Echo and Muga reports

[TriciaK]

I said I would let you all know when I got the results of the echo and MUGA, so here I am. I saw the cardiologist today and he learned a bit more about herceptin--(he had never heard of it when I first saw him over a year ago! ) The latest echo score was 30 and the MUGA just under 37. Six months ago it was 58. My oncologist took me off the herceptin last week, a bit scary, but I was able to be on it for 15 months inspite of starting out just after a heart attack. I think under the circumstances, a drop of 21 points isn't too bad. And everything has worked, because my last PET showed NED. So I am diagnosed with probable congestive heart problems. I am feeling very weak and tired, hard to breathe and can't do much, but I am not too discouraged. In the two weeks between the echo and the MUGA I doubled up on coQ10, fish oil and garlic caps, and feel that helped. The cardiologist wants to double the accupril and start metropolo again. My blood pressure is normal and I stopped the Metropolo 6 months ago because of dizzy spells, so I'm not sure if starting it again will really help, but he wants me to try it and see him again in a month. I am adding more olive oil and flaxseed oil. Any other suggestions? Most of all, I promise to keep the faith, stay in touch and stay positive! Hugs to all and best wishes for a merry Christmas and the best of new years! Hugs, Tricia

[al from Canada]

Hi Tricia,
since you are off herceptin, have you considered a clinical trial such as lapatinib or one of the HER2 vaccine trials? I'm sure these have some measure of therapeutic value of they wouldn't be offered . My suggestion would be that you go to the NCI web site and review the clinical trials (non-invasive) that apply to HER2 BC that is NED.

What you probably need to do is give your heart a rest BUT also but yourself some more time until the cardio thing improves. All the supplements you are taking make sense. I would probably add three things: curcumin, which is gaining a reputation as a cyto-toxic herb specifically active in HER2; immune boosting mushrooms such as maitake and an and an adaptogen such as rhodiola rosia.

Good luck and keep us posted
Al

[kristen]

Dear Tricia,

Hugs and a warm Holiday Greeting back to you and your family. You have such a good attitude and faith and an onc who is right on top of it that I think you will be fine.

I admire you for keeping up on taking supplements that will help you and your heart to get better. You amaze me on how well organized you are. I am lucky to remember to take the pills that I am supposed to take.

Have a happy holiday season. I guess it is right around the corner, I better get a move on or I am going to have some very uphappy children come Christmans morning. love to you.

[Sheila]

Tricia
Take this time to let the heart meds work, strengthen yourself and be ready if you do have to fight again...have they checked your blood count, as anemia can also mimic congestive heart failure with the shortness of breath and weakness. You will be in my prayers for strength and healing...you are so important to all of us on this board....and such a role model! Take it easy and let others do for you for a change.