TRIPLE POSITIVE GROUP
Comments
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F1_IT_Chick ... MY EF went down 15 pts after second herceptin infusion. I've now had 4 and before anything else is done I am scheduled for another echo. This will be my third echo. My oncologist will take me off herceptin if my EF is lower than 50. I also now have heart palpitations.
The cardio I'm now seeing brought his big black medical book for me to look at. He said 12% of those taking herceptin have heart issues. I'm not sure what it all means but know it is more than 1%. And recently, I heard it is higher than they previous thought.
My onconolgist had me do a echo before herceptin treatment for baseline...also scans.
As much as I hate getting a mastecomy I would before rads or tamoxofin.
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F1....i would ask your onc what would happen if he didnt test, you dropped out of the safe range and had a heart attack. Whether you stayed on herceptin wouldnt be an issue then. My onc has had one person he had to completely stop as she dropped to 35. She hasrecovered but not to her original strength. I dropped from 65 to between 50-55. It did bounce back at my last one. I also had palps off and on, usually right after I got herceptin.
I believe Tonlee'sheart has not come back to normal. Cant remember if she made it all the wa through or not.0 -
Wow. Great information tonight.
Chick: Your onc seems to do things a bit different than most...I believe. I think the majority of us here who were to have Herceptin had the base line MUGA (or Echo) and tested routinely during Herceptin. I made it to #10 and had to stop after I dropped 10 points down to 50 (and I started at 73). She didn't want to risk me dropping below 50. Best wishes!
Seeing the # of women here who had problems with Herceptin, I wonder what the real #'s are and if anyone really reports when problems occur. Just curious about that!
Fluff: How exciting to be part of the trial. I love hearing your details. Please continue to keep us posted.
Arlene
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Chick my onc had me get a MUGA before I started chemo/herceptin. Never had another one. They asked if I had shortness of breath or palpitations before every treatment but no additional testing was done. I seem to be fine.0
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Lago: I need to add that I never had shortness of breath. Told my onc I felt just fine and she said...now, but if I let it go and you drop more you won't feel fine. So happy it worked out for you so well but I'm glad my onc(s) were cautious. Now, had I not had the extreme palps after chemo/herceptin #1, they may not have been so cautious.
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I have a question for anyone here who might scuba dive. We are planning a dive trip and I'm wondering if there are any issues that anyone might be aware of with diving and LE. Of course, I won't dive until this port is out but just curious is anyone has any feedback on this question since every doctor I've asked has no clue.
Thanks, Arlene
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Arlene.....It's a long link...Look under IN THE SWIM
http://www.lymphnet.org/lymphedemaFAQs/riskReduction/summerTips.htm
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Thanks Sheila!
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Chick - I've had 2 mugas and 2 echocardiograms while on herceptin. I thought heart monitoring was standard with herceptin.
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I thought so too Wendyspet. It's recommended in the prescribing pamphlet for Herceptin.
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I had Muga before A/C chemo...Second one was done about 5 or 6 months later after I started Herceptin.
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Re: Echo's: I had one before AC and one before starting Tx/Her and one EKG in between. I was told I would have an Echo every 3 months.
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FWIW, I never had any sort of heart monitoring on Herceptin.
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I had an echo before AC also one after AC before herceptin and now every 3 months til I am done
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I'm starting AC-TH in two weeks and had a MUGA last week. I thought it was standard, too.
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I've had 2 MUGA tests so far. One before I started FEC and a second before I started Taxol/Herceptin. I will get one every three months he whole time I'm on Herceptin - it's mandated by the government here in Australia for everyone on govt subsidised Herceptin.
Jenn0 -
I have had a MUGA every 3 months. My onc likes to continue with them for 1 year post Herceptin.
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I was told a echo is standard every 3 months. Because I'm having heart problems, mine are every 6 wks. I am glad my oncologist is cautious. You might feel the palpitations, but might not realize your EF is lower than it should be. I' rather be safe than sorry.
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The Herceptin site states:
1. "The risk and seriousness of these heart problems were highest in people who received both Herceptin and a certain type of chemotherapy (anthracycline)."
2. "Your doctor will evaluate your heart function before and during treatment."They don't say what "evaluate" means. To be honest I was a bit surprised I didn't have at least one more MUGA but I have a feeling my onc doesn't do this because the risk with TCH is much lower than AC-TH… and those who have issues do have symptoms.
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Chick
I'm having rads to the left breast right now.... They're using tomography and I'm doing it face down so there is no nicking of either the heart or lungs. think there may be an issue if ypur breasts are very small.0 -
Hi sunflower71 and everybody else!
I will be interested to hear your ongoing thoughts about the ooph. I have my last Herceptin this fri. Yipee!!!! I am going to check with my doc what % estrogen I was and enjoy the summer. I dont feel like rushing into potential heart and bone problems. My friend who is post menopausal developed arthritis a few months after starting Arimadex and now has to take Tramadol daily for the pain. Going into permanent early menopause at age 42 is off concern for me. This is such a personal decision. I admire and feel sympathy for all those who are affected and thank you to everyone who has contributed their thoughts and own research.
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For those who may be interested, here is an excerpt from the professional version of the Herceptin prescribing guidelines. I did not cut and paste 2 tables (which they refer to as studies) b/c they would not format correctly.
