Thursday, March 29, 2018

Oxycodone Warning and Discovery

I am blessed to not have an addictive personality; I rarely drink, don't smoke and have never tried an illicit drug, in my life. My addictions come in forms of chocolate, and my family; I cannot seem to get enough of either!

So, imagine my surprise, when I realized that I was addicted to Oxycodone! As you may remember, I had rotator cuff surgery, back in Oct. 2017. Immediately following surgery, I was given 5 mg of Oxycodone, in the hospital, every six hours; it knocked me out, and allowed me to sleep during the first three, very painful days, following surgery.

When I was finally released from the hospital, oxygen in tow, I was given anti-nausea medication and oxycodone, for pain. My first day home I took one oxycodone during the day and one at bedtime, I also took one in the middle of the night; that is three pills, in 24 hours.

The second day, I only took tylenol during the day, and one oxycodone at night, when the pain was unbearable. This went on for several weeks; one to two, 5 mg of oxcycodone at night,  to help me sleep. I had no idea how painful shoulder surgery was, and trying to sleep at night was nearly impossible, so it did take the edge off.

Fast foward to the first week of Dec.; I began taking Bosulif, a new chronic mylogenous leukemia medication, which causes me, major nausea. After a few days, this nausea also caused a night of vomiting, so needless to say, I did not take an oxycodone, for pain, because my nausea was so severe. This continued throughout the next few days, with me being mostly miserable.

I started to wonder whether or not I had the flu, as I was having hot and cold flashes, body aches, and an overall feeling of being ill. It wasn't until my skin started "crawling" that I looked up withdrawals, from oxycodone, and low and behold, what I was suffering from was not the flu, but withdrawals from oxycodone!

Needless to say I was SHOCKED! I had only been on this drug for a short period of time, and only 5-10 mg, during a 24 hour period. I just couldn't believe it, and it made me realize how quickly and easily people can become addicted to this drug, without even realizing what is happening.

I was mortified and told my grandson that his Nana was a drug addict! I explained to him what had happened and how easily my body became addicted to this drug. I used it as a learning experience for him, and pray that I am never in a position to have to take it again.

The withdrawal symptoms fortunately only lasted for three days, but I can certainly see how someone with an addictive personality would prefer to take another dose, rather than  experience the actual withdrawal from the drug.

I am grateful that I realized what was going on, and that I do not have an addictive personality, and I have nothing but empathy for those who find themselves, innocently addicted to this drug. I now understand how Opioid Addiction has become an epidemic in this country.

Drugs, of any kind are a serious matter, and should only be used when needed, and as prescribed; not that that would have prevented my addicition, because if I had taken as prescribed, I would have taken much more oxycodone, than I did, and likely would have suffered more severe withdrawals.
Blessings and strength to those of you suffering with addicition; I empathize with you.

Thursday, March 22, 2018

Bosulif Difficulties

As you may know, I recently switched leukemia medications from Sprycel, to Bosulif. After six and a half, successful years on Sprycel, (with the exception of chronic and increasingly large pleural effusions), I hesitantly made the switch to Bosulif.

I started with 100 mg of Bosulif per day, pre-medicating with Zofran, and have slowly reached the ultimate goal of 400 mg of Bosulif, per day; I have yet to have a PCR test to see whether or not it is controlling my chronic mylogenous leukemia.

What I miss most about Sprycel, is the ease in which I was able to take it; I simply took my pill, right before I went to bed. No thoughts on whether or not I had pre-medicated with an anti-nausea medication, or if I had "eaten enough" food, to keep the nausea at bay.

Since I am most definitely NOT a morning person, and certainly not a big morning eater, I thought that it would be best to try and take the Bosulif with my largest meal, which is typically dinner. When I am home, that is not a difficult task, but I have often found myself, on the road, and eating at sporadic times, and if I have not taken the Zofran, an hour prior, then I am MISERABLE!

Apparently, I am not a structured eater, and I typically eat when I am hungry; which is usually a little bit here and there, throughout the day. I guess you could call me a grazer! lol This is not conducive to keeping nausea at bay, from the Bosulif. I cannot even imagine the difficulties of  fasting twice a day; I would NEVER get my medication down the hatch!

So thus far, I have found myself eating a much larger than I am used to dinner, taking the Bosulif and still feeling nauseated two hours later; I am then eating a bowl of cereal, a piece of toast or yogurt, which seem to help, and drinking ginger-ale. Add to that ginger, and peppermint Altoids; I also rub peppermint oil on my abdomen; talk about desperate! I am will to try anything.

