Caroline's Breast Cancer Blog

  As I�ve mentioned, I haven�t been able to blog very much lately, mostly because the oral chemotherapy makes me pretty dizzy and working on the computer makes me nauseous.   However, the other reason I haven�t blogged much is because I really didn�t want to write that things weren�t going very well for me. It�s hard to write about that.   However, more recently I think things have gotten a little better and I have more energy to write. I was very hopeful that the new oral medication would be a game changer for me.   I hoped that I wouldn�t have much in the way of side effects and that overall, it would be much easier for me�and my family.   After all, it�s a twice a day pill, rather than a 3-5 hour IV session every three weeks, followed by 5-7 days of nausea and vomiting, etc.   Sadly, and disappointingly, the oral medication is no easier or better.   I will, however, describe it in the conscientious way I do when trying to be critical of a person, pl...

I haven�t been able to blog very much lately because I�ve been unable to work on my computer due the side effects of my new oral chemotherapy.   I�ll blog about that later.   What I do want you all to know is that in between nausea days and vomiting, I had visits from some wonderful friends and family in mid-March.   Dana and I go back to the early 80�s when she and I shared an apartment in the Richmond District in San Francisco, (on 26 th St. between Clement and Lake.)   Dana stayed in the Bay Area and now lives in Menlo Park.   She�s my spark plug � and a wonderful artist.   Come see some of her works at my house! Also, that weekend, my cousin, Yurie, and her husband, Bruce, came to visit me.   Although Yurie is from Tokyo and Bruce is from Rhode Island, they are now living in Saipan � which sounds like paradise.   A few days after Dana, Yurie and Bruce left, my dear friend, Vicki came to see me.   Vicki is a fellow genetic cou...

Mia is in kindergarten and the daughter of a nurse I work with.   She  had very long hair and decided to get it cut.   But before getting it cut, Mia grew it out as long as she could so that she could donate her hair to Locks of Love � a non-profit organization that provides hairpieces to financially disadvantaged children in the U.S. and Canada, who have long term hair loss due to a medical condition.  (www.locksoflove.org) Mia grew her hair out so long that when she finally got it cut, she was able to donate 12-inches!    The reason Mia is my hero is because she donated her hair in my honor.   Thank you, Mia.   I am so honored and I will never forget your act of kindness.      

  Much of my energy during a day is spent trying to remember to take my medicines.   Prior to my diagnosis, I was taking prescription medications for high cholesterol and hypertension, and some over-the-counter vitamins and supplements � a multivitamin, fish oil, and vitamin D3.   Since my diagnosis, I�ve been on so many medications that it�s mind-boggling.  At the height of my pill popping, here�s the arsenal I was taking every day :   The white bottles on the left are from a Chinese herbalist.   At that time, I was trying to balance the western medicines with eastern herbs.   Unfortunately, I wasn�t able to keep up with all the pills I needed to take.   I was having trouble coming up with a pill-popping schedule because some of the medicines and herbs I was on needed to be taken with food, others without food, some 1 hour before eating a meal, others 2 hours after eating food, etc.   Plus, the Chinese herbalist wanted me to take 24...

Last Saturday night, my dear friend, Kelly (far right), organized a dinner out with some friends.   Many of them are genetic counselors that I�ve known for years.      I was hesitant to go out that night because it was only the second day after starting my new oral chemotherapy and I had spent most of that day fighting off nausea and vomiting.   At the restaurant, I still felt like crap.   Although it was great too see everyone as they arrived and the placed smelled amazing, I knew that I couldn�t order any food. Then something magical happened.   As my friends and I talked and laughed, I realized that I was feeling less crappy.   We talked and laughed some more, and I decided to order a side of rice.   The more we talked and laughed, the hungrier I got.   I ordered an entr�e! I had a wonderful night catching up with everyone and am reminded how therapeutic laughter is. Thank you to everyone who came, and to those who weren�t able...

  I was pretty happy and excited when I learned that I have a ROS1 mutation.   I really looked forward to taking an oral medication.   The idea of taking a pill rather than having to get IV chemotherapy made me think that managing my cancer wasn�t going to be such a big deal.   However, I must admit that my enthusiasm has taken a beating since starting the oral med five days ago.   For some reason, the message I got from my cancer doctors and nurses was that an oral med would be "so much better.�   Being an optimist, I thought this meant that the side effects would be better or easier to tolerate.   I sure don�t want to sound like a I�m whining, but the side effects of this oral med are also kicking my ass.   Within an hour of taking crizotinib for the first time, I was dizzy � which is on the warning label right on the pill bottle.   Then soon after that, I felt really nauseous.   In the moments just before it all came up, I was t...

I go t wor d this morning that my in sur ance company has agreed to cover the cost of my new medication, crizot i nib.  Yahoo!  That will save me $14,000 a month, which means that we won 't have to mortgage our house! 

Since Friday, my oncologist has been going back and forth with my insurance company about covering the cost of the new medication.  So far, BCBS has denied coverage and we are continuing the appeal process.  Right now the ball is in BCBS's court so I am just waiting.  If anyone has any ideas about how to expedite this process...let me know!    

Great news!   Late afternoon on Thursday, I received a euphoric call from my oncologist - I have been found to have a ROS1 mutation.   This is really great news for me and my family!   I haven�t blogged about ROS1 before because I didn�t think about it much. Early on in my cancer journey I was tested for tumor mutations and despite having a 50-80% chance of having a common mutation, I didn�t � which was unspeakably disappointing.   ROS1 is RARE.   One percent of people with the type of lung cancer I have will have a ROS1 mutation. The odds were so low that I hardly registered the possibility in my mind.   So�why am I so happy?   Folks with ROS1 tumor mutations are treated with an oral medication called crizotinib (aka Xalkori).   It�s a pill I will take twice a day.    Crizotinib will, in simple terms, correct the mutation in my primary lung tumor AND the mets to my liver and bones. No more chemotherapy...for now.  Like with...