Xeloda- Just Not for Me

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November 5, 2015- 1st day of IV chemo and November 5, 2016- 1st day of oral chemo

It is finally time during my cancer journey for me to have three-month check-ups. It is so crazy and feels so weird that I don’t have to go to the doctors every day/ multiple times a week, in a way I felt lost at first when my oncologist said to me, “I will see you in three months”! Like my thoughts were, what do you mean three months! I cannot go without a check-up! A cancer patients worst nightmare is “what if the cancer comes back”! To me, if I wasn’t seeing my doctors so often, maybe I would miss a symptom or something, I don’t know… perhaps I’ve just become dependent on my team! With my oncologist, surgeons, fertility specialists, geneticists, gynecologist, dietician, and primary care physician… I was so used to all angles being covered.

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My three-month check up was scheduled and I decided to go without my hubby because basically it was just a check-up right? WRONG. So, I got all dolled up because I love showing my medical team that even though I have cancer, I can still look fabulous. At this point, I feel good, I have a new job, life is good! Until that appointment…

I signed in and said some hellos then was called back for my vitals assessment. I stepped on the scale, wanted to throw-up over my weight, they took my blood pressure and pulse and walked me to an exam room. A “normal” patient waits for the nurse to walk out before changing into a gown however its so usual for me to talk and change, I’m sure the nurse just laughs at me— I mean lets be real, what do I have to hide?!

My amazing oncologist Dr. Raymond came in a few minutes later, and performed her little exam. It always makes me laugh because the pre-cancer me would have felt so awkward having a doctor feel me up… then the cancer me whips open the gown and encourages a thorough wax on/ wax off of the titty tatas… I DO NOT want her to miss a bump!

She explained everything was normal, which was what I expected and the reason I didn’t drag John to yet another appointment. I closed up my gown and she sat down… FYI: when doctors sit down and make themselves comfy, typically there is something about to come out of their mouth that you may not want to hear! The next few words out of her mouth I only caught in bits and pieces. “Chemo… six months… minimal side effects… increase survival” were a few words I may have heard prior to my heart practically jumping out of my body.

When I focused more onto what my doctor was saying, it turned out that she was recommending a preventative chemo regimen because—news to me, I didn’t respond to typical chemo as good as they had hoped. Just to remind you all, I was diagnosed with metastatic breast cancer with tumor and 2 lymph node involvement. I am HER 2 (-), Estrogen (+) therefore my treatment is kind of tricky.

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Xeloda (chemical name: capecitabine) is an oral chemotherapy that newest research has found to be a beneficial preventative drug when used along with regular chemo regimens. In the past, this specific drug has been used to treat advanced-stage breast cancer that had stopped responding to regular chemotherapy. It is typically given before surgery to weaken or shrink the cancer cells as a neoadjuvant treatment. “Neoadjuvant treatment often is recommended when the breast cancer is large, aggressive, and/or has spread beyond the breast to surrounding tissue” (thank you breastcancer.org).

As per my doctor, because I had to stop traditional chemotherapy early due to my multiple allergic reactions, when my surgical oncologist performed my mastectomy and my tumor/ surrounding tissues were assessed, it turns out that my tumor actually looked like swiss cheese. Basically, the chemo had an effect however not a complete effect therefore in doctor terms, there is “residual disease”. There were still cancer cells found in my tumor however lucky for me, my amazing surgeon DID get clear margins during my procedure. This means that the outline of tissue taken was clean of cancer cells. In essence and hopefully reality, if there is clear margins there are no lingering cancer cells… hopefully however being that there is still residual disease, that’s the problem and that’s where this lovely cancer journey just never seems to end!

Anyways back to Xeloda. So basically, my doctor who I literally and trusting with my life is telling me to go back through chemo. I felt like my life was crumbling from underneath my feet! Just when I felt like I had a grasp on my situation and things were looking good for me and my family… BOOM, cancer reminds you it is still there… DAMN L As I held back my tears with a huge ball in my throat, she explained why she was recommending this treatment and what the research says because she knows I only trust in the numbers.

