TRIPLE POSITIVE GROUP

Rose0766 · January 2015

when I had my first loading dose of herceptin I had the hip and thigh muscle pain as well, I told my MO if the pain was going to be like that I wasn't sure I would continue, Percocet helped, I told him I didn't want the infusion speeded up, he kept it at 90 min and the last two treatments have been ok, just muscle stiffness, I have my last taxotere/ herceptin/ perjeta combo on Tuesday, then I start herceptin alone every 3 weeks to complete the year, I'm going To insist we keep it at 90 minutes

CassieCat · January 2015

Debiann, I like what you had to say. Maybe one day, but not TODAY. That's a good reminder to enjoy today.

knmtwins · January 2015

Special K - I probably wasn't clear, I know about testing for HER2, what I was referring to was tests like the oncotype or a mamoprint.

All - wow - so this horrible stiffness whenever I get up might be the Herceptin??? I'm guessing, during chemo, I was so yucky the next few days I never even paid attention to this. I had Herceptin last Wed. and the last few days have been hurting. Also, I'm getting Benadryl and Herceptin (I have a reaction history to all sorts of things, so when I asked, MO said he'd keep the benadryl) and I get real queezy during my treatment. The odd thing was I could eat and ate like a pig during my TCHP infusions, but I also got a bigger pre cocktail, with Emend, Zofran, Steroids, Benadryl and Ativan (I think).

SpecialK · January 2015

knm - Oh sorry! My mistake! Her2+ are not eligible for Oncotype but they are for Mammaprint. Mammaprint generally will come back as high risk for recurrence for those who are Her2+ but I was glad to have the genetic assay info in case it comes into play later when more personalized/targeted treatment may be available.

Jennliza · January 2015

Hi All,

Wondering if anyone's heart function (LVEF) has been affected from Herceptin? My last echocardiogram has shown a pretty significant drop in LVEF function. It dropped to from 65 to 47. I'm told that 55 is considered Normal. I have an appt with a cardiologist on wed.. Wondering if you stopped Herceptin all together or just skipped a 1-2 treatments? How long did it take for your function to return to normal (or did it not)?

The crap just doesn't want to end- DCIS that became invasive, 2 failed IVF attempts, infected port that wasn't removed so infection spread and landed me in the hospital for 12 days, lost my job because of hospitalizations (contract not full time - no protection), my right implant shifted so points up and out so need another surgery to fix it and now heart issues....this is all since April....I am so ready for the crap to end and life to improve!!!

SpecialK · January 2015

jennliza - they usually look for either a 10 point drop or a 10% drop. Some have delayed Herceptin for a period and then resumed, others have had to discontinue. Some have recovered a normal LVEF, others have not. Hopefully those who have had this happen will chime in soon for you. It is also important to note that echocardiograms are a bit subjective and there is a degree of human error in measuring LVEF.

soriya123 · January 2015

Hello and Happy New Year to all lovely ladies! , I haven't been on this thread for a while. Hello to all the new ladies. 😀

Blownaway · January 2015

Jenniliza - Hi there, sorry you are having heart issues but I'm right there with you. I remember you from the July chemo board and I have to say you really have had it bad. I hate to whine anywhere near you as my problems have been nothing compared to yours. My normal LVEF is 56 - this is low/normal. I understand most people are between 55 to 70. Mine dropped to 35 somewhere between the time I started chemo (an echo was done at that time) and about 3 months later. I had 4 rounds of TCH followed by 3 herceptin only infusions and rads. Herceptin has been stopped and I'm having the port removed because my onco says that even if it bounces back (now monitored every 4 weeks) its too risky to resume herceptin because there is no guarantee that it will recover again. My next echo is Jan 20th, just had a heart cath to check for blockage but none found so the cardiologists concurs that it was caused by herceptin and having rads to the left breast didn't do any favors to my heart either. I was placed on 2 heart meds to give my heart a rest so that it might recover. I get breathless just talking and Ive been told not to take any stairs and to walk slowly, take naps and rest as much as possible. Yeah right.....

Moonflwr912 · January 2015

jen, I had to stop Herceptin after my 2nd H alone infusion. My EF dropped from 57 to 42. they made me quit permanently. I started this with an EF of 60. My last MUGA/Echo I was back to normal. I had both echo and MUGA. I know of only 2 people who Did not return to normal, most seem to. Much loveX

Jennliza · January 2015

Thanks SpecialK, Moonflwr and BlownAway...

