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Heart Damage from Chemotherapy

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zoomommy2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2010 at 8:21pm
I saw my oncologist yesterday.  My ECHO is back to normal!  My labs are normal and my mammogram is normal.  I don't have a lot of faith in mammograms, since 15 months before last June mine was normal.  Then out of seemingly nowhere I had a 3 cm tumor.  So all of you out there with low ejection fractions, those number can come back up quickly.  Good luck to those of you out there.
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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NINASUZIE View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NINASUZIE Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2010 at 8:58pm
What wonderful news!  I'm abit confused though.  Is your bout with TNBC in the past and now things are back to normal?  Chemobrain strikes again :-)
Suzie
**************
Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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zoomommy2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2010 at 9:05pm
I finished chemo abruptly in January of this year due to emergency gall bladder surgery - 4 1/2 hrs of it.  I only had 5 more weekly Taxol treatments to go, but wasn't allowed to finish them.  My March MUGA showed a big drop in ejection fractions from the one in November.  The April ECHO was even lower.  I felt ok, but was scared that those numbers would continue to drop.  Bingo, they are back up to 57% as of last week!  My chemo brain hasn't gone away yet!  I hope my TNBC is a thing of the past, but I only had surgery in July '09, not even a year yet.
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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NINASUZIE View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NINASUZIE Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2010 at 9:40pm

What an inspiration you are, no matter what the obstacle!   You showed TNBC who's boss!  So so happy that your stats came back up.  If anyone feels a sense of humor about their chemobrain...let's share the .....what was I saying now?!  Oh yes...stories!

Suzie
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Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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zoomommy2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2010 at 9:59pm
Suzie, I'm still not happy that my oncologist considers Vitamin D3 and curcumin to be controversial in their use with breast cancer, but at least he doesn't mind if I take it.  He doesn't put much faith in tumor markers for breast cancer, either.  Since my insurance is Kaiser, the philosophy is the same with all the oncologists.  Since I still have chemobrain, I'll probably forget that he isn't entirely on my wave length!
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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NINASUZIE View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NINASUZIE Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2010 at 10:20pm

Lee, maybe you'll even forget his name!  We do so much research to be adovocates and it is amazing how often what we ask for ends up being the standard of care later on!  More stories :-)

Suzie
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Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2010 at 10:32pm
Lee,

I take D3 and Curcumin and my onc does tumor marker tests!  LOL
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2010 at 10:47pm
Donna,
Kaiser is more middle of the road in their philosophies than some.  They definitely are not on the cutting edge of things.  My Doc said he's seen too many cases where tumor markers were high and the patient was fine and vice versa.  He just doesn't think they are reliable enough to bother with!  He doesn't do any routine scans unless you have symptoms.  I reminded him I had no symptoms til from one month to the next I developed a 3cm tumor!
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 Katastrophe Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2010 at 12:27am
Hi girls its Kat from Aus, not sure if this helps but ... I am stage 2 grade 3 tnbc ... started chemo and avastin on 11th August 2009. before I commenced they did a Gated heart Scan (Muga) my LVEF levels were incorrectly read, they thought it was at 57% which indicates a normal range. It was actually 53%. According to the trials, it is suppose to be 55% and above to commence, so they decided to do a rescan just to be sure and it had dropped to 50% (keep in mind I had not had any kind of treatment yet) they canncelled me off the trials the day before I was due to commence. The morning of my chemo I got a call from the trials girls to tell me the doctor had fought for me to be on the trials inspite of my low LVEF, so they agreed to put me back. They said there was some loophole that stated in Australia your LVEF can be as low as 50% to commence the Avastin (I have no clue why). So on the 11th August I started with LVEF levels at 50%. The first 3 Chemo's were FEC with Avastin. The second was Docetaxel with Avastin. My Gated heart scans (MUGAS) were done regularly as I was having breathing difficulties they are as follows...  16/07/09 - 53% ... 05/08/09 - 50% .... 05/10/09 52% ... 07/12/09 - 40% (this is considered heart failure and I was at risk of a heart attack or stroke) they removed me for one cycle to see if it improved (which it did) ... 29/12/09 - 48% .... 31/12/09 - 51% ... 17/02/10 - 48%. That was the last time I have had it done. I have being having a few breathing problems again, so not sure if things have changed. I dont think it is from the Avastin I think its from the chemo. My sister has Leukemia and had the same problem and her dropped to 40% and ended up with a blood clot in her heart. She is now under a cardiac specialist. Her cancer is in remission, but her heart problem remains. If you type in "what does LVEF mean" on google it will tell you the levels you should be, and what it means if your level is lower than 50%/ It was the only way I could make sense of what it meant to me and whether or not I should panic. The doctors can be so uninformative sometimes. They treat us like we are children and it would be beyond our mental scope to understand anything but the basics when it comes to the treatment of OUR bodies. They need to pay a visit to this site to see just how capable we are. gl girls luv Kat
Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.
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zoomommy2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2010 at 12:41am
Kat,
My Muga's were normal all during chemo - in the high 60%.  Then after I was off chemo and Avastin, it dropped to 55%.  That was still considered normal, but geez, that's sure a drop in 4 months!  Then I got a few ECHO's.   The first one was even lower - 45-50%.  I was starting to panic.  My last ECHO in June was back up to 55%, so I'm not worrying anymore.  I don't know if it was the Adriamycin or Avastin or the two together that lowered my % for awhile.  I just thank God for the levels coming back up!  I never had any symptoms to indicate any heart problems.  I had to practically beat my oncologist over the head to get him to give me the numbers.  I want details, not pats on the head!
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 Katastrophe Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2010 at 9:27am

Lee, when you go for the scans dont you ask the radiologist what the results are? Also when you get your scan results back there is usually a copy of the report in the envelope. Hell I usually wait for the results and open them up before the doc sees them. I figure if im paying an arm and a leg for them I want to see them ASAP. I even read my mamogram results and ultrasound before my doctor. I told the radiologist there and then to spill her guts and let me know if I was in trouble or not. They told me I was. I think most peoples LVEF range from 50% (borderline normal) to 75%. I dont think there are many above that. most are in the 60's. Thats what I was told anyways. I even have a book going back 30 years with copies of every scan, ultrasound and xray. I find it a great thing to take with me when I see the multitude of doctors. When they ask me any medical history I just hand them the file. Saves a lot of thinking time. I am one of these people who like to cut through the bull. I want to know the truth the whole truth and nothing but the truth so help you doc! luv Kat

Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2010 at 9:43am
Dear all,

this is such an important thread!!!!!!

Heart Damage from Chemotherapy is something that was not discussed with my daughter and proper testing was not done. She is six years out now with NED or cardio issues...hopefully, just lucky..

Is there anyway someone can please start a new thread on this in the Talk section. I am not saying this in a critical way not do I want to 'step' on anyone's thread but it troubles me that this thread somehow wound up in the Remembering Nancy Block Zenna forum which is the wrong section, in my opinion, for this thread to be in.

again, I am hopeful this thread will continue....in Talk....what do you folks think?

thanks,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2010 at 12:17pm
Steve,

Good suggestion.  I posted it under TNBC Talk.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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