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Heart Damage from Chemotherapy

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pamgentry View Drop Down
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    Posted: Apr 26 2010 at 12:32pm
I was called 2 months ago to repeat a MUGA scan done in January.  I had not rec'vd any results of that MUGA, the first 2 were good - LVEF in the 60's so I assumed that this one was fine as no one let me know differently. BIG MISTAKE! When I called my clinical trial nurse to ask why I needed another MUGA she said because my LVEF had dropped to 53%. When I asked why I hadn't been told this she said "because it wasn't low enough to drop you from the clinical trial". I told her that I wanted to see a cardiologist asap to decide if I should continue in the trial (Avastin for another 6 months) and she was no help. I finally found a kind nurse in the cardiology unit of my local hospital who got me in. The cardiologist said that the damage was almost for sure caused by the Adriamycin, not the Avastin and ordered an ECHO test. I don't see him again until June and wondered if anyone here had this problem and, if so, how it went. Is it possible to reverse this kind of damage? From I've been told, probably not - best case is to keep it stable which it is for now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2010 at 1:34pm
Hi,
 
So sorry you've run into this situation and I hope your Echo results are good.
 
I only had one Muga before starting Adriamycin, none afterwards.  I was diagnosed with CHF in 2007 which my Cardiologist said was caused by the Adria chemo that I had had in 2003.
 
I would like to suggest that you re-post your question in the "Talk" section where more will see your post.
 
 
You might try getting copies of all of your tests, scans, bloodwork etc., so then you can begin a file at home for your purposes plus many times you will receive the results before going to the doc's.  Personally I feel this better prepares me to make a list of questions if I have them.  I've had more than one incident where I caught some serious overlooking of my not being told about something on a test result.
One example was when a CT showed fluid in my chest (CHF), my Onc never said a word.  I got a copy, went home and there it was in front of my eyes.
 
I now maintain my CHF.
 
Hope your Echo shows no problems, please let us know.Heart


Edited by trip2 - Apr 26 2010 at 1:35pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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M Alison View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote M Alison Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2010 at 1:40pm
Hi Pam,
My MUGA also went low after chemo, it is now slightly below normal (high 50's) and is remaining stable.  I was also on Adriamycin and Avastin.  My doc is monitoring the situation by repeating MUGA's periodically, but there is nothing to be done about it now - the damage is done.  I agree, it's the Adriamycin that does it so if I were you I'd stick with the Avastin trial unless they advise you not to.  I have absolutely no side effects from the heart "damage" and exercise and run around same as I used to, so I am not at all worried about it.
Alison
Age 55, Dx 9-08 TNBC, mast 10-08, stage 2, 1/6 nodes, AC + Taxol + Avastin, rad, BRCA1&2 neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2010 at 2:49pm
My MUGA's have dropped from 69% to 57% in 4 months.  I had an echo done last Thursday and it had dropped to 45-50%. It's dropping like a rock.  I had Adriamycin and Avastin.  I don't have an answer back yet about seeing a cardiologist.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chloesmom Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 9:43pm
it is the Adriamycin.  I am a cardiac ICU nurse and have seen this time after time.  Avastin will cause hypertension and clots, but not low EF's.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chloesmom Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 9:43pm
Adriamycin is carido toxic!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2010 at 12:34am
I know it's the Adriamycin that's so toxic, but that, along with Cytoxan was what was ordered to be given first.  I had no high BP on Avastin, but did develop a pulmonary embolism at some point.  It could have been from the Avastin or the gall bladder surgery of 4.5 hrs.  My BNP blood test was 33, completely normal, so I don't know what's going on.  I have another echo scheduled the end of June.
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mamawof4 Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2010 at 9:56pm
I took CoQ10 while I was going thru chemo.  I took 400 mg and I have never had any trouble.  My onc said it was fine for me to take it.  But it is expensive.  I got mine at  Sams and the price not to bad. I wish you luck and I will keep you all in my prayers.
dx 4/9/09 with stage 2a grade 3,one node cancerous, lumpectony,10 radiation treats via mamma site,8 chemo treat with 4 a/c and 4 iexempra thur clinical trial finished 11/25/09 PALB2 gene+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2010 at 10:02pm
My husband takes CoQ 10, so I know how expensive it is.  He gets his at Costco and it's more reasonable than many places.  I don't know what's going on with my heart for sure.  I have another echo next month right before I see my oncologist.  I feel fine and have no symptoms.  I wish I had the advice of so many things I could have done while taking chemo.  I was too tired to be on the computer most of that time.
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lkirk Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2010 at 8:13pm
This is very interesting to me because I feel that I have clearly lost cardiovascular function during times of high physical exertion and I have attributed it to chemo (Adrimycin) but have no proof. My oncology team doesn't do any follow-up testing and I am almost 1 year post all treatments. I feel vindicated!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2010 at 10:04am
Lkirk,
I don't think I will be getting as much follow-up testing as lots of members seem to be getting.  I think the follow-up MUGA I got in March was because I was on the Avastin study.  My echos are because of the falling MUGA numbers.  Nobody seems concerned.  Since my BNP test was completely normal, I am just left feeling confused at this point.  Hopefully, the echo in June will shed some light on things.  I use my exercise bicycle 30 minutes almost every day with no problems.  Can you get your oncologist to at least do an echocardiogram?
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Momof4 Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2010 at 1:51pm
Just wondering how low your LVEF was at it's lowest?
I need encouragement!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2010 at 3:34pm
Momof4,
The lowest I've been so far is the 45-50% on the echo in April.  That's lower than the 57% in March.  I realize they are two different tests measuring the same thing, but don't quite know what to think.  I was in the high 60% while on Adriamycin during October, November and December.  I'm just hoping and praying that the numbers don't fall any lower.  I feel fine at those numbers, thankfully!  Have you had low numbers or just started chemo?
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Momof4 Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2010 at 9:37pm
Much lower.
LVEF In the twentiesCry
THey seem to think it was the avastin
After my normal muga prior to starting AC, I was not checked after that and before a regimen of Avastin, Carbo and Abraxane. My symptoms appeared quickly right after I finished all the chemo...that was about two months ago.
I don't know how much they know about rebounding after Avastin...am hoping it is something that will improve significantly, as this is really a shock
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susie Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2010 at 10:10pm

