Saturday, August 31, 2013

A Negative PCR! Really?

Ok, so you may have been reading, I have been doing a bit of an experiment; I have had an increase in my PCR test for the better part of a year, and for the past four months, I have been taking Sprycel with a tablespoon of Mother’s vinegar, in water, to see if a more acidic stomach environment aid in better absorption of my medication; resulting in a decrease, in my PCR. Any result lower than the previous test is what I hoped and prayed for.

Well, low and behold, I just received an email from my oncologist and it stated: “PCR is negative!” I read it three times and then burst into tears. I cannot even believe it! I am uber excited, yet a bit apprehensive; is it lab error, or a fluke? I have waited two and a half years for that result and will be floored, if a little bit of vinegar, got me there!

For the moment, I am sticking with my theory; for some reason or another, I developed low stomach acid, therefore the Sprycel was not absorbing properly, causing my PCR to rise. In an artificially created acidic stomach, Mother’s vinegar and water, it appears that my increased side effects are in direct correlation with my decreased PCR.

Oddly enough, I also developed a mild case of Pleural Effusion in my left lung; my oncologist said that he sees a direct correlation between a negative response and PE; therefore, once I get over the PE and my crappy case of bronchitis, he will try to keep my on Sprycel, and adjust my dose to avoid further bouts of PE, for as long as possible.

He still feels as though Sprycel is the appropriate drug for me, although we did briefly discuss Ponatinib; he believes that somewhere down the line, I may have to make a switch and that Ponatinib may be the new drug of choice. He stated that he would like to see more of a “track record” and more statistics before actually making the switch and that if we can find a dosage of Sprycel that keeps the PE at bay, then that is what we are going to do. And now that I have a negative response, we are just going to have to wait and see if we can obtain two in a row!

Of course, if I DO have two negative responses in a row, I will be jumping for joy because I have had to incease my Sprycel intake, since developing PE and bronchitis. It has been almost two weeks and the bronchitis is nearly gone; I also believe that the PE is clearing, too. I cannot lie, I have loved the Sprycel vacation, but I am ready to get back on the horse, so that I will remain in Negative-land!

I frequently wonder about the medical profession. I often feel that physicians can sometimes be lulled to sleep, seeing different patients, with similar side effects, complaints and diseases, day after day. I wonder how often a case or situation comes along, which makes them stop and really think; “Is this a typical case, or does it need more of my attention?”

Typically, I am the one that brings up “out of the box” ideas and thoughts, with my doctors, and often am stunned when they look quizzically at me, like I am from the moon; and then responds, “You know, I never really thought of that before. I will have to get back with you.”

My Family!
I am not a medical doctor, and I am not a scientist; I am a woman that lives with a chronic blood cancer. This cancer requires me to ingest toxic medication, in order to stay alive. This medication does not have a lengthy track record, as it has not been around for a long period of time. No one knows it long term effects on other parts of the body, or whether or not it will cause additional major health issues down the road. It is a new and fascinating way to treat cancer and we all hope that someday, this will lead to a cure. It is my goal, to live my best life, and to still be around when that cure is discovered!

Cheers to Mother’s and my first Negative PCR!

Friday, August 30, 2013

Sucking Down the Mother’s!

It has become my routine; 10 pm the alarm goes off. I get up, fix my vinegar shooter and slug down the Sprycel! I sputter and cough a bit, but keep my hopes high. I realize that not only is Mother's going to give me an acidic stomach, it is also good for many other things! A few weeks into this routine, I find myself more tired than usual, flu-ey feeling in the afternoon and more like I felt the first year I started taking Sprycel.

My bones start aching more and my back has many more spasms; overall, my side effects have increased. I find this curious and maintain that this could make sense; if my theory is correct. It would make sense that my side effects would increase, with better absorption of my medication. This theory will better be documented, if my PCR is lower. Of course, this is MY theory, yet I think that it is a good one. It is not exactly scientific or medically documented.

Oddly enough, my overly thinned out hair, has also began to thicken and grow. I wonder if it is because I was not getting the nutrients from my diet, once again, due to low stomach acid. We all know that we are not supposed to take any type of antacid that may cut down our stomach acid, and I have been diligent in following this “rule.”

