Thursday, May 25, 2017

Double Check the Pharmacist

Yesterday while on the phone with Briova/Optum Rx, ordering my next month's supply of Sprycel, the gal on the phone asked the same questions she always asks; one of them being, "Did you skip any doses of your medications, due to side effects?"

I told her that yes, I had; due to pleural effusion. She told me that I needed to speak with the pharmacist before they could ship my medication. I figured I was more aware of the side effects of Sprycel than she was, but figured that maybe at least my side effects might get reported, so I thought that I might as well get the most bang, for my buck and give her the full gamut of side effects.

I told her about the pleural effusion, and her response was, "Really?" response was, "YES! REALLY! It is a common side effect in CML patients." I told her of the muscle aches, nerve and joint pain, headaches and chronic fatigue, too. Once again her response, "Ohhhh, really?" "Yeah, DUH!"

At that point I decided to tell her about my findings that different Lot numbers seemed to deliver different side effects, and she got all excited! She said "Yes!! I remember hearing something about that; can't be sure it was regarding Sprycel, but I DO remember hearing something about that!"
Now, I am thinking, "REALLY?? Aren't YOU the one that spent many years in school learning about drugs, and their affect on the human body?" UGH!

I then asked her if she was going to be reporting these side effects to the drug manufacturer, in hopes of enough complaints resulting in a lesser, acceptable, "margin of allowances" during manufacturing. There apparently is a specified percentage, during manufacturing, that the ingredients, in a medication, must fall between; so a little more of this, or that, or a little less of this or that, and the drug is still within these parameters and therefore acceptable. I believe that this is the difference between a good side effect month, and a bad one.

Any way, I though that while I had her on the line that I would ask her about the drug interaction between Zolpidem (Ambien) and Dasatinib (Sprycel). I recently asked my doctor for a sleeping pill, so that I could sleep on our red eye flight from Los Angeles to Paris. Being that I have never taken a sleeping pill before, and the fact that I am a total Pill freak; meaning I am afraid to take ANYTHING, I asked her for six pills, so that I could try it out at home to see how it affected me, prior to getting on the plane. I have now had these pills for six weeks, and have yet to take one! lol

My plan was to ask my oncologist if it was safe to take with Sprycel, as I take Sprycel right before I go to bed. But since I had the "expert" on the line, I asked her. She said, "Let me look, nope, no interaction. Let me check one more source; Nope, go ahead and take it, there is no interaction between the two."

Of course, I did not take the pill last night, and some random ad popped up today on my FB about some random drug, and I clicked on it. It had a place to put in Drug Interactions, so I did. And what do you think I found?

A "Moderate" interaction between Sprycel and Ambien!! I was so disgusted that I decided to write about it!

Interactions between your selected drugs
zolpidem  dasatinib
Applies to: zolpidem, Sprycel (dasatinib)
Dasatinib may increase the blood levels and effects of zolpidem. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. Contact your doctor if your condition changes or you experience increased side effects. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

I mean really! I find information about drug interactions through Google, and get different information from an actual Pharmacist! WTH??

Once again, watch out for yourself! Be careful and do your due diligence. I am sure that the interaction is probably not serious, but what if it was?

I will be contacting my oncologist prior to taking the Zolpidem/Ambien, always do my own research and continue to ask LOTS of questions!

Here is a great place to check drug interactions:

Any one have experience with sleeping pills?

Tuesday, May 23, 2017

Two Week Sprycel Vacation and the Return....Life!

It wasn't until the second week of my Sprycel vacation that my "old" self started to return. I was still coughing like a banshee, but DAMN I felt GOOD!!

The old "giddy",  happy-go-lucky, feel good inside, "me",  began to emerge from that place; deep down inside, where it sleeps, when I am on Sprycel.

I do not know where it goes, or why it disappears; it just does.

I started actually sleeping at night; what a TREAT! OMG, I totally forgot what it felt like to "sleep"! Every morning I marveled at how rested I felt, yet I hated that I could not take advantage because of my constant coughing. My mind was clearer, my hands and arms did not go numb during the night, my whole being was rested, and I had JOY pouring out of my body and soul. What a treat.

I would literally break out in a jig, for no reason at all; I didn't even care that I had to take ten minutes to recover from a coughing attack. I walked around with a smile on my face, and I enjoyed every single minute.

But like many good things, it came to an abrupt end. After two weeks, I started taking Sprycel again. My arms went back to being painful, dead arms at night, which contribute to my lack of sleep, the grey cloud returned and dampened my joy, and the veil of brain fog returned. It is crazy how one little pill can affect so many things. But hey,  on the upside, I was back on the battle field; slaying leukemia!

These past three months have been a harsh reminder of how a certain "Lot" of medication can make or break how you feel. My "HH" Lot numbers have SUCKED! It seems as though the most affected area have been my hands and arms; they go into this painful, numb state, during the night, while I attempt to sleep.

It is frustrating, annoying and down right inconvenient. Remembering what it was like to sleep at night, during my break was sheer bliss. I wish that the drug manufacturers could be more consistent in their production of these powerful drugs, and were able to alleviate more of the side effects which come along, with taking them.

