Wednesday, December 4, 2013

Sprycel and Musculoskeletal Pain

I swear the road that we must travel when living with chronic mylogenous leukemia is often a bumpy ride. It seems as though I just got my pleural effusion episode under control, and now I am facing another new Sprycel challenge.

I do believe that the level of Sprycel absorption, due to the taking it with Bragg’s Vinegar, has caused my symptoms to become exasperated. While this is a great thing for my PCR, it is not such a great thing for my side effects. My last PCR, in April was negative. At that time, I developed pleural effusion and was forced to take a three week Sprycel vacation. The PE resolved on its’ own, my Sprycel dosage was lowered and it has not returned.

This is all good news, right? Well, yes and no…….yes, because the PE has not returned, no because I am now plagued with muscle spasms and musculoskeletal pain. This began gradually after resuming 100 mg of Sprycel, 7 days a week. At first it was just random back spasms, these were managed with Voltaren Gel, occasional Baclofen (10mg), and wearing a back support.

As the weeks went by, the spasms became more frequent and I began to experience pain up my spine and in my hips. This pain continued to radiate to my ribs and my back pain became so severe that I could not bend forward, at all. It was becoming extremely difficult to get dressed; especially putting on my shoes! I was, however, able to continue to dance, a bit, as long as there were no ducks and the music was not too fast! Lol It really was hysterical, I would dance and then hobble off of the dance floor; adrenaline, and doing something you love, are certainly Godsends!

After nearly four weeks of continual, increasing pain, I had had enough. I really began to wonder whether or not Sprycel was the true culprit of my pain, or if there was some other cause. Saturday night, I made the conscious decision to refrain from taking my nightly dose of Sprycel. This is a BIG deal for me; I NEVER miss a dose unless I have some sort of “lung” issue that forces me to take a Sprycel vacation. So, to simply skip a dose, is totally out of character, for me; but I was in so much pain that I could not help myself.

I went to bed feeling a bit guilty, in some ways hoping it WAS the Sprycel and in other ways, hoping that it was not. I awoke the next morning and stretched; the first thing that I noticed was that I did not experience the sharp pain in my back, which I had become so accustomed to. I cautiously got out bed and “thought” I felt better; as the day went on, I definitely was in less pain, yet still not convinced; so I decided to skip one more night of medication, and to email my doctor, letting him know what I was doing.

His initial response was that he did not think that it was Sprycel caused, but to continue with my experiment and to keep him informed; he thought that it was a good plan. Day two I was in even less pain and was able to begin to bend forward again, I decided to go for broke and skipped the Sprycel for a third day, in a row, promising myself that no matter what, I would resume the Sprycel, on day four.

On my third vacation day I was literally jumping for joy! I was absolutely giddy and my pain level had decreased by at least 90%; I told my husband to look out on the dance floor that night, because I was feeling GOOD! Not only pain wise, but energy wise, too. We literally danced from 5 pm until almost midnight last night, and today I am still walking; despite resuming Sprycel.

Yesterday was one great day, it was even better than Christmas! I cannot remember the last time that I felt that good; today is going to be bitter sweet, I must return to the battle and hope to conquer this new challenge. I will relish and remember yesterday and hope that the pain will return slowly and not just hit me, all at once.

Conclusion: Sprycel is the cause of my musculoskeletal pain.  I will be discussing this further with my oncologist during my December appointment.  My theory is that I am going to be negative PCR, and will be able to remain there, on a lower dose of Sprycel.


Until then, I shall continue to manage my pain and keep my fingers crossed.

Thursday, November 21, 2013

Mental Mind Meld; A Positive Outlook is a Must!

Do you think that our mental health and emotions create challenges that relate to our condition? I know that I do; I truly believe that an optimistic frame of mind helps our mental health, which in turn helps our bodies to heal. We have all heard the old adage; look better, feel better, right? I believe that that is also; very true.

Think about it, if you look in the mirror and see a bedraggled image looking back at you, you are likely to feel like a bucket of crap; but if you run a brush through your hair and across your teeth, wash your face and put on a smile, you are bound to feel better. Better about yourself because it now appears that you actually care about yourself.

If you do not even bother to attempt to “look” better, then you really are telling yourself that you are simply not worth the effort. And if you are not worth the effort then how in the world is your body going to heal?

And shall we talk about a positive attitude? I have always said that there are two types of people; the ones with a great attitude and the ones with a chip on their shoulder; or should I say, a “boulder on their shoulder”! Imagine them both on the side of the road; with a flat tire. The person with a good attitude gets out of their car, shrugs their shoulders, laughs a bit because they have never changed a tire before, and grabs the jack. Before long, they are back on the road with a story to tell. They are now expert tire changers; they know their friends will be impressed!

The person with the bad attitude gets out of their car, slams their fist into the hood, and kicks the tire. They hobble around, grab the jack and rise up their car. They are so angry that when they remove the lug nuts, they carelessly throw them on the ground; one will never be found. Eventually they replace the tire, with the spare and get back into the car; at this point, they realize that in their rage, the result of kicking the tire is a broken foot; now they can add a trip to the emergency room to their troubles.

Of course, the four lug nuts did not hold and the spare tire went rolling down the road; they were back at square one, plus a few; hence, a bad attitude has a way of allowing a “worst case scenario” to jump in and take the reins! Had they simply changed the tire, they could have avoided a broken foot, a screwed up wheel and tire, and a whole lot of frustration and rage.

I truly believe that optimism lowers our blood pressure and that pessimism raises it; this is a good enough reason to have a positive outlook on life. When coupled with quality of life; optimism wins, hands down.
I believe that we must have faith that we will win our battles with whatever condition that we face, and if we allow ourselves to be brought down by our condition instead, then our condition will gladly take over, and pull us into the abyss.

We must remain hopeful, cheerful and brave. We must continue to have a positive attitude and believe that we are winners; for if we do not believe that we are winners, our battles are already lost.

Here is to great mental health and a positive outlook on life!

Wednesday, November 20, 2013

I Still Remember…

Today’s WEGO Health Challenge is to write a post that begins; “I still remember” regarding our illness. This is an easy task for me as there are two moments that I will never forget. The first moment was the phone call from my doctor; he said “Michele, I do not know how to tell you this, but you need to go straight to the emergency room: you have Leukemia. I am so sorry.”

Needless to say, I was dumbfounded; utterly and completely dumbfounded. My very first thought was “What IS Leukemia?” and then, “How do I tell everyone?”  Somewhere between those two thoughts I wondered how long I had to live. I truly believe that shock is a blessing in disguise and the fact that I was able to process all of these thoughts, without becoming hysterical, was truly miraculous.

I still remember where I was standing, what I was wearing and what I was doing; I still remember the sound of my doctor’s voice and the expression on my face. I remember walking to my mother’s bedroom and asking her where my father was; I remember the look on her face when I told her the news. I remember my father driving me to the hospital and walking up to the receptionist’s desk and saying, “I am Michele Rasmussen and Dr. Han is expecting me; I have Leukemia.”