So far, this has kept me from vomiting, but I hate going to bed feeling stuffed and miserable!

I am now rethinking the "when" I should take this life-saving medication, and am going to try to ingest it, earlier in the day. I just hate the thought of feeling miserable all day, and when I take it at night, at least I am able to sleep through most of the nausea.

Hopefully in time, this side effect will begin to lessen, and it won't be such an ordeal to get my daily dose, down the hatch. I am grateful that I have not had the diarrhea, that so many suffer, and wonder if it is because of the Zofran, which can cause constipation; maybe that side effect cancelled out the other!? Constipation vs Diarrhea; whatever the case, I am fortunate to only have one major pain in the gut, instead of two.

Today I shall try something new; pills earlier in the day; I will keep you posted and would love to hear what works for you!

Glad to be here, to enjoy another day!

Blessings to all of my CML warriors!

Thursday, March 8, 2018

Prescription and an X-Ray

I am pleased to announce that the prescription debacle has come to an end!

While Walgreen's and Optum Rx could not figure out how to fill my prescription for Odansetron/Zofran, an anti nausea medication, that I need to take prior to ingesting my new chronic mylogenous leukemia drug, Bosulif; St. Luke's Hospital Outpatient Pharmacy did!

My poor oncologist's nurse, Sara, has been such a trooper; faxing prescriptions here, there and everywhere! St. Luke's was a last ditch effort on my part, as I had high hopes of them knowing how to bill for this "insurance uncovered" medication, as I knew they often filled prescriptions for many outpatient, cancer patients. I put all my faith in them.

Off Sprycel 4 months
Yesterday they called with good news, bad news scenario; the bad news was that there was NO WAY insurance would cover this medication. The good news??? That they could fill the prescription for $16.32!!! This, in my book was a total WIN!!! The other pharmacies wanted between $160.00 - $200.00; what the heck? Isn't that just crazy? Needless to say, I went and promptly picked up my medication, with many thanks!

Goes to show you, that persistence DOES pay off!

Second on the agenda; a chest x-ray. As you all probably know, I recently switched my TKI medication from Sprycel, to Bosulif, following several years of significant pleural effusions.

Typical Effusion on Sprycel
I have now been off of Sprycel for four months and one week; long enough, one might think, for the effusion to be completely gone. Since I have been home, I noticed that I am still short of breath when going up and down stairs, and since I read, and freak myself out, that it is "Possible" for some people on Bosulif to have pleural effusions, especially after having chronic pleural effusions on Sprycel, my physician and I though it prudent to get a chest xray; just for "good measure."

This way, if nothing else, we have a baseline.

I am happy to report that while I still have "some" fluid in my left lung, it is greatly reduced from my previous x-rays; this is outstanding news and has me smiling, ear to ear!
See how quickly my mood can change??

Off to the grands tomorrow! I am SO excited!!

Be well, my CML warriors!

Tuesday, March 6, 2018

Disgusted CML Day!

Most days are good; I cruise through them with little thought of chronic mylogenous leukemia.
The past few months, this has not been the case. Starting with the complications from my rotator cuff surgery, due to chronic pleural effusions, and the switch to a new CML medication, Bosulif, to hopefully alleviate my pleural effusions.

I have found Bosulif to have few side effects thus far, with the exception of nausea and vomiting; this has been controlled by pre-medicating with Zofran/Ondansetron. I started this medication while in southern California, visiting family, and was able to fill the prescription of Zofran, with prior authorization, at Walgreen's, with no problem.

I am home now, in Boise, Idaho and it has become a problem. Three days and about six hours on the phone, worth of "problem",  headache, frustration and aggravation, along with fear. It seems that Walgreen's is unable to run the prescription through my insurance, the same way that they did in California; why? I do not know!

They then transferred it to the mail order pharmacy, where I get my VERY expensive leukemia medications from, and they, too cannot "mail" it, and bill it through my insurance.

I have now called the local pharmacy, in the hospital, in high hopes of them being able to bill my insurance, for this medication. I have four more pills, and have been cutting them in half, to hopefully "survive" the next few days.

What I have noticed, since cutting them in half, is that for the first time since starting Bosulif, I now have the infamous diarrhea, to go along with the nausea. Yay!

