Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy

AlaskaAngel

Blairk,

Four thoughts:

1. To begin with, the incidence of heart problems that the study is based upon could be higher in the first place because of those patients who did happen to be given doxorubicin as part of their treatment. There is no discussion of which therapy was given other than that trastuzumab was given.

2. The oncologist that I saw, as well as my PCP (who maintains exceptional qualification as an internist in the area of cardiac training) have chosen to use echoes for this purpose, and only use MUGAs by exception based on very individual circumstances. They don't hesitate to use a MUGA for anyone but know when it is best applied.

3. Although I think it likely not a factor in your situation, MUGAs likely cost more than echoes.

4. As the others have said, MUGAs are somewhat more invasive and less comfortable than echoes.

A.A.

orange1

I was somewhat aggravated when the mods posted that because it tells only a fraction of the story regarding Herceptin and cardiac function.  Herceptin with Adriamycin can sometimes cause significant heart damage.  The TCH regimen causes much less damage, and overtime, heart function returns to normal with this regimen.

http://www.bcirg.org/NR/rdonlyres/eno7mvfpseiqi5g3pernz37zzeavin4f7o5hos4zwlu76clvwkfluhskusgcmnqvyqk7ksb4gdimpmt6xcmkxppnqce/945_GS5_02_+abst+62+Jan+10.pdf

I hope this link to study BCIRG 0006 works.  If not, google BCIRG 006.  Look for PDF with 3rd (latest) interim analysis.  Data on cardiac safety starts on slide 28.  Slide 31 is a good summary.

momofthree2011

 Blair,

I would ask the nurse for ice chips when I was having my infusions. It helps to prevent sores in the mouth. It worked for me.  Biotene mouthwash works great for dry mouth. Good luck to you and your wife. Have a wonderful Christmas!

Blessings, 

Debbie 

bluedasher

I don't come to this forum regularly any more but I check in from time to time since finishing Herceptin 2 years ago. Like orange, I felt that the moderators didn't handle reporting that cardiac study very well. The study seems to have just focused on Herceptin regardless of which chemo was used with it and the chemo makes a big difference to the risk of heart damage.

BCIRG-006 tested an AC-T control arm vs AC-TH and TCH arms with about 1000 patients in each arm so it was a good large study. (The TCH was Taxotere, Carboplatin and Herceptin.)  The combination of having received Adriamycin followed by Herceptin had a much higher risk of affecting the heart and TCH had a significantly lower rate of problems. Grade 3 or 4 cardiac heart function issues occurred for 0.7% with AC-T, 2.1% for AC-TH and 0.4% for TCH.

Mean LVEF (left ventrical ejection fraction - the measure that is tracked to monitor for cardiac problems from treatment) dropped for all tracks, but it droppedthe most for AC-TH (from a starting point of 65% to 60%, anything above 50% is considered normal); the TCH group median dropped from 65% to 63%). Also, for the TCH group, LVEF rose after finishing Herceptin and it was even with where it started after 5 years. AC-T stayed pretty much level with its low point and AC-TH LVEF came back up part way but to something lower than the AC-TH. 

I haven't read the whole thread, but read a little at the beginning and saw the quesitons about Carboplatin vs Cytoxin in TCH. Carboplatin and Cytoxin have similar action. They used Carboplatin in the TCH therapy in BCIRG-006 because in vitro studies indicated that there may be a synergystic effect with it and Herceptin. But my understanding is that Carboplatin tends to have hasher side effects than Cytoxin. My onc blamed my worst side effects on it and backed off on the dose. That would be a reason to use Cytoxin instead especially for Stage I.

kerrberlady

I was diagnosed back in 2001 with DCIS, 7/12 nodes with cancer, large 2+cm lump that I found.  I was ER/PR+.  I did the lumpectomy, the chemo, with Adrimyacin, which did not effect my heart at all, and then 7 weeks or radiation.  On top of all that I was going through a divorce, which I do not suggest doing at the same time as cancer treatment unless you have a great support system.  

In Sept of this year I was diagnosed with a new breast cancer.  IDC, 3mm, 0/5 nodes with cancer, stage Ia, grade three, ER/PR-, HER2+.  When I got the results of the pathology, I told my  oncologist straight out that I will not do the chemotherapy again.  I had already researched the Herceptin, but being a single living alone woman, kids all live out of state, I cannot afford to be sick from the chemotherapy and being a teacher I can't be around kids that are sick and it is flu season.  I told him I can't be that sick, I don't want to be that sick, and unless he wanted to pay my bills, I was not doing the chemo.  