I still remember the sounds and smells of the emergency room and the first time that I laid eyes upon my new oncologist. I still remember everything about my hospital stay, every procedure and moment that I was there. I remember the phone calls and support and the fact that I was finally told that there is a really great chance, that I would still live a long life.

I still remember being scared, sad, mad and confused and I remember finally accepting the fact that I would live the rest of my life with cancer.

And then the most important thing that I still remember is the result of my first negative PCR test; it is the golden ticket, and after two and a half years, I had one in my hand! I do not know whether or not I will be able to hold on to that golden ticket or not, but I do know that I got it once and I have plans, to receive many more.

So for now, I still remember the feeling of pure giddiness that comes along with, a negative PCR!


What do you remember?

Tuesday, November 19, 2013

Top Three Tuesday; What Would You Tell a Caregiver

Having cancer is one thing; being the caregiver is another. Both roles can be extremely difficult and there is no set in stone formula for either person. As the person with cancer, I try really hard not to be too needy and to only ask for help when I really need it. I try not to complain and make it very clear that when I do; I am usually just speaking out loud; not expecting my caregiver to come up with a magical remedy.

That being said, I think the very best caregivers are the ones that do not hover; they continue to live their lives’ and continue to treat you just like they did prior to your diagnosis, with one exception; they are aware of your condition and accept that you may now have limitations, and may not always be able to do everything, like you used to.

In a perfect world, they would know when you really needed help, and when to stand back. Often, it is the smallest, little things that make the biggest difference; like laundry you did not have to wash, or dinner that you did not have to make. A hot cup of tea and a foot rub is also always appreciated, but sometimes all we really need to get us through the day is a great, big hug.

One of the most important things that a caregiver needs to know, is that it is often really difficult for us, to ask for help, it is difficult for us to accept the fact that our lives’ have drastically changed and we can no longer do the same things, in the same manner that we used to; and we, as cancer victims hate that, and hate that we become a burden; and we, as the patient, must understand that our cancer affects them, too.

I mean let’s face it; how would we feel being the caregiver? Having to watch our loved ones suffer and battle their disease; I often think that their role may even be more difficult than ours. So maybe we should ask ourselves; “What would we do as a caregiver?”

Things a Caregiver May Consider Doing

  1. Offer to run errands; such as picking up prescriptions or groceries.
  2. Offer to take a person to a doctor’s appointment; sometimes the wait is long and this creates a perfect visiting opportunity; quality time is precious.
  3. Offer to walk their dog.
  4. Do a once a month house clean; top to bottom.
  5. Make a pot of soup and freeze in small batches for easy, quick meals.
  6. Offer to help set up recurring bills on automatic payment schedules.
  7. Offer to make phone calls.
  8. Lend an ear; sometimes just listening is just what the doctor ordered.

And remember to take care of yourself, too. A caregivers’ job is not an easy one; it can be exhausting, frustrating and difficult. We know this, and do not expect you to run yourself into the ground; take care of yourself first and know that you are loved and appreciated for you kindness and your care.

Monday, November 18, 2013

Three Truths and a Lie

Being given a topic to write about can be difficult; how does one write three truths and a lie when you know that people are going to be reading; looking for the lie? I suppose that my first attempt at this will soon tell;

Since being diagnosed with chronic myelogenous leukemia, two and a half years ago, my life really has not changed much at all. I still love the Lord, my husband and my family, and I still live each and every day to the best of my ability. I am still dancing, even though I have not been able to compete during this time; sometimes I miss it, sometimes I do not.

I know that it may be difficult for those of you that do not dance, to understand this, but having cancer is much like dancing; both are really difficult, yet extremely rewarding. Both require a whole lot of work, understanding and patience; yet they both create a stage for personal growth by teaching their students perseverance, determination, compassion and strength. They both are full of struggles and create a constant battle of trying to force your body to do things that it does not wish to do, and both can be extremely frustrating, bringing their students, to their knees.

There have been many times that walking onto a dance floor has led me to tears, and many times that a waltz down the oncology department’s halls has also led me to tears. But there have also been times that I have left the dance floor totally exhilarated, and many times that I have waltzed out of my oncologists office feeling as though I have slayed the dragon!

So, odd as it may sound, dancing is much like having cancer; but I will admit, I would much prefer a tough coaching session than a bone marrow biopsy!


Anyone find the lie?

This video was taken one month prior to my CML diagnosis; and I wondered "why" I was so winded! lol



video

Saturday, November 16, 2013

My Most Embarrassing Moment; Since Diagnosis

Today's WEGO Health Challenge is to write about the most embarrassing thing that has happened to you, as a result of your illness. This one was easy for me; it happened right after I was diagnosed, in the hospital, during one of the procedures that they were using to lower my extremely high white blood count. Here is the recap:

February 10, 2011 has turned out to be a very, very, long day. The short reprieve was much welcomed but came to an end too quickly. About 5 o’clock in the evening, just in time for another gourmet hospital meal (hospital meals are always tastier cold), in waltzed Nelson. (Can you tell where my mind is?)  He said that he was there to perform the Leukapheresis procedure that Dr. Camacho had ordered. He said that it was a treatment to rapidly lower my white blood cells. My doctor was extremely concerned with the headaches that I had been having and did not want to complicate my leukemia with a stroke. You see, when you have an extreme amount of immature and damaged white blood cells, they can clog up your capillaries and veins, causing them to rupture, hence the risk of a stroke. My eyeballs were already affected and bleeding and I certainly did not want to start drooling, limping and needing to be fed, so I signed all of the necessary consent forms, including the ones that listed death as a possibility, and proceeded to learn all about this machine that I could.

The poor guy that had to squeeze me into the end of his day was stuck with my questions and my body’s strange responses to the treatment for 5 plus hours. He explained that the large machine was something like a dialysis machine. He was going to remove the entire volume of my blood three and a half to four times and run it through his machine removing as many white blood cells as possible.

He attached two main tubes to the catheter in my neck and then proceeded to thread them through his machine. One tube was to remove the blood, the other to return it into my body. My favorite part of the machine is a barrel looking thing where the tube wraps around and around. It is actually a heater that heats the blood before returning it to the body.

There is a window in the machine where he monitors the color of my blood. There is a chart with a graduation of color on it. It is his job to maintain the correct color, kind of a rusty/corral. He watches through a window where there is a barrel that spins the blood so fast that a strobe light is needed to get an accurate reading. Centrifugal force is used to separate the white cells from the blood.  His goal is to remove white cells; however platelets and red blood cells also sneak into the mixture so adjusting the speed can be tricky. The removed fluid goes into a bag that is hung above the machine.

