Followers

Friday, January 31, 2014

Medication Inconsistencies During Manufacturing

Thanks to Karla Weeks, who is not only a CML patient, but a nurse as well, I feel as though my manufacturing theory may actually be plausible. She has taken my record keeping to the next level; not only does she record her side effects, but she also records the Lot number, of her medication. She claims that she definitely suffers from different side effects, with different Lots of medication and that she has even reported these differences to the FDA.

I do not know how many of you have ever,  actually reported side effects of a medication to the FDA, but let me tell you, it is like speaking to a deaf ear. I repeatedly reported my crippling side effects from the antibiotic Cipro to them, and I really felt as though my reports simply went into never, never to be seen again, report land. I have literally met hundreds and hundreds of people that have been either crippled by Cipro, had a ruptured tendon or suffer continually from peripheral neuropathy, from this antibiotic, yet the FDA still states that it is less than 1% of the people taking this drug, that has these side effects.

I understand that many people may not attribute their side effects to their drugs and do not often correlate “pain” with a medication, but I hope to bring awareness to this possibility. Most of us think of a reaction to medication as vomiting, diarrhea, rash or difficulty breathing, but we must now also consider pain as a side effect; and if your side effect is severe, you should ALWAYS report it to the FDA.

Karla also said that she had a friend that actually worked at a pharmaceutical manufacturing facility and mentioned the inconsistency in quality, when they would test the lots. He likened it to taking a spoon of chocolate chip cookie dough from the bowl; sometimes you get a lot of chips sometimes you get zero chips, and I wonder just how much this inconsistency not only affects the performance of drugs, but the side effects as well.

I believe that it would behoove us all to start recording our side effects, as well as the Lot numbers of our TKI’s and even consider reporting them to the FDA and our oncologist’s, as well. If the drug companies are unaware of our side effects then we will have little, to no chance of them developing a drug that specifically targets the side effects that we are suffering from.

I do not know how diligently our physicians actually report such things, but I do know that when you live with them on a day to day basis, which it is a greater concern to us, than it is to them.

I know that we are all busy people and trying to find time to do one more thing may seem overwhelming, but I have found a way to do this quickly and efficiently; I bought a calendar that I keep right next to my Sprycel; I keep a pen attached to the calendar and simply write in my dose, what I took it with, and my side effects of the day. At the top I have added the Lot number.


Maybe by keeping accurate records we will someday impact physicians, researches and drug manufacturers; by helping them, we would in turn help ourselves!

Disclaimer; I am NOT a doctor and these thoughts are my own speculations. I believe that while drugs save lives and am extremely grateful for Sprycel, I also believe that there is much room for improvement!

Thursday, January 30, 2014

Has Something Changed in Sprycel’s Production?

I was diagnosed with Leukemia (CML) almost three years ago. When I was diagnosed, I knew nothing about blood cancers at all. I have since educated myself and am constantly reading and researching everything and anything that I can find.

I am also connecting with others, whom also have CML; mostly through Facebook and Yahoo groups. When I first joined these groups, it seemed as though the greatest complaints were nausea, bumpy irritated skin, brain fog and fatigue; the fatigue seemed to be the most life altering challenge of the bunch. Of course there were others side effects as well, but those seem to be the “biggies”.

Today it seems as though pain is the number one complaint; musculoskeletal pain, muscle spasms and peripheral neuropathy (nerve pain) seem to be running rampant in the circles, in which I am swimming. I have tried to find a common denominator, other than CML, but because we all were diagnosed at different times and are all at different stages of our treatment, the only common denominator that I can see is the medication that we are taking.

That medication is Sprycel, also known as Dasatinib. This is not to say that Tasigna and Gleevec users are not experiencing the same thing, it’s just that I have mostly been talking to Sprycel users. So, what is going on?

Is it just that after a certain period of time we are all destined to experience pain while taking this drug?

Is it just another side effect that will eventually show up if given time?

Or have the manufacturers started to use a different substance when making this medication?

Are there “good” and “bad” batches?

Are some lots made with generic or substandard ingredients?

