Thursday, February 19, 2009

Many rounds of Herceptin to come

Another round of Herceptin under my belt yesterday and I found out from the doctor that I will be on Herceptin for some time. I thought one year is all that I would be on it for, but when I asked him how many patients he has that have been on it longer he said a few and I would be one of them. I will continue with it until it no longer works. Then I will go another type of Herceptin called "Super" Herceptin, which is an oral form. So for now and hopefully a long time as long as its keeping the ugly beast away, I will be going in every 3 weeks for an infusion of Herceptin. As I was waiting in his exam room yesterday I saw a magazine that caught my eye. It was all about stage 4 breast cancer and in there was an article about HER 2 positive and how the tables have turned in the last 10 years about being positive. It was said that if you were HER 2 positive 10 years ago you were more or less DOOMED, but now that is not the case. There is so much research going on in that area. They are looking to eradicate the over expressed HER 2 positive gene in people's bodies with a vaccine and also are looking into why Herceptin becomes resistant to certain patients. Sometimes patients have no response at all to Herceptin. Again I'm so thankful that my treatment is working and I am responding so well. It was very interesting and promising, I'm very HOPEFUL that I will be around a long time.

Speaking of being around a long time, I have a funny story to share. Bryan and I were at the airport getting ready to go on our trip to Mexico, which I received as being Employee of the Year, thanks to all my fellow coworkers, and the security guard at the checkpoint where you get your carry on bags checked asked me who I knew that has (had) breast cancer because I was wearing a hat with a pink ribbon on it. I pointed to myself and he looked at Bryan and said she's going to be around to bug you for a long time and gave me a high five. We all had a good laugh and I do feel sorry for Bryan though. LOL. We had fun on our trip, but missed the boys terribly. This is the longest that we have ever been away from them. It was strange just to take care of ourselves. I think that we both felt a little lost without the boys. Brock said that he missed us very much, but I think that he enjoyed his time with Stacie and Brad and his cousins. I'm sure the Nelson family has the latest version of Charlie and the Chocolate Factory memorized as this is Brock's favorite movie now and we watch it almost everyday. He even acts it out when we are not watching it. He's a little obsessed I have to say. Griffin probably missed us too, but of course could not tell us, I think he was ready to go home and sleep in his own bed. He is crawling everywhere and getting into everything. He is definitely different then Brock ever was. I think that he will be my little risk taker, watch out.


Bryan relaxing on the hammock on our balcony


Our view for 4 days


My little amigo enjoying his souvenirs from MEXICO


Griffin being his happy self

My MUGA scan was good at 66%, I have to be below 50% before I can no longer take Hercepitn., but if that happens my heart will gain back the strength over a little time and I can start the treatment again. I will have another MUGA scan in April and also will have a CT scan that same day. I asked why not a PET scan and he said that a CT scan will show anything that is less then 1 cm unlike a PET scan that won't show anything smaller then 1 cm. And its also very good at getting pictures of the tissues then the PET scan. I 'm always so full of questions when I see him, but I think that he likes it when you are involved in your treatment, he doesn't seem irritated when I am asking them. I am learning so much through all of this. My hemoglobin is slowly going up, I am now in range at 11.9. My tumor marker is at 16.7, I hope that it will go all the way down to one, but of course I never knew what I was at before all this happened, so being 16.7 is in the normal range if its my normal range that I will never know unfortunately.

There was a cancellation at the genetic office, so I will be going in on Monday for my follow up. It's weird that I feel a little nervous, but knowing what the result will be will have an important part in deciding what to have done for surgeries, which I am acting like a baby about. To tell you the truth I would rather go through chemo again then have surgery, call me crazy, but I have never had any surgeries so not sure what to expect. I know no matter what the result will be I will be happy that I did it for my family and kids, so they know what their risk factors are.

I am staying home today with the boys because Brock had a fever last night and early this morning, so hoping that some rest for him will get him better quick, so we can go back to daycare and work tomorrow. Bryan is getting over this bug as well. So far Griffin is healthy and myself as well and hoping it will stay that way.

One last note please keep Karlye and her family in your prayers as her cancer has once again returned. It breaks my heart to see this 6 year old sweet girl go through what nobody should ever have to go through especially at her age. Have I ever mentioned how bad I HATE CANCER!!!!! Her site is www.caringbridge.org/visit/karlyedeutsch . Thanks for all your support.

4 comments:

Aunt Brenda said...

Dearest Nicole,
I am so glad you and Bryan enjoyed your time away. It is wonderful to hear that you continue to do well. With such a positive attitude, you are destined to come out on top. You amaze me. Stay strong! Love you always,
Aunt Brenda

Anonymous said...

Hello sweetie
Your grandmother and Roger are so happy to hear from you, about your treatments, your vacation and the Johnson household family. We thank God for his part in this fight and pray he will continue to be at your side every day. I would love to see those boys and you and Bryan, but guess that has to wait till Aug. and the 3 of us kids can celebrate together. Thank you for the pictures and your notes. Love you always, Grandma Adele

Jayme said...

Hey Nicole! I'm happy to hear things are going well and I find it very interesting and informative everytime I read your blog. I know many patients who just go through the motions and do what the Dr. tells them to, but don't really understand it all. I think it's awesome that you really understand and ask questions. You have a right to know what and why you are doing the things you are and - Keep those docs on their toes! Just wondering, do they have a PET/CT camera there? I have no doubt you are getting the best care, it's just one of the "newer" things that is becoming more popular in cancer staging(at least in the Des Moines area it was). Maybe that can be another question for your next appointment... ;) Take care girly! Jayme

Anonymous said...

Nicole.Keep up the good work kicking cancers butt!...Thank you herceptin for doing your part!...And thank you God for answering our prayers.Love to you and your family Nicole.........Lov C&D Griffin