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Old 01-09-2012, 12:45 AM   #1
JennyB
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Heart function decresed

Hi Ladies,

I recently had a gated heart test as my ejection fraction had dropped on the ECG test and it has come back with a 49%!! I am now not able to finish the last 2 herceptins unless after a break I show some improvement.
My question is does anyone know anything I can be doing to try to help my heart recover the Onc said no but I'm thinking Hawthorn tablets or similiar??
Also and this is of course a big also - does this bode badly for any future use of Herceptin I may need? Of course I am hoping for the best but preparing for the worst this is probably the wrong mind set but I have such small babies - Eddie only turned 1 last week and I find I need to plan contingencies as much as possible!
Any input would be gratefully received

Jenny xx
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 01-09-2012, 06:18 AM   #2
Delaney
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Re: Heart function decresed

Jenny, my echo score went down as low as 45% but it did not take too long to get back up to 55%. I took fish oil and also exercised. Dont know if that helped but did no harm.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 01-09-2012, 10:05 AM   #3
chrisy
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Re: Heart function decresed

CoQ10 baby. And walk as much as you can.
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 01-09-2012, 10:42 AM   #4
ElaineM
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Wink Re: Heart function decresed

I agree with Chrisy on the CoQ10 (Co Enzyme Q10).
Ask somebody about it. Do you have naturopathic physicians over there? They know its benefits.
Some nutritionists and herbalists know too.
Fish oil with omega 3 might help too. So does exercise.
Take good care of yourself. Blessings
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
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Last edited by ElaineM; 01-09-2012 at 10:43 AM.. Reason: addition
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Old 01-09-2012, 02:03 PM   #5
JennyB
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Re: Heart function decresed

Elaine and Chrisy - I already take 150mg of CoQ10 but I am maybe not regular about taking it every day which I will now be!
I do go to the gym but only once a week I am like so many others extremely time poor as my little ones (1 & 3) are still very dependant I will try harder!
Thanks for responding ladies I appreciate it.
Would you not worry about not getting the last 2 herceptin doses??
Thanks Jenny x
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 01-09-2012, 07:40 PM   #6
NEDenise
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Re: Heart function decresed

Jenny,
I'm in the same boat as you. My EF is down near 45, and I'm on a Herceptin Holiday too.
Nerve-wracking!!
I'm feeling soooo tired. Have you had that experience? I'm wondering whether it's my heart, or my emotions. Maybe both.

Hope you're back above 50 soon. And Happy Birthday Eddie!!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 01-10-2012, 03:29 AM   #7
JennyB
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Re: Heart function decresed

Hi Denise,

Nice to know I'm not alone with the low heart function but really wish we both weren't here! It's a bit scary isn't it when the miracle drug makes you sick?? We will have to make a pact right now to never need Herceptin again as it just isn't any good for us!

Have your oncs suggested anything to increase your fraction?? Mine said nothing to do but I seriously doubt that! I am not especially tired but do have a tight/weird feeling periodically in my sternum.

As an aside have you wondered why they call it 'fraction' when it is measured as a percentage??

Stay well

Jenny xx
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 01-10-2012, 04:39 AM   #8
Ellie F
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Re: Heart function decresed

Hi
A lady at my centre experienced low ejection fraction on herceptin around 45. They stopped herceptin for 2 doses and rechecked but was still low. She was referred to a cardiologist who prescribed a short course of treatment ( sorry can't remember the name of the drug)and it improved. She then completed her 12 months of herceptin. I know this is in England but a few years ago there was a post on the board from someone in the States who had an identical treatment.

Hope this helps.
I totally understand the fear and anxiety that this causes. Unless you are on this road it is hard to understand how stressful these blips are and what an impact they have on your psychological well being.
Ellie
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Old 01-10-2012, 06:26 AM   #9
NEDenise
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Re: Heart function decresed

Ellie,
Thanks for posting. So thoughtful and kind of you to reach out to us!

