Thursday, June 14, 2018

Bosulif Update: The New Wonder Drug!

I started taking Bosulif, a TKI medication, last December 2017. This is one of the medications that is used to treat Chronic Mylogenous Leukemia, which I have been battling since February 2011.

I had previously been on Sprycel since diagnosis, but the side effect, pleural effusion, became more than I or my lung could handle; hence the switch to Bosulif.

To further complicate matters, my PCR; the test used to measure the amount of disease in my body had climbed from .042. to .972, which doesn't seem like much, but in the world of a CML patient, it is "scary huge"!

Starting a new medication is always scary, as you are wading into uncharted waters; how will my body react, and will it work?  Bosulif was no different. In the beginning, I was MISERABLE!! I was so sick; constant extreme nausea; the kind of nausea that makes you not even want to swallow your own spit, for fear of vomiting. I always premedicated with Zofran, an anti-nausea medication, which helped, but did not completely control the nausea.

I tried ginger....ginger ale, ginger slices and ginger oil! I tried peppermint oil and peppermint Altoids! All those seem toe help somewhat.


I began using CBD oil (no THC) 300 mg, and sucking on Preggie Pops, along with the Zofran; this seemed to help tremendously. That, coupled with the fact that my PCR dropped to .06, and I was beginning to be a happy camper, once again!

Fast forward seven months, and I am happy and proud to say, that my body is finally adjusting to Bosulif!!!

Hallelujah, Amen!!

I have only taken two Zofran, during the past two weeks; the CBD oil and the Preggie Pops seem to be all I need at this point, and I am SO grateful! Very little nausea, and no diarrhea! I was a bit fearful to stop the Zofran, as I believed that it counter-acted the diarrhea aspect of the Bosulif, due to the fact that it can cause constipation, but it seems that the Zofran has helped me to adjust to the Bosulif and has become an "as needed" medication, instead of a "must have."

I am still splitting my 400 mg, per day dose; into two 200 mg doses, twice a day; this is working for me.

I am SO grateful; I am seriously almost giddy! And to top all of that off, my latest PCR test came back at .06!!! Once again below the .1%, coveted number! Thank you, Bosulif!

I am one lucky girl, and so glad that I FINALLY made the switch! Being brave is harder than you think; it takes, courage, and sometimes a good kick in the pants! It is difficult to give up on a medication that has saved your life for six years, not knowing whether or not the new medication will do the same.

Some of us accept a change in medication more easily than others; I needed to be pushed off a cliff! Fortunately, there was a safety net, to catch me at the bottom.

Be Brave, Be Fierce and Be Grateful!

Blessings to all of you Warriors!

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmylogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml

Saturday, June 9, 2018

Without Clinical Trials:I Would Be Dead!

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much-needed awareness about the power of breakthrough research.

Early morning, February 9, 2011; the telephone rings, I answer. This is what I hear: "I am sorry to have to tell you this, but you have leukemia."

My first response is, "What?"

My second response is, "Now what?"

And so the journey begins.

My journey is not unique, it is not uncommon and I do not travel it alone. It has been a journey filled with twisting, winding roads, which have led me into the depths of despair, the valleys of normalcy, and the mountain tops of elation.

I have Chronic Mylogenous Leukemia; keyword  "chronic." Chronic meaning I will have a lifetime to understand and learn about this disease. Chronic meaning I will have a front row seat, to the ongoing research, in a cure for CML. Chronic meaning I will live to see the results of the many clinical trials, that are currently being conducted, with brave CML patients.

The first clinical trial for Chronic Mylogenous Leukemia, began in 1998, with a drug named Gleevec; through its success, Gleevec was FDA approved, for treatment of CML, in May 2001. This groundbreaking discovery has vastly changed the outcome of CML patients from a certain death to a bright future; one that often rivals the life expectancy of someone who does not have cancer.

Choosing to be a pioneer, in a clinical trial, is a daunting decision. There are so many unknowns and so many potential risks and dangers, yet the glimmer of hope often tips the scale. For many that enter clinical trials, the trial itself is their last chance; their last hope to beat the odds.

Knowing that they are facing imminent death, people courageously enter into clinical trials with much optimism; understanding that they are entering uncharted waters. They know that their outcome is not always favorable, but deem it necessary, and worth the risk. They know that the information gathered in these trials, is not only valuable, and their best chance at survival, but significant to research, which will help the lives of those who follow in their footsteps. I truly believe that these people are true warriors.

Not all clinical trials target patients who are in the end stages of their disease. Currently, there is an exciting new clinical trial, for people with chronic mylogenous leukemia. It is a trial monitoring whether or not a CML patient (who meets very specific criteria) can safely discontinue their CML treatment, and remain in remission. And, if their disease does become detectable once again during this trial,  can the leukemia can be put back into an undetectable state, once resuming treatment?
There are many people interested in the long-term outcome, to these trials.

I believe that patients' may have influenced this particular clinical trial because I believe that Patients Have Power! They have a voice, and they have the power to say, "I do not wish to remain in treatment, if my leukemia is undetectable, and the treatment is no longer necessary."

Because CML is chronic cancer, and because CML patients are now living normal life spans, many of us have had ample time, to research our disease. We are well versed, curious and determined to "find a cure." We want to return to our "old" normal; a normal without cancer and without side effects, from its' treatment. We want to live our best lives, without the financial burden of our life-saving medication.

Not everyone will be able to become treatment free, but I admire those, (who fit the criteria)who are willing to take the risk and enter a "Treatment Free Remission Trial," in order to give us all hope. The information gathered, will aid researchers in determining who will be able to someday discontinue treatment, and who will not; and the "why" it will be successful for some, and not for others. The goal is to treat CML patients, with the hopes of discontinuing their treatment, in the future.

Fortunately, there are clinical trials, and people willing to participate in them,  which may allow this dream, to become a reality.

I greatly admire the brave souls, who are willing to take calculated risks, in order to aid researchers, in their quest; to find cures for disease. Without these valiant pioneers, we would not be witnessing so many medical breakthroughs, and I would not be alive, today.

I believe that Patients Have Power, and as a patient advocate, I strongly believe that we should use our power, for the greater good. No one chooses, or expects that their own "good health" will change or decline, and we often take our own "good health" for granted; right up until the phone rings, and you hear those words, "I am sorry to have to tell you this, but you have leukemia."

I am grateful to for creating the opportunity to speak out on behalf of clinical trials, and believing that Patients, truly do, Have Power!

FaceBook: CML: A Place for Hope and Humor

#clinincaltrials #Patientshavepower #research #treatment #leukemia #lovemylife #cml

Wednesday, June 6, 2018

Even in Pain, You Can "Play"

Me; Making sure I don't get bit by a mosquito;
we didn't see any, but I saw people with bug
Sad but true, I am still dealing with a flare up of nerve pain, in my feet, and a precarious Achilles. At least the nerve pain running down my left leg has subsided; for this, I am grateful!

It is hard not to get angry when this happens; I hate hobbling around, and I hate being in pain.
Sometimes the best medicine for pain, is a change of scenery; it doesn't make it go away, but it does help to improve my mood! lol

Last night we went to the Shakepeare Festival, to see MacBeth. The play was performed in an outdoor amphitheater, and we had front and center seats! It was the first, in a series of plays, that we will see this summer.

I love theater, and I REALLY love this small, intimate venue. We are allowed to bring in our own food and drink, so I packed up a picnic basket, grabbed a blanket and some chairs, and headed to town.

It was a fabulous evening, and despite knowing very little about MacBeth, I thoroughly enjoyed the play. The acting was superb, as always, and the fact that I was able to follow the story line was a bonus!

Here's to a night out, a change in scenery, and an improved mood!

Sunday, June 3, 2018

Cipro; The "Gift" That Keeps on Giving

It is an absolutely beautiful day, today! The sun is shining and it is not too hot; the birds are singing; and all of the plant life has burst into bloom! While I already shared my beautiful iris plant, that is double blooming like crazy, I cannot help to think that it is not the only gift that keeps on giving.

It has been many years since  my body was permanently damaged by the antibiotic Cipro. (a commonly prescribed antibiotic for bladder,  sinus infections, and UTI's) I am grateful that the reoccurring pain, due to the damage caused by Cipro, is no longer constant, and that I have periods of time, that I actually forget that it even happened, but boy, oh boy, let me tell you, when it flares back up, I am reminded just how life altering a "simple round" of the antibiotic Cipro, can be.

I believe that this latest flare is directly linked to the night of dancing, a week ago. It was the third time that I had been dancing since my shoulder surgery, and since my pleural effusion has improved, due to a change in leukemia medications, and I am sure that I just over did it. My heart and soul,  just do not know when to say, when! lol

The nerve pain in the bottom of my feet began as soon as I stepped out of the car; after arriving home. I was a bit annoyed, yet hopeful that it would be gone by morning; of course, as my luck would have it,  that did not happen. The nerve pain has just continually gotten worse, and I am hobbling, with every step.

Two days ago, the nerve pain started traveling up the back of my left leg; It is so severe that it makes, sitting, standing or lying down miserable. Ibuprofen seems to bring some relief and today I am trying heat. UGH!

My reason for sharing this information is purely,  to warn you; warn you against taking the risk of ending up with side effects from an antibiotic (Cipro or Levaquin or any florquinolone)that may be permanent. I swear I would not wish this pain on anyone; it SUCKS!

I know that it is very hard to believe that an "antibiotic" can cause permanent nerve, tendon and muscle damage, to name a few,  and I know that most medical professionals just do not believe the severity of the side effects, or the number of people damaged by them, but what I can tell you, from my personal experience, and from speaking to others who actually realize where their unexplained pain has come from, is that it just is NOT worth the risk.

For those of us that have been damaged by this class of antibiotics, we know how life altering, that decision has been, and I know we all wish we had been "warned", or at least counseled, like the Black Box Warning states. (this rarely happens)

I know that people probably think I am a bit obsessive about this subject, but every single time I am physically reminded how my body has been destroyed, I want to save others from the same fate.

I believe in my heart of hearts, that a large number of people that have tendon tears and ruptures, and others that are diagnosed with Fibromyalgia, are actually suffering from Cipro or Levaquin side effects; sad, but true. I believe that the FDA recorded number of cases, is grossly under reported, as I believe that few actually correlate their pain, and/or tendon ruptures to an antibiotic that they are currently taking, or have taken in the past.

If you suffer from unexplained pain, or tendon ruptures, or any of the side effects listed below, delve into your medical history and see if you have taken Cipro or Levaquin. Best case scenario, is to avoid it, unless it is your LAST drug of choice!

Side effects include, and are not limited to: (remember, some of these may be permanent)

Swelling or inflammation of the tendons
Tendon rupture
Tingling or pricking sensation (“pins and needles”)
Numbness in arms or legs
Muscle pain
Peripheral neuropathy (nerve damage)
Suicidal thoughts
Abnormally rapid or irregular heartbeat
Ringing or buzzing in the ears
Vision problems
Skin rash
Sensitivity of skin to sunlight
Worsening of myasthenia gravis
Aortic aneurysm
Aortic dissection

On a side note; as I was looking for the side effects of these antibiotics, I was FLOORED to see  how  "hidden" the possible permanent damage is, on the internet. You really have to dig, or search; Black Box Warning. Truly unbelievable, and absolutely infuriating.

At this point, who is responsible? The pharmaceutical company? The prescribing physician? The pharmacist? Or the person who trusts, all of these people?

Related Links:

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #sideeffcets  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #ciprodangers  #cmlspecialist #blackboxwarning  #thrivingwithleukemia #livingwithcancer#floroquinolonedangers #levaquindanger

Bricks for the Brave!!