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Heart Damage from Chemotherapy

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Topic: Heart Damage from Chemotherapy
Posted By: pamgentry
Subject: Heart Damage from Chemotherapy
Date 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.



Replies:
Posted By: trip2
Date 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.
 
http://www.rxlist.com/adriamycin-pfs-drug.htm - http://www.rxlist.com/adriamycin-pfs-drug.htm
 
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


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: M Alison
Date 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


Posted By: zoomommy2
Date 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.


Posted By: chloesmom
Date 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.


Posted By: chloesmom
Date Posted: May 11 2010 at 9:43pm
Adriamycin is carido toxic!


Posted By: zoomommy2
Date 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


Posted By: mamawof4
Date 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+


Posted By: zoomommy2
Date 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


Posted By: Lkirk
Date 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!!


Posted By: zoomommy2
Date 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


Posted By: Momof4
Date Posted: May 17 2010 at 1:51pm
Just wondering how low your LVEF was at it's lowest?
I need encouragement!


Posted By: zoomommy2
Date 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


Posted By: Momof4
Date 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
 


Posted By: Susie
Date 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


Posted By: zoomommy2
Date 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


Posted By: Serenitity
Date 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


-------------
aka Happy Go Lucky
member since April 22, 2009


Posted By: Suze
Date 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.


Posted By: trip2
Date 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
BRCA 1+


Posted By: Suze
Date 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


Posted By: Meem
Date Posted: Jun 22 2010 at 9:46am
Hi All!
Diagnosed in Sept 09 left breast 5+ cm tumor grade 3,  chemo (4 DD A/C 2 DD Taxol, but stopped because of severe neurapathy), double mastectomy, 33 rads.  During chemo and now have developed swollen ankles and feet.  Muga scan had been normal and now they want to do a heart ultrasound, but have to wait till my chest area clears up.  Has this been a symptom for anyone who developed a heart side effect from the Adriamycin?  Thanks.
Meem


Posted By: zoomommy2
Date Posted: Jun 22 2010 at 5:15pm
Meem, I had my 2nd echocardiogram this morning.  I've had 3 MUGA's and now 2 echocardiograms.  My ejection fractions were great on MUGA's til 2 months after my chemo ended.  In March I was down 19%, so I had an echo.  It was slightly lower.  It will be interesting to see how the 2 echo's compare.  I feel fine.  I had to stop my weekly Taxol due to emergency gall bladder surgery that had me in the hospital for 2 weeks.
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


Posted By: Meem
Date Posted: Jun 22 2010 at 5:19pm
Lee,
Thank you for responding.  Wow, gallbladder surgery on top of everything else!  I guess it is that I am done with the treatment and now am probably needlessly worrying, but will get the echo done and see what it says.
Meem


Posted By: zoomommy2
Date Posted: Jun 22 2010 at 5:42pm
Meem, it's hard not to be worrying.  It was hard for me not to be able to finish my weekly Taxol.  I was told I'd lost the snowball effect of the chemo by having to be off chemo so long.  That feeling of "I'm not doing something to fight this cancer" has mostly gone away, but still rears it's ugly head now and again.  I've been on Lasix for swollen ankles and feet for years -nothing to do with chemo results.
Lee


-------------
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


Posted By: Sugar77
Date Posted: Jun 24 2010 at 9:16am
zoomommy2 - I"m glad to read that the feeling of not doing something to fight this cancer does go away! I finished chemo in Feb. and rads at the end of April and am feeling that way right now, and it's getting me down a bit these days. 

Sherri


-------------
DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010.


Posted By: zoomommy2
Date Posted: Jun 24 2010 at 12:32pm
Sherri, I have a 3 month appointment with my oncologist on Monday, so the nerves are starting to jangle again.  There's labwork, echo results and lots of questions on supplements to deal with.  He's the clinician type, not one to comfortably ask questions of.  His PA is the one I can go to with the all the things he would probably think are silly.  She's a female, so she's easy to talk to.  I'm glad to have both of them.
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


Posted By: Halsey
Date Posted: Jun 24 2010 at 4:27pm
Pam,
 
I don't even know what a MUGA is.  I did have an echo before chemo (mandated) and was supposed to have another shortly after chemo then the 30 radiation treatments.  Financially I could not and had my "follow up" a year after chemo.  It was fine.
 
