6 days on Xakori - Side Effects, Carpool, Moon Festival

It's been officially 6 days since I've started my new treatment regimen, taking the daily pill Xalkori twice per day.  And within the first 2 days taking it, all I have to say is, OMG-(Oh my goodness), the side effects hit me pretty quickly.  Granted, it's not chemo infusions, but technically, it is still a form of chemo in a way, but in a pill form.  So far, I've experience ALL the major side effects being on it as my Dr. warned me about. 

Some of the known side effects that I have experienced are:

• Vision problems (Blurred vision, double vision or increased sensitivity to light)
• Nausea
• Diarrhea
• Vomiting
• Constipation
• Fatigue
• Decreased appetite
• Dizziness
• Increased liver enzymes (at least I feel my liver working a bit harder)
• Numbness or tingling in extremities
• Taste changes
• Heartburn

The vision problems started right away and then the nausea, vomiting and diarrhea hit me by day 3 (Thursday, Sept 27) pretty hard as I had to run as fast as I could to the bathroom practically all day long. No fun. By end of business day, Thursday Sept 27, a little concerned, I quickly called my Dr.  But, by Friday, Sept 28, after I learned to take it with food or after I ate a meal, nausea, vomiting and diarrhea just stopped completely. But, it was comforting to be told by my doctor that it was safe to take some over the counter anti-diarrhea medicine for it in the future if it was needed. However, after day 3, I think my body is slowing adapting to this medicine better as I don't experience those initial side effects anymore; except for the vision, heart burn and taste changes issues.

Carpool buddy
As for the vision problems, that is little bothersome, but it's not so bad as it only occurs in the morning and at night when the light changes.  As far as driving goes, my Dr said it should not effect my driving ability and that it is safe for me to drive.  Fortunately even before I started taking this Xalkori pill on Wednesday, luckily, while having lunch with a coworker on Monday, Sept, 24, my coworker asked me about carpooling to work since we live practically less than .5 miles from one another.

So after that lunch discussion, we immediately started to carpool the next workday.  So far, we've carpooled to and from work for 1 week already and it's great! And, my coworker offered to drive from now on too since his car is smaller and gets better gas mileage. So cool. I love it. No longer now do I have to drive, sit in traffic for over 1 hour to rushed into work every morning and I get personal pick ups and drop offs right at my house everyday, 4 days per week (I work from home on Wednesdays). This is perfect! Especially now that I have sensitivity to light and changes to my vision with this drug, this works out wonderful. And yes, to be fair, I do help contribute towards some gas money, but its nominal. Hurray for carpool. What's also cool about carpooling is that it benefits the environment; with reducing emissions. Furthermore, another plus is that I get to be home a little earlier too since we can utilize the carpool lane. What a concept.  Good deal.  I hope we can keep this carpool arrangement going for a long time.

So far I'm getting used to this pill regimen and I think it's starting to help...but perhaps it's too early to tell.  Keeping up my daily wishes that it will do a miracle for me.

Moon Festival
Other than the usual business with work and kids, I was able to help my family/parents resolve some difficult personal, financial matters (by staying up late every night this past week, until the wee hours), researching, reading and gathering info and emailing with my advice) and I'm happy to say that I was able to help them out.  And the solutions we've came up with are getting resolved, but more work for me to do too to continue help out.

As for family time, last weekend and this weekend, the kids and I were happy to celebrate and attend some Moon or Mid-Autumn festivities with friends.  The kids had a blast, getting their faces hand painted with little characters, winning prizes while playing some fun kid carnival games, seeing the lion dance, getting moon lanterns and spending time together as a family.  And of course, on Saturdays, the girls love to attend their dance classes and Ethan is doing so well with his soccer.  He loves playing soccer and is good at it. I'm glad he likes it as it's great physical exercise.  Happy Mid-Autumn everyone. Cheers! Lots of Love.

Long Awaited Ordeal of getting Crizotinib- over 3 weeks and counting

It's been a little over 3 weeks now since I have not gotten any sort of treatment and I'm just getting really concerned of how my body is dealing with all the cancers that's multiplying by the millions and growing rapidly everyday without treatment. Even though my Dr pre approved for this pill months in advance, there's been lots of red tape in getting this in my hands. And yes, I've been following with this from the beginning since 2 weeks ago when my Dr discussed with me to switch treatment regimen.

