Am I the only one?

daisybell

I had 4 A/C 3 weeks apart and 12 weeks of taxol/herceptin but I feel like I am the only person not to have dd A/C. My onc said she was not comfortable giving dd A/C with herceptin because of cardiac problems. Not enough published to show it does not increase cardiac effects or that it adds much when using herceptin. But it makes me feel insecure that I was not aggressive enough.
Still doing herceptin until Nov. Didn't even know about dosing options until after had started the chemo.

Sue

Sue

Anonymous

I'm doing DD A/C then T/H, but my onc definitely gave me the option of doing the standard every 3 week regimen. She said she would prefer me taking the DD, but said it didn't really matter a whole lot. I think you'll do fine....

Best wishes,
Miss S

daisybell

Miss S

Thanks for your reply. Still recovering from rads and have a pain in the knee. Every ache makes me paranoid.

Sue

debic

SuI am doing DD A/C then 12 weeks T/H my onc didn't give me the option of doing 3 week regiman. He said I was in good health (except that darn cancer) so to get it over he would rather give DD of A/C and the 12 weeks of T/H. I have my last A/C next week. So how was the T/H???? I have worked through A/C and would like to keep working as I do well at work, but have a hard time when I get home and my mind as time to think.
Debi

maryannecb

I did my Ac every 3 weeks. I too did not know about dose dense scheduling. But...q 3 weeks seems to stand up pretty well against DD. Less trouble with white and red cell counts too. Time will tell which regime is superior if at all.

What is done is done. Hope it has done a good job for you!

Fists up!

daisybell

Debi

12 weekly T/H was easy compared to A/C. My main problem was reflux from the decadron they give you before the taxol. Initially my hemoglobin was low, but I think that was still from the A/C. After a couple of procrit shots my red and white counts were normal the whole time. I was much less tired and food tasted normal again. I took 30g of glutamine a day and vit B6 and only had some minor tingling in my toes after I was all done, and it's gone now. I think you'll find it much better, only going every week is a pain. Now I am on herceptin every 3 weeks and no side effects to speak of! Hope it's doing it's job.

Sue

pnpmary

Found an abstract: dose-dense chemotherapy for primay breast cancer. Kuemmel S-Current Opinions in Obstetrics and Gynecology 1Feb 2007: 19(1): 75-81.

Trying to get the full article. "Dose-dense strategies have been associated with a modest impact on disease recurrence and overall survival of patients with early -statge breast cancer. Subset analyses suggest increased benefits for specific tumor subtypes such as hormone receptor-negative, highlty proliferative or HER2 overexperssing tumors.

Sounds like it is a good idea for us HER2 girls.

Mary

k4katz

I also had the AC every three weeks, then 12 weekly taxol and herceptin. Now I am wishing I had the AC DD! Ack!

daisybell

Has anyone had decreased Muga that had dd A/C?
How are you Kristin?
I finished rads, underarm pretty red and sore!
I've beeen hung up on this dd thing all along.

Sue

mccarroll

Sue:
I am going in a noon today for my second MUGA (I did 4 DD AC, then 4 DD T with 12 weekly H, and I'm now on a 3 week protocol of H until October). I am anxious to get my reports to see if I've had any decrease. Wish me luck.

Karen

debic

Sue,
Thanks for the good news that T/H will be better. It is like when you start chemo it is the unkown that gets you. My onc feels DD or 3 weeks isn't as important as Herceptin.
Karen I will say a prayer for your muga test today. I have read a lot of your post and you always seem so up and positive. I have gotten a lot of info and strength from your post thank you.
Debi

daisybell

Good Luck Karen

If you feel well I think that's a good sign. Last time I had one they killed my arm. Maybe next time I;ll have them use the port.

