TRIPLE POSITIVE GROUP
Comments
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This is scary. TonLee - she had 2 left on a 1 year plan? Does the stopping of the Herceptin for her have anything to do with this new study we've heard that is coming out next week?
Prayers for your cousin and all BC sisters.0 -
Yes, she had two left on the 1 year....As far as I know it didn't directly have anything to do with the study, other than the confirmation of heart issues, SUSTAINED heart issues 5 years out...(not the "most women's heart recover" mantra I was given).
Her situation really addresses the MUGA vs ECHO question. I should hear back from her tonight, then I will post either specifics (with permission) or more general info if she doesn't want me to give details....The reason I asked her for permission is because I've linked my personal blog here to a few members, so now it pops up on Google....and she may not want all the deets out. Besides being the most awesome woman I know, she's fairly private.
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I am hoping 6 months is enough......since it looks like I am done due to MUGA of 48% and echo of 52%. I see my cardiologist on Monday. I am sure he will keep me off. I just hope to recover. Ton lee, they told me the echo is better than the MUGA and more expensive. I would have thought the MUGA would be more expensive as it includes nuclear material. But then, what the ' ell do I know! Much love to all
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Oh Boy I don't like all of this-Now anyone her-never got herceptin right? Oh boy
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The 2 oncs I've had both seem to think 6 months might be the new protocol. Of course, I'm hoping for that since I only had 10 out of 18.
Most do recover their EF. I started at 73.9 and went down to 50 and now back up to 65.
Curious about the MUGA vs. Echo. I've had both and my results were fairly close to each other but both my oncs were strong advocates of the MUGAs (which for my insurance cost a LOT more than the ECHOs and the Echos never required approval from insurance like the MUGA). My oncs and cardios says the MUGAs are read by computers and the reviewed by radiologists and cardiologist (if ordered by a cardiologist) whereas the Echos by a cardiologist.
So looking forward to seeing the Herceptin results and hoping 2 years is not the response.
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The 6 month vs 1 year study is the PHARE trial being done in France. Results are being presented on Oct 1 at European Society for Medical Oncology conference. I read about this last night when I was hunting for data to help me decide whether to stop or continue Herceptin; I am right at the 6 month mark.
Here's an interesting business article I found: Roche eyes new drugs as Herceptin faces challenge
Looks like they will be losing the patent on Herceptin in 2014. Interestingly enough, the 2 yr vs 1 yr study is being done by none other than Roche, the maker of Herceptin:
Roche has conducted a study called HERA investigating the benefit of using Herceptin for two years rather than the standard one, while an opposing French study called PHARE is looking at whether patients get the same benefit from using the drug for just six months.
I wanted to also share some very good news...the cardiologist reading of my echo was actually quite different from what the tech told me - 60, not 52. So, if the reading is accurate (not sure I trust anything anymore), I'm in good shape still. That is quite a relief. I still decided to hold on Herceptin until I hear about the study on Oct 1. My oncologist did not offer an opinion, basically agreed that no one knows what is the best time period to give Herceptin.
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Thanks for the firm date and where to look for the study results Dance! Very exciting to finally see the results from these studies.0
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Dance I love the answer u'r Onc. gave-----Nobody knows for sure yet. Oy Vey
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So Roche conducted the two-year study on herceptin? How biased can that get? Granting they had our benefit in mind, but im sure their profit in this outweighs the concern for us. We should bite that bullet only if proven very very beneficial.
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If this study does show 6 months then it basically means Herceptin mainly over the chemo period. My TCH ran from May 5th 2011- August 19th 2011. My last Herceptin was May 2012!!!!
I would have finished Oct 2011 if the 6 month protocol had been in place.
At the risk of jumping the gun on the results, I am feeling rather concerned that I MAY have had a drug for alot longer than I needed. What if heart issues are long term? Also the whole resistance to the drug thing. Does this mean that those women who did a year are now resistant and if so, what next if we reoccur?
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Good morning Ladies!
Talked with my cousin, she okayed sharing so here it goes.
Back story for those unfamiliar. She was diagnosed exactly 1 year after me, same triple pos, same breast, almost exact same place! No nodal involvement. I encouraged her to ask for a SN biopsy ONLY. (She is active. Retired firefighter, runs a spinning pilates studio...VERY active). She got a lump, rads, TCH, and SN biopsy.
Early on in Herceptin her EF went down a few points, per MUGA. At her second MUGA it had gone down a little more. But the 3rd MUGA showed it "went back up."
Her Onc said he wouldn't give her any more heart tests since she only had 3-4 more Herceptin and her heart was "improving."
While she was with me in Texas (for my reconstruction) she mentioned her heart was skipping beats. As a trained paramedic, she wasn't overly concerned because she drinks a lot of caffeine. However, I felt her pulse and it literally went, hit, hit, NOTHING, hit. Every 3rd heart beat was JUST NOT THERE.
