TRIPLE POSITIVE GROUP
Comments
-
SpecialK- thanks! I guess I'm just particularly nodey then....lol! I'm happy it's clear...ok, I really am super happy. :-) So does this mean I have a lot of nodal pathways left? ;-) See, it's these types of questions i have. If only there were more guarantees.. It's the worst part of all of this, I'm learning.
0 -
This is an article written about the study:
Evidence Mounts on Heart Failure After Trastuzumab in Breast Cancer Survivors
And here is the article itself:
I think I read somewhere that many times the heart failure can be asymptomatic - I don't know if it still needs treated if it is, but I guess that's why I am also going to see about getting hooked up with a cardiologist to follow me. I'm no more tired than before...hard to judge since my hemoglobin is still below normal.
0 -
Just catching up Ms Tori yay on the clear nodes.
0 -
If tykerb is approved now for early stage, is that something we can go back for after having already finished chemo and herceptin?
0 -
shore1 you are reading my mind!!!!! i am going to ask my onc about this but i don't see her until November - if anyone else can ask at their next MO appt I would be curious to see what the thinking is. I know that they gave H late when it was approved, I think within 2 years of completing treatment.
i am done my MUGA's but i will ask about continued screening, lago unfortunately some people don't have symptoms (a friend of mine felt great but her EF dropped to the point that she had to stop H)
0 -
mstori - If you are extra-nodey (new word for the dictionary, lol!) then I am un-nodey! It would be a good question to ask - if they left uncleared level(s) would you have a similar number of remaining nodes? I wonder if they know?
0 -
I thought it was approved for early but it appears not yet. But remember every drug does have SE. We just learning that Herceptin may continue F-up the heart long after you've stopped treatment.
0 -
Iago
Just got up so a bit bleary eyed when I read the article about long term HF associated with Herceptin. Is it suggesting that HF can occur in women years after tx (even those who did not have adriamycin)? Yikes again.... I really feel like our group of women are the guinea pigs at the moment. However, the fact remains: with Her2 what choose did we have?
0 -
Jackboo, well put. We do the best we can with what we know when we know it. Even though my EF dropped and I am probably off Herceptin for hood, I would still make the call to take it as the alternative is really ugly. So I did make the best call I could. Did they have the information at the time, no. They did not. Everyone is doing their best and that is all anyone can do. Much love.
0 -
Soltantio - they are currently doing studies comparing the effectiveness of Herceptin for 6 months vs 1 year (in Europe). The results won't be back for some time. The FinHer trial was done in 2009 showing 9 weeks of Herceptin was effective, but it was a small study (232 pts), so standards have not changed from 1 year in the USA. A Turkish study was just completed and published which showed 9 weeks was effective. It had 479 patients, but only looked out 2.5 years (so far, I would not be surprised if these are preliminary results, and they are continuing to gather data). Another article I read said 29.5% of patients in the N9831-B-31 study stopped herceptin before 1 year for reasons other than recurrence, but had "no sign of inferior outcome" (note, no hard data found by me on this yet). Another article I read said the "best duration of Herceptin is uncertain."
Jackboo - yep, we didn't really have a choice - the alternative of cancer recurrence is pretty bad! We are all going by what is known at the time, making the best decisions we can. You can't look back and regret whatever decision you made - and I did not post the article for that reason. My intention is to make sure we all know we need to be followed closer than maybe what they originally thought. And for those who are currently getting Herceptin - your guess is as good as mine as to whether to do the full year or not. For myself, since I'm showing a loss of heart function already, and my tumor size was tiny, I am pretty sure I am going to stop at 6 months of Herceptin. Others who had a larger tumor and/or positive nodes would have more fear of the cancer recurring and be willing to do the full year of Herceptin. Not that I'm not afraid of recurrence, far from it. I just think my fear of heart failure is getting larger than my fear of cancer recurrence at this point, given my EF drop. Oh, the choices we have to make.
Will be discussing with my onc tomorrow. Hope it is the right decision for me. They don't have the data yet to clearly tell us what to do. 0 -
jackboo I agree we still would have done herceptin. I also think we that chose Taxotere/Taxol would have done that too. The risk is still higher with Adriamycin than Tax. Also this article says the risk is higher… It does not say you will definitely have problems. We need to keep watching this and again see what our oncs say about it. Also the drugs to manage CHF are a lot easier than chemo. Also easier to deal with CHF than mets. But I want to be monitored if I should be. I only had the initial MUGA befoe chemo and that's it. I know CHF doesn't always show signs.