We decided that I would do just the Herceptin.  It has not been studied whether using the Herceptin alone is going to work or not, but I had both breast removed, doing reconstruction, and had my first Herceptin on Dec 1.  I did the EKG beforehand of course, and my heart even after the Adrimyacin is fine, so I am not worried about the Herceptin. I would rather do something  to not have this a third time, than to do nothing.  I may be sorry about not doing the hardcore chemo, but my oncologist's partner that is a woman said that if she was me, at 50, stage 1, found early, done all the chemo, radiation, hormone treatments like tamoxafen back in 2001, knows what the hardcore chemo does to me, she said she would just do the Herceptin too.  Who knows, I could end up as a new study of just using Herceptin in treatment of second time breast cancer.  

I could die tomorrow in a car crash but I would be wearing a seatbelt and have airbags.  The treatment for breast cancer is like that.  I will do what I have to do to be safe and take all the precautions, and if it comes back, then I will deal with it again, but I will still be alive!!!!  I have a daughter graduating college in 1 1/2 years and another wants to start having a family with her husband, a son who is still trying to figure out his life, I want to be around for those things.  SO yes I will do what I need to to live my life as long as I can!!! 

Boo307

bluedasher,

Have the researchers completed the Phase II trial using Cytoxan instead of Carboplatin?  Can you give me a link to the efficacy data on Taxotere, Cytoxan, and Herceptin?

Thanks so much.

Boo

Trisha-Anne

Blair - I've done 16 of my 18 treatments of Herceptin.  I have a MUGA every three months.  As someone has already pointed out - it is quite invasive and not comfortable - I wouldn't recommend it every month.  At least where I have it done, they put in a canula (again they won't use the port for this as it seems to mess up the test somehow), take blood, mix it with a "sticking agent" put it back in.  After half an hour they take blood again and this time mix it with a small dose of radioactive material and inject that back in.  Then you lay under a machine that takes 3 pictures for about 6 minutes each.

It's a long drawn out process - and I wouldn't do it any more than was absolutely necessary.

Mine have all been fine - my last one dropped a couple of points - I do notice I'm a bit breathless going up stairs etc now, but from what I understand once Herceptin is finished that will go away.

Best of luck

Trish

Cowgirl13

I had all my MUGA scans using my port.  I would just go to the chemo room and they would set up my port. I think they only accessed it once and then i'd go back to the chemo room and they would rinse it and unhook me.   I'm so glad I could do it this way.  It was a piece of cake.  Trish, i'm sorry you had to go thru all of this. 

Congratulations on only having two more Herceptin treatments!  I had my port removed the following week and boy, it was like 'get of of jail'. 

bluedasher

Sorry Boo, but I'm not able to be of any help on that topic. I didn't even know that there was a study on using Cytoxin instead of Carboplatin in TCH. The main efficacy data that I have is BCIRG-006 on Taxotere, Carboplatin and Herceptin. The third analysis broke out the disease-free and overall survival results for the node negative cases in the study. I wish that they would have also included data for more subgroups like stage I. Or even just reported how many of the node-negative group were Stage I vs Stage II.

bluedasher

Boo, is it this one?

http://clinicaltrials.gov/ct2/show/NCT00493649 

According to what is posted, it should have released results. It won't be apples to apples on comparing Cytoxan vs Carboplatin since this study is 4 cycles. Also, it says that the primary measure is 2 year survival. IMO, that isn't very helpful in deciding which treatment to use. If recurrence hasn't happened in 2 years, it may be because the chemo has gotten all of the cancer or just slowed down its progress. I find 5-year numbers more informative (and comforting).

At least for me, the last two of the 6 cycles were much harder than the first 4 (partly because I was getting very low on magnesium which wasn't tested until after the 6 cycles). And as I mentioned above, the Carboplatin was pretty hard on me. 4 cycles with Cytoxan instead of the Carboplatin sounds like a more comfortable chemo but it would be a hard decision with 5 year data available showing that the tougher chemo works well and no data or only 2 years follow up on the lighter option.

Boo307

blue dasher,

Thanks.  Yes that is only study I could find as well on Taxotere, Cytxan, and Herceptin.  I don't know why they gave it to me as I can't find any efficacy data.  Lots of chems have fewer SEs, but efficacy is the whole point of chemo.

Thanks again.

Boo

Omaz

Best Wishes tomorrow BlairK!  Hope everything is uneventful.

Anonymous

Blair...I just had my nine month echo...the 4th one. I asked the radiology tech while she was doing the test why some docs use muga and some echo. She said the echo can show you a lot more about other things, is cheaper, and easier for the patients. She said the muga only reads lvef output, but that it reads it in more detail than the echo. The echo is read bya doctor so subject to more interpretation where the muga is all computerized. I dropped a smidge at 6 months, but still in the normal range.