I am sure that we will never know the answers to these questions, but one thing I do know is that when I bake, I often find that my end product is not exactly the same as the one before; this is despite following the instructions to a “T”. I know that even though I am using all of the same ingredients my cookies, cakes, breads and pies often taste differently that the time before. This is not to say that they are not “good”; it is just that they are different.

I am sure that this is because the eggs that I used are not “exactly” the same; they have come from a different chicken, which had a different diet, than the previous chicken; and the same goes for the cream, the butter and the flour.

So, is it possible that we have just run into a “bad” batch of Sprycel? Or, is it possible that they have changed something in their production and this is the newer, better, cheaper version? Do the manufacturers even know that we are all suffering? Do our oncologists report this information, or do they simply shrug off our pain attributing it to something else?


Inquiring minds want to know!

Wednesday, January 29, 2014

Sometimes Dreary is a Good Thing!

Today is a dreary day; it is cold and gray, no sunshine and no snow. It is the sort of day that many would find depressing, allowing the gray to dampen their spirits. I suppose that I am extremely fortunate that I am able to allow the day to envelope me, and to enjoy its’ calming effect.

I am able to lie on our love seat, legs up, on a heating pad, in front of a cozy fire, while my hard working husband is outside shoveling; what little bit of snow that we got last night. I am able to reflect on all of the blessings that I have in my life, and am so grateful to be here to enjoy them.

Living with cancer is a challenge and not always fun; it comes with its’ ups and down, its’ trials and tribulations, but it comes with its’ blessings, too. I do not take any of these things lightly and sometimes I need a dreary day to remind me of just how bright my inner light shines!


Blessing to you all; don’t forget to allow your inner light to shine; no matter how dreary the day may be!


Monday, January 27, 2014

Dancing Through the Pain!

I often marvel at the fact that I am still able to dance. For me, dancing is like a breath of fresh air. It brings joy to my heart and soul, and is something that I hope to be able to do for the rest of my life. I find it interesting that despite the pain in my body, I am still able to hobble to the dance floor, and dance.

I may not always be able to control my movement as well as I would like, and I may lose my balance on occasion, or miss a change in direction, but all in all, I am able to dance. It seems that the adrenalin in my body masks the pain; or is it the fact that I am simply doing something that I love so much, that I am able to ignore it?

I find it rather ironic that I literally hobble on and off of the dance floor, and if you saw me walking to the car at the end of the night, you would swear that I was a 90 year old woman, that had been run over by a car, on numerous occasions!

So, here is my wish: I wish that I could apply this phenomenon to the rest of my life; bottle up the adrenaline and sprinkle it on myself, throughout the day. Or maybe I just need to start dancing from the washer to the sink and on up the stairs; oh wait, I already do that! So why doesn't it have the same effect?


That is the question of the day!

This video was taken six months after I was diagnosed with CML; due to adjusting to medications and lifestyle changes, we have not competed since. This song was not chosen by me, but is SO appropriate!

video

Sunday, January 26, 2014

Sprycel Dosage Dilemma: Help Me!

After having an MRI and seeing a neurologist who assessed my pain and performed a multitude of tests, I had a preliminary, verbal report that stated that my test results were “negative”; meaning that there was no physical explanation for my pain. This did not surprise me as my pain only exists, when I am actively taking Sprycel.

I was diagnosed with CML almost three years ago and have been absolutely diligent in my treatment. The only times that I have not taken Sprycel diligently, on time without missing a dose, was when I had Pleural Effusion and bronchitis; my oncologist instructed me to cease taking the Sprycel until both had cleared up. In addition to those two Sprycel vacations, there were two other times that I skipped a few doses; these were not sanctioned by my oncologist, they were my very own rebellion, due to the extreme pain that I was experiencing.

So all in all, I have followed protocol to the “T”; through experimentation and diligence, I have achieved two negative PCR results, in a row. For this, I am extremely grateful and totally ecstatic. I am hoping and praying for a third!

This being said, I am a bit baffled by my oncologist’s reaction and response to my continuing pain level, despite a lower dose. I do not know what I expected him to say, or what I really wanted to hear, but I guess that what I was hoping for was some sort of way to manage the pain. His response when I asked him about my test results was, “I haven't seen the reports yet. If they are negative and your symptoms improve/resolve off drug, then you should change to Tasigna.”