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There was a Japanese study conducted that used Xeloda on women diagnosed with early-stage, HER2-negative breast cancer with residual disease after surgery and it turns out, they had a better survival compared to women who didn’t get chemotherapy after surgery. It always upsets me hearing something like this because when I step back and look at my whole picture. I am 27 years young and just because of CANCER my life expectancy is already lower than other healthy girls my age… that’s a little bit sad in a way. I mean of course anyone can die tomorrow, but like GOSH I hate being a statistic…

So about the numbers, and these are from the link below… “Half the women in the study were younger than 48 years old and half were older; 58% of them were premenopausal. About 63% of the cancers were hormone-receptor-positive. After about 5 years of follow-up, the researchers found that women who were treated with Xeloda after surgery had better disease-free survival than women who didn’t get chemotherapy after surgery:

  • 1% of the women treated with Xeloda were alive with no recurrence
  • 7% of the women who didn’t get chemotherapy were alive with no recurrence

Xeloda also improved overall survival:

  • 2% of the women treated with Xeloda were alive
  • 9% of the women who didn’t get chemotherapy were alive

When the researchers grouped the women by age, hormone-receptor-status, cancer grade, or type of neoadjuvant chemotherapy, they found that Xeloda still improved survival.”

Okay, well after all those amazing stats I would be dumb to say no right?! I think my doctor saw the shock in my eyes though and sent me home to “think about it” and talk it over with my family. I literally left her office, walked to my car, and began hysterical crying. I called John and could hardly get the words out. In that moment, I felt defeated. Although it’s all preventative and technically I am CANCER FREE… its just so upsetting. Its like I take 1 step forward and 5 steps backward, it sucks!

After doing my own independent research, talking to my family, and ultimately trusting in GOD, I decided that this is something I have to atleast try. Heck, an oral chemo is better than normal chemo right?! The next day Dr. Raymond actually called me personally after office hours because she felt that I was overwhelmed at my appointment. She sort of set my mind to ease by explaining this decision is up to me… however they always get you when they say, “but if you were my daughter..”, Gosh just sign me up then!

After almost two weeks of getting insurance clearance then delivery from a specialty pharmacy… I finally had my lovely chemo pills in my possession. The pharmacist actually had to verbally go over all the side effects and precautions because it is a chemotherapy drug so of course I hear all the worst of the worst things that “may” happen however they always follow-up by saying, “don’t worry though normally people do really good on this drug”— they don’t know me though!

I was not allowed to start the drug until I had bloodwork done and met with Dr. Raymond again. I packed my pills up and went into her office again—however this time, a little more prepared for shocking news than the last time. Still upset over the whole situation, her nurse who I absolutely love and feel as though ive grown extremely close walked in and I started hysterical crying. WHY MEGHAN!!!! I always feel like such a loser when I do these sort of things however… GOSH do I feel so much better after!

I guess facing chemo and “cancer treatments” again and just knowing all I went through during my traditional treatment, basically I’m scared! I already absolutely HATE taking medications, it just doesn’t sit too well with me that Im putting poison into my body to supposedy “heal me”. It just overwhelming L

After a big hug and the doctor explaining to me that she will not force me to do this yadada… I was given paperwork to sign and in about two seconds of signing my name I felt like I was signing the trust of my life to another person Ive barely known for more than a year! What has my life become…

Next we discussed the part I was most interested in: Side effects. Being that Xeloda is a chemotherapy drug, it does have all the same side effects as any typical chemo nausea, vomiting, hair loss you know everything people typically relate to CANCER. However, the most common side effects of Xeloda are

  • neutropenia (low white blood cell count)
  • diarrhea
  • hand-foot syndrome- dry cracked skin as my doctor describes it

Per my doctor and the pharmacist, turns out side effects are “typically” very minimal, but like anything else in this journey— its all trial and error, especially with me.

My doctor decided to put me on the lowest doseage of 2500 mg a day (2 pills in the am, 3 pills in the pm) for 6 months (1 week on/ 1 week). After receiving my doseage, I immediately made a stop at our local pharmacy to pick up my prescription once it was all cleared by insurance yadada. John and I decided to go away for the weekend and coincidentally it was the same weekend that I would be starting to take my chemo pills.

