Monday, March 31, 2014

CML Hands; What the Heck?

I know that I wrote about CML hands yesterday; but today I am not only frustrated with my own hands, I am frustrated with the fact that there are SO MANY others that are also suffering with the same side effect.
I have been on Sprycel for a little over three years and have suffered a gamut of side effects; they seem to travel and to rotate; some days it is musculoskeletal pain, other days it is fatigue and nausea; I have even had pleural effusion. Fortunately, there are some days that I have very few side effects at all; these are the ones that I live for!

The frustrating phenomenon that currently has me frazzled, is the overwhelming outcry in our CML groups and forums, of so many others, experiencing the same thing; hands that are so numb and painful at night that they keep you awake, weak, clumsy hands that ache all day, a burning and tingling feeling that does not subside, and the constant “wringing” of our hands, attempting to alleviate these symptoms. Plain and simple; our hands do not work, and cause nothing but pain.

What I want to know is “why”; all of a sudden there is a plethora of CML peeps with this particular side effect. Every single day there are more and more people complaining about their hands. For me, this started about three to four months ago, but the pain has escalated. I have seen a neurologist and had an MRI; a one or two day Sprycel break used to stop the pain temporarily, but now it seems as though the break has to be longer, and the pain does not subside completely.

What I find most curious about all of this is that these side effects seem to change; I have speculated before, that maybe the cause of the changing side effects, is linked to specific “batches” of medication.  Maybe the latest batch is the culprit. This led me to call Bristol-Myers Squibb:

To report an Adverse Event or Product Quality Complaint, please contact us at:
AE/PQC: 1-800-721-5072

I spoke with Natalie and told her about my side effects, as well as all of yours. She took tons of information and said that she would pass the information on to the “Adverse Event” people, as well as the “Quality Control” people.

I do not expect much to come of this, but I figured that it couldn't hurt. Just imagine if the actual manufacturers added too much of something, or not enough of something else, or changed an ingredient and that was the cause of our pain. Imagine if they could fix it! Wouldn't that be so COOL?

My current Bottle of Sprycel is 70 mg, 60 tablets.
The Lot # is 3J75329C.
The expiration date is September 2016.
The NDC number, found on the front of the bottle is NDC 0003-0524-11

If you are experiencing numb painful hands and are on Sprycel, please consider leaving your name and the above information on your Sprycel bottle, in the comment section below; if you are uncomfortable leaving your name, then the other information is probably good enough. It will be interesting to see whether or not any of us share the same Lot number!

Something has got to give as I am exhausted! I actually dread going to bed because it is so much worse at night; I cannot sleep and when I do, I wake up with my hands so numb that I am actually fearful of breaking a finger by getting it caught up in the sheets and moving my hand and not feeling that my finger is caught; it is crazy!

I understand that living with cancer isn't necessarily "easy" but is it too much to ask for a treatment that doesn't make you miserable?

Here’s to better “hand” days! 

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml  #numb hands #cmlspecialist #specialist  #thrivingwithleukemia #livingwithcancer

Saturday, March 29, 2014

CML Hands!

I swear some days it seems as though it is always something! Is it really too much to ask for to have hands that work? I haven't slept in four nights due to the pain in my hands and my wrists. I do not know why, but the pain, numbness and tingling seems so much worse; AFTER I go to bed!

I know that it is Sprycel related as I have seen a neurologist and have been tested for carpal tunnel, so other than taking short Sprycel breaks, I do not know what to do! I see my oncologist next week so hopefully we can come up with a plan.

I am so sick and tired of dropping things, being unable to open things and the weak, achy feeling that has crept back into both of my hands. It seems to come and go; it has been quite manageable for the past few months, but for some reason or another; it is back!

Anyone else out there suffering from CML hands? Peripheral neuropathy, sucks!

Wednesday, March 26, 2014

The CML Boat: CML Game Day

We have all heard the term, “Up shit creek without a paddle”, right?  As well as, “Paddle your own canoe”? 
Well, when you have CML it is nice to know that we are not rowing our boats, or our canoes alone. There are others out there; just like us.

I know that there are many different groups that have formed on Facebook and in forums, and that we all have friends and family, and medical professionals on our side; but in my opinion, meeting another person with CML is paramount.  

It was just last weekend, three years after being diagnosed with CML that I met another person, face to face, who is also living with CML. There is something very comforting about knowing you are not in your boat alone, that there are others, just like you; they share the same hopes and dreams, fears and side effects, AND they understand exactly what you are going through. They can relate on a level that only another person, with the same ailment, can.

Plain and simple, they “get you”!

Some days you just need a CML brother or sister to say, “I know what you are going through, I have been there and felt  the same way”, this not only reassures you, it also allows you see that they survived!  On the flip side, some days you will be the ray of sunshine for others.

Meeting others face to face really brought reality home; none of us are alone. We are a small group, only 25,000-ish in the United States. With any luck, more and more of us will be able to meet face to face; someday.

Novartis will be holding many Game Day Summits, across the United States, this year; these are free to CML patients and their caregivers. I highly recommend attending any of these summits and encourage you to bring your significant others’ with you. Meeting and sharing stories will beneficial to all who attend.

What is CML Game Day?

Team Ph+ CML Game Day is an Educational Program for Patients Living with Philadelphia Chromosome-Positive Chronic Myeloid Leukemia (Ph+ CML) and Their Caregivers

You will not only come out of these events smarter; you will also leave with a sense of validation, understanding, confidence, security and peace.

Trust me; meeting others with CML is totally worth the effort to attend a CML Game Day!

Registration, Locations and Dates

Monday, March 24, 2014

The Leukemia Slayer; One Awesome Kid!

For those of you that have not had the pleasure of following The Leukemia Slayer’s fight against leukemia, let me fill you in; Jacob was diagnosed with high risk lymphoblastic leukemia on December 2, 2010 and has fought his cancer battle with such style, grace and fortitude that he could put many adults to shame.

He is a beam of sunshine that has forged through leukemia to the other side and kicked cancer’s butt! He has slayed the beast, and while doing so has given so many others, inspiration, strength and courage. He never complains or says, why me and often ends his day with a quote. This is one of my favorites:

"Half the joy of life is in little things taken on the run. Let us run if we must - even the sands do that - but let us keep our hearts young and our eyes open that nothing worth our while shall escape us. And everything is worth its while if we only grasp it and its significance."

by Victor Cherbutiez

He has also become quite famous for being the Santa Slayer, a project which brings him much joy; he raises money and then purchases and delivers gifts, to sick kids in the hospital, during Christmas season. He also raises funds and awareness for childhood cancer research and I am certain that he will continue to do so. Heck, I wouldn’t be surprised if this young man grew up and found a cure for cancer!

His parents must be overjoyed that they have reached the end of Jacob’s treatments; he has suffered tremendously and deserves to move on and “be a kid”! I can only imagine how hard this has been for them and I so appreciate their willingness, to share their son, with the world.

Sunday, March 23, 2014

As a Person Living with CML; What DO I Want?

Living with a chronic cancer, or any other chronic disease for that matter, is difficult; and that is a fact. We have good days, we have great days; we have bad days and we have unbearable days. For me, one of the most difficult aspects of living with a chronic cancer is the effect that it has on my husband, my family and my friends.

We often complain that “no one” knows what we are going through, and that is a fact; we are the only ones that truly know just how bad our pain is, or how completely fatigued that we really are. No one will ever understand our fear, our concerns or the overwhelming burden that our disease places upon our soul, and the lives of everyone that care about us.

That being said, what do you do? What do you want?

Cancer and chronic disease support is readily available. For many, Facebook groups are a great place to vent, share triumphs, failures and fears. It is a great place to share information and to have a relationship with someone on common ground. Sometimes that is enough; other times, we need more.

We need something from the people in our everyday lives; often we do not even have a clue what that something actually is. Sometimes it is nothing more than validation; “I can only imagine how hard this must be for you, and I am sorry.” Sometimes it is more; like rubbing your hands or feet when they are completely numb, making dinner or even filling the bird feeder.

For me, it is really difficult to ask for help, especially from my husband who already has to bear so many things, because of my illness. I do not like to burden him, or anyone else for that matter. What I need to remember is that often, the people in my life feel helpless. They know that I have cancer, and they know that they cannot “cure” me. They do not know what to do, or what to say; yet they want to do something!
I need to remember this and I need to allow them to help me. I know that by allowing them to help me, I am also helping them. I am allowing them the opportunity to show their support, and their love; I know how good it makes me feel to help others, and by refusing help, I am taking that feeling away from them.

So now, having said all of this, how do I accomplish this monumental task of allowing others to help without becoming burden; a whining, sniveling, complaining, entitled cancer person? I suppose the first thing that I need to do is to make a list; a list of things that would really help me, and then I need to keep it available in the event someone says, “What can I do for you?”  Of course my standard answer is, “Nothing, but thank you.”  So I will have to learn to say, “Well, here is a list of a few things that would be helpful.”

I am not promising that I will be able to do this, but I am promising that I will try!

Here is a sample list of things to consider allowing someone to do; on occasion!

                               List of Favors
   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. Or even just one room of choice.
                     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.

As I write this, I realize how fortunate I am, to have people in my life that actually want to help. I want those people to know how grateful I am for their willingness, and how much a truly appreciate them.  I am blessed beyond belief and happy to be alive!

Thank you, Caregivers!

FaceBook: CML: A Place for Hope and Humor

Friday, March 21, 2014

Disturbed; On So Many Levels

I shall preface this by saying that this is my opinion today, and that we all make and live with, our own choices; I am not judging another’s choice, I am simply trying to comprehend it; and wondering if somehow, we have failed her.

This is a post that I do not even begin to know how to write; my emotions and thoughts are all over the board on this subject, which has many so many branches that I haven't a clue, where to begin.

I suppose that I shall begin with the trunk of the tree. I recently read that a CML patient has made a conscious decision to stop all treatment, due to side effects and quality of life, and to allow CML to “take its’ course” as she is tired of being a “burden” to her family, and fed up with living with the side effects from her treatment. She received many comments in support of her decision; I simply wanted to scream; “Don't give up, yet!"

Since I do not know her history, I cannot really weigh in on her decision; I just find it terribly disturbing and completely frustrating that with all of the advances in CML, there is not a regime that would allow this woman the opportunity to treat her CML, while allowing her an acceptable quality of life; a life that is worth living, and fighting for.  

As human beings, we typically will fight for our life no matter what the cost; we suffer extreme pain and illness with the hope of better days. As a CML patient, I continue to fight my fight, in the hopes for an actual cure; a day when daily medications are no longer a part of my life, side effects are gone and my body will rejuvenate after many years of treatment. I feel that with all of the advances that have been made in the field of CML during the past 15 years, that this is a possibility.

I want to tell this woman to “hang-on”;  to wait just a little longer, and to tell her that if she truly is so miserable that she is willing to die, that maybe one more doctor, one more new treatment plan will help her to be able to continue to have a life, while still fighting CML. I want her to try, one more time.

I am guessing from her despair, that she has probably tried, “one more time” many times and is at the end of her rope; this is where my frustration and inquisitive nature sets in; has she had good treatment? Has her medical team exhausted all possibilities? Have they addressed her side effects with compassion, and tried to find ways to combat them? Bottom line; have they done everything that they can? Have they exhausted every option available?

Has this woman considered that if she changes her mind, it may be too late?

There are other thoughts that also enter my mind as well, such as does this woman have support, or is she all alone in her struggles? Does she have a reason to live, does she have passion for life, or has she found herself at the bottom of a deep, dark tunnel? Is she suffering from depression or simply depressed from her situation? There are so many things that must enter into the equation that leads to the decision to allow oneself to die, that I cannot even begin to wrap my head around them; I cannot imagine giving up, or maybe I should say, giving in.

As I said before, I do not personally know this woman, yet I feel her despair. I want to stomp my feet for her, and to hold her close, and fill her heart with strength, and fight. If this is truly the end of her road, then I wish to fill her heart with peace. I cannot even begin to understand how she must feel and how she came to this decision.  I hope and pray that it is the right decision for her and her family, and that they will all be able to understand, accept and support her through this journey, as the road is likely to become very difficult to travel.

I wonder if she has considered the fact that as bad as things are now, being on treatment; that they are likely to become much worse, and to continue for years, prior to actually passing away. When you consider that life without treatment for CML may be better for a while, the side effects from the progression of disease will become more and more difficult to live with as the disease progresses.

No one knows how long this will take, but I don't imagine that it is an easy way out. My husband and I just returned from a CML Summit and learned of another woman that made the choice to stop taking her medication and to live her life. She has come to regret this decision, wished she had never made it and strongly advises against it; for her, it is too late. I am sharing this information for those of you that sometimes feel like throwing in the towel.

Attending the CML Summit was extremely uplifting and inspiring; meeting others with CML, for the first time, really solidifies the fact that we are not in this boat alone. If you are feeling like you want to jump ship, then I highly encourage you to attend a Game Day Event, sponsored by Novartis; you will be empowered by meeting other CML patients and gain tons of knowledge from Novartis's Oncology team. 

This brings me to the next branch on the tree; which is a lackadaisical approach to an individual’s treatment of their own, personal CML. Will this decision encourage others to follow suit and give up?

I shall save that one for tomorrow!

Thursday, March 20, 2014

Questions for Dr. Mauro at the NCMLS Event

Every now and then you run across someone that goes the extra mile. It appears that Dr. Michael Mauro is one of those guys. He will be answering questions at the CML Connection, in New York City on March 21, 2013.

The questions that I submitted are probably already on the list and may sound a bit confusing, but here they are:

One of my questions, and I won't be surprised that it is already on the list is this:
1. Given there are 3 options of treatment, Gleevec, Tasigna and Sprycel how does one determine the best frontline option?

I realize that patients existing medical history may play into this decision but I would like to know, that if a patient is otherwise healthy, which would be the best choice, and why?
My next questions:

2. Is there any data that would support a patient going off of a TKI, after reaching a negative response and then beginning treatment again, when their PCR rose to a certain point, kind of cyclically? In other words; take long breaks in between treatment, allowing an increase in BCR-ABL to increase and then treating it again?

As we all know, patients are diagnosed at all different levels of the disease, some with a low white count others with a very high white count, but both scenarios seem to be treatable. I guess I am wondering if one could live medication free, for a good part of the time and only be on treatment when the disease began to enter into a more dangerous phase. Kind of like treating a bacterial infection, not preventing one?

3. Does CML, or the use of a TKI make us more prone to other cancers? It seems that there are so many people on our CML boards that have other cancers, too.

4. Why aren't patients dosed by weight?

I will let you all of know the answers when I receive them!

Thank you Lynne Dagata for hosting!

Wednesday, March 19, 2014

CML is Like a Box of Chocolates!

We have all heard the saying, “Life is like a box of chocolates; you never know what you are going to get!” Well, I am here to tell you that living with CML is the epitome of that saying.

Up until three years ago, I was able to live my life in a very carefree manner; due to my overall good health, I never had to consider the consequences of my actions. I was able to make plans and keep them. I flew through every day like it was my last; enjoying every moment.

I ran my own business, homeschooled my youngest child and played with my grandchildren, often for extended periods of time. I enjoyed sharing the lives of my family and the many places that I travelled. I was footloose and fancy free and it seemed as though there was never an end to my over exuberant lifestyle.  I loved my life and took my good health for granted

That is, right up until I was diagnosed with CML, this came as quite a shock. You see, despite my many side effects, I just kept on going. I wondered why I no longer had the energy in my body to keep up with all of the plans in my head, but I just kept on going. It never occurred to me to stop, or even slow down.

Once diagnosed, I immediately accepted the diagnosis and began researching anything and everything that I could find, regarding CML. This was not the easiest task, as I was in the hospital and at the mercy of the nurses, until my husband arrived with my computer a few hours later.

The two of us put our heads together and decided that we would divide and conquer. We would take on this battle, and we would win! With my husband’s care and support I could conquer anything; together we discussed treatment plans and lifestyle changes. I was forced to slow down and he was left picking up the slack.

We learned more than we would have ever dreamed about cancer, treatment options and how your life is forever, changed.

I had to learn how to listen to my body and determine how hard I could push and when I really needed to stop, and rest. I had to accept the fact that I now had to consider my health and make choices that I really would rather not. I had to accept that even if I had made plans, I might have to cancel them.

I had to accept the fact that a night of dancing may land me down and out for several days, and keeping my grandchildren overnight suddenly became exhausting. My travel plans now include visits to my oncologist and everything I do now depends upon how I feel.

Despite all of the changes that I have had to make in my life and the fact that I now live with cancer, I am truly grateful to be alive. I am forever grateful for the advances that have been made in CML treatment and look forward to the day that there is a cure.

Cancer has taught me to slow down and appreciate every moment; it has led me to help others’ in their fight against this disease and allowed me the opportunity to meet so many wonderful cancer warriors. It has fueled an inner drive to in my soul to fight and not only survive, but to thrive, despite the obstacles in my path.

There are times that I still mourn my “old” life, but I am passionate about my new life and anxious to see where this journey will lead. It is my goal to continue to Dance My way Through Leukemia!

Tuesday, March 18, 2014

Novartis Summit

Up until a few days ago I had never actually met another CML patient face to face. It was through a summit, put on by Novartis that allowed me this opportunity. Novartis, the pharmaceutical company that manufactures Gleevec and Tasigna brought a roomful of CML patients and caregivers together to brainstorm; we talked about how CML has changed our lives, due to a drug (or many drugs) that now offer us a future, and how that drug manufacturer can better assist CML patients.

As we all know, our first and foremost source of information should come from our oncologist, but as we also all know, our oncologist does not always fill in, all of the gaps. Often we are left to our own devices and rely on information found on the internet, as well as other CML patients for guidance and advice. It seems to be Novartis’s goal to create information for CML patients that is accurate and current, and will help to fill this void.

They had many different thoughts and ideas; some good, some not so good; hopefully with the input of actual patients, they will be able to develop accurate and helpful material that will take some of the guess work out of living with chronic myelogenous leukemia.

I am grateful to Novartis for including me in their summit and grateful for the extra day that my husband allowed us to have, so that we could go into the city; my goals were to eat a piece of pizza, a cannoli and take a carriage ride around Central Park! Check, check, check!

I am also grateful to have met so many wonderful CML peeps, and their caregivers! It was truly a pleasure!
I will share more information as my brain and body recuperate! It was a very long four days ending with an even longer travel day; we had delays all across the country and then arrived at the airport at 1:30 am, Boise time, to a dead battery!

Traveling with CML is EXHAUSTING!

Saturday, March 8, 2014

How to Deal with Death from CML

Often when a person is diagnosed with cancer they feel scared and alone. Because CML is such a rare form of cancer the likelihood of running into someone during your everyday life, is unlikely. But because so many people are now connected through the internet and Facebook, we are able to reach out to others with CML for support and camaraderie.

This reaching out and connecting allows us to become a part of each other’s lives; we are able to share our fears and concerns, and our hopes and dreams. We can moan and groan and search for remedies to our side effects and talk about how forgetful we have become. We can discuss the latest and greatest news on CML, and we can celebrate all of our milestones.

Unfortunately, this week we have also had to share our grief as we lost one of our own. With the passing of MichaelCranford, our own mortalities are brought back to the surface. Some of us are walking down the same road as Michael, and others will walk down that road in the future. It is terribly sad and can also be frightening.

Michael’s passing reminds those of us living with CML that while there are great strides being made on the CML front; CML is still a rare form of cancer and can be deadly. Fortunately many, many of us are responding magnificently to our treatment and will live full, long lives; but for others, the road is not smoothly paved; it is bumpy.

This may be scary to many and should not be taken lightly, but it should not become our focus. For those of us “Living well, with CML” we should be cognizant of the seriousness of our disease, yet eternally grateful for our positive response to treatment. We should count our blessings and live each and every day to its’ fullest.

I know that sometimes this is easier said than done as we often suffer from side effects that make us want to crawl under the covers and stay there all day, but I’ll bet that Michael wishes that he was still around to experience side effects; and still around to endure these side effects until hopefully someday, a cure will actually be found.

We all must remember how great the strides in CML research are, and how great they are likely to be in the future. We can hope that someday they will develop a treatment with greater success and fewer side effects and yes, we must all hang on to the ultimate hope: a cure. They have come so far, I believe that we will live to see the day! I am an optimist and am always looking for the silver lining; right now that silver lining is a greater appreciation of my life, and the opportunity to meet so many wonderful people.

In the meantime, it is our job to adhere to our treatment and to live the healthiest lifestyle that we can; and yes that means our diet and exercise! We need to feed our bodies a plant based diet, exercise our lungs, heart and muscles, and get out and breathe some fresh air. For me that means getting this posted and dragging my butt for a walk around our neighborhood!

In closing; the internet has allowed us to connect and share our lives, and to meet a special CML warrior; Michael Cranford. In his honor we should all live the best life that we are capable of. I offer blessings to you Michael, and condolences to your family.

You will not be forgotten.

Thursday, March 6, 2014

With a Heavy Heart

Today is a sad day; Michael Cranford has lost his battle with Chronic Myelogenous Leukemia. I do not have complete details but I do know that he did not respond to oral therapy and underwent a bone marrow transplant a little over a year ago. He fought the uphill battle, until the bitter end. He was a warrior!

Losing Michael is a grave reminder to those of us living with CML to be diligent in our treatment and live the healthiest lifestyle that we can. It also should encourage us to support researchers in their continued quest of a cure for CML. We must all remember that we DO have cancer and that we should spend each and every day, living our best life.

Michael leaves behind a wife, Michelle Cranford and a daughter Becca. If you would like to offer condolences you may do so here:

Michelle Cranford
111 Perry Lee Drive
 Hattiesburg, MS 39402

Also, Michael had a Caring Bridge page if you would like to read more about his story.

Tuesday, March 4, 2014

Self-Advocacy is Not Easy; But Oh, So Necessary!

Recently, and for the past five years, I have spoken out about self-advocacy in medical treatment. This has all stemmed from my unfortunate reaction to Cipro; an antibiotic in the Flouroquinolone family. It has damaged my body beyond repair and I speak out in the hopes of preventing others from having to live in chronic pain.

I also hope to alert people that have been diagnosed with unexplained pain, such as Fibromyalgia, to the possibility that their pain may stem from this class of antibiotics, Cipro, Levaquin and Avelox (Ciprofloxen and Levofloxen) so that they do not continue to take these drugs when prescribed, allowing more damage to their body.

I recently read that these drugs may have a tolerance threshold, which means that you may have been fine taking them in the past, and that when you reach your own tolerance threshold, your body may then become damaged. In other words, you can only tolerate these antibiotics for so long before they get you!

This being said, it is often difficult to question or refuse the advice of a medical professional; after all, you are paying them to heal you. You go to them because you are ill, so it is not easy to question their authority, or their treatment methods. We all assume that they know more than we do; and often, they do.

However, many medical professionals have no idea just how damaging Cipro and Levaquin can be, and part of the reason for this is simply because not many people ever correlate their pain to the use of an antibiotic. In many of our minds, antibiotic side effects include nausea, diarrhea, dizziness, hives and difficulty breathing; not crippling pain. So if we do not realize that our pain is from an antibiotic, then we do not report this to the FDA or to our physician, so the issue just snowballs.

Now, when we are sick, especially in a hospital, we are not always thinking as clearly as we would normally think, and when the nurse comes in and hangs a bag on the IV pole, we rarely even know what it is. We are at their mercy; we typically trust that they know what they are doing; and most of the time they do.

What we all must realize and accept is that doctors, nurses and other medical professionals are simply human beings; just like you and me. They are performing their “job” when they are treating us. I am certain that they can have bad days, have personal problems that follow them to work and may be sleep deprived, just like you and me.

The most important thing that we all need to remember is that at the end of the day, we live in our own bodies and that we must do anything and everything that we can to stand up and take charge. Mistakes are made, and extremely powerful antibiotics are over prescribed; this happens on a daily basis. When we are ill and unable to self-advocate, then we need someone to do it for us. We need to be certain of our treatment and understand what we are taking, what the dosage is and why. We must not take drug warnings, especially Black Box Warnings lightly. We must stand up for what we believe is right for our own bodies.

Living with CML forces us to step up to the plate and to learn everything that we can about our cancer and our treatment. Not doing so could be detrimental to our health.

Please take this seriously; I do not wish Cipro or Levaquin pain on anyone, and I do not wish anyone to be improperly medicated during treatment. I have twice received the wrong strength of medication in the mail which would have led to an overdose.

Be careful out there; It is a jungle!!

Monday, March 3, 2014

CML Can Be a Beast; Bone Marrow Transplants Can Be Harrowing

I have spent the better part of today being grateful that my chronic myelogenous leukemia is currently being controlled by an oral medication. This medication is a tyrosine kinase inhibitor, also known as a TKI. For many of us that are diagnosed with CML, this medication is literally a life saver; this life saver comes with its’ own risks and complications, but despite the risks and side effects, it allows many of us to live a full life.

Not everyone that is diagnosed with CML is as lucky as I am; there are many people that become intolerant to these medications, thus allowing CML to wind its’ ugly head, back into control. A little over a year ago, a young man that I befriended through a Facebook CML Group, became intolerant to these medications.

This left him no choice but to undergo a bone marrow transplant. I know that when I was first diagnosed with CML, I asked my oncologist why, if I could be “cured” through a bone marrow transplant, I wouldn’t go ahead and have a BMT, instead of taking toxic medication for the rest of my life. He replied that the risk of a BMT far superseded any risks that I would be taking by staying on the preferred route, of oral TKI’s.

He told me to be diligent in taking my medication and to hope that I never had to cross the BMT road, but if that time came, we would cross that bridge when we got there. He believed that it was the best choice, allowing me the best quality of life, while living with a chronic cancer.

My friend, on the other hand, had that choice made for him when he failed treatment.  This year has been a very difficult year for him, and his family. He is currently in ICU with more complications post bone marrow transplant; he has not had an easy time of it. I understand that he is in critical, yet stable condition and needs our prayers now, more than ever.

He has been on my mind, and in my heart  all day and I cannot shake this feeling of helplessness; there is nothing that I can do ; except pray, and pray I will; but what I really want to do is kick and scream and look CML in the eye and say, “Hey, give him a break! He has fought the fight, tooth and nail; he gave the TKI’s a shot and suffered through a bone marrow transplant, so give him a break. Allow this young man to heal”
 Unfortunately a bone marrow transplant does come with many risks, but I would certainly like my friend to recover from these complications so that he can get back to living his life, with his family.

God Bless you, My Friend.

Saturday, March 1, 2014

CML and Noise

I have always been a bit sensitive to excessive noise but since being diagnosed with chronic myelogenous leukemia it seems as though I am even more sensitive to noise than I used to be. The noise can stem from something as quiet as a humidifier, to a loud, constantly barking dog.

Oddly enough, everyday noises do not always irritate me, but when they do, I often feel like running for a soundproof room. Sometimes I can hear my own heartbeat,  and when it is present, it seems as though all other noises are amplified and crazy making.

I find that any extra background noise has the potential to make me irritable, as well as give me a headache. Noises that I used to be able to tune out often sound like they have been turned up to their highest volume. I find myself more and more often sitting in a room with no background noise whatsoever; no music and no television.

I wonder if it is age, leukemia or medication related!

Quiet Please!

Bricks for the Brave!!