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!

Friday, May 12, 2017

CT Scan and Update

Well, the CT Scan report is a bit interesting; it does note the pleural effusion, which we expected, with an associated atelecatesis; I am not entirely certain what this means, other than there is a partial collapse of my left lung.

It does not say specifically that there is a rind present, so I am going to assume at this point, that there is not; this would be a great news.

Of course the pulmonologist is out of town, so I cannot confirm what I am reading in the report,  but  it seems as though I can never do anything the easy way;something showed up on my right lung;

"New 13 x 20 x 16 mm part solid nodule in the right upper lobe, predominantly groundglass with approximately 5 mm solid component (series 3, images 80 and 83 and series 6, image 40). Similar part solid, predominantly groundglass nodule in the right lower lobe more inferiorly (series 3, image 109), with mild solid components along its superior aspect."

At this point, I am not going to stress too much about these nodules, as I had another one in my right lung last year, that did resolve on its' own. It was what they call a "spiculated" nodule which I believe to be more concerning than a "groundglass" nodule.

So until next week, when I see the surgeon, I will continue to pretend that all is well. This will be much easier to do now that my cough has finally ceased.

I do not know why, as I know I still have fluid in the left lung, but I am SO grateful for the reprieve!
It is funny how when you are in the middle of a cycle, whether it is coughing, nerve pain, bone pain, nausea, or whatever side effect seems to be rearing its' ugly head during a certain period of time, it becomes your "norm", you just deal with it and carry on. You don't quite remember what it was like when you weren't dealing with the side effect and you can't necessarily see the light at the end of the tunnel.

It can make you weary, and some days you just feel like crying.

And then, just when you are at the end of your rope, you often turn the corner. You think to yourself, is my coughing better? do my feet actually hurt a bit less? is my bone pain not quite as bad as it was yesterday? and you realize that you are on an upswing.

I thank God for these upswings and I have empathy for those that do not experience them as often as I do. I know this last bout with my coughing and effusions was a long haul; I coughed from December until May and was tired and disgusted, and just when I felt there was no end in sight, the coughing ceased.

I suppose that I will never really know why, but I shall not question my good fortune!
I will still be dealing with my chronic pleural effusion when I get back from our trip, but for now, I am optimistically anticipating a fabulous month in Europe, cough free!

I know that I can deal with the shortness of breath, as I am a pro in that department, so that is of little concern.

My last PCR result was .062, so we are going to lower my dose of Sprycel during our trip and see what the numbers tell us when I get back. I am just going to have to trust that all will be well.

Keeping fingers crossed for a favorable appointment with the surgeon. So stay tuned......

Friday, May 5, 2017

Visit to the Pulmonologist: Some Interesting Lung Facts

This is my second visit to Dr. Fonseca, a pulmonologist. The first was after a spiculated nodule was seen on a CT Scan over a year ago; that nodule disappeared three months down the road.

This visit is to discuss my persistent pleural effusion which is a side effect of the medication Sprycel, that I take to control my chronic mylogenous leukemia. I have recently had two thoracentesis; seven weeks apart. The first resulted in removal of 1.8 leters of fluid, and the second one removed 1.5 liters of fluid from my left lung.

The reason for this visit, is that despite just having all of that fluid removed, it is has returned returned, just one week down the road.

For the first time, I have a clearer understanding "why" this may be happening. Of course, we know that Sprycel is a main contributor, but I have been off of Sprycel for a one week period, during this time; so this is not likely the cause.

The doctor explained to me, that your lung is inside a sac, the pleural sac, and between your lung and this sac is fluid. This fluid is continually refreshing itself through valve-like mechanisms in your pleural sac; kind of like intake and outtake valves; in with the new, out with the old. This fluid acts like a lubricant between your lung and the pleural sac.

So, here is one scenario that could be the cause for pleural effusion; Sprycel messes with the actual mechanics of the valve; leaving it on the on position too long, or keeping the "out" valve from releasing the fluid.

Here is the second scenario, and more likely my personal issue. Since I have had this fluid build up, off and on during the past five years, (possibly due to the valve theory) my left lung has been scrunched up inside of the pleural sac. Because I was so adept at adapting, I never realized how scrunched up, and for what length of time,  my lung was actually scrunched up there.