Side note: I probably dont say it enough… but my husband is absolutely amazing. Knowing how nervous I was about beginning chemo again, he made arrangements for us to take a mini weekend trip to his families cabin where me and Izzy literally sat on the couch for two days watching Netflix! It was sooooo needed!

Anyways, my Xeloda schedule was to be taken twice a day, 12 hrs apart. This sounds simple until I realized that my weekend and weekday pill schedule had to remain the same. So, finding a time that would work for work hours and attempting to sleep in a little on the weekend was a little bit of a challenge. I decided that 8:00 am and pm would be my magic numbers. As the clock read 7:58…7:59…8:00 my heart sunk as I placed the rather large pills into my mouth. A big gulp of water and ai was officially a chemo patient, again:(

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Coincidentally, I signed onto TimeHop and on this exact day 1 year ago, I began IV chemo! So weird! After taking my first doseage I tried to relax and not imagine that I literally just ingested poison. The first day ai really didnt notice any major side effects other than being tired but I also had to account for my laziness and being relaxed away from society at the cabin.

That night I took my next dose and it wasnt until the following morning dose that that good ole sense of nausea presented itself. I tried to get something in my stomach but literally just did not feel well. We headed home and I called my doctor to see if she could call me in some nausea medicine. Being a Sunday, the on call doctor had to be paged then once I finally talked to her my pharmacy closed.

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WHY I HATE CVS…

I called around and found that the local CVS had late hours on a Sunday, so I called them to see if I was allowed to have my prescription called in there. Long story short I hate CVS. Basically they didnt tell me that they dont take my insurance, then… I called them around 7:00 because I hadn’t received a message or phone call that my prescription was filled and the girl says, “oh were closing in 5 minutes”.  SAY WHAT! I wanting to burst into tears!  1. feeling nauseated is one of the absolute worst feelings in the world, and 2.  this girl knew I just started chemo and was nauseous from it, why in the world would she not call me knowing I went out of my way to have it sent to their pharmacy!  What kind of heartless individuals does CVS hire!  I immediately begged her to wait 10 minutes so I could come and pick up the prescription.  She said she could only wait 5, and my mother in law flew out of the house in a rush to get there before closing.  About 4 minutes later, the pharmacist called me back and said we have to close the store… my response was my mother in law is probably right outside– however they were unable to remain open, despite it being their fault for not letting me know the prescription was filled.

Can you believe my mother in law got there as they were closing up and the girl had the nerve to say she could get the prescription transferred to another CVS 15 minutes away! THE FREAKIN NERVE! I mean, I never ever ever pull the “cancer card”… but BITCH I FEEL LIKE IM GOING TO VOM FROM POISON THAT KEEPS YOU HAVING A JOB! How in the hell does a person with any sort of heart just close knowing that someone is suffering? I don’t get it!  When you go into a position in the helping field, sometimes things happen and you have to go out of your way to help people… I get it, her shift was done, but I could never do that to someone! My whole thing is… there had been plenty of days when I was working in the hospital and things happen at the end of the day and I stayed late… doctors stay late… nurses stay late, why would a pharmacist literally not wait 2 minutes!  Biatch gets paid enough, she could have waited… I may or may not have wished her to have severe diarrhea as payback 😉

Anyways, my amazing mother in law did get the prescription transferred to another CVS and the man working was extremely caring and got the medication I needed.  I literally was so irrate and now I refuse to go to CVS for anything because they SUCK! 😉

Okay back to Xeloda…

So, the next day I went to work despite feeling really sick… but made it through the day.  The following day I woke up extremely nauseous and dizzy.  I was having an increase in hot flashes and just felt sick.  I called my doctor to request another anti-nausea pill and we came to the conclusion that being that this is a preventative treatment, there is no reason for me to be suffering and having this medicine affect my overall life.  I mean, I literally just started my dream job, I don’t have time right now to be a chemo patient again.

In conclusion, I was a chemo patient for an additional 4-5 days.  I have since quit taking the medication and am once again back to being me and sparkling on!

XOXO

Meg

 

For more info, check out: http://www.breastcancer.org/research-news/xeloda-improves-survival-for-some