Sue

Sue

LittleFlower

SUe,
sounds like we're on the same path. I did AC every 3 weeks, then 12 taxol/ herceptin. finished all that in jan, and did rads, finished that late march-- had the worst burn under my arm too! now i'm on herceptin alone until october. I was really hung up on the dose schedule of ac, especially because other ladies i had befriended who were her negative were on dose dense AC. for a while i thought my onc must have believed i was a lost cause for not trying to be more aggressive! Here's my way of thinking: AC is important, it's strong stuff and i believe it killed alot of cancer cells, but Herceptin is so specific! i feel like it's the key player in my treatment. besides that, the weekly taxol is crazy, i mean every week we're poisoning the cancer cells, they had NO CHANCE! i think we had a very aggressive treatment....and still as 'safe' as possible for our hearts. you don't want to learn in years from now that you have heart problems from a treatment that had never been tested. It's like Maryanne said, what's done is done... Let's concentrate on Herceptin now and all its beneficial properties, we'll get through it just fine......
take care, LittleFlower

mccarroll

I was laying on the table yesterday, after my MUGA. the tech came in, after checking to make sure they got what they needed and exclaimed (YES, he exclaimed) You have a GREAT heart. My ejection fraction was 72!!!! He and I were thrilled with this number after chemo and 6 months of herceptin!! DH said "I always knew you had a good heart".
I'm on cloud nine today. Karen

RobinTN

That is wonderful Karen.

nitewind

Karen that has to make you so happy and I am so happy for you. What great news!
Going for an echo and a nuclear stress test tomorrow morning and praying for an outcome like yours.
God bless!

lastminuteD

Awesome news Karen! I have my first muga tomorrow before I start chemo and I can only hope mine is as good as yours now before I get started!!!! Interesting tests we get to endure for sure.

Good luck with your tests today nitewind!!
Dawn

Towanda2

Sue,

I was dx in Feb 04 and did AC every 3 weeks, 12 weekly T/H, then 40 H. I see a highly respected onc in central CT, she is she only takes BC patients, ran the local Herceptin trial, and gave it to me "off-label" before it became available for early stage. I just passed the 3-yr NED mark and doing great!

Herceptin has proven to have fabulous benefits for Her2+, and more treatments are being developed and tested all the time. Don't get hung up on second-guessing your previous treatment, the future looks very promising.

BethNY

I was way back when herceptin was first being approved for early stage BC. I did DD a/c then DD taxol, then I had reconstruction, then I started herceptin, first weekly till my veins crapped out, then every three weeks. I finished almost a year ago...

daisybell

Little Flower
What you say makes sense. My onc at Yale who came from Dana Farber still thinks this is the best path to a cure. My 6 month MUGA was 60% down from 70%, still OK. Hopefully it won't go down more.
Towanda2
Great to hear those success stories, I felt so doomed in the beginning.

Thanks to everyone for your replies.

Sue

Chelee

Sue, I can SO RELATE to you feeling insecure about not recieving the same chemo as others. I am STILL ticked off that I ONLY got TCH and was NEVER told about AC..let alone about DD. My onc never mentioned AC...he told me I would be doing TCH and he even followed up with I had NO SAY SO in my treatment options. I was terrified hearing I had an aggressive cancer so just did as told.

I SURE WISH I knew BACK then what I know now and that wouldn't of happened. I've had two other onc tell me they would of given me AC...PERIOD. I have no clue why my onc did this and I am still mad about it when I think about it. I am a stage III'er with 5 positive nodes and could NOT have radiation. Her2/neu 3+++ and er & pr weakly positive. He OWED it to me to treat me aggressively. You always WANT to hit the cancer harder the FIRST time...NOT later. So please take some comfort in the fact you did get AC even if it wasn't DD.

I had alot of women that tried to make me feel better telling me about the study where AC verses TCH is ALMOST as good. I don't care about "almost". I wanted what everyone else got. I feel so cheated...this is my life we are talking about. I can't change what was done..so I just push forward and try not to think about it.

But seriously...I think you were treated pretty darned good. Your going to do great. But I SO UNDERSTAND where your coming from. God bless you.

Chelee

sparklegirl

Debi,

Just make sure you ask your onc about the bone pain with Taxol. If you can stay on top of that, Taxol is much easier.

Karen

DebbieB

I am 51 and in 2001/2002 went thru 4 rounds of AC chemo and then 35 rads on my left breast. I was highly HER+++ and ER-/PR-. At that time AC was standard and herceptin was only offered for stage 4.

I have done great until last month! I started having shortness in breath that got worse over a 3 week period. It was to the point I couldn't walk 10 feet without stopping. After 4 doctor visits and 2 trips to the ER on my last ER visit my ankles were swollen and the ER doctor said it was heart problems and not lung. I had congestive heart failure! After ekgs, ultrasounds, stress test and then heart cath, I found out my heart was damaged and it was most likely from the adriamycin and radiation. I'm not overweight, don't smoke, don't drink, blood pressure is fantastic, my cholesterol (good and bad) is fantastic as well and there was no blockages at all. I'm now on 8 different meds to get my ejection fraction up from its current 24%.