And another thing that I have noticed, is shortness of breath, going up our stairs; now this could be residual pleural effusion from my Sprycel days, which I pray will be the reason, or it "could" be from the Bosulif; my oncologist says, "No", but the package insert says "Possible".
So needless to say, I am pretty disgusted, and even a bit fearful; what happens if the Bosulif causes pleural effusion, too? UGH!

I guess every now and then, a good dose of reality, really does make you stop and think, that I really and truly, do still have cancer.

This coupled with a few recent CML deaths, and major complications remind me to get out there and enjoy my life!

We are headed to Arizona, to watch the four grands, while Mom and Dad go to Hawaii, on Friday; I plan to soak in, every single moment!

Thursday, March 1, 2018

Medication Change; From Sprycel to Bosulif

Missing the pre-teenager!!
For those of you that have followed my journey, for the past seven years, you already know that I have been on Sprycel, the entire time. My doses have changed, and my scheduled had been altered, all in order to determine the best possible control of my leukemia, with the least amount of side effects.

In the beginning, I had many side effects from Sprycel, that varied from bottle to bottle; I learned early on to monitor my side effects, and to record the lot number on the bottle. When I had a month that I felt particularly well, I would ask for the same Lot number, from the previous month. This allowed me to actually have a better quality of life, as time went on, than in the beginning.

I believe that over time, my body adjusted to the Sprycel, and after five years, my PCR finally remained below the  optimal, .0something threshold. Oddly enough, once I had reached this desired "goal" I began to have large, persistent pleural effusions, which I eventually, reluctantly agreed to have drained.

Upon having my first thoracentesis, I realized two things; one, that once the fluid was removed, I could breathe much better; and two, the actual procedure was not nearly as big a deal as I had anticipated. I decided then, that having a thoracentesis three to four times a year was preferable to changing leukemia meds, at this point.

I was pretty dead set against making a change in my medication because; A. It was working so well to control my leukemia, and B. Other than the pleural effusions, I felt pretty darn good!

The thought of "starting over" with the unknown was scary; it had taken me a long time to reach a desirable PCR result, and to feel good. I suppose that I had the mentality of "Leave well enough alone," or "Don't fix what is not broken."

The problem was, the pleural effusions became quite the nuisance! They began to return quicker and quicker, and what in the past I was able to resolve with a short medication interruption, now required a thoracentesis, and even those were getting closer and closer together.

The tipping point came when I had to have rotator cuff surgery; I had a thoracentesis performed a week prior to the surgery, removing 1.7 liters of fluid, in order to prepare for the surgery. The other shoe fell, when two days prior to the surgery I was told that I wouldn't be cleared for surgery, until I had ANOTHER thoracentesis.

I was like, "Seriously?" I just had this done last week! "Yes, seriously!" So, you can imagine my surprise when they removed ANOTHER 1.3 liters of fluid; apparently the fluid is rebuilding at a rapid rate, OR I really do have a trapped lung, which can result from chronic pleural effusions. UGH! Something to consider, further down the road.

On the morning of the surgery, they X-Rayed my lung, and there was still fluid; they proceeded with caution and I ended up in the hospital for three days, due to low oxygen saturation; I was also sent home on oxygen. This was a real eye opener.

I was only supposed to be off of Sprycel for a few days, but that quickly turned into three weeks. During that time, I seriously considered my options; I could continue with Sprycel and have a pleuradesis, to prevent the pleural effusions (a nasty surgery where they cause to lung to attach to the pleural sac) or I could try Bosulif, first.

It was a BIG decision, for me.

I was terrified of the side effects that people seem to have on Bosulif, particularly the massive diarrhea; you see, we were going to be traveling for the next two and a half months, by car; long road trips, with no bathrooms in sight! lol

Eventually, I convinced myself to give it a shot, while still at home; what did I have to lose? I could always go back to the familiar, if it didn't work, or I couldn't tolerate it. My oncologist recommended that I start with 100 mg a day, and slowly build up to 400 mg, per day, which seemed like the best choice, for a chicken like me! If you could have seen me take my first pill, you would have laughed! I could barely choke down the little sucker! I was terrified of what might happen!

When I realized that I wasn't going to have an allergic reaction, or heart attack, I settled in to a wait and see mode.

After an hour or two, I had some abdominal cramping, but no diarrhea! Phew! What a relief! I was nauseous and did develop a headache, but nothing too terrible. I continued onward, with 100mg, for one week; I did continue to pre-medicate for nausea, as that seems to be more my "MO" than the diarrhea.