Jenny,
I was referred to a cardiologist, who prescribed enalapril. It's an ACE inhibitor, which, if I understand her correctly...which is never a certainty on my part...reduces the "strain" on my heart and allows it to recover faster. I take it twice a day, and so far there don't seem to be any side effects. Apparently it's used to treat high blood pressure too, but that's definitely not an issue for me...I usually hover around 110/70...

She also did blood tests for a heart enzyme (troponin)which would be elevated if there had been any permanent damage. It was not elevated. (Thank you, Jesus!)

And... yeah! what's up with the fraction/percentage thing?! Good catch (and thanks for the giggle)

I'm "all in" on the pact to never need Herceptin again, once our 12 months is up. Would that be a dream come tue, or what!!! And yet, right now....I waaaaant myyyyy Herceptin, and I want it NOOOOOOOW!!!

I feel like I'm just drifting...no direction to my fight. I hope I'll be okay with not having 'H' once my year is up. By then, I'm hoping not to be so stinkin' tired all the time....and I'll be busy living my regular life. But right now, I have too much time on my hands...and that allows my brain to wander to places better left unvisited.

Stage IV sisters who are reading this...please forgive me for wallowing and whining...when I think of what you deal with bravely, every single day, I'm humbled. You are an inspiration...and in my weak moments...I look to you, and know that I'll be okay, because you are blazing a trail for the rest of us. But, I bet you understand how scared Jenny and I are right now.

so...Jenny...I see the cardiologist on Thursday (just how I wanted to spend my 47th birthday!) and if I find out anything new and useful, I'll be sure to let you know. I'm definitely going to ask her about CoQ10 - heck! if Chris recommends it, that's all the endorsement I need!

Praying for all of us,
Denise

PS-I remember when my boys were 1 and 3...you must really be exhausted at the end of the day! But, what a great time that was! I envy you all the hugs and kisses you get each day! My boys are 12 and 14 now...I have to chase after my hugs and kisses!
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 01-10-2012, 07:32 AM   #10
emmastarr
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Re: Heart function decresed

Hi Jenny and NEDenise,
My EF dropped to below 50 after herceptin number 9 and was put on a herceptin holiday for 6 weeks. My Onc thought I had no chance of it improving to his minimum of 60, but it did, thanks to some advice from Brenda and Chrisy. I took loads of Fish oils Ubiquinol (CoQ10) which is more easily absorbed by the body and got my butt to the gym everyday and after 6 weeks it was back up to 64- my Onc's face was a picture when the results from the Echo came back. You can do it....positive mental attitude and all that!! Lots of love xx
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Diagnosed Feb 2010, age 32
IDC 0.5cm & 0.1mm and DCIS
Had mastectomy
Lymph nodes clear, no vascular invasion
Stage 1, grade 1, ER+, PR-, HER2+
Had 5x FEC, on tamoxifen and herceptin
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Old 01-12-2012, 10:45 PM   #11
JennyB
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Re: Heart function decresed

Denise - happy birthday!! Hope your visit went well with the cardiologist?

I just went to see my GP and he was about to prescribe a drug similiar to yours but I could use the high blood pressure aspect of it however he decided to wait until my next echo to see if it comes back up on its own so we can def say its the Herceptin. I have been having strange pains and tightness in the chest area also some dizziness so we will wait and then see. I do have a referral for a cardiologist as well so again wait and see.....

Thank you everyone for responding its good to know you're not alone especially when things go a bit bumpy!

Jenny x
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 01-13-2012, 05:28 AM   #12
Becky
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Re: Heart function decresed

Jenny

You need to take 390 mg of CoQ10 for it to be therapeutic for heart function. Do not take it all at once and wean yourself into this dose and when you want to scale back, wean your way off this dose.

I know you are taking 150mg now and I don't know how you take it but you could increase to 200mg right now.

100mg at breakfast, 50 at lunch and 50 at dinner. Do this for 3 or 4 days and then increase to 250 by doing 100mg at breakfast, 100 mg at lunch and 50 at dinner (always keep the dinner dose low as for some people, CoQ10 interfers with sleep).