I have stressed over the heart failure component also. Itis worse when taxen with adryomycin.



I think the 20th is your wifes first treatment. I hope all goes well. Take care of yourself, too.

AlaskaAngel

Waiting is like the nerves before going onstage.  Best wishes for tomorrow to you and your wife.

AlaskaAngel

BlairK

I am up early today Tuesday December 20th at 5:30 AM - probably a function of jetlag and the return from Hong Kong on Saturday.  I have to drive my wife to the chemo and herceptin treatment to begin at 9:30 AM.  I will ask for ice for my wife's mouth and nails.  I will ask the oncologist about monthly echocardiograms along with the already recommended MUGA scans once every three months.  A cardiologist is our neighbor and I will also ask him his (informal) opinion.  The oncologist said that he is most concerned about a fever as a side effect.  My wife already has been taking steroids.  Tomorrow I have to drive my wife back for a shot of Neulasta (to combat low white count).  Will write in detail about the day later.  Thank you for your support.

suzieq60

Blair - I made it through all treatment without any white count booster - Neulasta is not given here because of the cost involved - it must not come under our pharmaceutical scheme. Also, an echo every 3 months is plenty - no need for monthly ones unless she already has heart issues.

One other point, my onc didn't give me herceptin at the first treatment so he could discern what caused any reaction - very wise I thought.

Sue

suzieq60

More tips - get some Biotene mouth wash, a really soft toothbrush and some biotene toothpaste - all of these were given to me in a special bag when I commenced treatment - a gift from the taxotere manufacturers. They are really gentle on the mouth lining as ulcers can occur.

Omaz

BlairK - I was told to start the 24 hours claritin on the day of the neulasta shot and to continue for many days.  Also so me keeping a little something in my stomach helped with the nausea (along with taking the anti-nausea meds.

AmyIsStrong

Good luck, BlairK. Please let us know how she is doing. Also, feel free to stop in at the TCH thread (even though the 'c' is different in your case) and get support for anything specific she is dealing with along the way.

Note - I never had Neulasta shots either. Onc waited until blood counts dropped enough to warrant, and they never did. One thing I was glad to miss out on! 

bluedasher

My oncologist also waits to see what happens with white count on this therapy before giving something to bring it up. My white cells plummeted to almost nothing after the first chemo and I had to go to the emergency room with a neutropenic fever - fortunately no infection, just a fever from having the white cell count so low. So she prescribed Neupogen (Neulasta is a longer acting stronger form of the same thing). I was taught to give myself the injections and had 3 for each chemo cycle. She said that one dose of Neulasta is about the same as 10 doses of Neupogen so it would be stronger than I needed and cause more side effects.

Neupogen costs a lot less than Neulasta, but it is still pretty expensive. The receipt from the pharmacy showed cost to my health plan of about $100 per shot. 

twoputter

Blair - good luck to your wife today.  She may have a bad time for the first 5-7 days, and then it should get better.  Don't hesitate to have her take the nausea medicine.  I had TCH (carboplatin) for 16 treatments and had EKGS before during and after.  No heart issues.  I've heard that the taxotere is what is really tough on the body; not so much with carboplatin and herceptin. I'm still taking the herceptin every 3 weeks now.   Glad your wife is going through the chemo; I don't think she'll regret it. 

suzieq60

Blair - I hope your wife is managing - give her a hug from me.