While all of this technical stuff is going on, my vitals are constantly being monitored. Of course, because I am SO special, my blood pressure is extremely low 72/34 ish, and my temperature starts to climb. The process is making me nauseous and they have to keep slowing it down in order to allow my body to adjust. The RN explains that giving calcium through my IV helps with the nausea. He feels that they will need more for tomorrow’s treatment. They actually removed approximately 1075 ml of fluid containing mostly white blood cells. The whole process is exhausting.

The technician explained to me that it was normal for the white count to go down right after treatment but not to be disappointed if it went back up a bit the next morning. He said that this was the normal trend. Before the procedure my white blood cell count was 372,100. After the treatment it lowered to 273,100. The goal was to continue this process until the white cells were below 100,000. I was quite impressed that they had almost removed 100,000 of those little suckers and I pleaded with my body to remain at the low level.

The absolute worst part of this whole procedure was that I was unable to get out of bed. And the worst part of that was the fact that they continued to drip IV fluids into my body at a steady and continuous pace. Now if I had been a guy, this wouldn’t be quite the issue that it was for me. Yes, you guessed it….the dreaded Bed Pan.

Two things that I learned about the bed pan were; first and foremost call for it long before you REALLY need it and second hang on to it once you get it. I would like to tell you that I had a few tips on how to use it, but to be perfectly honest with you I still don’t know which end is the front and which end is the back. What I can tell you is that regardless of the reason you find yourself faced with the prospect of using the bed pan or wetting the bed, you had better bring your sense of humor along. That oval shaped, plastic thing is very uncooperative! When you attempt to sit upon it, it weebles and wobbles. It even has a tricky way of shooting right out from under you. They actually call it a "Slipper Bed Pan". If you are lucky the hospital staff will leave you alone, if you are not you can count on getting stage fright. The only things that I could really do were laugh and apologize over and over to Joe, saying, “I am so sorry, you weren’t supposed to have to do this until I was 80!” Fortunately we had a good laugh and have survived the day, thus far.

Friday, November 15, 2013

Favorite Fridays: Who Do You Follow?

Today’s WEGO Health Challenge asked “who” our favorite people on social media are. I immediately assumed that they were speaking of someone that the general public finds newsworthy, and I wasn't sure that I was up to this challenge.


You see, I do not really buy into that whole Twitter/Hash tag thing and I really could care less about “So and So’s” latest and greatest diet, or manicure, but then I realized that I DO “follow” my family and closest friends; and I have also made many, internet friends that have chronic myelogenous leukemia, just like me! Pat Elliot, Greg Stephens and Shara Tietz are also great Health Activists and friends.

I also follow the WEGO Health site as they have a huge community of health advocates and I love their information and support. I am sure that there really are some great people to “follow” and I may be missing the train, but for now, I only have so much time in one day, and just keeping up with my granddaughter’s eighth birthday photo shoot and my grandson’s new love of Texas Hold ‘Em is about all I have time for!

The sites that I have found most informative and supportive are on Facebook, although there is a great group of CML patients in a google email group, too. You may wish to check them out!


  1. cmlhope@googlegroups.com
  2. WEGO Health
  3. Pat Elliott
  4. National CML Society
  5. CML Sisters
  6. CML Survivors
  7. CML Survivors and Caregivers Closed Group

Thursday, November 14, 2013

Do You Tell People About Your Leukemia?

Since I am fortunate enough not to have to go to work every day, I do not have to be concerned whether or not my cancer will affect my job, or my co-workers’ opinions, as to whether or not my cancer might affect my performance, while at work.

I do however, run into a great many groups of people, with whom I have conversations, while I am dancing. This coupled with the fact that we recently relocated from California, to the very friendly state of Idaho, has put me in the position of wondering; when is the right time to tell people that I have leukemia?

For those of you that know me personally; you know that I am a pretty darn open book. Things fly out of my mouth quickly, sometimes without even thinking. Part of this is due to my openness, and part is do to the fact that if I do not speak what is on my mind, at that precise moment, it may be forever lost in the confines of what used to be, a very sharp brain! I know that some of this is age, but I prefer to blame most of it on the chemo! I went quickly from "some-timers" to "most-timers" and it totally sucks!

Anyway, back to the topic of "when" you tell someone that you have cancer:

I really cannot answer that question, and I am sure that many have found out about my CML in a rather abrupt and shocking manner, like asking the simple question; “Hey, how are you? I haven't seen you in ages,” and my response being; “Yeah, damn Leukemia got the best of me for the past few weeks.” Of course I am not looking for sympathy, I am simply stating the fact that I have cancer; in a less than tactful manner; sorry 'bout that! So needless to say, telling someone about my cancer, may not necessarily be a mapped out plan, but one more of spontaneity.I suppose that I feel if I deliver the news in a haphazard manner, then the truth will not seem as dire.

I hope that my openness will allow people to realize that despite the fact that I do have leukemia, I am still the same person that I always was. I still have the same wishes, hopes and dreams despite being a little more challenged, while accomplishing them. I used to be able to get up and go at the drop of a hat, but now I have to make plans, and hope that I feel well enough to keep them.


I hope that by people knowing that I have leukemia they will feel comfortable asking me questions and realize that cancer should not be a big taboo subject; it is something that can happen to anyone, at any time. Being open about my cancer has allowed me to help others; it also allows people to see that just because a person has cancer, it does not necessarily mean that they are dying; instead, they are living, to the best of their ability, with cancer. 

Wednesday, November 13, 2013

Evolution; How Being a Patient Has Changed Me

Two years and nine months ago, I was told that I had Leukemia; at that point, I knew very little about Leukemia. I knew that it had something to do with my blood and my bone marrow. I remember wondering just how long I had to live.

Once I was in the hospital emergency room, I urged the nurses there, to print information about leukemia, from the internet, for me; while I waited for the hematological oncologist to show up. What I learned from my less than extensive reading was that there were many different types of leukemia, and shortly, I would know what type I had.

As I waited, I pondered my situation; typically, I was never sick, now I had cancer. What was I going to do? How was my life going to change? How was this going to affect my family? How long would I live, and what would I do with the remainder of my life? How would I really want to spend the rest of my life? Is there a cure? Would I live through the cure? Have I accomplished what I was put on this earth to do? Have I made an impact? Could I have done more? So many questions were whirling around in my brain, that I truly believe that I was not actually grasping the seriousness of my condition.

Patti; MY Wonder Woman and BEST friend!
The following day, a bone marrow biopsy was performed and I had an internal jugular vein, leukopheresis catheter placed into my neck; neither of these procedures was pleasant, and the severity of my situation began to sink in; quickly! I began to transform from Super Woman to Heidi; I went from being invincible, to sickly. This was not an easy pill to swallow…..I was not accustomed to being sick.