My reply was, “I suppose I will have to consider Tasigna, although from the peeps that I know on that take Tasigna, are even more miserable than I am! And since I have had two negatives in a row, I was kind of hoping for three and another decrease in meds! Would that be a possibility if I continued with negative results? I am just trying to weigh the pros and cons.” 

His response was, “You probably wouldn't remain negative on 50/d. You might be able to take one or two days off/week on 70, but my perception is that it doesn't help you much.”

So, all of that being said, I am in a bit of a quandary. I still believe in my heart of hearts that the manner in which I am taking the Sprycel, is helping it to be better absorbed into my system, which in turn is resulting in a negative PCR, as well as increased side effects. I am still hoping and believing that if I obtain another negative PCR, on 70 mg of Sprycel a day, that there is a possibility that I may do the same on 50mg.


I believe that there is a “sweet spot”; an specific amount of medication that will keep the CML at bay, while allowing me to have decent quality of life. It is my belief that my oncologist will go whichever way that I choose, but I guess that I would like a bit more thought going into the decision. It seems to me that all factors should be considered and weighed before so quickly, jumping ship.

Right now I am leaning towards sticking it out on Sprycel for two reasons; the first being the negative PCR’s, the second is the fact that I have no idea what side effects that I would suffer on Tasigna. All of these medications come with side effects and none of us knows which ones will cause us the most discomfort; that coupled with the fact that I haven’t a clue HOW I will respond to a new drug. I just do not think that I am up for another re-adjustment period, at this time.

What do you think?

Friday, January 24, 2014

Second Negative PCR; Comes with Joy and Frustration

For those of you that have been following my blog, you know what a struggle it has been to actually reach a negative PCR. A negative PCR, also known as a complete molecular response (CMR) is achieved when there is no evidence of the Bcr-Abl RNA or DNA in the bone marrow. This is the best possible case scenario for a person with chronic myelogenous leukemia.

It has almost been three years since I was diagnosed with Leukemia; to say that it has been a roller coaster ride, would be an understatement. I have always believed that each and every one of us needs to be our own self advocate, as no one knows our own bodies, like we do. At this point, I am emphatic about this belief!
This being said, my recent, second negative PCR comes not only with pure, ecstatic joy, but a bit of frustration, too. You see, the first year that I was being treated for leukemia, I responded quite well to the medication. During the second year of my treatment, this changed. My response to my medication became less and less effective in the fight against CML, despite an increase in my medication.

My oncologist’s solution to this increase in my PCR, was to consider a change in medication. I suppose that that is a viable solution however, shouldn't an underlying cause be considered, before making that change? Shouldn't we at least explore other possibilities for the lack of response? Isn't it possible that the lack of response with one drug, may lead to the same lack of response to another drug? Shouldn't we at least examine what has happened, and try to figure out why?

My frustration comes from the lack of investigation and the quick response to “change the Band-Aid” before really knowing why,we must do so. I get even more frustrated because I am the one that is analyzing the data and trying to make sense out of all of the information at hand. That is NOT my forte, not my job and not my area of expertise. These are the things that I am paying the professionals, the big bucks for, so shouldn't they be the ones that come up with alternative solutions AFTER investigating the situation?

The reason that I am saying these things is that I truly believe that the manner in which I began taking my Sprycel, after three consecutive rises in my PCR, is the explicit reason that I have had two negative PCR results; the second one occurring AFTER a reduction in my dose of medication, despite having to be totally OFF of ALL medication, for nearly five weeks. And this change was 100% discovered through my own curiosity, determination and good old fashioned, blind luck. It seems so very obvious to me now, and I cannot believe that my oncologist never even considered this possibility with me, as well as his other patients.

I believe that it has to do with the absorption of Sprycel into my body; I believe that for the first year I absorbed the Spycel in an efficient manner; this resulted in a lowering PCR and many side effects. The second year, I believe that for one reason or another, my body stopped assimilating the Sprycel in the same efficient manner; this resulted in a rise in my PCR, and a decrease in my side effects. There seems to be a pattern here.

