Feeling Well Enough to 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, place, event, etc.  – I will sandwich the criticism between two positives.  Here I go…

The good news about the oral medication is that my hair is starting to grow back.  Oddly, it’s much grayer than it was before.  I think, although I’m not sure, that more of the dark hairs fell out leaving the gray ones and it’s the gray ones that are growing back faster.  Also I am not getting mouth sores with this new med.

However, the nausea and vomiting are much worse.  After taking each pill, I get dizzy.  I will say that I’m dizzy for shorter amounts of time the longer I’m on the med.  (When I first started the oral med, I was dizzy for nearly 10-12 hours.  I’d have an hour or two of relief before I’d have to down another pill.)  Now the dizziness starts to fade in 1-3 hours.  I often get nauseous from being dizzy, too.  The frequency of actually vomiting is much higher on the oral med than the IV chemo…and I HATE vomiting.  The answer to all this from my doctor is to try more and different anti-nausea medications.  My goal has always been to be on as few medications as possible – which is impossible as a cancer patient.  I have several other minor side effects, such as visual changes and constipation.  Two of the more significant ones are fatigue and taste changes.   I don’t know if it’s the disease I’m fighting or the medications I’m taking to fight this disease that are making me so tired all the time.  And although it’s thought that the oral med makes food tastes so differently, it may be any of the other medications that I’m on, or the combination.  But just imagine sitting in front of a hot meal that smells amazing only to bite into it and feel like you’ve just taken a swig of dish soap mixed with lighter fluid. 

The second positive is that I think things are getting better.  (I really hate to write that because I’m so afraid that I’ll jinx myself.   So everyone, when you read this, please knock on wood for me.)   My dizziness is lasting a shorter time, and the nausea/vomiting seem to be lightening up a bit.  I’m hoping that my body is adjusting to the new oral medication and in time, the side effects will subside.  (I actually wrote this entire blog without nausea…a first since I started my new med.) 

You know me and my mantra:

 

Visits from Dana, Yurie, Bruce and Vicki

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 counselor and we worked together at the University of California-San Francisco Med Center back in the 80’s.  Life has also thrown Vicki a curve ball recently – her husband, David, passed away, suddenly and unexpectedly in January.  The only positive thing I can think to say for Vicki and me when life sends us shitty curve balls, like cancer and the death of a spouse, is that I’m grateful that we have each other to help us get through the really hard parts. 

I’m so thankful that I’ve had an opportunity to see long-time friends and wonderful relatives.  No doubt, the joy I get from these visits gives me strength and sure does make me happy :)  !

Meet Mia, My Hero

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. 

  

Junkie

 

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 herbal pills, 3-times a day, along with two herbal/medicinal teas per day.  Couple all that with on-again/off-again nausea and vomiting made it impossible for this mortal cancer girl.

Now that I’m on an oral chemotherapy, here’s my daily medications:

It still seems like a lot, but trust me, it’s much better.  

Laughter Therapy

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 entrée!

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 to make it that night, you were missed. Let's plan another therapy session...soon!

Oral Medication vs. IV Chemotherapy

 

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 trying really hard not to throw-up a $233 pill. In the moments just after if all came up, I wondered what I should do…take another? 

Although the other chemotherapies made me nauseous, this is the first time I’ve had to deal with dizziness.  This dizziness is a new complication to figure out...  it leads to nausea, which leads to vomiting.  My usual activities exacerbated the dizziness.  Driving, bending down to pick something up, and even being on my computer makes the dizziness worse.  As silly as it sounds, this side effect makes it really hard to know the best time to even take my meds.  The directions are to take one capsule twice a day.  Ideally, one would space the two pills 12 hours apart.  If I took one at bedtime, say 10 PM, and then went to sleep, the dizziness wouldn’t be a problem.  But then if I took one at 10 AM, how could I work or do other daily activities.  So, for now, I’m trying to set my morning alarm and take one at 6 AM.  Then I try to fall back to sleep for a little while.  The second pill I’m taking at 8:30 PM – not exactly 12 hours apart, but the best I can do for now. 

One side effect that is better is my hair loss.  In the past week my hair has stopped falling out.  Additionally, some areas are actually growing back, but it’s very uneven and patchy.  The best comparison I can come up with is Father Junipero Serra:

Until I get used to my new medication and adjust to the dizziness, I may not be able to blog as much.  Don’t be worried about me.  I’ll write whenever I can, (assuming I have something to write about.)

BCBS Comes Through!

I got word this morning that my insurance company has agreed to cover the cost of my new medication, crizotinib.  Yahoo!  That will save me $14,000 a month, which means that we won't have to mortgage our house! 

Waiting Game

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!

 

 

Caught A Break – FINALLY!

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 anything in medicine, there are risks, benefits, and limitations with crizotinib.  Here’s what I’ve read or been told so far: 

ROS1 and the benefits of crizotinib are relatively new findings.  The articles I’ve found are mostly from 2012.  Because ROS1 patients are rare, there isn’t a large body medical literature about us.  Of the small population of patients reported, all have responded well to crizotinib.  All targeted therapies, and chemotherapies for that matter, will work for a while, but not forever.  Some of the other targeted and chemotherapies have been used for several years now, on thousands of patients, so there’s good data about how well they work and for how long.  For crizotinib use in ROS1 patients the data is scant. Some information can be extrapolated from other studies because crizotinib is used in patients with another tumor mutation that is similar to ROS1 – so side effects, etc. are known.  I read a small study that concluded that this medication will probably not extend the length of my life, however, will vastly improve the quality of my life.  This is huge!  Since I won’t have to get docataxel, my hair will grow back and soon my immune system will return to normal so I won’t be immunocompromised.  I will be able to get out of my house more and even travel. Plus, all the other bad side effects I had with docataxel I won’t have on this medication.  When I was recovering from docataxel side effects, I watched Wynn, Nathan and Nina suffer with me.  My relief is their relief too.    

There are some side effects I need to be cautious of – I will have liver enzyme testing every other week and have to be aware of my breathing and lung functioning.  Vision changes, nausea/vomiting and GI problems (diarrhea or constipation) can also occur.  (Sheesh, as I write this I sure hope it’s better than the docataxel.)

So yesterday, I didn’t have to have chemotherapy.  I only got my bone strengthening IV, which meant only 45 minutes in the chemo chair instead of 4 hours.  I was hoping to start crizotinib yesterday, but my insurance company declined coverage until further investigation.  As disappointed as I am, I can almost understand it….crizotinib costs $14,000/month!  My doctor said not to worry and that it’s just a matter of going through the appeals process, which means he has to write a letter of medical necessity and present to the insurance company the recommendations of some national cancer policy board – which has only one treatment recommendation for patients like me, crizotinib.  

The appeals process began a couple days ago so for now, I am keeping calm, carrying on and hoping to start my new medication on Monday. 

(BTW, my eye is all better.)