I knew in my heart of hearts that I must now transform myself into Wonder Woman; not the noun meaning that I was to become someone to admire, but the verb; I knew that I must transform myself into a woman that was going to have to question, or wonder about, my health and treatments; for the rest of my life.
I had evolved from a person that took good health for granted, into a person that must take good health seriously, and into their own hands. I now must search out the best possible treatment and adhere diligently to it. I must become educated in my type of cancer, and stay on top of the continued research being done; I also feel as though I needed to share my experiences with others.

I went from taking life for granted to knowing just how precious life really is. None of us know how long we will survive on this planet, but I definitely take time to appreciate every day, and to make each day count. I would not say that my values have changed, yet I value life so much more. As far as goals are concerned, I suppose that my goal to help others has been illuminated; it has also been channeled. I now find myself being an advocate of health, leukemia and even medication dangers.

I will continue to educate myself and others in the hopes of leading a more genuine, fulfilled and steadfast life.

How have you evolved?

Tuesday, November 12, 2013

Three Songs That Lift My Spirits!

Typically I am an upbeat person; it takes a lot to put me in a funk, but when it does happen, music really does help to pull me out of the hole I am in. I know that for many, inspirational gospel songs, with meaningful, uplifting lyrics do the trick, but for me, I like upbeat, “make me feel happy” songs!

Typically there is no rhyme nor reason as to what gets my goat on a particular day, but the song “Ain’t Never Gonna’ Break My Stride” along with the awesome video (just check out the backup dancers)  ALWAYS makes me smile, and reminds me to keep on going; ain’t nothing, not even CML, is going to keep me down!


Another make me feel happy song is “Knee Deep”.  I LOVE the Caribbean, the ocean, the sand and the blue, blue water; not to mention the great acoustic guitar that simply makes me feel like dancing! Finding the Key to Paradise, is often as simple as being knee deep in the water somewhere…..


And since this challenge limits us to three songs, my third pick of the day would have to be “Bless the Broken Road”, it is the song that I walked down the aisle to, when my husband and I got married; many of us have walked down broken roads, taken the wrong path or the long way to get where we are today.



I do not doubt that I will continue to veer to the left or the right at times, but as long as God is blessing my broken road, I will always find my way.

Monday, November 11, 2013

Alternative Medicine; Is it for You?


When I was first diagnosed with Leukemia I received an influx of advice; some good, some not. I know that each and every person that offers advice simply wants to help; they wanted to share their knowledge and beliefs, in an effort to heal me. I believe that it is human nature that leads us to this behavior; we want to help, we want to fix what is wrong and most importantly, we hope to cure the person that we care about.

Sometimes these efforts are from personal experience, but more often than not, the advice comes from what a person has heard or read. I am certain that they are all well intended but I believe that each and every one of us must choose our own path; when you are faced with cancer, you most likely will choose the path that has the most documented success.

Medical professionals are constantly researching and learning how to treat illnesses, such as cancer; and to some degree, we are all guinea pigs. While I do not doubt that there is often harm associated with a cure, sometimes it is our only option.

For now, my type of leukemia IS experimental; it has only been treated for a little more than a decade; there is still so much that is unknown. For example, we do not know what the “long term” effect, the medication that currently keeps us alive, will have on our bodies; say ten MORE years down the road. I choose to take that risk and live. I hope that somewhere down the road, there will be an alternative. Maybe even a cure.
As far as alternative medicine is concerned, I truly believe that treating what we can with herbs and oils and other such things is totally feasible. The first thing that I grab when my chest is congested is eucalyptus oil; I use it in the steam shower and it opens my chest beautifully. Peppermint is great for mild nausea, chamomile is soothing and melatonin is a terrific sleep aid.

I also believe that yoga helps my overall well-being and by “feeling” good, I believe that my body is better suited to fight cancer. I know that a massage makes me feel like a million bucks and that when I take time to meditate; it is easier for me to focus. I LOVE my chiropractor and trust him explicitly. I try my best NOT to ingest any unnecessary drugs, eat a healthy diet and exercise. All of these things that have been pounded into our heads, our entire lives! So, I guess that this form of alternative medicine is works for me.

I continue to research practically every type of medical condition that is brought to my attention, and attempt to use my best judgment when dealing with my own health. I understand when people ask me whether or not I have tried some hair-brained treatment, slept in a vinegar wrap or spend three hours a day hanging upside down, I know that it is their way of “helping”; most often I simply smile and reply, “No, have not tried that one; yet!” But please excuse me if I respond by saying, “You let me know how that works out for you, when you have cancer!”

I know that that may seem harsh, but what each and every person that has a disease that they are fighting on a daily basis really wants, is your support on whichever path that you have chosen to take.
The only real alternative is; Do we live? Or Do we die?


I choose to LIVE!

Saturday, November 9, 2013

Just Admit It!

Today’s WEGO blog challenge is to write about something “taboo”; something that people do, yet don’t want to talk about. This was not an easy task; of course the first thing that comes to mind are bodily functions, but who wants to write about them? So instead, I thought about things that annoy me and this is my number one top annoyance; screening cell phone calls!

In the “olden days” when one made a phone call, the receiver simply answered it. If they did NOT answer, then you could assume that they were NOT home. There was no way in which to secretly discover “who” was calling; you simply had to take your chances and answer the phone. The caller never had to wonder whether or not the receiver made the decision to answer the phone based upon “who” was calling.

With today’s technology, this has all changed. With the exception of a dire emergency or even worse yet; a lost cell phone, you can pretty much count on the fact that whomever you are trying to reach has their cell phone attached to their body. Most people ALWAYS have their phone within reach, if not on their person. Cell phones have become a second skin to many; people’s entire lives revolving around, and on their phones. Oddly enough, communication often takes a backseat.

The taboo that no one wants to talk about is the fact that now when someone calls, and the phone is NOT answered, you can easily deduce that the person that you are calling simply does not wish to talk to you. You know that they have their phone, you know they have looked at it to see who was calling and you know that they have made the decision not to answer. You have been ignored and you can wait; wait until they are good and ready to talk to you. You or what you have to say is simply not that important.

Yes, you can come to their defense and say that maybe they were busy, or that it was just utterly impossible to answer their phone, at that precise moment, but you and I both know that if they had REALLY wanted to talk to you, there would be no stopping them. I have had plenty of lunches, dinners and conversations interrupted by people answering their cell phones; I became the one that no longer was important. And believe me; I have observed this behavior for years. There is neither rhyme nor reason; sometimes they answer and sometimes they do not. It does not appear that it is content based, it is simply person based.

There never seems to be a real “emergency” at hand when these calls are answered, it is simply someone that they wish to converse with; I find this quite rude and do not maintain friendships of this nature.  I also know that when I call someone and they do not answer, unless there is a legitimate reason, then they probably do not wish to speak to me; luckily, this does not happen often!

I suppose that we all have the option to just delete these offenders from our phones, but other times they are people that remain in your life, whether you choose them or not.