The one thing that we all know is that in order for Sprycel to be effective, it must be absorbed into our bloodstreams; we are told to avoid antacids, as the acid in our stomachs is needed, in order for this to occur. SO, could Sprycel, at some point actually create a low acidic stomach environment? Or has something else occurred in my stomach that has caused a low stomach environment? Could this be the direct cause of my increasing PCR; and the poor absorption of Sprycel into my bloodstream? I believe so.

The reason that I say this is because since I have been taking Sprycel with a tablespoon-ish of Bragg’s vinegar, diluted in water; my PCR has been negative, not only once, but twice. My side effects have returned and I have even added the dreaded pleural effusion to the list. The PE caused a decrease in my medication from 140 mg 7 days a week, to 100 mg 6 days a week;  along with a cease in medication for 5 weeks. Despite the decrease in medication, I maintained my negative PCR. My oncologist did say that he often sees pleural effusion in direct correlation to negative PCR. Interesting, don't you think?

I must admit that I was a bit floored by my second negative result, not only because of the reduction in medication, but because of the time that I had to be off of Sprycel to allow the pleural effusion to clear. This, in my opinion, only helps to confirm “my” theory of why I have achieved two negative PCR’s; what I do not understand is why in the world my oncologist isn't more excited about this information. I honestly think that he is humoring me; and that he believes that my negative PCR’s have nothing to do with the manner in which I am taking the Sprycel. Although I will give him credit for telling me to take the Sprycel with something acidic after I approached him with my theory. He said that he figured that it couldn't hurt!

I suppose that we will just have to wait and see if I can obtain a third negative PCR, after lowering my dose of Sprycel to 70 mg, 7 days a week.


I suppose I will also have to continue to ponder and research my own personal treatment choices, as well as my lack of confidence in the medical field.  I am extremely happy that I have had such great results, but also quite frustrated as I believe these results were obtained through my own research and inquisitiveness, not through the medical professionals that we all put so much trust in. 

Thursday, January 23, 2014

MRI, NCS and Electromyogram All Normal: How to Deal with the Pain

Now that I have done the obligatory tests, making certain that there is no underlying cause for my pain, I am curious to see just what the next step is. I am guessing that it will be “suck it up” as there are not too many alternatives. I emailed my oncologist, today.

My oncologist really thought that I had a pinched nerve in my wrists or spine, and that that was the source of my pain. He really felt that my pain should not have come on, this late in the stage of my treatment. He claims that he has never seen hand numbness and pain, due to Sprycel, and that the musculoskeletal pain should have shown up right from the beginning, not two and a half years down the road.

Sometimes dealing with medical professionals really makes me want to scream. I knew in my heart of hearts that the Sprycel was the root of my pain. To me it was so obvious; the pain was there when I took the medication and went away when I did not; but not being the “professional” I figured that I had better do as advised, and make sure that there was no underlying “issues.”

 I was not sure what I hoped the results would be. If there was an underlying cause then MAYBE the pain could be addressed and alleviated. That would be a good thing; despite the fact that it would mean that there really was something wrong. But if there wasn’t anything wrong, it simply meant that I was just going to have to live with the pain, as I cannot live without my medication.

This pain is unlike any other pain that I have ever experienced. It is not like a pulled muscle or a bruise from an injury. The musculoskeletal bone pain is a pain that is seated deep in my bones and joints; it feels much like a toothache where my bones themselves, just ache. This often causes my hip joints to ache, as well. It is interesting because this pain is asymmetrical, and it travels. Oddly enough, the most consistent way that it seems to travel, is when it gets so bad, I finally get to a point that I take a Sprycel break. It usually takes two to three days for the pain to completely go away, and then, a few days after resuming the Sprycel, the pain generally finds a new area in which to set up shop.

The peripheral neuropathy, or nerve pain, is even worse! It is a pain that I can only describe as excruciating. It typically is located in my feet; how weird is that? It feels like someone has sliced off the top layer of the skin on the balls of my feet, or my heels; exposed the nerves and then is constantly blowing on them. It totally sucks and doesn’t do much for my dancing!

The muscle pain is interesting; it isn't like a “pulled” muscle where when you move, it hurts. It is more like a searing pain that sometimes pulses and sometimes cramps. The cramps seem to tighten in my back and just stay contracted. Once the muscles become inflamed, it seems as though they just stay that way. Occasionally they travel, too.