A couple of days after that do 100-100-100. If you do have sleep problems because of it, switch to 150-100-50. I think you get the picture. Do this until you are at 400mg. There is evidence that this daily dose does work for many people. I used this dose during Herceptin and was able to finish even though my echo was dropping.

When its time to scale back, also scale back as above, cutting out 50mg every 3-4 days.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-13-2012, 08:33 PM   #13
JennyB
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Re: Heart function decresed

Hello Everyone,

I am now on full scale make my heart strong!! Gym, food(I always eat reasonably well anyway) fish oil - I even went and got liquid so it is more effective and increase COQ10 I have 150mg tabs so will go and purchase lower strength ones today. I have a referral for a cardiologist and hopefully I can get in this week to check out my dizziness and chest tightness and I have had blood tests as well to see if anything shows up!
I got all weepy today and pretty depressed but am trying not to wallow - I really have no information to wallow about! So it business as usual unless I get told otherwise. I always feel dissapointed when I get upset when really I have so much to be thankful for.
Thank you all so much for all your input and hopefully I will soon update you with some good news!
Have a lovely day
Jenny xx
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 01-17-2012, 11:14 PM   #14
patz64
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Re: Heart function decresed

To Jenny and Denise,
Good luck with the heart issues. Today I had my 5th dose of herceptin. (It was my first time without the other chemo drugs, so I am making some progress!). Thursday I have an echo. I'm hoping it will be ok. I have been having a little bit of tightness in my chest also, but am hoping maybe it's just anxiety. And tomorrow my regular doctor wants to see me about my high blood sugar. It came back as 265 on my last blood test...I think it just went high from all the steroids I was taking with the chemo. But I'm glad he is on top of things and wants to check me out, since the cardiologist never even mentioned it. And I know what you mean about feeling bad about feeling bad, when there are so many other people who are dealing with much worse! I got upset last week when almost all of my eyelashes came out! I'm used to having no hair, but no eyelashes too! This stinks...and yet, really, it's just eyelashes!!!!!
However, going on a date with a wig and false lashes (not to mention uneven breasts with no nipples!) creates some challenges! LOL!
I think everyone on this site really is strong! The things we go through!
Good luck!
Pat
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6/2007-stereotactic biopsy: stage 0 carcinoma L breast
6/2007-partial mastectomy, L breast: stage 1 invasive carcinoma, estrogen +
7/2007- Removed sentinal lymph nodes....all negative. 33 radiation treatments, followed by tamoxifen
5/2011-stereotactic biopsy: stage 0 carcinoma L. breast again, estrogen/progesterone negative. Nobody used the words Her2+ yet.
8/18/2011-travelled to Texas (I live in NJ) for bilateral mastectomy and reconstruction with DIEP flap. 3 days later, left breast turned blue...had emergency surgery to unclog vessel and try to save the flap. 24 hours after that, had another emergency surgery... took a vein from my left arm and re-routed it to the breast. Saved the breast flap but went into congestive heart failure because of all the IV fluids. Spent 10 days in ICU...8 days on a ventilator. Traumatic experience!!! Then was told it was actually Stage 2, Her2+, and I would need chemo.
Now back in NJ.
10/11/11-port was placed
chemo starting in about 2 weeks
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Old 01-18-2012, 11:05 PM   #15
hutchibk
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Re: Heart function decresed

I had the same thing on a clincal trial... and risked being left out. I was told there was no such thing as too much CoQ10... I take minimum 300 mg a day of it, and I take Lisonpril as prescribed by the Cardiologist, which is very specific to the Left Ventricle. And if you are able, Omega 3 is very left ventricle friendly. I also walk walk walk religiously. 30-45 minutes a day, as well as no caffeine or alcohol (I drink non-alcohol beer and decaf tea and coffee.) It all helped me get mine to 55% within 3 weeks... best wishes!!
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 01-19-2012, 09:05 AM   #16
Deb33
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Location: San Diego, CA
Posts: 133
Re: Heart function decresed