 The reason that we avoid medications that reduce stomach acid (antacids) is that Sprycel is best absorbed from our stomachs, into our bloodstreams, in the presence of stomach acid. The over the counter antacids that are readily available, yet still avoidable are:

                     1.       Tagamet
                     2.       Pepcid        
                     3.       Zantac
                     4.       Prilosec
                     5.       Protonix
                     6.       Nexium
                     7.       AcipHex
                     8.       Prevacid 

Medications that are stomach acid reducers, which are all right to take, two hours prior to, or two hours following Sprycel are:

                   1.       Maalox
                   2.       Tums
                   3.       Rolaids

Of course, now I am wondering whether or not Sprycel is the actual cause of my low stomach acid? Is it possible, that over the past year, Sprycel has actually created a low stomach acid environment? Is it possible that others are experiencing an increase in their PCR, whether they are on Gleevec, Tasigna or Sprycel ; due to low stomach acid? Could some of the “resistance” to medication actually be something as simple as poor absorption, due to low stomach acid? Where did the research on the side effects of our CML medications end?

We all know that researchers are striving to develop newer and better medications based upon their findings, of previous ones. I am guessing that not ALL of the side effects of these medications are documented or even realized, as of yet; and therefore, low stomach acid COULD be something that occurs, after a certain period of time, in some patients.

These are all things that I will ponder. I will continually be researching and questioning any and all medical professionals, any time that my mind is in over-drive. Luckily, I have an oncologist that humors me!
We must all remember to ask “why,” if things are not progressing as we had expected, and we must be a strong self-advocate, of our own health. We must continue to share our findings with others, and be curious enough to ask hard questions. We all need to think “out-side of the box.”

Could it be that our doctors are jumping the gun when they switch our meds because there seems to be a slower, or lack of response, or even a reversal of response, without checking other causes?  I wonder and I wait. It won’t be long now!

I encourage each and every one of you to periodically do the “red beet” test. What harm can be done? I would love to know whether or not I am the only one that has run up against this issue.

So for now, I will just have to be patient and wait for the results of my last PCR; should be any day now….

Thursday, August 29, 2013

Absorption of Medication: Could This Be The Cause?

Somewhere between the last visit, with my oncologist, and the next appointment, my husband and I were visiting with my very ill father. Prior to his illness, he had planted a few red beets in his garden. Since he was hospitalized and unable to eat his beets; Hahaha…..we indulged.

I know that many of you are thinking “gross”; “Who wants to eat red beets?”, but we actually LIKE them! Shortly after we ingested the beets, I went to the bathroom and noticed that my urine had turned red; rather quickly, I thought. I asked my husband if he had the same “outcome” and he said, “No!”

Being of a curious mind, I figured that there must be something to this; we both ate beets, and one of us had red urine. What I found was that eating beets is actually a way to test for low stomach acid. Apparently, if you do not have enough stomach acid to break down the pigment in the beets, your body is unable to metabolize and assimilate the beetroot pigments properly,  thus you will experience something called beeturia; which basically boils down to red tinged urine.

This got me thinking; if I am unable to properly digest the beets, what are the chances that I am not digesting my Sprycel medication properly, as well? If I have low stomach acid, and the Sprycel is not breaking down, in a way in which it can be absorbed as expected, it might help to explain why my increased dosage of Sprycel, has resulted in an increase of my BCR-ABL; not a decrease, as expected.

So, the lack of absorption may be the underlying cause of my increasing Bcr-Abl, but could Sprycel be the underlying cause to the low stomach acid? I had successfully taken Sprycel for one year; with a decreasing BCR-ABL. At the one year mark this changed; my PCR began an upward trend; slow, but steady.

I could hardly wait for my doctor’s appointment. Luckily, my doctor and I have an understanding relationship; He understands that I question everything and research and read anything I can get my hands on. He listens to me and doesn't make me feel inferior.

I was curious as to what he would have to say about my theory; I thought it was a good one. Feasible, and possibly a simple answer to very scientific question.

After getting my test results and discussing my overall health, I proposed my theory, to my oncologist. He broke out in a great big grin and said, “You may just be brilliant!” “That is an excellent theory.”  “From now on, take your Sprycel with something acidic, like Coke.”

Since I take my Sprycel at night, and I am not a big soda drinker, I decided to go one step further. I had heard that “Mother’s” vinegar was good for you, in many ways. So I began to choke down my Sprycel, with a shot of vinegar, in water, every night. I hoped that it would be the key; the key that would lead me down the path to a negative PCR.

Now all I had to do was wait four months, till my next appointment…….

Wednesday, August 28, 2013

The Ever Increasing BCR-ABL: A Synopsis

I was diagnosed with Chronic Myelogenous Leukemia on February 8, 2011. I was hospitalized, treated with Cytarabine and leukapheresis to reduce my white blood count, which was 385,000; 4,000-10,000 is considered normal.