I'm so curious about ongoing Avistan OR Adriamycin.  I was on 4 cycles of AC then 4 of T (taxol).  Then done.  Now it's about a DIAGNOSTIC mammogram and six months later a break MRI with contrast.  I thought with Triple Neg there was no on-going (as there is with hormone receptive BC).
 
An aside I don't read much about here, are you taking (I forget the name but it's a powdered amino acid thingy) that helps guard against neuropathy (a painful lifetime of nerve damage..many diabetics and HIV/Aids victims get this condition).  I didn't like the stuff, but put it in a banana smoothie.  Has this even been suggested (to anyone out there?)
 
Take care of yourself; and sometimes we HAVE to get aggressive with medical staff to get answers that affect OUR lives!


Posted By: Halsey
Date Posted: Jun 24 2010 at 4:32pm
Meem,
 
Honey I'm so sorry for your pain; like cancer isnt' enough.  Did your oncologist every prescribe (it's not a drug, can be bought in health food stores) but a powdered amino acid ( I think) that is specifically mean to ward off neuropathy in those of us who had Taxol?  Our cancers sound similar, Stage II, Grade 3 (4+ cm), 4 cycles AC, then 4 Taxol.  I forced myself to include this powdered amino in a banana smoothis and did not get any lasting nerve damage.  WERE you told about this potential aid against neuropathy?  (if not, I'm really ticked off)


Posted By: Scott
Date Posted: Jun 24 2010 at 5:37pm
Glutimine


Posted By: Meem
Date Posted: Jun 25 2010 at 9:42am
Halsey,
Never heard of anything and wish I had known about it.  Per Scott "Glutimine".  I wonder if it would have any effect now, however, the damage has been done.  I am dealing with it with the drug Neurotin, and am getting around. Definately has changed my mobility and I have had therapy for it. I tell myself that I am just happy to be breathing and walking with a cane!  I also have rheumatoid arthritis which luckily didn't flare up throughout my treatment.  LIfe can be a challenge!
Thank you for your info.
Meem


Posted By: 123Donna
Date Posted: Jun 25 2010 at 11:10am
Early echo research for predicting heart damage.

http://www.breastcancer.org/treatment/chemotherapy/new_research/20100613.jsp - http://www.breastcancer.org/treatment/chemotherapy/new_research/20100613.jsp


-------------
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



Posted By: Debris
Date Posted: Jun 25 2010 at 1:00pm
I'm on 18 Tx of Taxol and 12 Tx Avastin, over 6 months.  No one has said anything about the help for potential nerve damage!  I will be asking about this, for sure.
By the way, I've read conflicting reports about the efficacy of Avastin - is it the next best thing, or are the results mediocre, do we know?

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs


Posted By: zoomommy2
Date Posted: Jun 25 2010 at 1:15pm
I wish somebody had told me about something to take when I was on Taxol!  I feel so arthritic and gimpy since Taxol, not before.  I was on an Avastin study that ended for me in January.  It was to see if it helps earlier stage patients.  What I have read is that it is helpful with later stage breast cancers.  I had no problems with it.  I didn't even know for sure I was on it til the told me at the end.  There have been incidences of congestive heart failure (treatable) with patients on it.  I was on it while getting Adriamycin, a drug known to cause heart damage.   So, if I should wind up with treatable CHF, I don't know which drug would have done it.
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


Posted By: rocky918
Date Posted: Jun 26 2010 at 9:35am
I am done with my chemo, which included Taxol. The reports indicates that the treatment worked, but I am left with severe neuropathy. I am prescribed Nuerontin as well,but am worried about the lasting side effects of this drug. I am reading about the amino acids to ward off this, but is there any help since i already have the neuropathy.  Any natural remedies. We try to solve a problem with a drug then it triggers another problem.   