Since moving to the mountains a year and a half ago, I have found freedom; freedom from the cell phone; freedom from having to be available 24/7. I have the freedom from having to be “plugged in” at all times. It took some getting used to but I now realize just how much of my life, my phone controlled. I have to admit that I get excited, once again, when my home phone rings; it is almost always a surprise!

I think that we all need to remember our P’s and Q’s and start consciously applying them to cell phone usage.

The greatest taboo of all is that cell phones, iPods, etc. have become people’s new best friend; we have all been replaced. It is a shame that people would rather focus all of their time and attention on an electronic device than a living, breathing human being.


The next time you are in a group setting look around; what do you see?

Friday, November 8, 2013

My Favorite Three Quotes

“Do not let your hearts be troubled. Trust in God; Trust also in me.” Jesus Christ

I have found this quote to be comforting whenever I find myself worrying about the future; it stops me in my tracks, and allows me to realize that whatever God’s plan for me is, I am ready and willing to fulfill it. He is in control.

“Life Is Not About Waiting for the Storm to Pass; It is About Learning to Dance in the Rain!” unknown

As a dancer, this quote has a special meaning to me, but as a person fighting cancer on a daily basis, it means even more. This quote truly represent the way I live my life; for me, each and every day has a little bit of rain, in one form or another; if I waited for these raindrops to pass, I would never get out of bed.
I would miss out on all of the “living” that I intend to do; I have learned to dance in the rain, and I realize that it is actually not only fun, but quite revitalizing, as well!

Dance in the rain, stomp in the puddles and enjoy every moment!

“Life is What Happens While You Are Busy Making Other Plans.” John Lennon

How true is that? It seems as though every time that I think that I am in control or have a “plan” something jumps in and throws me a monkey wrench! I am grateful that I am an optimistic person that is able to roll with the punches, take each situation as it come and am flexible enough to change paths, without batting an eye.

Some of my best memories in life are events that happened when and how they were least expected! Stop making plans and start living life!


Quotes are something that all of us use in our daily lives; there are so many great ones that it is difficult to choose only three. I would love to hear your favorite quote; please share!

Thursday, November 7, 2013

Was Sprycel Keeping My Peripheral Neuropathy at Bay?

In April of 2010, a little more than three and a half years ago, I suffered extreme side effects from an antibiotic called Cipro, also known as Ciproflaxin. This antibiotic is in a class of antibiotics called floroquinolones; Levaquinn and Avelox are also in this class of antibiotic. Apparently in 2010 there were over 20 million prescriptions written for Cipro, and its’ popularity has increased.

Cipro was designed as a powerful, last drug of choice, antibiotic to be used in extreme bacterial infections that did not respond to prior treatment; it has become a first choice antibiotic for many, many physicians and dentists, despite its’ Black Box Warning status.

So, what’s the big deal? It’s an antibiotic, right? All antibiotics come with some risk and side effects, right? If you’re sick, you need an antibiotic, right? While all of these answers may be “yes” I will tell you what three doses of this antibiotic have done to me; they have apparently caused a permanent, peripheral neuropathy; with my feet being the hardest hit.

I suppose that I probably take in excess of 10,000 steps each and every day; imagine excruciating pain every time that you put weight on your foot; that is 10,000 jolts a day. And imagine that after you experience the jolt, your feet just throb in between each jolt. That is what Cipro did to my feet. I had/have many other issues as well, but my feet are my greatest challenge.

Fast forward eleven months from my second floxing; I was diagnosed with chronic myelogenous leukemia. During my initial treatment I received a chemotherapy drug called Cytarabine. Within days of receiving these chemo treatments, my foot pain began to subside; eventually it became almost non-existent. I began to be able to walk normally and I began to be able to use and bend my toes, my knees and my hips without pain. I was ecstatic! I had found a golden lining to having leukemia; my daily pain was much improved; I began to move, and dance like my old self. To me it was miraculous; to the doctors, they simply shrugged and said that they often heard that people’s RA and other peripheral neuropathy improved after chemotherapy.

I cannot tell you how happy and excited I have been without this daily pain. I was released from the hospital and began a daily medication called Sprycel. Sprycel is a drug used to treat CML. Apparently it also has kept my peripheral neuropathy at bay, because for two and a half years, my pain level has remained stable.


That is until I developed pleural effusion, a side effect of Sprycel, and had to stop my treatment for three weeks until the PE resolved. During this time, the pain in my feet has returned. It began slowly but has continued to progress; it is depressing and I swear I would go in and have a round of chemo if I knew that it would help. I am hoping and praying that by resuming my Sprycel treatment the pain will begin to subside once more, but I also wonder if the Sprycel was strong enough to hold the peripheral neuropathy at bay, but not strong enough to stop it. 

Something to ask at my next doctor's appointment....

Wednesday, November 6, 2013

Cancer Sucks: A Tribute to Joan B. Goode

On Halloween 2013, Joan B. Goode’s life was stolen from her, by pancreatic cancer. She was a sister, she was a daughter and she was a friend. She was the first person that I met when I moved back to California, after meeting Joe. I felt as though I already knew her, as she and Joe danced together on a regular basis; he would always call me on his way home from dancing, and talk about all of the dances that he and Joan, had danced. So when we finally met face to face, it was as if she were an old friend.

I watched her dance in awe, and hoped that when I grew up, I could dance like her! She was always encouraging and ever supportive; she gave me tips and shared her secret thoughts. Looking back, I suppose that the only dream she did not fulfill, was finding that special someone to share her life with. This however did not stop her from living her life to the fullest. When you watch the slideshow put together by Cliff, you will see just how much Joan enjoyed her life; her smile is infectious and her bright light will shine on.

Reflecting on her life in this slideshow made me feel better; it shows just how much fun she had and how many different things that she packed into her life. She wasn’t a bump on a log and I guess that God felt as though she has fulfilled her purpose here on this earth, and called her home. Many believe that we should not feel sad, as her life is just now beginning……I hope to have as many “happy” faces in my slideshow when I am gone; she is an inspiration!

To those of you that knew Joan, I am certain that we can all agree, she was a unique human being, full of life. I still remember her supportive words when I was diagnosed with Leukemia, she said “All you can do is take each day as it comes and if you ever need anything, remember that I am always here.”
It is still so hard to believe that she was dancing in Fresno in May, 2013 and gone by Halloween; let this be a reminder to all:

Live life to the fullest; do not wait for tomorrow, because none of us know just how many tomorrows that we may have.


For all of her dance family, please enjoy this special tribute to Joan B. Goode and be sure to dance a dance for her!


Saturday, November 2, 2013

Facebook; Is it the Be All; End All?

A few days ago, I saw a friend of mine at a monthly dance that we typically attend. She said that she was glad to see me and that she wondered where I had been. I told her that we had been out of town for the past three weeks, as my father had recently passed away. She said that she had had no idea, and offered her condolences.