The manner in which I have been attempting to control these pain issues is by using Voltaren Gel, a topical, nonsteroidal anti-inflammatory drug, sparingly. I attempt to use it only when I am desperate as I do not like to take any unnecessary medication, but maybe if I used it consistently, I would have better results? I may experiment with this.

I also take Baclofen when my muscle spasm are acute, and use Lidocaine patches when I can no longer stand the pain, or am going dancing. I suppose that there is one part of me that worries that if I use these “tools” on a regular basis, that they may not be effective, when I really need them.

I do not want to take narcotic pain relievers and too many over the counter pain meds are not good for us either; I figure that my kidneys and liver need all of their strength in order to deal with my toxic, daily chemo pill, and I do not want to tax them with additional medication.


So, what is the answer? I do not know, but I would love to hear what you do, to deal with your pain. I will likely continue to search for an answer and hope to make a loud enough noise that the researchers will address this issue while they are coming up with the next, new, latest and most improved TKI!

Wednesday, January 22, 2014

Neurologist: Second Appointment

As luck would have it, Dr. Labib’s office called and they were able to rearrange their other patients, in order to make the allotted time available, to do the nerve conduction study and electromyogram. I showed up for these tests and was taken into a room with small machine, which did not appear to be too menacing.  As it turned out, this little machine packs quite a punch!

The doctor’s assistant was going to perform the first half of the test; the nerve conduction study. This study is performed by placing two conductors on two fingers, on each hand. One hand is tested at a time. These conductors look like little springy kind of things; after they are tightened at the base of your fingers, a gel type material is applied to the springy thing on each finger; this acts as a conductor.

Next, they use a pen to measure six inch intervals on your hand and up your arm. These pen marks become the target for the electrical current that is going to be zapping you. I asked the dude if it was going to hurt and he answered by being extremely “PC” and said, “Some people say it does not hurt at all!” I said, “Thanks that is really helpful,” and I wondered how to process this information.

With no time to spare, I am gooped up and ready to go; he takes a device that looks much like a nine volt battery and places it on one of my marks. I scrunch my eyes closed really tight and wait for it…..after a few seconds I open them and say, “What are you waiting for?” He laughed and said he needed to make a few adjustments to the machine. False start number one!

Next attempt is a success; I scrunch-up my eyes again; really, really tight and wait for it; it comes and I scream! Just a short quick scream, but a scream nonetheless, I also kicked my leg up and kicked his machine. Now I am cracking up and apologizing like crazy. He said, “Did it really hurt that bad?” I told him that it did not; and that it startled me more than anything; it kind of felt like when you bang your elbow in just the wrong spot; a sharp, quick zap. He proceeded to move his machine away from my flailing legs.

We continue; me scrunching up my eyes and screeching after every zap. I kept asking him how much longer and he kept saying that “it depends.” What it depended upon was whether or not he was able to get a clear reading of the reaction of my nerves to his electric shock.

At some point, I had to stop him and take a pill for nausea. I really am not too much of a baby, but I have to say that this was NOT a fun test. I am supposing that it lasted approximately forty minutes.

Once he finally completed his study, he told me that the doctor would be in to do the second half of the testing; the electromyogram. I asked him which test was “worse” and he said, depends upon how scared you are of needles! Lol  Well, since I have leukemia, needles and I are old friends; I have gotten very used to being “stuck” so that didn't really bother me, but the thought of sticking a needle into a nerve was, well…..quite un-nerving! HAHAHA

Once the doctor arrived, I asked him if he was going to stick needles into my nerves and he said, “NO” into your muscles. OK, fair enough; these needles are extremely thin and really did not hurt. The only uncomfortable part of this test was when I had to activate the muscle that the needle was in; it was a bit uncomfortable, but did not really “hurt” per se.

I found it quite interesting that I could even detect this tiny little intrusion into my muscle; obviously it doesn’t take much intrusion into our bodies, for our bodies to recognize it. This procedure I found was much more tolerable than the one with the unpredictable electrical shocks, and I was actually even able to observe. I found it quite fascinating to watch my fingers move, completely on their own, without me moving them. Funny how being poked was more tolerable, to me, than being zapped! I really, really do not like electricity!
This test probably only lasted twenty to thirty minutes; I once again survived more medical procedures, courtesy of CML.