I'm just trying to bring awareness because it can be years before the heart damage shows up. If you experience shortness of breath, especially the kind that wakes you up at night, you may be dealing with congestive heart failure. I always knew that adriamycin and rads could cause heart damage. I just never understood the symptoms or that it could occur years later.

But you know if I had to do it all over again, I would still do AC and rads! I don't think I would be alive today had I not.

Debbie

daisybell

Debbie

Sorry to hear about your heart problems, it's scary to think just when you're feeling good..
I guess this is why my onc is cautious about the dd, she said not enough long term data or large enough study. Still you have to live long enough to have the long term effects.

Sue

dginoregon

Oh, Debbie! (( )) I appreciate that you shared with us that the heart problems can show up so much later ...

I received 4 DD A/C starting 6 weeks after surgery (had Mammosite radiation during the 6 weeks). Ten days after last A/C onc started my 3-weekly Herceptin infusions. I am almost at #9 infusion (4 days from today) and then I will be at the halfway mark. Onc doesn't do MUGAs, sends me for Echo every 3 months. Time before last it was 58, and most recent one 56, if I recall correctly.
The tech assured me that it was a "good reading" but now that I read about Karen's 72% and Sue's 60% down from 70%, I'm thinking mine needs closer watching.
I wonder whether an Echocardiogram is as reliable an indicator of ejection factor as is a MUGA? I'm going to read up a bit and ask a few questions on Friday when I go for H#9.

Hope you are all having a lovely Memorial Day with your families ...
Delina

DebbieB

Delina, from all the information that I have been hit with in the past couple of weeks,I do know that 55-60 is within the normal range. I have my first appt with the cardiologist on Wednesday since leaving the hospital. I will find out then what test he does to determine what my current EJ is and I'll let everyone know. The first time I heard about the EF was after my echocardiogram. The second reading was after the the heart cath and the numbers were the same. Right off the bat I'm not sure if they even did a Muga scan while I was in the hospital for CHF but they did so many tests. I just know the cardiologist was surprised the onc had not been doing them since I had adriamycin and rads to the left breast.

I really don't want anyone to have to go thru the stress of congestive heart failure. Knowing what I know now, I would have INSISTED that my onc do muga scans to check my heart Ejection Fraction. I may not have been able to do anything to stop the CHF because I know adriamycin and rads can cause heart damage. But I may have caught it earlier before my EF got down to 24.

Happy Memorial Day!

Debbie

Jyber

I am having A/C every three weeks (x 4). My oncologist said she will not do dose dense if the program includes herceptin. After the A/C I will go to Taxol with herceptin every three weeks 4X, then herceptin alone.

Frnakly, I am just as glad not to be doing dose dense as it makes it easier on me to handle the chemo - I have a nice stretch of "good" days. I hope that the difference in outcome is minimal.

Re MUGA versus echocardiogram, I am under the impression that the echo is more accurate. I first had a MUGA at the hospital which came in with an unacceptable ejection fraction and my oncologist said she could not do herceptin because of it! This was very distressing news to me. But fortunately she promptly sent me to a cardiologist to check it out and the echo he did showed my heart in fine shape. He said the MUGA was inaccurate and to rely on the echo. I will be monitored by echo every three months thorugh treatment. The cardiologist says he has monitored several patients on herceptin and while some have needed to "take a temporary break" from herceptin if their EJ fractions have declined, every one of them has been able to resume and eventually complete herceptin treatment.

daisybell

I was told that the MUGA is more accurate. The tech who did my last one that said the ECHO shows more variation depending on who is interpeting it, at least I think that's what she said.

Sue

Jyber

Yes, seb44, you are correct. After I posted (should have done this before posting!) I did research and learned that the MUGA does give more accurate EF readings. The echo gives other info though.

I have no idea why my only MUGA was so off (the machine? the tech? the day??) and will have to ask about that. I wonder if I had another MUGA what it would say, but the cardiologist just uses the echoes. I am just glad that I can get the herceptin.