I retain my stance that last year was my best year ever! If I could only go back to that run of Lot numbers, I would be ever thankful. In an attempt to find the golden stash of Sprycel, I did request that my Sprycel order come from a different warehouse this month, and I took the first pill from the new bottle, two nights ago; it seems as though my arm issues were a bit better the past two nights, so I am hopeful that will continue to improve. Of course, I did wake up with mouth sores and the start of a "cold sore" on my lip! HAHAHa, so I started the Acyclovir this morning!

Com si com sa.

Chronic Mylogenous Leukemia certainly keep one guessing.............

Tuesday, May 16, 2017

Meeting the Cardiothoracic Surgeon

Off to the surgeon!
I was quite fortunate to secure an appointment with the top cardio-thoracic surgeon, here in Boise, in a timely manner. Which is a great thing, as I am not a very patient, patient!

On our way to meet with him, I literally made myself ill! I was a bit dizzy in the head (more than usual), nauseous, heart pounding and shaky. I kept telling myself to breathe, and that I was just freaking myself out. Which my brain knew, but my body could not comprehend.

That is what I get for actually "thinking" about what "might" happen, as opposed to taking my typical approach to things; denial!

I guess I did not realize just how terrified I actually was until I started going over my list of questions for the surgeon. I quickly popped a meclazine into my mouth, and swallowed; I did not wish to throw

I thought it prudent to be prepared, but did not expect that it would affect me so greatly.

At any rate, I can thank the promptness of my medical experiences here, for not allowing me further time to freak out! As soon as I checked in, I was called back to the examining area, which means weight, blood pressure, how are you feeling, do you have.....etc.

This focused my brain to the present and calmed me down to some degree. Being that I have been dealing with these effusions, and cough, I have been to do doctors' office way more frequently than I have in years. This is NOT fun, to me!

I hate answering all of those questions because to be frank, I do not have a good answer for any of them. There is no yes or no for me, it is almost always "sometimes" and this sometimes is typically medication related. Sprycel is the reason for all of the sometimes answers such as do you have joint or muscle pain, back pain, shortness of breath, weight gain, weight loss, sleeplessness, changes in eyesight, etc, etc, you know the drill.....and it sucks, but that is the life of a person with chronic cancer; there is no good answer.

All of these answers are supposed to help the doctor determine your "health", but when these side effects are medication related, they do not present a clear picture. The only medications that I take on a regular basis are Sprycel and Levothyrozine (for thyroid, thanks to Sprycel), but my list of "as needed" is quite extensive, even though I only use these other medications when I am desperate. I am not a fan of taking drugs. Despite the fact that I have cancer, I am otherwise healthy.

Sorry for the left turn, back to the real reason I am here. Dr. Schoolfield comes in and turns his monitor to face me. He then starts showing  me my scan. I have to stop him and say, "Do I have a rind, or not?" lol He laughs and says, "No, I do not believe that you do."

CT Scan Images are fascinating!
With a sigh of relief, I am now able to focus on everything else that he has to say. He believes that I do not have a rind because when I was lying down for the CT Scan, the fluid in my pleural space was free flowing; meaning that it surrounded the lung and my lung was able to expand, to some degree. He feels that at this point, it is still able to expand, and that over time, it will.

He also believes that if I am to remain on Sprycel, that I should consider a pleuradesis to hopefully eliminate the area, in which the fluid currently collects. He explained the procedure where a sterile talc is put into the pleural space, after all of the fluid is surgically removed; this talc causes an irritation, which in turn causes scarring and adhesion of the lung, to the pleural sac, thus eliminating the possibility of fluid build up. Sounds like fun, huh?

He said that he believes there is a high probability that this would solve my pleural effusion issues, and I could remain on the drug that is currently controlling my chronic mylogenous leukemia. I did ask him what the likelihood of the effusion moving from my left lung to my right, or to the sac around my heart, and he said that "statistically" speaking he didn't believe that it would.

I also asked him the downside to the procedure and he said that there is a small chance that the adhesion's would not be perfectly consistent and that "pockets" could occur, allowing fluid to build up in those pockets, which would make it more difficult to remove, as the fluid would not be pooled, all in one area.

The one other thing to consider here, is that there may already be a lack of elasticity in my lung, which may prevent it from ever fully re-inflating again. This would not make me happy; but I would deal, and adjust.

He hopes that the fact that there was a rapid accumulation of fluid after the last thoracentesis, was possibly due to the fact that I had such a bad cough, that I was not able to be as active as I would have otherwise been, which may have prevented my lung from re-inflating like it should/could have.

All that being said, the current plan is to have an x-ray, the week before our trip, and if there is a large amount of fluid, to have a thoracentesis before I go. Lower my dose of Sprycel while I am gone, and to re-asses the situation when I get back.

I am currently leaning towards trying Bosulif before going the surgery route.

On a side note, we will be repeating the CT scan in three months to monitor the stupid nodules that appeared on my right lung; these suckers, for right now will not even enter my mind. I have already vanished them from my next scan!

Next up; leaving for Europe in two-ish weeks!

Bricks for the Brave!!