Stopped Herceptin due to low muga scan

There were posts a while ago about an organization that provides free house cleaning to cancer patients. Maybe dust is making the asthma symptoms worse. I had bad bronchitis during the last couple of months of my last pregnancy and they couldn't treat it well while I was pregnant (at least the doctors I was seeing then - if I had known more then I would have demanded referral to a allergy and pulmonary specialist).

Once the bronchial tubes and lungs were so irritated it took a long time to recover. My GP treated each episode and didn't check between. So it would quiet down and then flare up. It didn't resolve until I started seeing an allergy pulmonary specialist who treated it as a chronic condition and kept me on medication to keep the airways relaxed. Then the medication was tapered off and with appointments periodically to check how they were doing. It took years to get to the point where I didn't need to take a puffer and medication on trips just incase a flare up happened. The wrong fragrances, dust, etc could set me off. After a year or so of not getting the right treatment it took about 10 years before I was totally clear and didn't have to worry that every cold would turn into bronchitis. 

So, if you are having breathing problems I hope you see a pulmonary specialist. Maybe breathing difficulty is causing or contributing to the racing heart problems. 

MY EF was 63 pre-chemo.  After 4 TCH (last one was 9/12) and one Herceptin only (10/1), I had a second MUGA and my EF showed a drop to 48.  My onc said this was on the low end of normal but her concern was the number of points it had dropped.  I was taken off Herceptin for a month.  My most recent MUGA result was 60 - high enough to re-start Herceptin.  Yay!!

My EF was 66 after A/C ... then it dropped below 50 after 12 weeks on weekly Herceptin/Taxol.  On the 12th visit, they gave me a triple dose of Herceptin but probably gave it too  fast???  After 3 months off, due to a 48 EF, I rebounded to 50 and they put me back on....every 3 weeks.  I have gotten back to 54 and that was the last MUGA I had ... way back in Jan 2007!  Finished in March 2007 and never had another MUGA.

Good luck ladies!

Thanks gals.  Mason you said all the side effects came back like with your first treatment.  What side effects are you talking about??  Mary

Sharon, I do wish you lots of luck. It all sounds so scary.  I have my 12th Herceptin tomorrow and my 3rd echo on Friday. If the echo is okay I should be able to get the last 5 treatments.  I just wonder and worry about it all the time.  God Bless, Mary

Thanks ladies.

Mary-I hope everything goes well with your echo and you are able to continue txs.

Lisa-My onc is a nut. I don't know what is going to come out his mouth from one visit to the next. He's military and tricare won't let me go outside to another onc so I'm stuck with him until we pcs which will be 2010. He really didn't want to send me to a heart specialist at first...I had to stand my ground and make him write out the referral while I was sitting with him because I knew he wouldn't if I just left without it. I can't stand him!!!

Take care everyone!

Bridget-

I get the CoQ10 at Sams club for a fraction of the cost I paid for the first batch at the health food store.  I paid about $25 for 60 softgels, 300 mg.  They also sold it in the 200 mg dosage depending how much you take; the 200 mg capsules were less expensive.

Hope that helps.

Hi Karen, I know it is scary, but try not to worry.... Your heart should recover just fine.  Mine did.

My MUGA went from a baseline of 63 before my chemo treatments started, down to 48 after 5 Herceptin treatments from July through October - four were part of TCH and one Herceptin only.   I was also very upset at the news that the Herceptin was giving me this serious side effect, though my Onc did say that 48 is on the low side of normal.  It was the point drop that required a break from the Herceptin.

Good news is that the next MUGA showed recovery of EF right back to 60.  I started back on Herceptin two weeks ago.  I will be monitored every three months until Herceptin tx ends in July 2009.

Keep the faith and stay strong.. {{{ HUGS }}}

Michelle

Thank you MichelleI really need some comfort right now. I'm going to Vegas very early in the morning and I feel very nervous don't know why. I guess when I get there I'll feel better and maybe I will forget all about everything. You say that your EF went back up to 60, so does that mean that your heart will never go back to 63? I hope it does.

 BridgetI took Herceptin every week because I was afraid that it would harm my heart so I figured I would rather take a lower dose. I didn't care about going every week. Thank God that I went with my gut feeling on that. Also I'm glad that I told my onc I wanted to get a MUGA every 2 months instead of 3 months. Thanks for your support all of your responses mean a million.

Hi...I had 1 year of Herceptin which ended in January 2008.  (I also had a/c & Taxol)  My muga scan results ranged from 54 to 62 during Herceptin.  It has been almost a year since Herceptin and my muga scan result yesterday was 49...my question is why would it drop to 49 now?...Over the past couple of months, Ive had a rapid heart beat at times, even waking me up in the middle of the night.  My oncologist listened to my heart and said it sounded fine at my last app 3 months ago.  Should I be concerned?  Also, I have a heart murmur.  I am 45. 

Wishing everyone a wonderful Thanksgiving! 

Thank you!

I just had my second muga after my final A/C treatment. It went from 58% to 51% in 8 weeks. My Onco still went ahead and started my on my Taxol/Herceptin yesterday, but wants me to have another Muga this Friday. We'll see.

Rackchar, I'm sorry you are not having a easy time. I hope things get better with your heart, it's probably not a big deal it's amazing how strong our hearts are. I have kind of the same problem, i'm off of my Herceptin currently due to my heart lowering also. I won't know until Dec 29th what they are gonna do with me. Everything is gonna turn around for you soon and you'll be fine.

Karen

It's Jan 25, 2012, I was just Googling my MUGA at 56% and found this.  I too was off Herceptin for 6 months last year as my percentage was too at 46%.  However I am on 2 blood pressure meds now Ramipril and Metroprolol and they have done the trick.  56% and from 51% in September.  I am Stage IV, Metastatic Breast Cancer so I need the Herceptin for an unending time, and we have a Cardiologist in Winnipeg, MB who did a study of the heart problems caused by Herceptin and this is NORMAL procedure to have women take the 2 blood pressue meds and it seem to work very well. 

So anyone who needs HEART help to stay on the Herceptin please ask you Dr's to GOOGLE Dr. Jasinder Jassal at St. Boniface Hospital, Winnipeg, MB or just google the 2 drugs and Herceptin

GOOD LUCK AND STAY STRONG EVERYONE.