It was the next thing that came out of her mouth that amused me, and prompted me to write this post. She simply stated, in a matter of fact manner, “I guess that I missed it on Facebook.”  I cracked up and she looked at me as though I were from the moon; I simply stated, in a matter of fact manner, “I guess that I neglected to post it on Facebook!”

While I truly believe that Facebook is a terrific way to communicate and share our lives, sometimes, some things may either be just too difficult, or too personal to share. I understand that there are/were a great many people that I could have reached on Facebook, that would have liked to have known of my father’s death, but somehow I just did not feel as though I could do his passing justice, in a Facebook post.

Our society has changed so drastically with the explosion of the internet that we often post things so quickly, on Facebook, that we do not consider the consequences. When I was first diagnosed with Leukemia, I called my oldest child first; my second next; and then I planned to call my youngest, when he got home from school.

My daughter, fully entrenched in the ways of the internet, quickly put out a post for prayers and support, for me; it was only a few minutes later that she realized what she had done and quickly removed the post. It was already too late; the news had gone viral, and my youngest, found out that his mother had Leukemia; on Facebook!

Of course we laugh about it now, and I often wonder how I would ever keep up with all of the trials and triumphs of my children and grandchildren, if it weren't for Facebook; but it can sometimes be alarming when you see an x-ray with a basketball needle in you grandson’s gut, or hear about your granddaughter’s broken arm; on Facebook. These “events” have prompted our family to become MUCH better at informing our immediate family of mishaps; before hitting the “post” button; and I find that a good thing!

So while Facebook allows us to share our lives with friends and family, near and far, and to connect with strangers with common interests, illnesses and ideas; it may or may not be the first and foremost place, and manner, in which to share pertinent information. Before hitting “post” you may wish to consider the subject of your information, the manner in which you are delivering it, and how it may, or may not, affect any one that may receive it.


In my opinion, Facebook is not the Be All; End All, but it definitely has its’ place on this planet! With that being said, I may soon be ready to share my father’s passing; on Facebook.

Thursday, October 10, 2013

Flu Shot; The Yearly Dilemma!


Every year, beginning shortly after summer, you begin to see advertisements for the flu shot. I used to always hem and haw about whether I should, or should not get the flu shot, as I have not had the flu in over 30 years, and have no recollection of just how miserable it can be. But with all of the controversy and the arguments, for and against the shot, you wonder what is best for you.

Many people argue that the only reason doctors suggest a flu shot is that they make money from doing so. This may be true; however, you do not even need a doctor’s prescription or office visit to get the flu shot. You can walk into just about any drug store, Walmart or Costco and choose to get the flu shot; no doctor required. I believe that doctors would actually make MORE money by seeing patients that are sick with the flu, so that theory does not quite fly, although, I am sure that someone is profiting!

Statistically speaking more than 200,000 people in the US alone are hospitalized each year, due to the flu and there are between 3,000 to 49,000 deaths, which are flu related. I understand that there are risks to receiving the flu shot, but I also believe the minimal risks that you may encounter, are far fewer than the risks of actually having the flu or ingesting Tamiflu.

I am certain that the people that had Polio, and lost children to Polio, would have loved to been given the opportunity to receive a vaccine, that would have prevented their Polio. Same goes with Mumps and Measles, sometimes, the risk of the vaccine far outweighs the risks of the disease or infection. I know that many people are under the assumption that the flu shot only prevents one strain of the flu, but my research states that it actually prevents four strains of influenza. Fact of the matter is that the flu shot is targeted to prevent the most prevalent strain of the flu, so while it may not prevent all types of influenza, it does prevent the strain of flu that you are most likely to be exposed to.

Tamiflu is given to children, one year and older, that are having symptoms of the flu. It is not designed to be a substitution for the flu vaccine. It is said to lessen the symptoms of the flu and to possibly reduce the risk of getting the flu. There is no data in pregnant women and the side effects of Tamiflu are far worse than the side effects of the flu vaccine. I personally would prefer the sore arm from the shot than the vomiting and nausea that may accompany taking Tamiflu. Why some think that risking taking Tamiflu is a lesser risk than having the Flu vaccine, I do not know. So, maybe someone can enlighten me, as the research that I have done does not support this.

I believe that just like the flu vaccine, doctors, or someone, will be making money on the Tamiflu, too. Who is to say where more money will be made; on the vaccine or the Tamiflu? I would like to think that the one-time vaccine vs the week long ingestion of a medication, would be less risky, and less costly, but I suppose that like most medical things, we, as patients will never know the real, true answer. I do know that a patient WITH the flu will make the most money, for doctors, especially if they are hospitalized.

So, what I do know is that since I have leukemia, I have a compromised immune system and I will do whatever it takes to decrease my risk of getting the flu. My neighbor, who is a nurse, had never gotten a flu shot; that is, until she saw how sick her husband was when he got the flu. They are both in their early thirties, young and healthy, but she said that she would never risk not getting the flu vaccine again, after she saw how ill her husband was. She said that it was terribly frightening. It was this that led me to my first flu shot, five years ago.

My oncologist recommends the flu shot for all of his patients, and also gets one himself; as does his staff. I suppose I will never know whether it is the flu shot, or the fact that I was not exposed to the flu, but I think that I will always be in favor of taking the poke in the arm!

This year was the first year that my arm was actually a bit sore after receiving the flu shot; I have a bit of redness below the injection site and it has remained sore for a few day. I have no other side effects 

I see the posts on Facebook and hear how sick people are when they have the flu and I am so fortunate that I have been able to avoid it. Of course, I am extremely careful and make certain to stay away from people that have the flu, I don’t touch railings when I am out in public, use sanitary wipes on shopping carts and wash my hands constantly, so whether it is the flu shot or just plain diligence and good luck, I do not know. But here is hoping that you all stay healthy, regardless of your convictions.

Monday, September 30, 2013

Sprycel Vacation: The Good, the Bad and the Ugly!!

Interestingly enough, I have noticed many different things that Sprycel does, and doesn’t do, to my body. After a nearly three week vacation, it has been difficult in some ways to return to my CML treatment, but comforting and even helpful, in others.

The major disappointment in returning to treatment is my missing “spark”; Sprycel seems to have a way of diminishing my inner “happy” glow! I know that sounds silly, and I am still an extreme optimist, but the bursting-over joy, that I have when I am not on Sprycel, just is not the same. This coupled with the fact that when I am not on Sprycel, the leukemia has an opportunity to kick start its engine.

That being said, there is a comfort to returning to the battlefield. The most difficult part being the return of the side effects; I have suffered greatly from muscle spasms in my back, am extremely tired, and once again, my hair is starting to fall out! Ugh, it was finally beginning to grow again. The afternoon, flu-ish, fever-y feeling has returned, along with the headaches.

The Good news is that the peripheral neuropathy, from the Cipro damage, is beginning to subside again. I still cannot believe how taking Sprycel keeps the pain in my feet, and joints in my legs, at bay. I suppose this really is the golden lining to living with a chronic cancer; totally strange!