She's not a big researcher. So I encouraged her to demand another heart test.
She kinda shrugged it off because her Onc (the "professional") said she wouldn't need another. Everything seems ok now. (HEADS up to all you who have Oncs like this.)
When the latest study showing heart damage 5 years out came out, when I became aware of it, I sent her the study and strongly encouraged her to get her heart checked.
She did. Called the Onc (the one who said heart tests aren't needed), and got them.
Below is what she told me.
"I wore a halter (EKG) for 48 hours and out the 230,000 heartbeats, 10,000 were PVC's or PAC's. The cardiologist wasn't really concerned until he was reviewing the echocardiogram with me. He told me that it measured my ejection fraction between 50 and 55% which "anything above 50% is normal". I told him that my original MUGA was 69%. At that point, he was concerned. He ordered another MUGA. Had it yesterday.
I saw my oncologist today and he said that it showed my EF as 80%. It's an inaccurate reading. He suspects because of all of the extra beats that my heart
is pumping, and since the MUGA measures blood flow through the chamber somehow it's calculating that. The onc said that the echo was probably
accurate (whatever accurate is here). I will not be receiving my last 2 herceptin treatments."So it appears that the MUGA is acceptable and accurate if you aren't having extra, or skipped heart beats. If you are, then the ECHO is the more precise test.
Here's what's really scary to me. Like I said above, she's a trained paramedic. If she wasn't, if she didn't notice the heart skipping thing....her Onc would not have given her any more tests because "everything seemed ok" according to the MUGA and she would be getting two more infusions of poison to the heart.
Turns out, her EF NEVER went back up....the MUGA was wrong.
I was told this week that women who don't have an improved EF within 12 months of stopping Herceptin only have about a 5% chance of it improving over time. Add to that the latest information about 5 years out and no plateau, and the odds are actually greater the EF will get WORSE with time, not better.
What I learned from this is, if you think you're heart is not right..and the MUGA says it is..ask for an ECHO. I've had both, and the ECHO confirmed the MUGA results.
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Jackboo, if it recurs even after one year if herceptin, then it would have been a failure in the first place. Would we take the risks again knowing it failed us the first time around?
TonLee, this is another scary story for us her2 ladies. Your cousin could have just dropped dead one day had she not insisted on being worked up. How about the millions out there who couldnt know there's something wrong until it's too late? Or if we rely solely on what the professionals tell us? Even diagnostic procedures can fail us. Your second to the last paragraph is what scares me most.
God help us all.0 -
Jackboo, if it recurs even after one year if herceptin, then it would have been a failure in the first place. Would we take the risks again knowing it failed us the first time around?
TonLee, this is another scary story for us her2 ladies. Your cousin could have just dropped dead one day had she not insisted on being worked up. How about the millions out there who couldnt know there's something wrong until it's too late? Or if we rely solely on what the professionals tell us? Even diagnostic procedures can fail us. Your second to the last paragraph is what scares me most.
God help us all.0 -
I just had tx#4 of TCH yesterday, during my blood test prior I brought up the study of CHF to the PA. She asked me to send her the study and related articles. But before I even left the office the MO had scheduled me for an Echo in 2 weeks. Last night I sent on all of the links but I feel good that they are listening to my concerns. I'm not sure about stoping herceptin but want to be followed more closely after treatment. I think that is he missing part, after we finish chemo it's as if they feel there is no more reaso for Echo or MUGA since no longer taking herceptin. At least that is the way I am reading it, I hope that's correct.
Jae0 -
I don't think just because you have a recurrence doesn't mean that the Herceptin didn't work. There are women with mets that are on Herceptin continuously for years. Eventually it can stop working but it can takes years. If they stopped right away the cancer wouldn't be controlled.
Again don't freak out about this heart thing… but be diligent. I know I would still do the Herceptin knowing there could be these problems because mets is worse. Also it's not like ALL the women had problems in 5 years. Granted we don't know about 10, 15, 20 years but it could plateau in that time frame. We need more studies.
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BCBarb,
I don't post this stuff to be scary...lol. It's just information we need to keep in the back of our heads as we make decisions going forward.
I'm all for having a positive attitude, yadda yadda, but I'm a realist who can absorb the bad with the good and move on. I'm not a big worrier. I'm sure big worries hate to see me post
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BCBarb,
I don't post this stuff to be scary...lol. It's just information we need to keep in the back of our heads as we make decisions going forward.
I'm all for having a positive attitude, yadda yadda, but I'm a realist who can absorb the bad with the good and move on. I'm not a big worrier. I'm sure big worries hate to see me post
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Thanks for posting TonLee. My EF was originally 67 and has not recovered in years above the low 50's. My onc insists on Echo and Muga 's alternately every three months. I just went through TE surgery for the 2nd time this week, and prior had to have a Muga for the surgeon.
the only time I really notice it, is hiking at high altitudes. There are trails I used to be able to jog and now I get sweaty and dizzy quickly, feel like my heart is about to beat out of my chest.
