just had MUGA drop from 68 to 54

[suniskye]

Isn't it funny how different doctors believe different things? I am sorry to say, this was a reoccurrence for me. In 2002 at the age of 46, I had invasive ductal carcinoma, HER2NEU 3+, Elston Grade 3 w/comedonecrosis, hormone negative... tumor was only 9 mm and was found at Hopkins after I had been told to come back in 6 months everything was fine. For the first time in my life, I did not listen and went for a 2nd opinion and within 1 week was being operated on for having cancer. I had a lumpectomy, SENTINEL node biopsy and 6 weeks radiation. Chemo was not offered to me and in fact I was told that it was not necessary as it would not make a huge difference.

In April 05 I found a lump under my arm. It was fairly large. Within a week I found that I had cancer again, a local reoccurence to the lymph nodes in my arm. The cancer had been there the entire 2.5 yrs I thought I was in remission. I was not given any scans at all and was in fact told they do not do that unless there is a problem. I wish I had demanded one but hindsight is 20/20. Had I known that I would go thru this a second time, I would have had the anxcilliary surgery at the same time rather than a sentinel node biopsy. (Just a word of advice here from someone who was extremely disappointed that my lymph node biopsy happened to be falsely negative.)

I had 10 nodes removed in May 05 and anxcilliary surgery, Adrinamycin/Cytoxin every 3 weeks X 4 from June-August. I switched hospitals after the first round. I had had it with them. I had such severe infections and they blew me off and the first thing the new doctor did was send me to an ENT. My ear was so bad that it made me cry and they were talking about admitting me for iv antibiotics if the meds did not work. Fortunately, they worked. So in August I began Taxol and Herceptin. My muga was at 75% after adrinamycin before taxol/her. I had that weekly X 12. In November my muga was at 50.5% and I began Herceptin alone every 3 weeks in Dec. My muga this Monday was 42% and I won't ever be getting Herceptin again.

I can tell you I am not disappointed. The Herceptin made me feel really horribly tired. I've not been able to do much of anything except work then sleep. I have worked full time throughout this ordeal and had to change my hours once the Herceptin began in triple doses....I just could not stay awake for 8 hours. I understand that fatigue is also a symptom of heart problems.

Now, my onc told me that at 42% I should not be having symptoms. However, I have little egg shaped pockets of fluid at my ankles and somedays you cannot even see where the ankle is.

I am waiting to have another muga the end of the month. I am praying it stays the same or goes up now that I'm not getting Herceptin. I don't know what I'm going to do if it continues to go down because I am here to tell y'all I just am sick of all of this.

I somedays want to give it to God and forget about it.

Diana

[AlaskaAngel]

I am not on Herceptin and I do value the experience of those who are, but I'm a little uncomfortable with the uncertainties of traztuzumab's effects on the heart and advice to people who are new to it.

There are those on this site who are more acclimated to watching for signs of trouble than others are.

If it were me, I'd think about getting a cardiologist's opinion for consideration, at least until I had more personal experience with it and how it tends to work for me personally.

AlaskaAngel

[Becky]

Well said Angel


Becky

[Marlys]

I just had my 4th MUGA and it had improved from 63% to 72%. After reading these posts I decided to take COQ10 100mg daily. And then 2 weeks ago I started working out ( something I have never done in my life) doing the treadmill for 30 minutes a day and water aerobics every day for an hour. The purpose of the exercizing was originally to get in shape for the Race For The Cure in May. Now I think it is really helping my heart. Can hardly wait for my appt. with my onc next week to see what he thinks.
Marlys

[TriciaK]

As some of you already know, I started out this third round of cancer mets year and a half ago with a heart attack. Two arteries are blocked, and heart surgery was planned, but in doing a CT scan the lung mets were found. My oncologist said I would have had about 3 months if the mets hadn't been found, so the heart attack actually saved my life. I have never yet had the heart surgery, but am being monitored by a cardiologist and an oncologist. However, the cardiologist had never heard of herceptin! The oncologist felt the herceptin was so important he started me immediately after the FISH showed her2, and he had me do a MUGA after a couple of months which showed 58%EF. The cardiologist didn't ever think a MUGA was necessary, but a month or so ago when an echo showed 30% EF, he had one done, which agreed with the echo. SO my EF dropped considerably and the onc took me off herceptin. I had had 15 months of it by then and was NED, so we both felt it was worth it. My oncologist, who has been with me for 20 years, and whom I trust and can talk to, says not to worry about the low EF now, it is reversable, and it will rise in time and if I need herceptin again I can have it. I do have symptoms of congestive heart now: dizziness, swelling, extreme exhaustion, palpitations, shortness of breath, coughing and nausea, plus an x-ray ordered by my onc shows the possibility of fluid in my chest cavity. I am on Coreg, Emdur,Plavix, diuretics and Aquinel, and am able to rest as I need to and do mild exercise and eat healthy food. I am not fearful about the heart problems, but I do feel the cardiologist is not on top of it as much as the oncologist. Both seem to feel the heart surgery is a last resort and would be too hard on me now. Sometimes I get the feeling the cardiologist expects me to die from the cancer and so the heart is not that important! Why am I telling you all this? Because I think we can only do the best we can do, and to stay as positive as possible is very important. Everything I read agrees with my onc that the herceptin damage is reversable. I will have another echo in two weeks, plus a brain MRI(my first and just to check--no symptoms) and a chest CT to see if the possible fluid is from the heart congestion or possibly more lung mets. I am fortunate to be retired now because I know I couldn't keep up the schedule I used to. My heart goes out to those of you who have to work still, and I know how fearful heart problems can be ontop of BC, but I repeat: learn all you can, do all you can, work with doctors you can trust and talk to, and then turn it over to God. It's hard not to worry, but worrying and becoming weak with fear is counterproductive. That doesn't mean we shouldn't express our fears and share them here! Remember, fear and faith cannot exist at the same time, and fear will debilitate faith. Someone once said that FEAR is False Education Affecting Reality! Concentrate on what builds you up, not tears you down. This site (and the things we learn here) is one of our best weapons we have. I am so grateful for the love and prayers we share here, too, and that we can draw strength from each other and each others' experiences. Thank you all! Hugs, Tricia