My belief and hope is that it will not take as much time, as it did when I first began taking Sprycel to adapt to the medication and for the side effects to seem less severe. I often wonder whether the side effects actually lessen, or if we just learn to better adapt to them.


What do you think?

Thursday, September 26, 2013

When Dealing with Illness; Knowledge is Key!

Looking back two and a half years, I can still remember hearing the words, “You have leukemia.” And the number one thing that comes back to me now, was me thinking, “Crap, I don’t know a thing about leukemia.”

Well, let me tell you, I now know a TON about leukemia, particularly chronic myelogenous leukemia, also known as CML, and I truly believe that no matter what illness or condition that you may face; knowledge, about that subject is the key.

Every single day, new people join our CML boards and groups; more and more people are living with CML. Our numbers are rising at a rate of about 6,000 new cases per year. I recently read that there are an estimated 44,000 people, living with CML.

This shocks me; it feels as though we are a drop in the bucket!

However, since people are now LIVING with CML, and more and more are being diagnosed daily; this number will continue to grow. It has really only been during the past twelve-ish years, that people, who are diagnosed with this type of leukemia, are no longer issued a death sentence; we now will be given the chance to live, to share our knowledge and hope for a cure.

Anyway, back to my main topic; Knowledge is Strength. Here are some links to help newly diagnosed CML patients learn the ropes! Many of these suggestions will be helpful to others, as well.

  1. Signs and Symptoms of Leukemia
  2. Tips for a More Comfortable Hospital Stay
  3. When Choosing a Doctor; Choose Wisely
  4. Understanding CML
  5. Sprycel vs Tasigna vs Gleevec: In My Words
  6. So, Just What is a Philadelphia Chromosome?
  7. Treatment of CML
  8. Living with CML
  9. CML; Measuring It’s Response
  10. Measuring It’s Response Part 2
  11. CML: Finding Information
  12. CML; The First Phase Chronic
  13. CML; The Second Phase; Accelerated
  14. CML; The Third Phase: Blast Crisis
  15. Important Questions for CML Patients
  16. One Thing that All Cancer Patients Have in Common
  17. Sprycel; Financial Help
  18. Patients vs Medical Professionals: Do Your Homework!
  19. Be Your Own Self Advocate
  20. Questions You May Not Have Though to Ask

These are some of the highlights and most important articles on my blog; things that I wish I had had at my fingertips, when I was diagnosed with CML. I hope they are of some help, to you!

Tuesday, September 24, 2013

Where I Get My Strength to Fight CML

Yesterday, my father peacefully left his deteriorating body, for the arms of our Heavenly Father. He fought his battle with strength and grace; my mother, always by his side, despite her own serious medical issues.

Throughout my life, my parents have displayed an amazing amount of courage, strength and grace; through thick and thin, sickness and health, good times and bad, their faith, and dedication to each other never wavered. They were always there for each other, as well as their children, grandchildren and great grandchildren.

It was my father that drove me to the emergency room when I received the call that I had leukemia. As always, a pillar of strength, my father said, “Shell, things are going to be all right, we will face this and do whatever needs to be done. It is what it is.”

“Yes, Dad, It is what it is.” And this is how he faced his own decline; head on, taking it day by day. He never complained and never asked why; he simply faced each and every day, as well as every complication, with determination, acceptance and courage.

And then there is my dear, sweet mother. Talk about a pillar of strength; all 90 pounds of her. She has a broken wrist, a shoulder that is barely attached to her body and a wound on her leg that I call the black hole, which has not healed in many, many years. Her pain level would have caused me to jump in front of a bus many years ago. Yet, there she was, by my father’s side, encouraging him and caring for him; never a complaint, right till the very end.

She IS the Energizer Bunny, she has taken many lickin’s and keeps on tickin’; she is a force to reckoned with and amazes me daily. I know that she will be missing my father desperately, during the rest of her journey. Yet she will never complain, she will continue to live her life to the best of her ability, always giving more of herself than she should. It is her nature to do for others, before thinking of herself. Mom, if you read this, I want you to think of yourself first, from now on! This is a direct order!

Thanks to the example of my parents, I have the strength and courage to fight my own battles. They have demonstrated through their actions, how to face tragedy and despair with dignity, difficulties with grace, and how to love unconditionally.

Leukemia doesn’t stand a chance! I have their inherent stubbornness, as well as their tenacity and I Thank God for the privilege of being their daughter.

Mom and Dad, you taught me well. Thank you.

All My Love and Admiration,
Your daughter,

Michele

Sunday, September 22, 2013

100mg of Sprycel It Is; The Experiment Continues

After being off of Sprycel for approximately three weeks, my pleural effusion has mostly cleared and I have begun to re-introduce Sprycel into my body. I began this next phase of my experiment with 70mg of Sprycel for twelve days; at the end of the twelfth day, I felt as though my pleural effusion had continued to clear up and that I really was back at optimum breathing capacity.

This gave me the courage to up the dose of Sprycel to the recommended amount. My oncologist originally suggested that I ingest 140mg, 5 days per week, as I was on 140mg, 6 days per week when I reached PCRU. 140mg, 5 days a week equated to 700mg, per week. My thinking on the matter was, “Why not 100mg, 7 days per week?”  The week amount is the same and may hold keep me from developing pleural effusion, again.

Also, maybe the side effects won’t be as bad. On the downside, I won’t get a 2 day, per week vacation. It really is a tossup in some ways; do I need the Whammy of 140mg, with the breaks in between? Or is the consistency of 100mg enough? Which choice will give me a better quality of life? And which choice will help me to maintain a negative PCR?

Will I have come out of PCRU as a result of the lack of medication, due to the pleural effusion, and if so, will I be able to regain PCRU prior to my next PCR test? All of these questions shall be answered, in time.
I contacted my oncologist and asked him whether my next step in this process should be 100mg, 7 days a week, of 140mg, 5 days a week and his response was; “There is no data to direct us, so either is fine.” Please remember that he helped to develop Sprycel and is still currently collaborating with Dr. Drucker in CML research, so, since this was his response, I am choosing 100mg, 7 days a week. I hope that it is the correct choice, for me. I am ready to rejoin the battle!


Here is to a negative PCR test in December!

Thursday, September 19, 2013

Things You Shouldn't Say To Someone With Leukemia

I did not write this, the credit goes to: "CallMeLucky" and I do think it is worth sharing!
Thanks to Pat Elliot for bringing it to my attention. A great thing to share during National Leukemia and Lymphoma Awareness Month.

1) Do not tell people with leukemia about someone you know of who had leukemia and died. This goes for first hand knowledge, something from a movie or the paper and especially not a cousin of a friend who knew a guy....

2) Do not tell people with leukemia "they can cure that now". Again a sister-in-law's second cousin's co-worker is not a good reference.