Anyone ask their onc about this study yet?
0 -
lago - I will be interested to see what your health care team says about post- treatment heart follow up since they were involved at the beginning of herceptin. When do you see them next?0
-
Moonflower: My EF dropped to 47 half way through my chemo but onco wanted me to continue as my baseline was only 53. I subsequently had echos and more mugas and they went back to normal and in the case of echos beyond. Highest reading of echo was 65!! Forgive me, how many Herceptin tx did you have and what was your lowest EF? I wanted to stop at 6 months but my EF seemed to pick up so I felt I should push through and I had 18 treatments in the end. I think, however that research will show that a shorter period will suffice. (Just my gut feeling on that one)
Dancetrancer: Thank you for posting the article. The more information the better.
Iago: I agree that it is a wait and see approach. I pestered my onco for scans because I had some issues with heart palpitations and shortness of breath. I even had a 24 hour monitor. All normal so it is unlikely now that I would get him to agree to further scans unless I could take along strong evidence for long term monitoring. All very confusing. Up to this point I had assumed that CHF occured during or just after treatment, not months out?
0 -
On a totally separate note: Had a fall out with a close friend. You are all welcome to chime in, but equally welcome to ignore. Please just indulge me the vent.
My friend (49) lives in a mansion on the shores of Loch Lomond, Scotland. She is an only child and childless herself. We met when we were at the same secondary school, teaching as temporary cover teachers.
I have known her many years and always been aware of how incredibly mean she is over money.
My husband is a contract engineer and has just started a 6 week maintenance job on a petro-chemical plant, 90 minutes drive from her home. Struggling to find accomodation, my DH asked my friend if he could stay (along with a colleague). He suggested £50 per man per week. They would not be eating meals, just crashing between the hours of 10pm and 5am.
2 days on and they have found somewhere closer. I rang my friend to tell her and she said she expected half the money from the guys even though I had told her that there was a strong chance it would only be temporary. They were there about 15 hrs in total and had no meals.
This time, I could not hold back, having been on the receiving end of her scrimpy behaviour so I told her I thought she was being mean charging them so much. Perhaps its me but I thought a buch of flowers, thank you card and some nice wine and chocolates would have been sufficient.
Anyway they are heading back there tonite to collect their stuff and move on. Arrr...............
0 -
hello jackboo, concerning your EF low on herceptin , did you do some thing special to have it up ?
mine was 48 2 weeks ago, without any symptoms, I'll have another muga tomorrow,.
thanks
0 -
Omaz I don't see my onc till April. I hope I remember to ask.
Jackboo, cheap people are not ones you want as friends, period. Let the cheap people hang out with their money.
0 -
Jackboo, I had 6months of Herceptin. My EF started at 59% went down to 48% and in an echo a week after the MUGA, was 52%. My onc is really leaning towards me being done, as I also have a pacemaker, and this tx is all supposed to be protective.
0 -
I am curious if some of us develop CHF years out from treatment how can it be definitely attributable? People who have not been treated for BC get CHF all the time. Is there something that indicates that this is occuring from Herceptin specifically?
jackboo - sorry about the problem with your friend. Often it seems that friends + money = bad.
0 -
SpecialK the study includes a group that haven't been treated. They compare.
0 -
Got it. That is what I get for not reading the study, lol!
0 -
SpecialK, in the Bowles study they compared the following groups:
- Pt's who received anthracycline alone
- Herceptin with anthracycline
- Herceptin without anthracycline
- other chemotherapy
- no chemotherapy
Since they had patients who never had chemo they were able to see a difference in CHF rates attributable to more than just normal aging.Compared to no chemotherapy, the risk of heart failure was 4 times higher for Herceptin without anthracycline and 7 times higher for Herceptin with anthracycline.Cumulative incidence of heart failure over 5 years was 12.1% for Herceptin without anthracycline, 20.1% for Herceptin with anthracycline. Incidence over 5 years for no chemo at all was 3.1%. Incidence for anthracycline alone was 4.3%. "Other chemo" incidence was 4.5%. So Herceptin definitely increased incidence, according to this study. 0 -
The only potential small skew is the mean age of participant and the low number of Herceptin only patients. That portion of the study was only about 100 women and we don't know their age. If they were given Herceptin alone, which is rare even now 5 years after this study was completed, it may have been because of age or comorbidity.
0 -
Jackboo I'm sure sorry about u'r friend---u've had so many years with her u'd think she would have been different with u, but she won't change so of course it's up to u todo what u think is proper---I would send the cho. and flowers that's more than enough, well maybe just the flowers and keep the chocolate for u'r self-----remember cottage cheese solves nothing, chocolate solves it all.