 At first, my nurse & Dr team said (on Wednesday, 9/12), it's all approved and all I have to do was wait for it to be delivered to my doorstep within a couple of days, latest by Monday 9/17). By Friday, Sept 14 when it didn't arrive, I already placed a call to my nurse thinking perhaps I can pick it at my local pharmacy instead. But they had told me, it's not an ordinary kind of drug or prescription and so it's a required specialty drug that has to be ordered and mailed and so sit tight, it should arrive soon by Monday or Tuesday.

 But by Wed morning, Sep 19 when it did not arrive, I started making my own calls...soon enough I was told my insurance provider doesn't even carry that kind of drug and so I had to register or call other providers to like Caremark to try to fill it. After 1 hour, and more calls to my nurse, it was sort of complete. Or at least everything was all handled...however, by Thursday, I received another call stating from my assigned specialty drug case manager of CVS Caremark that they too could not fill it and that I have to call another place like CVS CuraScript again and get the prescription faxed over again!

By then, it was to Fri, Sept 21 and by morning, I was told, they are still trying to process the approvals through my insurance and until that's complete, there's nothing further I need to do to get this shipped to me.. And yes, I was very adamant, and did stressed to everyone, that this drug is super urgent and to please put the highest priority on getting this delivered next day ASAP!

So yup, this whole ordeal is worrisome and I feel so hopeless...I really need to get treatment, fast and furious, like, now!

 But, Monday, Sept 24th came and the first thing I did was call my insurance, Caremark and CuraScript to find out what really is the holdup.

 Soon enough, after urgent phone calls over and over, I was able to get my insurance to rush approve this and for both places, whether it's CuraScript or Caremark to RUSH this overnight deliver and fulfill it ASAP for me. AND finally...it arrived by Tuesday, Sept 25!! Yay and halleluyah!!

I actually had to track it down and call CuraScript for where it was delivered to and who had signed it off as by 3:30 PM, I still hadn't gotten it...so after some more running around, searching for whoever signed for the mail, I finally got it in my hands..

I am so glad to have this Xalkori now and have already started taken it for 2 days...so far so good. Like usual, life has been hectic and very, very busy for me and my family..the kids are doing well. All 3 kids are doing very well in school and they all really enjoy it. I've met all their teachers, did the back to school night event, and everyday, after work, like routine, I always spend time with each of them with their school work, interacting with them and talking to them to see how each of their day was like.

Now, let's have this drug, Crizotinib (brand name Xalkori) do its miracle and make me all healthy and cancer free soon! Lots of Love.

Been super busy-new Treatment, CT Results

I know it's been awhile since my last post and I do try very hard to post an update as much as I can, but by nightfall, I'm just really tired with the kids and helping them with homework. Anyhow, life in general has been busier and busier.  My schedule is super full and I just barely have any free down time for even myself. Between working full time, the kids, spending time with them and keeping up with school registrations, their activities, looking at refinancing, kids getting sick, getting treatment, household errands, kid play dates, birthday parties, pet play dates, etc, we're just busy. I'm trying the best I can to do it all, balance it all and enjoying life to the fullest.

Overall Update
Here's a quick run down of everything.  I just had my CT scan done this past Tuesday, 9/11. I went in to see Dr. Neal Wednesday, 9/12 and got the results. Overall, the results show tumors in my right lungs fall between relatively stable or slight progression, meaning, it shows one spot grew about .5 cm and the tumors now are seen as more denser. The bone mets are all basically the same, except there's one tiny new spot about less than 1 cm in my lower back spine, and possibly one tiny new "suspicious" spot in my liver. Dr. Neal now recommends me to stop my Gemzar chemo treatment and start Crizotinib pill. I have not started it yet as I'm waiting for my insurance to issue a mail order 30 day supply. Along with that I'm supposed to get an additional set of blood draws done every few weeks to see the percentage of "ALK" like proteins in my blood. That's just an extra tube of blood labs drawn in addition to my the usual 6 or so tubes of weekly blood draws I still have to do to monitor my CBC, Metabolic, Kidneys, Liver function and other such things I still must do. I' m also planning to apply for co-pay assistance program since this pill retails like $9,400 per month and my copays could relatively be expensive. (I know, it's unbelievable how much this pill costs!)