But YES! I am happy to be here and dizzy, so I would take herceptin again too!!0 -
Just thinking back to my post neo chemo lumpectomy pre op testing. My surgery was postponed bc my ekg was funny. The anesthesiologist wanted cardiac clearance. I got it from a cardiologist who was not all that familiar with herceptin. When I saw the anesthesiologist prior to surgery he told me...and I was insulted when he did....that I looked a lot better han my EKG! I looked like h..l just 3 weeks PFC.
He explained what he saw on ekg but I was so nervous I didn't really listen.
I have to revisit it all in the near future.
Has anyone had LUNG issues with herceptin? Sometimes I feel a little weird lung thing. Like when you breathe in very cold weather.
Despite all this new long range cardiac discussion even if he worst is true I would still choose to do Herceptin..
The alternative we faced prior to Herceptin was that bad imho.0 -
Tonlee
Thank you for sharing your cousin's story. I posted recently about my experience of MUGAs and echos. Had a reading of 36 (MUGA) followed by an echo of 65.
I think in the midst of all this uncertainty, it just pays to be vigilent. I would rather have regular follow up heart tests, especially as I did have palps. Just dont think they will be granted and of course CHF can be asymptomatic.
Best wishes to your cousin. It was good of her to share. The more info the better, whatever its nature, scary or otherwise.
Liz
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bcbarbie - I agree with you about the high potential for bias on the 1 yr vs 2 yr study...
tonlee - wow, thanks for sharing that story. Your cousin is so lucky you are well read on this and pushed her to advocate for herself. That is freaky about the MUGA being off if you have an irregular heartbeat.
swimmom - I agree. The missing part is the follow-up/aftercare. That is what I want women to know - don't blow it off, get your heart checked even if no symptoms. Don't not get Herceptin b/c you are afraid of heart damage - cancer kills, too - I would still do Herceptin again. But, weigh the risks based upon your pathology for how long you are willing to take it - and be an advocate for yourself for ongoing monitoring.
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TonLee, "concerned" was what i should have used and not "scary". Sorry. It's a very informative story. But i wish i could be like you in being not a big worrier.
Yes, we still opted to get the herceptin despite and because of the ugly alternative.0 -
TONLEE Thank u for sharing with us--very informative--mind bogling to me.
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TONLEE Thank u for sharing with us--very informative--mind bogling to me.
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I think what we all need to realize is that this is a new drug, only out in the public arena , what, six, seven years? That barely gives early stagers five year outcomes. Like it or not, we are the experimental group. But, so far, most would choose Herceptin tx, rather than the alternative , which I can't remember the exact statistics, but I think I remember it as 40% survival, forgive me if the stats are not correct. So, once again, we do what we can with the information we have at the time. and we go on, and Live as fully as we can. Much love.
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I just spoke with my Onc.
I'm agog. DESPITE the makers of Herceptin's recommendations, AND the newest studies, he's said once a woman is done with Herceptin he won't scan her heart UNLESS SHE HAS SYMPTOMS!!!! (This is a change from where he was a year ago.)
I argued because not only does the Herceptin literature say we should be monitored....generally there are NO SYMPTOMS with CHF until its the big one!! Besides that, my cardio said I will have to be monitored FOR LIFE unless my EF comes back up.
Anyway, I'm getting my scan...lol, just waiting for them to call me back with a date. But dang. All the women with me, and behind me aren't getting squat from my facility now once Herceptin is done.
I can't believe it. He was the one who told me in the beginning these heart scans were very important...
And now that there is a study confirming it, unequivocally, they've gone the other way.
I have a pretty good idea it wasn't him tho. Cutbacks...the military is taking some pretty big hits to budget and personnel, (at least here). I have a feeling the hospital bureaucrats have made this call.
Never thought I'd say this, but thank god I had heart issues and had to stop Herceptin. It's in my record so really they can't deny my care/scans. Or at least I'll have a leg to stand on when it comes fighting time.
Wow.
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Sounds like I won't be getting a scan then… especially since I'm 1 year PFH. Guess this is something I'll discuss with my PCP just so he knows I'm at increased risk.… but that risk still appears to be about the same as my cancer recurrence risk which I consider low… and being younger that risk is even lower.
So I'm guessing the risk 14% (TCH) rather than 4% (no treatment)… but for my age might be even lower.
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Good grief TonLee. No logic is there! Glad you are getting your scan though!
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Good grief TonLee. No logic is there! Glad you are getting your scan though!
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Good for you Tonlee
Hope you gave your onco hell, lol. Which type of scan will you have. Im going to ring my onco tomorrow. See what he says. The attiude here is very blase: my onco never mentioned the possibility of irreversible heart damage. He was like well if you experience it, you will recover. Wish that was always the case. Over here you dont even get a numerical reading on a echo/muga unless you push. Just a letter saying "good heart function."
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