwards? I will be doing a lot of driving on Tuesday...and teaching. Any problem with going back to work? I read the effects are 24 hours...so do you rest the remainder of the day?

Thanks ladies....this does help me to prepare for Monday. I'm hoping the infusion is uneventful and I can forget about it for 3 weeks until the next one. My first infusion is 90 minutes...following infusions are 60 minutes.

SpecialK

eve - no problem - drove myself.  No problem eating before or after (or during), no immediate SE.  I ran errands, went shopping, etc., never came home and rested, there was no need.  As I said above - you might want to have them all at 90 minutes if you experience any aching, I did it for the entire year.

orange1

On the day of infusions, I did everything I normally did without a problem.  I suggest eating - just so you won't be too hungry.  You can't be sure how long the whole thing will take - you know how hospitals are - lots of waiting around.  At my hospital, they wouldn't make up the IV until I arrived (too expensive - they don't want to throw it out if you don't show up).  So I arrived at the hospital, check in, get weighed.  Then the nurse sends my weight and the order down to the pharmacy.  Pharmacy has to enter the order, make up the infusion, check it, and send it back up to the infusion center.  They were pretty good about moving things a long, but it still took most of the morning.  

Bring something to read - hopsital magazines usually leave a lot to be desired.  The infusion center provided warm blankets in case we wanted them.  I always had one since I am always cold - except when I'm having hot flashes.  For the IV your will have your sleeve rolled up and no outer sweater - to allow access to your arm - so you may want a blanket to replace the warmth that a sweater normally provides - and sitting around for long periods may make you cooler than moving around.  But I never experienced "chills" - just usual coolness from not having a sweater on in the winter time. 

You shouldn't feel any difference between saline drip and the herceptin infusion in your arm.

Since you're kind of nervous about the whole concept of the treatment - you may have some adrenalin flowing - this tends to amplify every feeling.  Also - long periods of worrying tend to be exhausting.  Because of this - you may be a little tired after the adrenalin wears off.  But after a couple infusions when you dont fear it so much, I expect you will feel absolutely fine afterwards. 

ETA: I have know idea why part of this post is showing in italics - its not intentional and I can't figure out how to fix it. 

lago

Evebarry When I was doing Herceptin only I drove too and from all my appointments. Just went on with my day as usual. Chemo was a bit different because the emmend made my eyesight blurry and the bendryl also made me a little spacey.

I can't believe you are going through this again. I bet you will do fine tomorrow.

♥ ♥ ♥ lago

Hindsfeet

Largo, I'm not going through this again...my first infusion ever. Thus far I've only researched the pro's and con's of treatment. I'm doing this just in case there are her2+ micromets. I just heard from 2 friends who have friends who 2 years ago were dx with early cancer and now have full blown cancer throughout their body. Friday my friend said she was given several months to live, and now just a week. I wonder if they had the her2+++?

In that the infusion is Monday, I wasn't for sure what to expect. Good to know I can drive myself to and from...now I can tell my DH he doesn't have to come. I was told my herceptin was already ordered. I have to be there around 9 a.m. I was also told it could take the whole morning.