5 WARNINGS AND PRECAUTIONS
5.1 Cardiomyopathy
Herceptin can cause left ventricular cardiac dysfunction, arrhythmias, hypertension, disabling
cardiac failure, cardiomyopathy, and cardiac death [see Boxed Warning: Cardiomyopathy].
Herceptin can also cause asymptomatic decline in left ventricular ejection fraction (LVEF).
There is a 46 fold increase in the incidence of symptomatic myocardial dysfunction among
patients receiving Herceptin as a single agent or in combination therapy compared with those not
receiving Herceptin. The highest absolute incidence occurs when Herceptin is administered with an anthracycline.Withhold Herceptin for > = 16% absolute decrease in LVEF from pre-treatment values or an LVEF
value below institutional limits of normal and > = 10% absolute decrease in LVEF from pretreatment values [see Dosage and Administration (2.2)]. The safety of continuation or resumption of Herceptin in patients with Herceptin-induced left ventricular cardiac dysfunction has not been studied.Cardiac Monitoring
Conduct thorough cardiac assessment, including history, physical examination, and determination
of LVEF by echocardiogram or MUGA scan. The following schedule is recommended:
Baseline LVEF measurement immediately prior to initiation of Herceptin
LVEF measurements every 3 months during and upon completion of Herceptin Repeat LVEF measurement at 4 week intervals if Herceptin is withheld for significant left
ventricular cardiac dysfunction [see Dosage and Administration (2.2)]
LVEF measurements every 6 months for at least 2 years following completion of Herceptin as
a component of adjuvant therapy.
In Study 1, 16% (136/844) of patients discontinued Herceptin due to clinical evidence of myocardial dysfunction or significant decline in LVEF. In Study 3, the number of patients who discontinued Herceptin due to cardiac toxicity was 2.6% (44/1678). In Study 4, a total of 2.9% (31/1056) patientsin the TCH arm (1.5% during the chemotherapy phase and 1.4% during the monotherapy phase) and 5.7% (61/1068) patients in the AC-TH arm (1.5% during the chemotherapy phase and 4.2% during the monotherapy phase) discontinued Herceptin due to cardiac toxicity.
Among 32 patients receiving adjuvant chemotherapy (Studies 1 and 2) who developed congestive
heart failure, one patient died of cardiomyopathy and all other patients were receiving cardiac
medication at last follow-up. Approximately half of the surviving patients had recovery to a normal
LVEF (defined as > = 50%) on continuing medical management at the time of last follow-up.
Incidence of congestive heart failure is presented in Table 1. The safety of continuation or
resumption of Herceptin in patients with Herceptin-induced left ventricular cardiac dysfunction has
not been studied.In Study 4, the incidence of NCI-CTC Grade 3/4 cardiac ischemia/infarction was higher in the
Herceptin containing regimens: (AC-TH: 0.3% (3/1068) and TCH 0.2% (2/1056)) as compared to
none in AC-T.0 -
Great post Dance. Thanks for the information.
Had my 3 month blood work at the onc and they are doing another CTC blood test. I questioned doing it again since it was done several months ago and it is a VERY expensive blood test and there are lots of questions regarding its validity. Nurse was going to check with the doctor before sending it off to the specialty lab but I'm betting she'll want it.
Almost time for another Echo which I guess will continue for years since the Herceptin apparently keeps working after you finish. I think it has impacts for 2 years....that could be wrong but is in line with your post above Dance.
Almost time for my 6-month mammo and ultrasound too....it just never ends, does it.
Everyone noticing the changes to the website?
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Arlene...I finding the new format on the website slow, and more difficult to navigate. I have to click on something several times before anything happens where before it was instant. Plus, my bio is erased on home page. Sad, because when first dx I put a lot of info on there that recorded what I went through and feeling back in 2007. I have no other blog like that at least from Dec. 2007.
There is a thread toward the bottom of the topics to give your opinion one way or another to the moderators about the change of website format.
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Ugh...the new format is horrible!
More specifically, hard to navigate....and harder to read...everything is TINY. I don't want to CTRL + all the time!
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evebarry - I can't see my bio unless I click on "settings". However, when I click on your name, I can see your full bio. Weird that you can immediately see other's when you go to their profile, but not your own.
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I am not liking it much either yet.
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Im having a lot of trouble navigating this new format. Question about x ray im hoping someone can help me with. X ray of leg said "subtle sclerotic lucency in the proximal right tibial metaphyseal diaphyseal junction which appears to have normal trabeculae traversing it. Subtle sclerotic lesion in the proximal right tibia is indeterminate." I know that's so technical, and my MO was not concerned, but considering I don't like him and plan to find a new one, I don't feel assured. Can a sclerotic lucency or lesion be something besides mets? Is mets the most likely explanation? I don't understand how my doctor can be so unconcerned when the word "lesion" appears in the report. Any comments so appreciated.
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A cyst can be a lesion. They call all things like that lesions. I had 3 "lesions" on my liver. Now I have 2. They keep scanning me but tell me they are pretty sure they are cysts. When things are small it can be a bit challenging to know but t hey have a good idea.
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This new website is terrible. Its very difficult to navigate. what did they think was better about this design?
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