Stretching ECHO time out to long...

Chelee · 07-18-2006, 09:58 PM

I have been on herceptin for six months. I've had 2 ECHO'S so far & they were ok. But isn't it pretty important to get your ECHO or MUGA on time for something as big as this?

I was checking out ALL my appointments trying to keep them all straight and thats when I noticed my next ECHO will be 4 1/4 months since my last one.

I thought out of ALL my appts. that is one that SHOULD be pretty much on time...meaning the 3 months time frame? She has it closer to five months.

Have any of you had your ECHO's or MUGA that far apart from each other?

Chelee

Kimberly Lewis · 07-19-2006, 05:55 AM

Actually I have and when I pointed it out the Onc said "oh, I guess it is about time for one of those..." Yeesh, made me feel like it was a very casual thing... I don't have the energy to be that much in charge of my care- but I guess if you want it right do it yourself! good grief huh?

Yorkiegirl · 07-19-2006, 06:26 AM

Yep, sure have. This last it was 6 months between. I HAD TO ASK!!!!!

Was told oh yes we better get it done. Oh well I'm almost done with my Herceptin now. BUT you can be damn sure I will get all new scans after I'm finished. He say's I don't need them, BUT I think I do.

jener8er · 07-19-2006, 07:33 AM

Hi Chelee! I get echo's every 6 months now - was on every 3, but with nothing changing and as I'm now in my 2nd year, my onc said I could switch to every 6. I'm happy with that, as is my cardiologist. If I should have ANY symptoms, of course I'll go right in. I think you should be fine.

BTW where in So Cal are you?

Esther · 07-19-2006, 03:41 PM

Hi guys, I'm in Southern CA also, and I don't get echos more often than every year. I have had any reason to have them sooner, and I don't like doing a ton of tests.

Is there a guideline for this? I had understood that it was age related, that the younger you were, the less need there was for such close monitoring.

Cathya · 07-19-2006, 03:52 PM

I get gated heart scans done every two months. I am going now for an echo.....first time. I believe I get these tests done so regularly because I am having trouble with my heart due to herceptin and if this was not the case....well I can only dream....lol. I think if your scores are good perhaps your onc's just get them done every so often but if they are borderline or low they watch them more closely. No everyone has problems and I only wish I was one of those.

Cathy

chrisy · 07-19-2006, 06:29 PM

I get an ECHO about every 4 months, although I was 7 months into my treatment before I got the first one. I also have had to bring it up with my regular onc and gotten the "I guess it is time to do that" response. My 2nd opinion doc seems to be more into it. I'll be seeing her in a couple of weeks and plan to ask her if there is a "standard protocol". Also, I've always wondered, would you not notice if your LVEF dropped a lot? I mean, if you are active and feel well, is it possible youre LVEF is too low and you could not tell?

Bev · 07-19-2006, 07:17 PM

Mine does them every 3 mos. My score has been going up since finishing AC. I would think if you continue improving, while on the same drug, that they could space them out further over time. I would think they would have needed to have done at least 3 on this schedule to see what the different Tx are doing and to see a pattern. From reading past posts I think your score could get below the cutoff without you knowing that it's a function of LVF. Bev

Sherryg683 · 07-19-2006, 07:23 PM

Funny you should ask this. I just had my first one done today, 7 months since my diagnosis. I was having chest pains in my heart and called up and pretty much demanded one because I felt I should have had it a month ago. My Oncologist said every 4 months at first, then he said 6 months, then he seemed to forget about that. Well, I got it done anyway and everything was fine. Sometimes you have to take control..sherryg683

Chelee · 07-19-2006, 07:53 PM

Kimberly, It must be time for a ECHO when ever WE *mention* it to our onc doc. lol Until then...they must not be necessary.

I get the SAME thing you do....I always have to bring it up...and then its a "Oh...your right...it is that time." Then, & only then do I get an appt set for one.

I had heard from others down in my infusion room that the normal protocol for a ECHO if your on herceptin is....every 3 months. But I am beginning to wonder since it seems many other womens oncologist are pretty lack about when they get theirs. Seems to be any where from 3 months to a year from what I am reading here. (Must not be a protocol on this one...or no one follows it?)

Sherry, Thats terrible that you just now had your first one after seven months. Have you been on herceptin all this time? They usually always have a baseline one BEFORE you start your herceptin...if nothing else to cover their behind and make sure your heart is up to it which makes sense. Then of course follow up ECHO'S to make sure no damage is being done as I am sure you know.

I am glad you got your onc doc to finally do one. Its a shame that any one of us has to be so proactive to get anything done. I am so tired as is...then having to stay on top of everything just drains me. I know these doctors are busy and on over load in most cases...but they CHOOSE the job. They are suppose to be working for us...and they are suppose to care.

Whats their oath say. "First do no harm". If they don't have our tests ordered, scans and such done on time, or at all...they are not doing their job.

I am GLAD you TOOK control Sherry...because in todays health care system...it seems you HAVE to. I am happy all was well for you. Now when it gets to be close to 3 months...no longer then 6...make sure you get another one especially if your on herceptin.

Chelee

Chelee · 07-19-2006, 08:05 PM

Hi Esther, You said you only get ECHO's once per year. Are you on herceptin? Just curious. I wouldn't worry about having a ECHO at all if I was NOT on herceptin...thats my only concern is keeping track of my heart function.
Like you mentioned...I don't like having a bunch of tests either! I hate them...seems it all I do these days. But I DO want to be able to stay on herceptin...and the only way I will be comfortable with that is to know my ECHO's are still staying up there.

As far as if there is a guideline on ECHO'S and age related? I don't think so? But I can't say for sure? I am pretty sure regardless of age...the protocol for an ECHO is every 3 months IF your on Herceptin. That is what my oncologists told me...even thought she isn't following her own advice to me very well. lol

How about all us Southern CA women. Has it been HOT enough for you ladies yet! Its been COOKING here. Then add the humidity and its a killer. What a terrible time to have to put a wig on when I go out. There's a few of us here...I am surprised.

Chelee

Chelee · 07-19-2006, 08:24 PM

Hi Yorkie, So far it seems like Sherry, Christy, Kimberly, myself and you ALL had to bring it up or we wouldn't of gotten one. So the protocol must be as I said in another post. "Whenever the PATIENT brings it up...is when the oncologist HAS to order one...until then...no worries". lol

Bev might have a good point. Once you have a few and they are good...they can space them out further apart. In fact...my first two ECHO's were in a good range...and this IS the FIRST time they went over the three months. So that might be a part of it in some cases.

Cathy, I am sure sorry to hear you have had problems with your heart...especially when you want to continue on herceptin. That is a big worry with me. I am always afraid my ECHO will go down and will be told I have to go off it for a while. I hope it never happens...but I can only imagine how you feel. I hope yours goes back up so you can get going again on the herceptin. Sending you warm & healing thoughts.

Chelee