Findings of C.H.F.

Her2nSue · 12-08-2006, 10:15 PM

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.

Sue
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

Lolly · 12-08-2006, 11:05 PM

Sue;

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

Sheila · 12-09-2006, 06:17 AM

Sue

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!

Sandy H · 12-09-2006, 06:51 AM

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

Becky · 12-09-2006, 06:55 AM

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.

Her2nSue · 12-09-2006, 09:25 PM

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.

Hugs
Sue