It is possible that during the time it was/is all scrunched up, that a fibrous coating of material has
formed on my lower lung, preventing it from fully inflating, even when the fluid is removed. My understanding is that something, must always fill that pleural space, and if the lung does not drop back into that space by re-inflating, when the fluid is removed, then the fluid will build back up, in order to fill the space.

You follow me so far?

Of course, the next question is, what do they do if this is the case? The answer, unfortunately does not sound fun; the doctor refers to this fibrous material as a "rind" and in order to "fix" the problem, surgery is required to "peel" the "rind" from the bottom of the lung; thus allowing it to fully re-inflate.
The doctor and I also discussed the possibility of have a pleuradesis performed "if" I have to have surgery to remove the peel. This is a procedure that would be done at the same time and involves irritating the outside of the lung either manually, by "scratching" the surface, or by putting in a talc to cause irritation.

The goal of this procedure is to cause the lung to form scar tissue and adhere to the pleural sac, thus eliminating the void where the fluid collects.

My questions are that if the fluid cannot go into the left pleural space, will it them collect in the right pleural space, or the sac around my heart; the pulmonologist said, "Not necessarily." However, this is something I will discuss with my oncologist, as it does concern me.

He said that I should seriously consider this as a viable option, as we know that Sprycel does work in controlling my CML, while allowing me a decent quality of life, with the exception of the pleural effusion; if the procedure was successful, I could carry on with Sprycel, without skipping a beat, if this side effect could be resolved through this surgery.

All food for thought. Fear of the unknown and elimination of something that I know works in controlling my CML, all play into my thought process. The "What ifs?" will be coming out in full force and there is much to consider.

None of this will be resolved prior to my trip, but I hope to have a clear picture of what I am going to be facing when I return.

Now, I am off for a CT Scan, with a referral to a pulmonary surgeon.

And the beat goes on!

Wednesday, May 3, 2017

Two Thoracentesis and MORE Fluid!

A few days after the latest thoracentesis, with 1.5 liters of fluid removed, I am still coughing like a mad-woman. It is exhausting and it is the weekend. So what do I do?

I decide that maybe I should start taking a more proactive approach to this cough, and start using my Advair and Allbuterol every twelve and four hours respectively, and see if I cannot knock this cough to the curb; I even tried Mucinex; all to no avail.

And if the cough is not aggravating enough, it seems as though luck has decided to aid in the development of thrush in my mouth, too. Of course, being that  Advair is  a corticosteriod, and a side effect of using it frequently, is a fungal infection in your mouth, I have no doubt that this is likely the cause. I tried to offset this side effect by rinsing my mouth after use, eating yogurt and taking a pro-biotic, but it did not work.

But get this! I have another crazy theory. The thrush did not appear on my tongue, until my husband started making a sour dough starter on the hearth of our fireplace, which would logically put more yeast into the air, right?  And with more yeast in the air, would it make any sense that that would contribute to the yeast infection on my tongue? We talked about it and realized that I have been using Advair, on and off during the past six years and that this is the very first time I ever developed thrush, in my mouth. All interesting nuggets of information.

Soooo, he threw the starter away and within two days, my mouth was halfway healed; co-incidence?? I don't know, but definitely interesting., and worth mentioning.

At any rate, Monday rolled around, and  since I was still coughing and had a half-crappy tongue,  I talked to my most awesome doctor, here in Boise, and she prescribed Nystatin, for my tongue,  and a chest x-ray, "just for fun", for my cough.  I have had a sneaky suspicion that there is more fluid in my pleural sac,  as my cough has gotten worse, and I have been short of breath going up stairs, despite the latest throracentesis.

Since it has been less than a week since my last thoracentesis, and I have been on a Sprycel break, I am not a happy camper! What the @#$% is going on now?? It just doesn't make any sense that I should have MORE fluid!

At any rate, we head to town, pick up the prescription, and go to the Imaging Center, for ANOTHER x-ray ; after the gal takes the x-ray, I take a look, and what my untrained eye tells me is that I have a fairly large pleural effusion in my left pleural sac; AGAIN!

After talking to my doctor, she confirms my suspicions and recommends that I see the pulmonologist to get his take on the situation. The fact that the fluid just keeps returning, despite being off of Sprycel, and having it removed, is not only frustrating, but concerning as well. Getting to the bottom of this, before we leave for Europe, is essential.

Fortunately for me, the pulmonologist has an opening in two the saga continues!

Maybe my next update will hold the Golden Key, and I will have some answers soon.

Bricks for the Brave!!