Been put on hold w/herceptin

Her2nSue · 11-26-2006, 08:25 PM

Hi All, I haven't been on in a while and my oncologist has put me on hold with Herceptin two cycles ago, and not so sure if and when I might be able to continue. I was supposed to be finished with Herceptin in February. Well, the old ticker is causing some problems. Had a CT scan, that looked good. Then had an eckocardiagram, which was reviewed and app't. with cardiologist was made. Saw him last week. He says my heart has some damage, just a little he says. Damage is damage to me. After I explained my symptoms that I've been feeling for several weeks now, shortness of breath, blood pressure had been bouncing all over from normal to real high until I was put on high blood pressure meds, my chest feels like I have a tight band wrapped around me, fatigue (but who on Herceptin doesn't feel fatigued?). The cardiologist gave me 2 EKG's during my app't. Now I have an app't to have a left heart cath. on Dec. 5th. Not looking forward to it. I'm nervous, and a bit afraid of what they might find. I already have a mitro valve prolapse and I'm just so concerned.

Has anyone else had this done? I'm not so sure that the oncologist wants to continue with the herceptin since I've been with for 9 months. Am I wrong for feeling cheated in not continuing herceptin after all this. There goes that security net we've talked about before. I know, heart over herceptin, inbetween a rock and a hard place. Please keep fingers crossed that all goes well on Dec. 5th. I'll keep you informed when I find out more. Thanks to everyone for crossed fingers and prayers.

Sue

suzan w · 11-27-2006, 10:04 AM

sorry to hear about all that you are going through. I don't have any experience with what you are going through so can't offer much in the way of info. Am, however, sending prayers and good vibes your way!

rinaina · 11-27-2006, 10:52 AM

Sorry you are going through this, isn't it enough dealing with breast cancer as it is? I can relate to how you are feeling. I have started Herceptin in late August and already have a rise in my what use to be good blood pressure, plus I developed swelling in my ankles both of which are not great signs. My onc put me on a diuretic and it helped with the swollen ankles but my pressure is still higher than it use to be. I will be going for an echo cardiogram soon and worried like you because I know how important the Herceptin is in helping reduce that chances of a reoccurence. We are always dealing with something it seems. I am praying that this is a minor set back and that once it is dealt with you can resume your final months on Herceptin. I remember reading on here about someone who did have to take a break and then resumed so let's pray this will be the case for you. Good luck.

MJo · 11-27-2006, 11:40 AM

Dear Sue, I too am sorry you are going through this and I hope you heal. I think nine months of Herceptin is pretty good. Maybe someday 6-9 months will be the standard. I am also scheduled to finish my year in February. Just had my last MUGA and will find out results this week. I feel that every month of Herceptin I get in over 6 months is a plus. I hope your heart improves. Then you can talk about whether you should finish the last three months. MJO

Susan · 11-27-2006, 03:56 PM

Hi Sue:

I was on my 8th month of herceptin, and I also had my blood pressure go up. I was put on a diuritic, then put on a second blood pressure that was a ACE inhibitor. My Muga scores started to drop and I was getting short of breath. I skipped 2 cycles of herceptin, then had another MUGA, and it continued to go down. So now I'm through with herceptin, and the doctors are hoping my heart will go back to normal. I now see a cardiologist, and I haven't had herceptin since August. I am already off the one bp medication, and hopefully my blood pressure will also go back to normal. The oncologist said that there are European studies showing getting herceptin for 6 months is just as good as getting it for one year. I've always been in great shape, exercising all the time, so having this shortness of breath for me was scary. I've noticed in the last 2 weeks, it seems to be better. I'll be interested to see what happens when I have another Muga in January. But either way the oncologist at the University of Michigan says I'm done with herceptin.

Good Luck. Sue

Sheila · 11-27-2006, 05:35 PM

Sue
What kind of symptoms were you having besides the tightness? I also have Mitral Valve Prolapse and have been on Herceptin 3 years...

Dianne M · 11-28-2006, 11:54 AM

Susan
Hi, who I the onc. at U of M. that you spoke with. I am wondering whether to do chemo and herceptin or herceptin alone. I have had 2 confilicting opions. We are here at MSU. I have focal microinvasion and I am not sure what to do. I begin radiation next week for 7 weeks. so I do have time.
Thanks
Dianne

Susan · 11-29-2006, 04:20 AM

Hi Dianne:

I had a lumpectomy first, then AC chemo, radiation then herceptin. I also get a shot of faslodex once a month for 5 years. I see Dr. Max Wicha at U of M. He's really great!

Susan

MJo · 11-29-2006, 01:21 PM

Sue -- I was very shocked today at my appointment when my onc told me my muga had dropped 16 points since I began treatment. Since I've had nine months of herceptin and I was Stage 1, he was willing to stop the treatment. I told him I'd be willing to be retested and finish my year. So I am on hold for six weeks. My muga is still normal -- 54. But my four mugas have jumped from 70 to 59 to 62 to 54. The "protocol" is to stop with a 16 point decrease. I was really blindsided, because I feel pretty good. As I said in another post, I feel that any Herceptin treatment over 6 months was a gift. But i'd feel more secure if I could finish a year.

The oncologist says that NIH cancer research funding has been cut so much (he blames Iraq) that there are no objective studies in the U.S. on how much herceptin is effective. He said most of the studies are funded by pharma companies, and Genentech, for example, would like us all to take Herceptin for 2 year$.

I'm not happy about this. It was unexpected. But I know I have a lot of company on this board. MJO