I did not know that Echocardiograms can be subjective. I wonder if the cardiologist will repeat it.... I had he echo on the same day (right before) as my last Herceptin. Wouldn't have had the Herceptin if had known it was affecting my heart. Now wonder if it's gone further down

Tomboy · January 2015

Yeah right! Don't we wish! But then we would get fatter, and fatter is a recipe for disaster for us er + women. I had to stop herceptin for several months. When I started my first echo said upper 70's. the man who did it said i had the heart of an athlete. well maybe, i could still run. so it did drop after chemo was done, more than 10 points or ten percent like ashla said. but it did recover, i think the last one was like 68. and, i was equivocal by both tests they use for her2, but they told me the wanted to treat w/ herceptin, so i did. i did do the whole year of it, but it took me longer because of that. i think i stopped for 3 months. i do get short of breath when i walk fast or uphill.

Jeez, Jennliza, you had more than your fair share of troubles! I don't think they can kill you if they tried harder!

knmtwins · January 2015

Yep, they are subjective to the person doing it. My cardiologist prefers to do it in office, as he doesn't like the inconsistency he gets in the reports from the hospital. Fortunately, I had issues 8 years ago when pregnant, so he had an echo from then, as his person was on vacation when I needed my echo to start. So he could look at the hospitals report vs what I had been previously, so he felt confident with my baseline. My second was done at 4 months, because I was about to undergo a BMx, with reduction and TEs (7 hours on the table) so he wanted to ensure my heart was still in good shape, fortunately it was. So, as I ramble, my point is, now that you are seeing a cardiologist, I would presume they would be done in house, and by the same tech from now on, so you will have consistency.

Along the same lines, what are the guidelines for getting these done? Some on Herceptin are getting them, one lady at my center says she hasn't had any, and she is 65, my MO sent me to a cardiologist and expects him to decide what schedule I should be on... I realize we are all different, but some constancy would be nice.

Also, for you ladies whose dropped, did you have any personal idea that this was happening? Some symptoms? Or was it just found at your routine Echo/MUGA? I guess it is just nerve racking, as at least two of us from the July chemo group have had this.

Pbrain · January 2015

I went from > 75% down to ~45% and I could definitely feel it. But I was also very anemic during chemo, so not sure if it was lack of RBCs or low LVEF that made me feel that way. I did feel like a million bucks after a red cell transfusion. They also made me take a 6 week herceptin break.

I can feel that I'm pretty much back to normal now, no breathlessness. It took a long time and gardening wasn't that easy this last Spring, but it does come back so hang in there. Now, all that's left are hemorrhoids and neuropathy in my feet...slowly but surely ;-)

Tomboy · January 2015

I can't really walk uphill and talk on the phone at the same time, the person always wonders what i am doing! or sometimes when i am gardening, or other physical activities. it might be femara though, a known special effect.

Blownaway · January 2015

My baseline was definitely 56 because I've had echos with several different cardiologist over the years way before B/C was diagnosed. I originally saw cardiologists years ago because the little old ladies at the gym were running on the treadmill and I could only walk and was still out of breath and seeing stars if I raised the angle. Before starting TCH MD Anderson did an echo and sure enough it was 56 again. Three months later it's down to 35 and I'm told to go ahead a have my port removed because cancer treatment is over for me. I had noticed that my distance ambling along on a bicycle with hubby was declining. I finally could not ride bikes with him anymore and now I'm told to rest and not do anything strenuous. Next echo is January 20.

Mommato3 · January 2015

I get a Muga instead of an echo. I had one prior to AC and one prior to THP. My MO said i needed to have them done every three months to make sure there are no issues. So far, knock on wood, they haven't changed.

ElaineTherese · January 2015

I get Mugas, too. I've had three: once before AC, once before Taxol/Herceptin/Perjeta, and once after I finished chemo. No decline here, so I guess it's on to more Herceptin for me once I recover from my surgery and begin rads.

SpecialK · January 2015

knm - I had them quarterly throughout the year of Herceptin.

CassieCat · January 2015

I'd like to share here with the triple positive group that I had a complete pathological response from the neoadjuvant TCHP. Pathology showed no cancer cells in my tissue or lymph nodes, according to my surgeon this afternoon. Great news!!!

SpecialK · January 2015

cassie - yay!!!

Blownaway · January 2015

What's a MUGA? I don't think I've had that - just echos although I probably should have based on my situation.

SpecialK · January 2015

Docs use MUGA and echocardiogram interchangeably - but a MUGA is somewhat more invasive as it involves an injection of radioactive tracer.

Edited to add links:

http://heartdisease.about.com/cs/cardiactests/a/muga.htm

http://www.nlm.nih.gov/medlineplus/ency/article/003869.htm

Mommato3 · January 2015

That's fantastic news Cassiecat!!

formydaughter · January 2015

CassieCat - Congratulations!! That is great news. And I see that you are recovering from surgery. What great news to help you through recovery. I hope that you are feeling well overall.

Since I had my surgery before treatment, I always feel a bit unsure about my response to it. I'm glad that you have a measuring stick! That is excellent news.