It didn’t take very long for the doctor to read my results; no carpal tunnel syndrome; no apparent “reason” for my pain, other than as a side effect of my medication. My blood work was also all in the normal range which simply meant; my pain is solely attributed to my medication; just as I have stated, all along.

So, if you are taking Sprycel and maybe other TKI’s such as Tasigna or Gleevec, and experiencing musculoskeletal pain, cramping and/or pain in your muscles, and /or peripheral neuropathy (nerve pain) then chances are that your life-saving medication is the cause of your pain. Despite the fact that my oncologist has “never seen” numbness and pain in a patients hands from Sprycel, it doesn’t mean that it isn’t, from Sprycel. I suppose that he is going to have to accept the fact that this is another side effect caused by Sprycel, also known as Dasatinib.


Boo-ya!

Tuesday, January 21, 2014

A Visit with a Neurologist

Considering that it was the holidays and most medical offices were closed for several days, for two weeks, coupled with the fact that I live in another state; I was extremely fortunate to be able to see Dr. Labib; for this, I am truly grateful.

As a new patient he of course had to ask for my medical history; poor guy, I am sure that it was way more extensive than he could ever have imagined and he was probably regretting, agreeing to “squeeze” me into his schedule.

You see, I had to explain my experience with the antibiotic, Cipro, which mimics, or is exasperated by Sprycel. I had to tell him that I suffered greatly from peripheral neuropathy, sensitivity to light and touch, and extreme muscle and joint pain, including a tendon rupture all due to Cipro, five years ago.

And then I had to tell him that I now have leukemia and must take a daily medication classified as a TKI; also known as a tyrosine kinase inhibitor. He of course looked a bit befuddled and quickly tried to move on. I stopped him and told him that I believed that the Cipro incident was exasperated by Sprycel and that I believed that all of my symptoms, pain in the soles of my feet, my hips (in the joint as well as the outer muscles), my back and my hands (including numbness) was due to side effects, from this drug.

As most physicians that I have met do, he obligatorily wrote down all of my information and probably figured that I did not have a clue in the world, what was truly wrong with me, and that he was pretty certain that he would find the cause.  

His plan of action included a laboratory work up for “reversible” causes of neuropathy that included: thyroid stimulating hormone, B12, RPR, Hemoglobin A1C, serum and urine immunofixation, anti-double stranded DNA antibody, rheumatoid factor and zinc. He was going to follow up all of these tests with a nerve conduction study and an electromyogram, as he believed, after looking at my MRI, that I had carpal tunnel syndrome, in both of my wrists.

I left the office to have my blood work drawn and would return for the nerve conduction study and an electromyogram when they could “squeeze” me in. I was frustrated as I know that I do not have carpal tunnel syndrome, in both of my wrists, and the way that I “’know” this is because my pain goes away when I do not take Sprycel. Ugh! The things we must do to appease our doctors!


My insurance company must really LOVE me!

Monday, January 20, 2014

MRI: Preliminary Results

Christmas has come and gone; its’ usual festive chaos is still alive and well, at my mother’s home, despite this being the first Christmas without my father to lead the pack. My mother did a fine job of filling his shoes, and I am so very proud of her!

I have had my second MRI, and am awaiting a call from Dr. Kelly to hear my results; I have my MRI disc in my hot little hands, and have spent quite a bit of time, perusing all of the interesting images. Of course I do not have any idea what I am looking at, but I still find the images fascinating!

It wasn't long before the phone rang; oddly enough, the first thing that Dr. Kelly asked me was whether or not I knew that I had Pleural Effusion. It seems that the pleural effusion was more of a concern, than my spine! I told him that no, that I did not realize that I had PE, but that it was/is a side effect of Sprycel, and that I had had it before. He asked if I had pain, heaviness or trouble breathing; I said that I did not, and he was baffled. I find it a bit amusing how I have become accustomed to functioning on a lower intake of oxygen.