My naturopath has me take D Ribose along with the CoQ10, Omegas, ets. D Ribose is often prescribed to folks experiencing congestive heart failure and is good for supporting the heart muscle. My Oncologist and Cardiologist both approved it. If you look at my protocol, I was given Adriamycin and Herceptin at the same time - something seldom done because of the cardiac toxicity and I did great.
Google D Ribose to get more info.
__________________
11/19/10 Identified swollen lymph node
1/24/11 Mammogram showed microcalcifications - no mass
2/4/11 Diagnosed ER/PR- HER2+++
2/23/11 Began TCH protocol every 21 days 6x
5/23/11 Ultrasound of originally diseased lymph node shows normal
7/25/11 Lymph node dissection - 8 of 14 show disease
7/29/11 Double mastectomy with reconstruction (expanders)
8/29/11 Begin follow up chemo - Adriamycin 4 treatments every 2 weeks and Xeloda. Self inject Nupogen shots
1/6/12 6 weeks of Radiation finished
2/13/12 Last Herceptin/remove port
3/27/12 PET/Brain Scan NED :)
8/15/12 Final reconstruction - hello nipples, good bye expanders
9/14/12 Rejected implant/infection. Implant removed
5/6/13 Latissumis Dorsi surgery left side with expander

PS - my photo was taken 5 days after my double mastectomy surgery and 6 weeks after my TCH was completed
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Old 01-23-2012, 05:52 PM   #17
Profbee
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Posts: 11
Re: Heart function decresed

Hi, friends! So, I just got back from the doc. My EF is at 50. They told me to keep going on Herceptin, but come back in 2 months for another echo to see. I've only had 3 treatments of Herceptin (1 every 3 weeks).

Jenny, I get it. I thought Herceptin was the miracle drug, and now I may not be able to take it?! Am I being insane? I had a complete pathological response with the chemo before my bmx--I chose to be really aggressive with the surgery. As I'm thinking of this more tonight, I'm getting more scared. My little boy is just 5.
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Diagnosis: 3/1/2011, IDC, 2cm, Stage II, Grade 3, ER+/PR-, HER2+

16 weeks of Taxol/Lapatinib 4/2011-8/2011 (trial)

BMX with TEs 8/23/2011
4 rounds of AC ended 11/10/11
Tamoxifen started 11/25/11
Herceptin starting 11/28/11
Exchange surgery 12/19/11
Nipples in May!
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Old 01-25-2012, 02:15 PM   #18
JennyB
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Location: Port Hedland, Australia
Posts: 382
Re: Heart function decresed

Profbee,

You're not insane just human it really is so scary when you look at your little ones and wonder if they will get a Mummy to grow up with!
On the plus side for you the complete pathological response puts you in a good place you know just need the 'insurance' package you signed up for! There are drugs they can give you to help EF and of course you have read all these other suggestions on this thread. I wish you well.
I have my echo tomorrow so fingers crossed I can get another Herceptin in and then only 1 to go.

Denise how did your echo go??

Jenny xx
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 01-31-2012, 01:20 AM   #19
JennyB
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Location: Port Hedland, Australia
Posts: 382
Re: Heart function decresed

Hello Everyone,

Just a quickie to let you know my EF is now at 57%, thank you to everyone for all the good suggestions, and so I am to have my final 2 herceptins!! Big sigh of relief!

Thanks again for all the love and support it means so much

Jenny xx
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 01-31-2012, 04:58 AM   #20
Jodykb
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Location: Shelton, Wa
Posts: 9
Re: Heart function decresed

Im so glad for you that it all worked out. My prayers are with you.
__________________
10/6/11 Found suspicious lump, age 62
10/27/11 Core needle biopsy
10/31/11 Diagnosed IDC HER2
11/16/11 Lumpectomy, 4 node dissection negative, margins positive
11/28/11 Pathology Rpt, IDC, two continuous tumors total 5cm, HER2/neu +
12/2/11 Tissue removal, Margins negative
1/18/12 TCH begins
5/7/12 TC ends
5/17/12 Port removal
6/5-7/20 Radiation
12/24/12 Last Herceptin
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