Sue

BlairK

It is now Wednesday December 21st in the morning.  As a recap of yesterday, my wife took Dexamethasone and Nexxum (the so-called purple pill) at home.  We then left for the oncologist and treatment center arriving at 9:30 AM.  My wife had blood drawn.  Then we had a consultation with the oncologist.  My wife may visit a cardiologist after the second treatment to be followed and to have one echocardiagram.  Apart from that, we will stick to the plan of MUGA scans every three months which seems to be the norm.  The oncologist explained Neulasta and how it gives a boost to the white cell count and then it drops.  My wife also took Emend.  Then it was time to go to the chemo room or "Infusion Room".  It was quite small with room for only 4-5 patients, the various nurses but not really for family members.  They started at 10:30 AM with an IV of more premeds which included more anti-nausea and also Benadryl.  The nurses did calculations of the doses based on my wife's height and weight.  Then I saw a IV bag come labeled Cytoxan so that was the first chemo my wife received.  Before the Cytoxan and since there was no room for me to sit comfortably, I went out.  My wife asked me to buy her a Quiznos turkey and cheese sandwich and potato chips so I got her a "bullet" (the next larger ones are called "torpedos").  One nurse there said she had been giving patients herceptin for 10 years and they only had two cases of heart problems.  I hope this is accurate.  The other patients were 2 men and 2 women.  I guess they treat all types of cancer there.  It was quiet in the room - no talking, no TV, no music just quiet.  One of the woman patients and one of the man patients were sleeping.  The women had no hair.  I guess that is how my wife will eventually look.  My wife was there all day but others came in and out all day long as their infusions did not last long.  The room had a refrigerator magnet collection on the wall.  Perhaps I can bring back some from China and Hong Kong to add to their collection.  I came back at about 2 PM.  I guess they had already given my wife the taxotere.  I saw the IV bag being administered say "herceptin".  My wife was sleeping a bit.  I went out again for a walk.  My wife finished at 4 PM.  She had no immediate side effects and seemed normal.  She did not complain of anything other than being a little tired.  The arm and veins where the chemo were administered were OK.  I took my wife to a bookstore and she wanted to deliver some cookies to her support group.  My wife was good about drinking water.  She took dexamethasone in the evening.  This morning she is taking Emend, Nexxum, dexamethasone.  She will go at 4 PM to get her Neulasta shot.  From the oncologist, she is anticipating bone and other pain and is prepared to take Tylenol with codeine and Claritin.  This evening will be the last dexamethasone for now.  She will also take something for constipation.  To me it feels like the calm before the storm or maybe my wife is very lucky and will have no side effects.  I kept thinking of what TheLadyGrey wrote about for her first treatment.  I will write more later.

Judy67

BlairK - glad to hear your wife did so well yesterday.  Hope she is doing good today too.  I'll be on my way soon to start my 1st tx but mine is carboplatin/taxotere/herceptin.  I have so much to do still for Christmas but am counting myself down and out tonight because they said I'll be getting Benadryl in my premeds which typically knocks me out.  It would be great if I can still get some stuff done.  Please keep us posted on her progress.  Hoping the best for her with little to no SE's.  Hugs, Judy

BlairK

Dear Judy67 - My wife got Benadryl in her premeds yesterday.  If you are getting a steroid like dexamethasone, that may jazz you up.  At this moment my wife is only complaining of being tired and went back to sleep.  She has a neulasta shot at 4 PM.

Omaz

BlairK - I got the neulasta in the stomach near the belly button.  I did not have any problems with soreness so ask if they can do that.

bluedasher

Blair, I generally felt fine the day of chemo and the day after. Side effects generally waited until day 3 or 4 to hit and were mostly feeling a lack of energy and really tired.

I didn't get Benadryl with the chemo. Like the Neulasta/Neupogen, my oncologist feels it is better to see how it goes without it and only give it if needed. It turned out that I was one of the ones who need something to kick white blood cells up but I didn't need Benadryl so I'm glad she held off on that. 

My DH drove me for the first chemo session. The ones after that, I drove myself (which one would be too drowsy to do safely if getting Benadryl). Since I generally felt fine on chemo days, I would take my laptop and work. 

exbrnxgrl

Glad your wife is doing well so far. Your description of the infusion room intrigued me because it was another example of how different things are for all of us. I had my first Aredia infusion yesterday. My infusion center is quite large, at least 20 curtained cubicles as well as several private rooms for those in beds. Lots of light, a small communal kitchen and plenty of room for each patient to have one or two friends/family members sit with them. Everyone has an individual TV. Some are quiet, some working on laptops, listening to music or chatting with family. Infusion nurses were upbeat and attentive. Volunteers came around giving out poinsettias and offering encouragement. Since infusions are not only for chemo (hematology patients too), some had hair, some didn't. Lots of magazines and cute knit hats available in the waiting area. I hope your wife continues to have an easy time of it .Have a peaceful holiday. Caryn

BlairK

Dear exbrnxgrl - Maybe your infusion room is the Ritz-Carlton and my wife's infusion room is a Motel 6.  Anyway, they are getting the job done.  The key for us is that we like the oncologist and it is only 15-20 minutes drive from our house.  And my wife's chemo chair appeared to be comfortable with a good leg rest.  Today my wife is tired - she will go in a few hours to get her Neulasta shot.  Some of the women are describing that the side effects usually hit on Day 3 or Day 4 after chemo.  I will keep everybody updated.

AlaskaAngel

The infusion room at the small hospital here was a Motel 6 too. The hospital schedules all chemo treatments for one day of the week and uses one of the ICU rooms for it, since the ICU nurses are on duty for other patients and have a higher level of training. No room for visitors, no music, and it is kept very cold to minimize germs for all patients.  All kinds of cancer patients, not just bc. Because it is near the rooms with other very ill patients, it is kept very quiet.

Glad to hear all seems to be going smoothly, Blairk.

A.A.