As usual, the pleural effusion DID become apparent when we began dancing, at the New Year’s dance event. This however, gave me the perfect excuse to go on a Sprycel vacation, which in turn allowed me to be pain free for the entire week! I was able to teach, dance and attend twelve hours of intensive training and private lessons, with virtually no pain. Sometimes a little PE is a GOOD thing!

Of course, this just reaffirmed my belief that my pain is from the Sprycel, not some other, underlying cause. No Sprycel=No Pain. Does it really take a rocket scientist to figure this one out?

Now, back to my MRI results; as I suspected, there is nothing on my MRI to that would cause the pain that I am experiencing. I have a slight bulge between two discs in my lower back, which I have been aware of for decades, and slight stenosis in my upper spine. Stenosis is basically a narrowing of the spine, which can cause nerves to be constricted, which can cause pain. The degree of stenosis, according to Dr. Kelly, is in the “normal” range, for someone “my age”! lol In other words, nothing to worry about and definitely not, the source of my pain.

Of course I got off of the phone in an “I told you so” mood, and quickly contacted my oncologist. His reply was, “I haven't seen peripheral neuropathy with Sprycel usage; can you see a local neurologist?”  Figures, right?

Of course this is just what I want to do while on vacation, for the holidays, but wanting to have answers and solutions for the pain was high on my priority list, so I disregarded my holiday cheer, and made a few phone calls.

My friend was able to call in a favor and got me into a neurologist, a few days later; once again, I was expecting negative results but anxious to have answers, I was grateful for the appointment.


A few more days and maybe I would have the confirmation that I was looking for; I truly do not know what the “best” conclusion will be; long term.

Saturday, January 18, 2014

MRI is Scheduled; Not for the Faint of Heart!

Sometimes it pays to have friends in the medical field. It seems that Palm Desert, Ca. will forever be a source of finding medical issues, gone wrong, in my body; it doesn't seem to matter that I no longer live there!
Fortunately, I was able to schedule my MRI’s quickly; I wanted to get to the bottom of my pain issues as quickly as possible so, I had an MRI on Christmas Eve and another one the day after Christmas. Not knowing what to do with myself the day after that, I had a Mammogram!

I must say that walking into Dr. Kelly’s office brought a smile to my face; first of all, he is an old friend. We share a tragic event that will forever link us; he has also always been there, for me, during my most trying medical conditions. He has changed his office a bit and I must say that having Marilyn Monroe, Elvis Presley and the Blues Brothers greet his patients certainly, helps to put us at ease.

I have never had an MRI, also known as Magnetic Resonance Imaging before, so I really had no idea what to expect.  Being the inquisitive type, I walked into the room and began to ask questions; how does it work, what will you see, how long does it take, does it hurt, etc.? Their only question to me was, “Are you claustrophobic?” I told them that I did not think so and they told me to lie down. They said that it was going to be “loud” and that I was to put in earplugs, and hold still!

I put in the ear plugs and got comfy on the table. They put a support under my knees, put additional ear
muffs against my ears and then tightened a contraption against my head; to keep it still. I asked for a blanket because it was cold. They gave me a button to push, “In case of an Emergency” and sent me into a tube. At first, I thought, “This isn't so bad,” but the further into the tube I went, the “so bad” got “worse” and I began to feel a slight panic. I was strapped down tight by my head, in a machine that was approximately four inches from my face. I could hear my own heartbeat and my breathing; it was a bit disconcerting, to say the least.

I felt the panic begin to rise; I told myself that everything was alright. My mind began to race and went into survival mode; I MUST remain still, I must conserve my air, I MUST not panic! Yes, I watch WAY too many Criminal Mind type shows! I began to imagine what it would be like to be buried alive or trapped in the crevice of a rock canyon, or even paralyzed. I had to make myself stop.

I reminded myself that I was just lying still for approximately fifteen minutes, and then I would be free; if I pushed the button, it would only delay the inevitable. I knew that I could do this; so, I just shut my eyes and pretended to be elsewhere! As long as my eyes were closed, all was fine. I began to think in a more productive manner and took little peeks into the tunnel from time to time, simply to prove that I had everything under control!  Yes, I am a total dork.