Posted By: 123Donna
Date Posted: Jun 26 2010 at 10:58am
Hi Rocky918,

I had neuropathy from taxotere.  My onc suggested taking B-6 (100 mg) twice daily.   My neuropathy was mostly in my fingers and toes.  I'm about 8 months out from chemo and I only have slight numbness in the fingertips of my left hand.  I don't notice it in the other areas like I used to.  I still take the B6 every day.

Donna




-------------
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



Posted By: trip2
Date Posted: Jun 26 2010 at 9:13pm

Chemo induced Neuropathy, http://www.hopkinsmedicine.org/neurology_neurosurgery/conditions_main/chemo_induced_peripheral_neuropathy.html - http://www.hopkinsmedicine.org/neurology_neurosurgery/conditions_main/chemo_induced_peripheral_neuropathy.html

This can happen, atleast the chemo nurses should pass on this information.  Many women who have posted on this forum in the last few years have said their neuropathy had lessoned over time so hopefully this will happen for you.
 
I worked my way up to 3 -800 mgs a day but over time I have gone back down to just one pill a day.  The neuropathy is getting better.
 
Muga scan, http://heartdisease.about.com/cs/cardiactests/a/muga.htm - http://heartdisease.about.com/cs/cardiactests/a/muga.htm
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: kaycee
Date Posted: Jun 27 2010 at 10:42am
I have a handout on the benefits/dosage for glutamine that I received from my oncologist office. I can't figure out how to attach the scan I made here, but if anyone would like a copy, send me a PM and I'll be happy to email it to you.

-------------
DX age 54, lumpectomy, IDC,10mm, 0/10 nodes, Stage 1 Grade 2, ER-/PR-/HER2neu-, Ki-67 74%, BRCA negative, TCx4, 6 weeks rads


Posted By: NINASUZIE
Date Posted: Jun 28 2010 at 5:34pm
I did alot of research on chemo prior to choosing/deciding/demanding NO AC!!!!  I have a minor heart condition but am medicated and familial high blood pressure, also medicated.  I had a 60% function rate in my Muga and the cardiologist and oncologists said "no AC problems".  I reminded them that 60% was WITH medication and was not willing to take the risk of CHF later.  I lost 2 onc drs because of it, but ended up with the best onc at a major research center for BC!!  You are so smart to keep on top of this and it will ensure you receive the best monitoring and treatment for your heart!  Yes, I know others who have had their functioning improve with time and the above!  You have the best chances for keeping your heart healthy and strong by advocating for yourself!

-------------
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


Posted By: trip2
Date Posted: Jun 28 2010 at 5:57pm
Hi Suzie, very well said.  Congratulations to you for sticking to your guns, it worked out better all the way around.  Good to see you....

-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: rocky918
Date Posted: Jun 29 2010 at 6:39pm
I will definately try this.  Hopefully I will get some results soon too.  Thanks a million. 


Posted By: zoomommy2
Date 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


Posted By: NINASUZIE
Date 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


Posted By: zoomommy2
Date 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


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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


Posted By: NINASUZIE
Date 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!



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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


Posted By: zoomommy2
Date 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


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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


Posted By: NINASUZIE
Date 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 :-)



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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


Posted By: 123Donna
Date Posted: Jun 29 2010 at 10:32pm
Lee,

I take D3 and Curcumin and my onc does tumor marker tests!  LOL


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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



Posted By: zoomommy2
Date 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


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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


Posted By: Katastrophe
Date 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

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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.


Posted By: zoomommy2
Date 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


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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


Posted By: Katastrophe
Date 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



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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.


Posted By: SagePatientAdvocates
Date 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


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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


Posted By: 123Donna
Date Posted: Jul 27 2010 at 12:17pm
Steve,

Good suggestion.  I posted it under TNBC Talk.


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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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