OK I'm actually understandin a little of what is going on and I'm thinking is this why I had to see a cardiologis for some tests. I'm having some problems, but everythin seemed OK he said--but he sent me for blood work and b/p check which I think I told u--it was high normally it's low so I' on an added med. Now he wants to see me in Nove. unless I think I'm having any problems. I had the full amount of herceptin-my muga was always 70 and a bunch --well at least 4 diff. chemos that I remember (Not names) just when they would tell me they were changing things up-they got my usual OK Now I'm wondering if this has any connection--who knows I would have done all of this anyway with what I was originally told and said do whatever u have to. So they just did. Just thinking out loud laies.
0 -
camillegal I assume you will be on some kind chemo on/of for life as well as herceptin (or one of the newer drugs if herceptin stops working). All of this can have an effect on your heart. They will continue to monitor you.
0 -
I am curious too Lago. Considering everything I've ever read from the manufactorers of Herceptin, to Oncology journals... all recognize the potential for heart damage even years after tx, and that it is typically asymptomatic.
I don't understand how they blow monitoring your heart off. What data are they using to refute all the data out there that says this is a serious potential issue?
Please let us know!
0 -
SpecialK - only one of them was given Herceptin alone. I was confused by them describing it that way...so I looked further into the article. They defined trastuzumab-based only as "without anthracycline; though all but one woman received additional chemotherapy". So, to me, I'm thinking they probably had something like TCH or TH.
In terms of ages of the 112 women who had H w/a chemo other than anthracycline:
40 (35.7%) were less than 55 yo
36 (32.1%) were aged 55 to 64 yo
19 (17.0%) were 65 to 74 yo
17 (15.2%) were > = 75 yo
So yes, 32.2% were older than 65, and the article notes they did have more comorbidities than women in other treatment groups. So that is a valid point to keep in mind and may offer some peace of mind to those who have not had an anthracycline and are younger.
0 -
My ef started at 73% and ended at 55% and no one seemed concerned or suggested any more follow up for heart function.
0 -
Omaz - if it were me, I'd want to get follow up to make sure it recovered. That's an 18% drop. Of course most do recover, per the data, as we know, but for peace of mind I personally would want to know. Also, if it hasn't recovered, I'd want to know what kind of treatment should be done to prevent it from worsening.
Normal EF is 55 to 70% per the Cleveland Clinic and Mayo Clinic. Herceptin prescribing pamphlet states that Herceptin should be withheld for 4 weeks (and then EF reassessed) in the following situations:
1) Greater than or equal to 16% drop in LVEF from pre-treatment levels
OR
2) LVEF below institutional limit (I'm guessing that would be 55? but I'm not sure) AND greater than or equal to 10% absolute drop in LVEF from pretreatment values
According to this article, asymptomatic heart failure should be treated to prevent progression.
Results of large, randomized clinical trials conducted in patients with asymptomatic LVSD have demonstrated that several pharmacological therapies significantly reduce the risk of progression to symptomatic HF and associated death, as well as sudden cardiac death. It is critical, therefore, that physicians understand the prevalence, diagnosis, and optimal treatment of asymptomatic LVSD.
source: Stage B Heart Failure
Management of Asymptomatic Left Ventricular Systolic Dysfunction0 -
Yes, I mentioned this study and media coverage to my MO at my appt last week... She got all pissy, stuck her hands on her hips and told me she hadn't heard of it and wouldn't believe it.
I later emailed, through the nurse, a copy of the original journal article and peer reviewed media coverage (including the Medpage Today article peer reviewed by the Assoc Prof of Medicine at Harvard). I added at the end of my email the info that I am expecting to be monitored for far longer than their standard 3 month MUGA after the last herceptin.
Will see what she says at the next appt in 6 weeks. Thinking all the peer reviewing might make her "believe". This is the MO that I have already determined is off the team before I get into follow-up!
Jenn0 -
It is also important to note that EF when measured by echocardiogram it is not an absolute number. There is a certain amount of play in the number dependent upon where the technician places the cursor to do the measurement. My EF seemed to be higher at the beginning (I had an echo every 3 months, including a pre-treatment and post-treatment one) but the supervising cardiac tech looked at my earlier echos when I was having the third one done and said the previous tech had done some incorrect positioning. This was good news in that it meant I didn't have as large a drop, just an artificially high starting number. I never fell below mid-50's throughout treatment.
0