 It was shortly after my panic was under control that the real fun began; the machine came to life with a BANG and started to make noise. When I say noise, I mean NOISE!!!! It clicked and clanged and banged and bumped. It was so loud that despite the two sets of earplugs, it was still like a war zone. It was frightening and could definitely cause damage to one's’ hearing if your ears were not protected.

Eventually I got into the rhythm of the noise and it began to make me smile; there were times that it even started to sound as though the machine was saying actual words repetitively. The machine and I became one, and I think that it may have actually put me into a trance, as I was startled when they began to back me out of the machine!

Wait, I thought, I was just beginning to get a real grasp on this whole experience; I was in the process of taking it to another level…..

What an odd experience that was; one down and one to go. Because my entire spine was being studied, they felt that the tests should be done in two separate sessions, so I went back to my mother’s. We celebrated her birthday and Christmas, and then I returned for round two.

Hopefully I will receive the results after my second MRI; at least this time I will know what to expect!


MRI’s are not for the faint of heart! 

Friday, January 17, 2014

Musculoskeletal Pain, Peripheral Neuropathy and Muscle Spasms Lead to MRI

The past six weeks have been filled to the brim; I can hardly believe that it is already 2014! Our whirlwind journey began with our annual Christmas party, for approximately 75 people! We are fortunate to have been able to move into an area that has quickly become home. We have found ourselves enveloped in new friendships, from our neighborhood to our dance community, and have established an extended “family” far away from “home”.  For this we are truly grateful!

A few days after our shindig, we headed south; our first stop was gingerbread houses, cookies and Christmas projects with four of our favorite little people; Grandkids are the best! Next stop, my mother’s for an overnight, from there we headed to visit more family and to dance at our old “honky-tonk”, it was great seeing old friends. The next day we headed to Los Angeles to see my oncologist, with my mother’s, being the final destination.

After spending five hours in the car, to travel only ninety miles (LA traffic), we were sorely missing home and Boise’s fifteen minute, “rush hour” traffic. By this time, my body had had just about enough. The pain was in my back, my hips and my feet, my hands were numb and throbbing; it was so bad that I was taking Baclofen, using Voltaren Gel and had Lidocaine patches all over my body. I had in my possession an order, for an MRI.

After seeing my oncologist, he insisted that I have an MRI, as soon as possible. I told him that I truly believed that my pain was Sprycel related; I reminded him of my recent experiment; three days of being Sprycel free, equated to three days, pain free. He said that he had another patient suffering from the same symptoms as me, but that he had never seen the numbness in the hands, due to Spycel, so he was sending both of us, for MRI’s.

I was frustrated, but figured that I should rule out any other possibilities. I left the office saying that I bet that my PCR was negative and that my side effects were due to being overmedicated. I was hoping to be able to lower my dose of Sprycel, after we received a negative PCR.

He smiled and said that he hoped that I would be negative, too, but not to be disappointed, if I was not. He reminded me of my lengthy Sprycel vacation, due to pleural effusion, and almost sounded as though he believed that my PCR would not be negative, because of it. I said good-bye and said, “I guess that we will just have to wait, and see!”

At this point, I still believe my theory and am planning my next Sprycel vacation to prove it! You see we are going to be attending a dance convention for six days, over New Year’s; we will be teaching, dancing and attending eleven hours of intensive dance training, during that time, and I do not want to be racked with pain.
But for now, I will stay the course and schedule an MRI. Fortunately, I have a friend in Palm Desert that will not only perform the test, but will read it on the spot as well!

I do not know whether to hope for a pinched nerve, slipped disc or some other pliable “reason” for this continued pain, or to hope that it truly is a side effect, to my medication. You see, I MUST continue to take my medication in order to live, but living in constant, and often excruciating pain, is no fun.


I guess this is one of those; “Be careful what you wish for” moments.

Thursday, January 9, 2014

Second Negative PCR!!!

I am SO excited that I can hardly even stand my own self!! It has been a VERY bumpy five months, but the Negative PCR result, makes the journey SO much more tolerable.

I have many events to report and update, as to what has transpired along this journey, but for now I am so grateful, and wanted to share this news, with you!


Praise God!

Bricks for the Brave!!