3) Don't tell people with leukemia "but you don't look sick". As much as it's nice to know that we don't look as bad on the outside as we may feel on the inside, it kind of minimizes what we are going through. If the person with leukemia does look sick, you probably shouldn't tell them that either.

4) Don't tell people with leukemia "you're lucky, there's a pill for that". Unless you are taking the pill, shush...

5) Don't tell people with leukemia "you just need to stay positive". The only response to this statement should be "I am positive I have leukemia".

6) Don't tell people with leukemia they should start taking vitamins, herbs, coffee enemas, eating organic foods etc. We know eating healthy is important but we also know there are a lot of things we can't take. No vitamin is going to cure leukemia and the implication, whether you meant it or not, is that if we had done these things to begin with, we wouldn't have gotten leukemia in the first place.

7) Don't tell people with leukemia to "suck it up". If you do, expect to get a modified response of "you suck it".

Don't tell people with leukemia "what doesn't kill us makes us stronger". I should be able to lift a car over my head at this point, the fact is I am getting weaker, so please spare me the cliche.

9) Don't tell people with leukemia "it is what it is". Thanks for the deep philosophical thoughts, I know you think you're being deep, but you're just being dismissive.

10) Don't tell people with leukemia "so it's pretty much like diabetes, you just take your medicine and you're fine". Wow, you managed to marginalize not just one but two very serious diseases.

11) Don't tell people with leukemia "it could be worse". Once again aside from being incredibly dismissive, it makes us think about what could be coming around the corner.

12) Don't tell people with leukemia "we all have to die sometime". Really? Tell you what, you go first and let me know how it goes.


Wednesday, September 18, 2013

Peripheral Neuropathy, from Cipro, Returned; Not Good!

As many of you may already know, four and a half years ago, I suffered severe side effects from an antibiotic, in the floroquinolone family, called Cipro. The first time it happened, I suffered a ruptured tendon. I did not correlate the ruptured tendon to the antibiotic, Cipro.

Eleven months later, I was nearly crippled by the drug. I was given it a second time for a urinary tract infection; I took five pills and my body was destroyed. I mean literally destroyed; I suffered from the worst pain I have ever felt, in my entire life. It was mostly located in my hips, legs and feet. The pain was constant, excruciating, and never subsided. This time I DID realized that it was caused by Cipro.

I also suffered from light sensitivity and total brain fog. This is not something that you would wish upon any one, not even your worst enemy. There is no way to reverse these side effects and doctors simply shrug their shoulders when presented with a floxed patient.

Oddly enough, I suffered with this destruction and peripheral neuropathy, right up until I received chemotherapy treatments, after being diagnosed with CML. Oddly enough, there is something in the chemotherapy that can reduce symptoms in RA patients, and now I have experienced the same thing; pain relief. I was ecstatic and figured that this pain relief was the golden lining, in having leukemia.

Fast forward two and a half years; the peripheral neuropathy and the light sensitivity have improved drastically, although I cannot say the same thing about the brain fog. All was well until I developed pleural effusion and bronchitis last month; I had to go off of my Sprycel treatment, until my lungs were functioning properly, again.

 Within ten days of ceasing the Sprycel, the peripheral neuropathy began to return. I started getting extreme pain in the balls of my feet and toes, (my hardest hit area), skin sensitivity and the feeling that my Achilles and other tendons could rupture if I was not careful. I was horrified and angry. It really makes me ponder the correlation between the peripheral neuropathy and the TKI’s, as well as the chemotherapy; AND just how damaging this class of antibiotics, really are.

Moral to the story; I am actually blessed to have CML because living with that sort of pain is truly unbearable. It literally made me wish I would die; I would rather have cancer than the pain associated with the damage from those drugs. How sad it that?


In my opinion, unless it is an absolute, last resort, life or death situation, the floroquiolone, antibiotics Cipro, Levaquinn and Avelox, should be avoided like the plague!

Tuesday, September 17, 2013

Why 140mg of Sprycel? The Explanation

Many of you have asked, and been concerned about the high dose of Sprycel that I have been on. For those of you that do not know, the highest dose of Sprycel, recommended by the manufacturer, Bristol-Myers Squibb, is 140mg. 140mg is typically only used when a patient is in either an accelerated phase of chronic myelogenous leukemia, or blast crisis. 100mg of Dasatinib, aka Sprycel, is the recommended starting dose of Sprycel.

When I was diagnosed with CML, on February 9, 2011, the oncologist thought that I was in Blast Crisis, as my white blood cell count was 385,000. A bone marrow biopsy was performed and confirmed that miraculously, I was still in the chronic phase. Nevertheless, I was hospitalized, given a chemotherapy drug called Cytarabine, and treated with leukapheresis. Once my white cells were below 100,000, I was released, and given a prescription of 140mg of Sprycel.

This was eventually lowered by another oncologist, to 100mg, once a day. For one year, my PCR decreased, and then it began to increase. After two increases, my oncologist, a highly respected CML specialist, currently collaborating with Dr. Druker for continued CML treatment, increased my dosage to 140mg, 6 days a week. He felt that hitting it hard, and giving my body a 1 day a week “break” was the best option for me. This decision came after three increases in my PCR, so it was not made lightly.

This, however, did not work; my PCR continued to rise. We talked about switching TKI’s if my PCR did not decrease on my next visit, three months later. It was during those three months that I hypothesized my low stomach acid, low absorption theory. We decided that I would give Sprycel onemore chance, and that I would actually take the Sprycel with something acidic. I decided that I would try the Bragg’s Apple Cider Vinegar, as I had heard that there are other health benefits to the vinegar, in addition to dealing with the possible low stomach acid.

Well, low and behold, apparently it did the trick. Taking 140mg of Sprycel, 6 days a week, dropped my PCR from the highest it had ever been, to a negative reading; the downside, I developed pleural effusion. And yes, my side effects also increased, which tells me that even though we increased the Sprycel to 140mg, it wasn’t so much the increase that dropped my PCR, but the addition of the vinegar which increased the absorption. So the big question is; Now What?

So, anyway, back to the “why” I was on a high dose of Sprycel; it was because I wasn’t responding to the lower dose and my PCR was steadily increasing. My oncologist didn’t want to give up on it yet because he felt that Sprycel was still my best option for reaching PCRU with the least amount of side effects and the most flexibility.

Even though it was the highest dosage of Sprycel at 140mg, the dosage in mg’s is still lower than the amount of mg’s that he felt I would have to take, of the other drugs, to achieve PCRU. If this makes any sense! Lol  So, we stuck with it.

And like I said before, he is a highly respected CML specialist, currently working with Dr. Druker in CML research, so I feel as though he is “in the know” and doing what he feels is best; for me. The trick will be balancing the dosage of Sprycel; to remain in PCRU,with no pleural effusion.

I guess the next PCR and visit, will tell the true tale. 

Bricks for the Brave!!