Ok, Somebody explain all this. I am having ECHO on Wednesday because I have surgery next week. First test like this since I took AC. What are the numbers supposed to be?? This is all "greek" to me!!  Susie

dx 10/08,age 56,.75 cm. Stage1 Grade3,lumpectomy,SN neg..,AC 12/08-02/09,35rads,03/09-05/09,BRCA2+(E1415X),06/09,oophorectomy 10/09,
Zometa - IV/mo.,07/09-08/10, lumpectomy #2 10/20/10 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2010 at 12:46am
Momof4, those are low numbers.  No wonder you are scared!  You didn't have Adriamycin like I did, but we both had Avastin.  I'm praying that your numbers go back up.  Are you having symptoms?
 
Susie, normal ejection fractions, which is the number we are talking about, have normal numbers of from 50 or 55%.  It seems to vary as to what is considered normal.  Normal runs up to about 70%.  I'm still learning about this since my numbers are dropping.  The numbers represent the percentage of blood pumped out of the ventricle with each heart beat.  Be sure your doc tells you the number, not just "normal" or whatever.  The numbers can vary from time to time and that's normal.  Good luck on your Echo. 
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Serenitity Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2010 at 1:29pm
How did I miss this thread? It all happened to me too. On ace inhibitor and beta blocker now. Not too bad as I don't present any symtoms for chf.
 
Karen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suze Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2010 at 5:24pm
Feel really bad because you are here looking for answers and not only do I have no answers for you, just hope and well wishes, but this whole thread has opened my eyes and created questions, fear, and the feeling that I have had my head in the sand.

I was "lucky" in that my TNBC (dx 8/09) was found early - <1cm, no nodes, BRACA1&2-. Given that and because I have so many other health problems - 5 herniated or bulging cervical discs which cause excruciating pain at the slightest activity, stomach issues from all of the pain meds, PT makes pain worse, 59, overweight, DX IDC 2001 ER+, Lump, Rad, Tamox, Hyst/Oophor '04 due to 6 giant fibroids the size of a 6 mos. fetus,boarderline hi BP and sugar....- Dana Farber did not want to treat me. My regular onc said I'd be a tough patient but there was no reason not to do chemo after mastectomy (due to prior rads). So did DD ACx4. Lots of side effects, but due to inactivity neck pain much better than not on chemo. Last chemo 12/30/09. Out and about again for daughter's college decisions and end of high school in April.

My onc did lots of tests pre chemo. But no real follow-up since, except 3 mo visits. Will do second mastect in fall after daughter is off to college - unless mammogram next week is huge surprise. Asked for copy of test results, etc.... but never got them. Did have Adriomycin - no talk of follow-up Muga's etc... Since I had so much body pain before chemo and a milliion scans and was NED - they are waiting for me to say sonething is different or worse before they get too upset and check it out.

I will get those test results going tomorrow and keep a log - but so far I have been going along like the 8 years after first cancer - pretending it never happened. It is really impossible for me to tell what is new from the TNBC and what is just worsening from my neck. Not sure if I should be asking my onc. to do more - really not too anxious for more radiation from CTs - since I'm so "low risk" - she is taking her lead from my symptoms and my symptoms could easily be neck ot tnbc related - I just assume neck -don't like to take time from patients who may need the docs more.

Real question is should I do more? I keep up on this site and when something really makes me nervous - like this post - may chime in.

P.S. - Know I can condense history to the botton like others - have tried 3 times and my computer just won't take it - sorry.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2010 at 6:35pm
Suze,
 
Don't let them blow you off on those test copies, you have a right to all of your records.
 
I was diagnosed with CHF in 07 from having Adriamycin in 03 but the only Muga I've ever had was after I was dx the first time.
 
If you are having alot of pain then that is an important health issue for you so I don't think you are taking time from someone else if you see the doc.  If you could have a consult with whomever is treating your neck issues and your Onc maybe the pain can be pinpointed so that you can rest easy and know exactly what is going on, that is important!
 
I agree too many scans are not good.  I've had too many myself in the last couple of years and now my Onc wants a PET/CT in a month.  Cripes it has to stop for awhile.
 
It feels better to have peace of mind.  To understand exactly what is or isn't going on with your body.
 
Maybe they could ultrasound?  Some other kind of look-see?
 
So sorry you are dealing with all of this and hope you get answers and relief soon.
Stage 2 2003
Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suze Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2010 at 9:14pm
Pam -

Thank you for taking time out of your own fight to give me such valuable advice. I really appreciate it and will follow-up.

Suze
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