I am also on hold for Herceptin

MJo · 12-03-2006, 08:19 AM

I was very shocked last Wednesday when my onc said we are halting Herceptin for six weeks. Before I started AC, my muga score was 70. It is now 54 after 36 weeks of Herceptin. Doctor said 16 point drop means stop Herceptin. If my score isn't higher in six weeks, I will be finished treatment. I have to trust that nine months is enough for me. It was a shock because I could see the finish line ... February I would have had my last Herc treatment. I also felt pretty well. Since a 54 muga score is in the normal range, I'm glad my oncologist is so cautious. But the setback really blindsided me. What surprised me was the return of all my fear about cancer, with a few new fears about my heart. I went back to work Thursday and Friday and was essentially useless. I attended some meetings, but coudn't do much else. I feel better today after resting and caring for myself this weekend. Perhaps I'll spend an hour with the psychologist at the cancer center talking this out. I had a lot of trouble with the adriamycin chemo and came through that. I'll come through this ok too. But any setbacks or delays in cancer treatment sure are scary.

StephN · 12-03-2006, 02:43 PM

...causing your MUGA number drop.
How many MUGA scans have you had? Just the one at the start of treatment??

I say this based on my experience. I did not have a MUGA, only EKG before surgeries that were in the very good range. Then I had 12 weekly Adriamycin, a 4 week break and then 4 rounds of Taxotere. Three months after finishing my 36 rads my cancer was back with a vengence (don't let this scare you now).

At this time I was given Herceptin along with Taxol and Navelbine.
The point here is that once I was to start on the new drugs for mets, I had my FIRST MUGA. Ejection fraction score was then 55. This was after the first 2 drugs, rads and NO Herceptin. Most likely score was the result of taking the Adria, which we know is hard on the heart.

I know from talking to the nurses that the MUGA is often borderline after getting adjuvent therapy without Herceptin. Remember that over 2/3 of BC patients are NOT HER2 positive and they often have MUGA's too.

After nearly FIVE years (in beginning Jan.) on Herceptin my recent MUGA was 66.
Maybe some other ladies will chime in here with their scores.

I surely wish that your score will rise the requisite amount to continue your Herceptin. You have suddenly had your "security blanket" jerked away, and this is not what you were mentally preparing yourself for.

tousled1 · 12-03-2006, 07:10 PM

I had 4 adriamycin (spelling??) but never had a MUGA or echocardiogram. After completing my 4 A/C and 4 Taxatere I started Herceptin. My first echocardiogram my LVEF was 60-65%, my last one in October was 55-60%. A slight drop but no significant. I'm continuing on my Herceptin only every 3 weeks.

Bev · 12-03-2006, 08:06 PM

Hi MJO,

My baseline before chemo was 65. After AC 60. After T & H 56. After 3 months of H only and COQ 10, 70. Try the COQ-10 supplements for the next 6 weeks and see if you can get your score back up. If not, I hope the 9 months did the trick. Bev

Heart Sutra · 12-03-2006, 08:11 PM

hi,

excuse our ignorance...
What is a MUGA?
thanks, sorry to hear additional stress added to your life. Hopefully it is short lived and works out well.

---Kevin and Sue---

MJo · 12-03-2006, 08:55 PM

Steph. This was my 4th muga. I have had them every three months. I am glad that after 5 years on Herc your heart continues strong and that your score is now 66. I hope I never need Herceptin again, but I would like to think I could take it again if needed.

Heart. I don't know the technical stuff, but the MUGA measures the pumping strength of your heart. It's done in the nuclear medicine department of my hospital. THey inject me with something radioactive and then watch my heart pumping on a screen. Apparently Herceptin can damage the heart's pumping ability, but hopefully it's not permanent and I will heal. Genentech says that only 4-5% of patients have this happen, but I think the rate will prove to be higher. Maybe they can someday make a version of Herceptin that doesn't carry the heart risk.

In hindsight, Ive been coughing too much. But since I have asthma, I never know if respiratory problems are caused by asthma or something else. I am disappointed. I wish my body were stronger. My oncologist is too blunt sometimes, and a few weeks ago he was talking to me about losing some of the weight I've gained so I don't put stress on my heart. He asked me how long my parents have lived -- both into their 80s. He said "maybe you didn't inherit the longevity gene." So now I wonder if this is a sign that I'm a weakling. This too shall pass.