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.

Bev · 12-03-2006, 09:10 PM

Kevin, You can also have an echocardiogram in lieu of the MUGA. The echo's are ultrasounds of the heart. They are quicker and no nuclear med injection. BB

StephN · 12-04-2006, 01:23 AM

O-o-o-o-o - MJO -
What a thing to say to you about longevity genes! I think I would have looked at him crosseyed and said thank you and goodby. There is no good reason to speak to a patient in distress that way. WHAT bedside manner??? and the idea of thoughtfulness is right out the window.

That aside, I still did not get a trend with your MUGA's. Were they all in the same range until this last one??

Maybe you have some low grade infection and that is why the coughing. It is that time of year when these things are likely to happen. What about air quality? I know that stressers can make the asthema act up. I used to have it too. I think my dietary changes and such have greatly helped my allergies and I no longer have the asthema. It was actually getting better before my cancer dx.

P.S. Someone else mentioned the Coenzyme Q10. I have been taking that since my rads. I take 100 or 200mg per day. I think this has helped my heart hold up to all the drugs. Plus as much exercise as I can muster the strength for.

Heart Sutra · 12-04-2006, 07:15 AM

Thanks for clearing up the MUGO question.

and wow, do we agree about the lack of compassion the doctor showed by the statement about the longevity gene. Sounds like the god complex has that one by the throat.
wow

It reminds me of some long ago M*A*S*H episode where Frank Burns makes the statement, "We're doctors, we're trained to ignore other people's pain"

Don't carry his careless words with you, they indicate more about him than you.

Good luck to you, thanks for posting this as it helps to educate us.

---Kevin and Sue---

MJo · 12-04-2006, 08:14 AM

Steph -- sorry. I typed the trends, then erased them. My brain is staggering a little. Baseline before adriamycin was 70. Three months later 59. Three months later 62. Last week was 54.

I have to laugh or I'm finished. This morning in the car I was talking to my heart like a sports coach....ok, baby. Pump. Come on honey, Pump it.

StephN · 12-04-2006, 12:00 PM

No kidding MJo.
Giving our bodies instructions, especially before going to sleep when we can mostly clear our mind and are not so distracted, is proven to help any number of conditions.
We had a thread here earlier this year about Guided Imagery. Search those two words and you will find it.

Thanks for the MUGA numbers. Yours did go down some after Adria and only came back up a little - maybe not even statistically significant.

Are you being sent to a cardio specialist or having an Echocardiogram to confirm the last MUGA results??

Try to get on a gentle excercise regime to get your heart rate up. I got one of those wrist style heart rate monitors for Christmas last year. It tells me whether I am pushing myself and how much. As I keep it on as I warm down and see how long it take for heart rate to get back to the resting number. A very simple thing to do and was not expensive.

MJo · 12-04-2006, 01:13 PM

THanks Steph. I am walking at least 5x week. Started at 1/2 mile and walked a mile yesterday. I take a fish oil capsule every day and will look into CoQ10. I have another MUGA Jan 10. If the score is still down I expect to go to a cardiiologist. I hope I have good newsand the score is up. I am also thinking about stopping the herceptin. If the muga goes up, do I want to shock my heart again? I will ask the onc what he recommends. MJO

Jackie · 12-04-2006, 02:30 PM

MJO,

I too had to stop Herceptin due to a big drop in my MUGA 68 to 54. I was still in the normal range also. After nine weeks my MUGA was up some 56-58. I was put back on Herceptin at half the oringinal dose. My treatments were increased slightly as I finished my Herceptin. There are studies that show that a shorter time on Herceptin may be as effective. I do agree with Steph about the exercise. Keep doing this and hopefully you will be able to finish out your year of Herceptin.