Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Thread Tools Display Modes
Old 12-08-2006, 10:15 PM   #1
Senior Member
Join Date: Jan 2006
Location: Clutier, Iowa
Posts: 61
Unhappy Findings of C.H.F.

Hi All

After 2 months of complaints to my Onc. that I'm more tired than I ever have been, gained weight throughout my mid section, cut back my hrs. at work and still nap for anywhere from 1 to 2 1/2 hrs. and ready for bed by 10 p.m. He had me go for a CT scan and Echocardiagram. CT was fine, Echo showed some problem the cardiologist said. From there I went in for a Left Heart Cath. to see if my arteries might be clogged. Nope. They were nice and clean, looked good. Final dx: have a weak heart, some damage on the left side=Congestive Heart Failure. Today's visit with the Oncologist after this diagnosis, no more Herceptin for me. I have received 9 months worth and was due to continue till early Feb. The Onc. feels that the 9 months worth should be sufficient and not to worry. How can one say that to another, it's like pulling Linus' security blanket away! Actually, I felt that my Onc. was having a pretty lackadaisical attitude about the whole situation. I told him what the cardiologist had said to my family in the waiting room after checking out my arteries, he seemed surprised, oh really? The cardiologist said you had CHF? Well, it's a mild case and reports suggest that patients that have a mild case of CHF, usually have a better chance for the heart to recover from it.
Suggests....Usually.....? Does it or does it not have a recovery from the damages of Herceptin?

Before he strolled out the door with "I'll see you in 3 months", I had inquired if I had any restrictions to help my heart recover. Nope, no restrictions. WHAT?? Here I am, up at 6:00 a.m., go do chores (have horses), get ready for work (Sp.Ed Assoc.) and by 3rd hr. class 10:30 a.m. I just about fall out of my chair with fatigue. I've cut my hours back at school twice now since school started in late Aug. I feel like I have someone sitting on my chest, I feel winded when doing normal everyday things, and here he says no restrictions. I don't get it. I'm sorry for rambling on here, everyone, but I just feel totally let down and disgusted with my Oncologists attitude. I just needed to vent, I guess. I have put a call into the Cardiologist to see what his thoughts were and if there are do's and don'ts with this CHF. From the internet I've have gained much info. on the do's and don'ts, but from the Doctors, so far not so much.

Thank you everyone for letting me ramble on.

dx 10/05
1 centimeter, grade 2
Estrogen and progestrin +
Her2 +++
Fish ratio 9.7
mastecomy-L, no nodes involved
A/C 11/05-1 every 3 weeks
Herceptin & Taxol 2/06-once a week for 12 wks.
Herceptin 4/06 thru early 11/06
Her2nSue is offline   Reply With Quote
Old 12-08-2006, 11:05 PM   #2
Senior Member
Lolly's Avatar
Join Date: Aug 2001
Location: Oregon
Posts: 1,756

Your'er RIGHT to feel shortchanged. If you want to finish your prescribed course of Herceptin, your cardiologist is your friend at this point. Several ladiies have posted here in the past about CHF while on Herceptin and being prescribed Beta blockers and/or ACE inhibitors in order to continue on Herceptin. One of these women was actually in a clinical trial and was quite insistent that she receive treatment in order to stay in the trial.
Bottom line: this is a treatable condition which should not preclude you from remaining on Herceptin to finish your course of treatment.
Also, some women have been able to take a short break from Herceptin(a month or so) and then been able to resume treatment.

Your and your onc need to have a "come to Jesus" conversation.

<3 Lolly
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
Lolly is offline   Reply With Quote
Old 12-09-2006, 06:17 AM   #3
Senior Member
Sheila's Avatar
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507

I couldn't agree more with Lolly...and I love the way she phrased it...there are medications to help your heart and then you can continue with the remainder of the Herceptin....not that 9 mos wouldn't be good enough, but 12 would be even better.....go back and explain this to the cardiologist!
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."

Hugs & Blessings
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
Sheila is offline   Reply With Quote
Old 12-09-2006, 06:51 AM   #4
Sandy H
Senior Member
Sandy H's Avatar
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
The weight in the mid section is from the Herceptin and now that you are off it you should lose it. I lost 15 pounds within 6 weeks after stopping it all around the waist area. Felt so much better!! That maybe, another reason for feeling the way you do and the fatigue. Your CHF is mild and you should be o.k. with plenty of rest and exercise. It should be up the your cardiologist whether you should consider more Herceptin. Lolly is right you can take a month break and then maybe, finish up. Wishing you well and keep us posted. hugs, Sandy
Dx. 03/01, Rt. IBC
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Updated 05-07 Scans show no bone or organ involvement we shall see!

I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
Sandy H is offline   Reply With Quote
Old 12-09-2006, 06:55 AM   #5
Senior Member
Becky's Avatar
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,157
Also, regardless of finishing your year of Herceptin or not, as Lolly said, there are drugs to help your heart - period. Call that cardiologist and discuss this with him. Call your oncologist and make an appointment to see him in one month (to discuss getting another muga/echo) to see if you can restart Herceptin.

In the meantime, start taking CoQ10 if you haven't been - start out slow (50mg with breakfast) and work up to 300 - 400 mg per day taken about evenly with each meal (when I was on Herceptin I took 200mg with breakfast and 100mg with lunch and dinner). DO NOT start taking it all at once. After a few days on 50mg with breakfast, start taking an additional 50 with lunch then progress after a few days to another 50 with dinner. I think you get what I mean. There are studies with folks that just have CHF that 370mg - 500mg per day was all they needed. You never know.

Also, Omega 3 fatty acids can help too.

You will get through this little, little blip in the road.

I am thinking of you.
Kind regards


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 15 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"
Becky is offline   Reply With Quote
Old 12-09-2006, 09:25 PM   #6
Senior Member
Join Date: Jan 2006
Location: Clutier, Iowa
Posts: 61
Smile Thanks Gang!

I will take all of your advise with this blip in the road. I plan on calling the cardiologist come Tues. when he's in office also I'll set up a time sooner than one month, as he had suggested, to ask about continuing with my sheduled Herceptin that just got shelved by the oncologist. If he says yes, once I've rested the old ticker and have taken the meds. that he had said to my family he had for me to help my heart get stronger, I will feel much relieved. Time will tell, I'll rest and exercise (no problem there when you live on a farm) and hopefully it will come back nice and strong. I currently am taking Beta blockers that the onc. gave me a couple of weeks ago. I also plan on making an app't (per your advice) with the onc. sooner than the 3 months that he had scheduled and as Lolly puts it, have a "come to Jesus" conversation with him. Thanks again girls and I will keep you informed on how it all goes.

Her2nSue is offline   Reply With Quote

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

All times are GMT -7. The time now is 03:25 PM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2020, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter