Herceptin Heart Attack

Hope you are pleasantly surprised and the new doc is good with the medication. If you have been on it and it works for you, I can't imagine a doctor would have a problem with it.



Had herceptin #16 today. No problems at all. My probNP test came back the lower it's been in a few months, and the liver function tests too. Woo Hoo! Two more to go and finally have my life back. Can't wait.

I saw my primary doctor today. My oncologist referred me to my primary doctor to prescribe the  ACE Inherbitor. Since asking for it, I changed my mind about taking it due to side effects. My doctors nurse ask me to come in anyway. My doctor was surprise why my oncologist referred me to her when she should have referred me to my cardio doctor. She did say she would had put me on a low dose ACE Inhibitor but after hearing my story she thought I needed to be under the care of my cardio for any inhibitor or beta blocker. She was reluctant to put me on anything due to my irregular heartbeat and EF 50.

I've been having a lot of worsening bone pain in my right arm and shoulder. I mentioned it to my doctor thinking it was nothing more than fighting a frozen shoulder from the surgeries ... although my shoulder isn't stiff or frozen.. But wondered at times if it could be cancer. She said, you will wonder this the rest of your life.. Even though we do or don't do treatments mentally it's never quite over. I haven't said anything to my oncologist because I had a PET scan in December, and other than the breast cancer it was clean. I don't want to complain about every little pain that comes my way and cry wolf when it's nothing at all. It's been a bother since the second surgery so I'm not too worried as I'm pretty sure it's noting.

Tonlee, I hear you. The pain has been there for almost six weeks. It used to come and go but now it's there all the time. It sorta feels like a frozen shoulder pain in the arm. The difference is I can lift my arm and use it without any problem (frozen shoulder pain I couldn't lift my arm).  I will mention it to my oncologist when I see her in 3 weeks.

My primary care doctor recommended a teaching hospital in Portland. There is another hospital that specializes in heart that I'm checking out first.

Darn, my crazy heart palps have begun again. I think I need to go back to the Metropolol (sp) versus the Coreg.  Back to the onco, I go.  I'm wondering if the Armidex can cause any of this!

Hi Judy:  Yes, many of us have stopped and started, etc.  and several of us have been stopped officially.  I made it through 10 of 18 treatments.  My last one was end of November and when my EF dropped from 60 to 50 and only came back to 51, that was the end for my onc.  She didn't want to risk another big drop taking me below 50.

Hoping you can complete yours.  I'm sure they will watch you every so closely.

I have a echo on Monday. I may have to take a break. If I do continue or go back on it I am going to ask for weekly low doses of herceptin. Monday I have a appt with the plastic surgeon, then a ct injection and go straight to the echo followed by a ct scan. I come home and go to a meeting with local artist in my area for an upcoming art festival . I will see my oncologist Wednesday and I will find out then if my EF is lower than 50.

I hate that I feel so tired most of the time. Life is mind over matter. My daughter thinks the herceptin is aging me. I hope not.

For those of you with shoulder problems, after the proper tests have been run, if it is ruled "arthritis" or "tendonitis" or "frozen shoulder", please ask for a referral to physical therapy.  It can make a huge difference (Disclaimer, yes, I'm biased, yes, I'm a PT. )

Thanks Dance and congrats on the positive tests.  Those levels are on my list for the onc tomorrow for my 3-month check up and blood test results.  The cardios pooh it.

You can also report adverse events to the FDA, which I think would be really important with a new drug like Herceptin:

Reporting Serious Problems to FDA 

Arlene - I assume you are talking to me?  I haven't reported anything for Herceptin (b/c I have no issues as of yet), but I tried to report my reaction to Cipro that I had a few weeks ago.  The online form wouldn't work for me.  I am going to try calling the phone number listed tomorrow.  Here's the number listed on the consumer page:

Call FDA at 1-800-FDA-1088 to report by telephone
 

Tomorrow morning I see my oncologist. I will find out the results from my recent echo and bone scan. I complained about my right forearm pain and my oncologist sent me in for a full body scan...from head to toe. I was surprised! I never had a bone ct scan so it was interesting. If my echo drops lower than 50, my oncologist is giving me a break to see if my heart returns to normal. I'm am sooooo ready for a break from herceptin. My immune system is shot. I hate dealing with mouth sores. I had yogurt through a straw for dinner. I just want to feel good again.

If I ever did get bone cancer and I couldn't take herceptin due to my heart function or lack of function, I would be in a pickle. There is a new drug like herceptin coming out, antibody from a human rather than a mouse. It's not suppose to have as severe side effects as herceptin. There is alternative, but unaffordable. I HOPE I don't ever again have a cancer dx. I'm not sure I can handle anymore treatments. I don't deal with side effects very well.

Arlene, I can see my heart beat through my clothes and feel it. I'm not sure the echo records the irregular heart beat. They just say it's harmless PVC's. I never had them before herceptin.

I asked for another Cardio doctor, who knows about herceptin. The one I had knew nothing of it before seeing him and I feel as if he's shooting in the dark.

I saw my oncologist today. To continue herceptin all depended on todays results. I really thought my EF would had dropped below 50, but it's up to 55+, which means I'm stable. It's still 10% below the 65 I was before herceptin.  MY oncologist said I am considered stage 0 for heart issues, which is borderline for heart prolems. She of course wants me to continue herceptin for the year. One year for stage 1a feels like over treatment.   I don't like the side effects of herceptin so my oncologist is scheduling me to a once a week herceptin with 2 mg each time to see if this helps. I'm scheduled for next Monday. Part of me wants to quit and the other part feels it's right especially after watching the movie Living Proof.

My bone scan was clean. Relieved! The last few days the right arm bone pain has moved into the joint feeling more like the onset of a frozen shoulder. I need to start swimming again. But, the plastic surgeon called to schedule the last surgery. I am not looking forward to another surgery, but I would like semetry so I look half way decent in my summer fitted shirts.

For now, I'll go with the once a week herceptin and with my busy summer schedule try to not think that much about cancer. Hopefully with the weekly infusions, I won't have side effects and be able to enjoy the sunny days

evebarry, I had a regular x-ray, no scan, he was pretty sure it was just arthirtis.  The Celebrex seems to be helping, although on Monday it was pretty bad and I was almost convinced I had LE! Can you get LE from a SNB? but then Tuesday it wasn't too bad again and it's been fairly ok this week.  So tired of wondering about every ache and pain!