After hearing the results, after the kids went to bed, I stayed up late, researching, reading and educating myself on this new treatment plan. I'm optimistically hopeful, nervous and anxiously unsure of what and how this new Crizotinib will be like on me since everyone is unique and reacts to it a differently. Some of the known side effects that Dr. Neal told me to be aware of are: slight vision changes, especially from day to night vision, swollen legs from the knee down on both legs, some GI-gastro intestinal effects, some nausea, and possibly a little headache from time to time to name a few of the common effects reported from patients.

 I hope it will be an effective treatment plan and that I can stay on it for a long time.  Since the latest mutation test show that I have over "90% ALK" mutation match, I can only keep up hope, wish, pray that this new treatment will be effective, easy on stomach and that its side effects will be relatively "easy" on me. It will be a such a blessing if it really will be the 'miracle' pill that will shrink all my tumors, declare me NED or in remission! Aaah, that would the ultimate dream to have that happen.

On another note, next Wednesday, Sept 19, I have to do my routine 3 month brain MRI.  I will see my neuro surgeon that same day and will find out the results. Let's hope things all stable on my brain mets as well and I don't have to do any Cyberknife.

Kids Busy schedule
All 3 kids are now in school, except, each of them all go to different schools, which make pickups, drop offs and planning all the more complicated. Emma has just started her preschool, MWFs program at a local elementary school.  Ellen, who is 4 years old, also started a new preschool this week for 5 days. Except, one complication, it didn't work out as I didn't like its curriculum, the structure, the setting and it's sort of laughable that it's called a preschool in the first place. From the 1st day to day three, I instantly knew from her homework assignments and talking to her that it wasn't a good fit for her or for us. Since day one, from dropping her off on Monday, 9/10 to this past Wednesday 9/12 (day 3 for her), I had a gut feeling and from observation and talking to her teacher, that this was not the preschool like setting at all and it would not work. Marketing wise, even though it stated that its main focus was phonics and numbers, preparing her for kindergarten, it's definitely more like a tutoring program. So, by Friday, I had to quickly pull her out of that program and jump through loops in a mad dash to register her onto another community preschool that fits her age group and curriculum. Now, starting this coming Monday, Sept 17, she starts a new preschool geared towards preparing her for Kindergarten, call KinderReady and is a well balance, academica program.  I hope she will like it more as it will definitely give her all the opportunities to be curious, be excited and make learning fun.

As for Ethan, he's doing really well in his 1st grade class at a new elementary school too. I'm so glad he's an easy going kid and is easily adaptable and flexible to new schools and new environments where he's able to quickly be social and make new friends. He's smart and works very hard to make us proud.

Dance, Soccer and Day Trips
Now that summer is almost over, all 3 kids are now back to some extra curricular activities, like art, dance and soccer. During the weekday, they have 1-2 art lessons after their school day so that they can learn to express creatively their art skills after reading a book.  On Saturdays, the girls are back to their 45 minute dance classes in the mornings and Ethan will also start playing Soccer with kids in his age group. The girls just had their dance lessons today and loved it! Ethan is looking forward to his soccer practice and games and I hope he will enjoy it as well as gain learn new skills like teamwork, and get in some physical exercise.

I have lots of day trips, Disney on Ice tickets, parks, festivals, beaches (Santa Cruz boardwalk all day free ride tickets), museums, friends to visit and much more plans to do with them -- all sort of squeezed in the weekends since they have school during the week day. One of them is doing a family "tent camping" event at home, where we'd camp out at home in a real tent, roast marshmallows, tell stories, light up our fireplace, use flashlight, and pretend we're really camping out in the woods, without the fear of bears and wild animals and all the hard work. It'll be fun and something as practice/pretend play for now before we do an actual family camping trip in local or national forest or park.

During the labor day weekend, the kids and I went to see the circus and we went to a kid friendly festival all day venue as well as attended a BBQ play date. We had so much fun.

All in all, I'm doing well. I'm so glad to be feeling great, keeping busy, and working full time. I have so much deep gratitude for having the energy to live life to the fullest with my family. I'm grateful to be able to participate in my kids lives and offer my kids a normal, routine schedule and activities so they have all the happiness they deserve; just like other kids.

Let's keep our fingers crossed, our prayers, hearts and thoughts positively towards more good health . I'm keeping up my daily wishes for a miracle to happen. Hopefully it will happen with this new Crizotinib pill treatment that I will be newly embarking on. Lots of Love.