When my white blood cell count was reduced to 98,000, I was allowed to leave the hospital and continue my treatment orally, with a drug called Dasatinib; or Sprycel. I was to be monitored weekly by blood draws, with a bone marrow biopsy to follow, six months down the road. Fortunately, my white cells continued to decrease and my PCR, which is a test that measures the amount of disease in my bone marrow, continued to decrease as well. In December of 2011, I reached to coveted goal of a “negative” PCR. I was thrilled, yet a bit apprehensive as my oncologist said not to get too excited, until I had two negatives in a row; he felt that I had reached the “negative” phase a bit prematurely; statistically speaking.

Unfortunately, he was correct and my PCR, taken three months later was out of the negative, and higher than it had ever been, since being diagnosed; it was 8.9x10-4. Talk about depressing! My oncologist upped my Sprycel dosage and I waited three months, till my next PCR test. It was good news, it appeared that we were back on track and my PCR test had gone back down; not negative, but in the correct direction, it was 1.15x10-4. My oncologist and I figured that the negative was likely a lab error, as was the 8.9x10-4, and that the current PCR test was probably quite accurate and in line with my current slow and steady, downward trend.

Love This!
We felt as though we had dialed in the correct dosage of medication and would just have to play the “wait and see” game, that all of us with CML live with, on a daily basis. Fast forward three months and once again, I had an increase in my BCR-ABL; it was now 3.89x10-4, almost exactly where it was one year prior: meaning that I had made no progress in an entire year.

I was totally bummed and discouraged. You see, the ultimate goal is to reach a negative PCR during your first two years of treatment; that is the best possible scenario; the dream, the goal. The fact that I was quickly approaching the two year mark and headed in the wrong direction was devastating, to me.

Once again, I had to wait and hope and pray; for three months. I had to hope that my next PCR would begin to trend down, not up. This, once again was not the case; my PCR went right on up to 5.92x10-4. My oncologist and I were both baffled; and concerned.

BUT, I had a theory……………..

Sunday, August 25, 2013

Pleural Effusion and Bronchitis; A Blessing in Disguise

I find our ability to adjust to our current situation in life, be it health or circumstance, fascinating. Since being diagnosed with Chronic Myelogenous Leukemia, two and a half years ago (Feb. 8, 2011) I have apparently adjusted, in my opinion, quite well, to living with a chronic cancer. Since there is no alternative, I attribute my adjustment to plain old “human nature” and optimism.

The fascinating part of this adjustment is how seamlessly a chronic illness creeps in; and sets up shop. It arrives with a bang; “You have leukemia” and then begins to ebb and flow. You have good days and bad, just like you did prior to your diagnosis; the exception being that you do not seem to bounce back quite as quickly as you used to. Life in general takes a bit more effort and the things that you used to find effortless, now require digging deep, into your reserved pool of energy. You begin to settle into your new normal with absolutely no recognition of the disappearance of your old one. You do not even realize that the person that you once were has been forever changed.

It is with the arrival of a mild case of Pleural Effusion and a nasty case of Bronchitis, I find myself on a Sprycel vacation. It is during these, such vacations that I visit my “old” self. It is during this time that I realize that CML has done more than wreak havoc on my body; it has also held a part of my very being captive. It does so in such a subtle manner, that I do not even realize that it has happened until I am off of my medication for several days.

This realization comes to me, despite being sick and miserable, when I begin to cry; and the reason that I am crying is because I am SO happy! I feel my “old” self, creeping back into my soul, and the joy that I feel, makes me cry. I know that this may sound crazy to many, and I really do not know how to explain this “feeling” but for me, it is like reconnecting and saying hello to the person that I was prior to CML.

Oddly enough, I do not feel sad or depressed when I am taking my medication; I do not realize that a part of me is missing. I do not realize that a piece of my puzzle has fallen to floor, and been kicked under the rug; only to resurface during my unexpected Sprycel vacations. This is the second time that this realization has come to the surface, this time even more prominent than the last, and it is this realization that has me giddy today, yet sad for the day in which I must resume my daily regimen of Sprycel.

Sprycel is a drug that allows me the opportunity, to continue to enjoy the wondrous journey that we call life. It is a medication that buys me time, time that may someday result in a cure for CML. It will be a day that those of us living with CML, will celebrate. We will celebrate the survival of our journey and the return of our lives without side effects, doctor appointments, lab tests and bone marrow biopsies. We will celebrate a cancer free body and all of the experiences that have lead us to this day, and most of all, I will celebrate the return of me; the person that I so rarely get to enjoy and experience any more.

I miss the silly, happy; giddy me, the one that simply feels whole. The one who silently disappears; so silently that I do not even realize that she is gone, until she returns again. It is the strangest thing, something that I truly cannot explain, but for now, while I am still on a Sprycel vacation, hacking like crazy and feeling like crap, that I am the “Happiest Girl, in the Whole USA!!!”

Bricks for the Brave!!