Monday, March 12, 2012


I have now being taking Herceptin for around 20 weeks, Herceptin is one of the most powerful drugs for breast cancer HER2 positive out there that can help up to 50% recurrence of the cancer. However it is still relatively new drug and not much is known about how much, how long and how often to use it. The US has taken the protocol to administrate the treatment for 12 months in early stage breast cancer, while European countries only do it for 3 months in same cancer stage. However as my doctor explained today there is no evidence yet to know which one of both protocols is the best.

There is only one side effect from Herceptin and it is that could weak your heart muscle and for that reason they do what is called MUGA scan every 3 months. You can google MUGA(Multi Gated Acquisition Scan) scan and will tell you it is a nuclear medicine test that determines the efficiency of the individual heart valves. It is measure in % and the normal range is anything over 50% but it is really rare to have it over 70% or saying another way it is really rare to have a perfect heart or 100%. My first MUGA scan back in July had a whoopy 66% which could be considered really good. I had another one done after chemo and it was 64% which was great considering that Adriamycin could affect your heart. I had another one in February and had gone down to 56% so that puts me into the category of "have to be watched very closely from now on".

I will have my next MUGA scan in the next two weeks and my doctor has said that as soon as my scan shows anything lower than 50% she will stop Herceptin. The good news is that it is reversible so your heart does recover as soon as you stop so this does not mean that your heart is not going back to normal. The bad news is that for me it is really important to finish the protocol, it will make me feel better to know that I have gone through all of it. I could go back to Herceptin later on if needed though, just will not be able to go now while my heart is not strong enough.

For now my doctor seems quite relax, I even asked her if I could be doing more aerobic exercises like running or zumba and she says that the heart condition does not stop me of doing anything, I only need to watch my body and if I get tired I should stop but that is about it...We have been doing long walks in preparation for the Susan G Komen walk and I feel I can start doing something else!.

Thursday, March 1, 2012

1st Annual Connor Johnson Invitational - Connor Johnson Invitational

I have known Mariam for over 10 years now and it was devastating when we found out that Connor had been diagnosed with a really rare brain cancer. This is an event that they have put together to support the pediatric brain cancer research at Packard in Stanford.
This is a note that Mariam sent out and the link of the event. Please support them if you can.

The Oz Foundation is generously hosting a special golf tournament on May 27th in honor of our late son, Connor Johnson. Connor was diagnosed with a rare brain cancer called DIPG in February 2010 at only 3 ½ years old. Most kids with this diagnosis live less than 9 months and the horrific prognosis for this disease has not changed in 35 years. Our Connor lived a wonderful 16 months and was 5 when he passed away last year. We miss him terribly. He was our ray of sunshine and brightened a room with his infectious smile. Please join us to change the odds for these kids and help derive a better prognosis. We are not too far off but we need your help.

The event is for adults and kids--golfers and non-golfers. It will be fun, come golf with your family. There will also be a silent auction. 100% of proceeds will go towards pediatric brain cancer research. Even if you can't make it, you can donate through the website. Thank you!