By this time, I found myself cautiously, optimistic, and I began to take 200 mg per day; pre-medicating for nausea and with a BIG meal! Dinner. The increase didn't seem to affect me, any more than the starting dose. Whoo Hoo! Once again, cautiously optimistic!

By this time, I had also started physical therapy for my arm, and felt generally crappy, so any side effects from Bosulif were likely masked. After my first full week of 200 mg of Bosulif, I began to notice swelling in my right breast. Doesn't it just figure, nothing is ever easy!?

The swelling worsened to the point of pain; I attributed it to the Bosulif and the immobility of my right arm; both the surgeon, and my oncologist said, "Nah, couldn't be that!" My internal medicine gal ordered a diagnostic mammogram, and the physical therapist and I agreed, that it was probably the combo of the drug, and the immobility.

It was a Stranger Things kind of Christmas!
At this point, we were in Arizona, at my son's for early Christmas; I decided to stop taking the Bosulif to see if the swelling would go down; ten days later, it was gone; so I started back on 100 mg, of Bosulif. By this time, we were at my daughter's. I took my pill and shortly felt miserable; the nausea became so great, that it eventually led to vomiting, which isn't a good thing, as I typically pass out, when I vomit. I was wicked sick, the entire night, and totally depressed!

Since it was six days before Christmas, and my eating schedule was all over the place, I decided to cease taking this drug; one more time. Bosulif and I were off to a rough start; I needed to get through the holiday, and then I was going to give it one more valiant try; I had high hopes of it being my next life saving medication, and wasn't ready to give up on it yet!

The day after Christmas, I pre-medicated for nausea, ate a HUGE dinner and started 100 mg of Bosulif, one more time; there was nausea, but no vomiting, and my body quickly seemed to adjust to the Bosulif, on its' third go. After only six days, I increased to 200 mg per day.

By this time, I was concerned about my PCR, as I had had many breaks from Boslulif, as well as a long break from Sprycel, before I switched to Bosulif. I was seeing my oncologist in January, so I figured that I might as well,  just stay on the 200 mg, and see where I was at, and after the PCR was drawn.

My previous PCR was .042: I was prepared for an increase, and hoped it would not be too high!
My "guess" was .9something, and I was correct; .962. While I had hoped it would not be that high, I had expected that it would, and I was grateful it was not a full 1%. Needless to say, I started taking 300 mg of Bosulif, as soon as I received the results. There has been no more swelling, since my arm has been out of the sling, and moving, (guess the physical therapists and I were right on that one!) and with pre-medication with Zofran, and eating a larger than I like dinner, I am tolerating the Bosulif well.

I feel great during the day, and only slightly nauseous at night. Along with a large meal and Zofran, I am eating ginger slices and peppermint Altoids, and rubbing peppermint oil on my stomach, to help combat the nausea!  I will do whatever it takes and I pray that I will adjust to this new drug quickly.

Within ten days of the 300mg dose, I upped it to the desired 400 mg; thus far, I seem to be tolerating it quite well, and hope to eventually be able to cut-out the Zofran. I do not know when I will be brave enough to give that a try, but maybe if there ever is a week without nausea, after taking the Bosulif, I will give it a shot.

I pray that my labs will all be great, and that my pleural effusion will evetually resolve on its' own. I have to tell you, that even though I feel like I have tons more energy, and have been able to do things I would not have been able to do with a large effusion; there is still one there. My oncologist says that it can take quite some time to completely disappear; but I have to admit that I am a surprised, and disappointed, that it is not gone. I have been off of Sprycel for four months, which seems like ample time for it to resolve, but I imagine that I will just have to be patient, for a little longer.

The thought of having a "trapped"lung, still niggles in the back of my brain, but thus far, I have been able to squash those thoughts, back into a small little corner, of my brain. I will keep on keeping on, and when this arm is fully recovered, I hope to get back to dancing; that will be the true test!

So, all in all, my switch to Bosulif, despite the rocky start, has been a good one. Now the final determining factor will be revealed with my next PCR result. While I do not expect miracles, I do expect and hope for a decrease in the BCR/ABL, as opposed to an increase.

Until then, I will keep on, keeping on, and continue to Dance and Travel My Way Through Leukemia!

For those of you that know me; this was a BIG DEAL!

Bricks for the Brave!!