Friday, February 28, 2014

Navigating Through Cancer; CML

One of the most difficult aspects of being diagnosed with cancer is determining your course of action. Once you have gotten over the initial shock, you must accept your diagnosis and jump on the train; the train to conquering your disease and regaining your health. You will quickly realize that for the moment, your life has come to an abrupt, about face. Simple everyday tasks may become monumental and you will find that your quest for knowledge may be insatiable.

This is not the time in your life to sit back and let others take charge; it is time to step up to the plate and become an expert in your disease, and your treatment. This means finding an oncologist that specializes in your type of cancer; one that you feel comfortable with, and one that you literally trust with your life. You should research medications; how they work, what their side effects are (both long and short term), and whether or not they are the right choice for you.

Physicians often prescribe the same medications to all of their patients; they are the ones that they are most familiar with but may, or may not be the right choice for you. You will want to find a doctor that treats you as an individual, not as a “standard” patient, with cancer.

Understanding any special precautions and side effects from your treatment can be very important and should not be taken lightly. Of course, one might expect that you will get all of this information from you oncologist, but that is not always the case.

You should research your type of cancer until you understand what it is, and how it affects your body. You should also research how your treatment actually works, and how it is expected to cure or control your cancer.

You should know and understand what the standard tests and procedures that monitor your CML are, and that they are being performed at appropriate stages of your treatment. You should also make certain that you understand what the results of your tests mean, and how they pertain to you and your treatment.

You may also wish to reach out for support; there are many support groups available both at your local hospitals and cancer treatment centers, as well as on the internet. Imerman Angels offer one-on-one support; their free service will actually match you with a person that is going through the same things that you are.  

If you are looking for a more casual place, one that you can go to anytime day or night  to share your questions, fears and frustrations with, then Facebook rocks! You will find open and closed groups, as well as gender specific groups; knowing that you have somewhere to turn can be of great comfort.


As time goes on the navigation process will become easier and easier; you will begin to understand medical lingo that you have never heard, and you will gain a wealth of knowledge that will allow you to become an active participant in managing your treatment,  and more importantly, in regaining and living  your life.

Monday, February 24, 2014

That Which Does Not Kill Us; Makes Us Stronger

We have all heard the saying, “What doesn't kill us, makes us stronger.” This is so true, on so many levels. When a person is diagnosed with cancer, there are so many variables that come into play amidst their fight to live, that when a person does succumb to their disease; it isn't always the disease that takes their life.

Complications often arise during and after treatment and may actually be the primary cause for death, but the fact of the matter is, if the person had not undergone that particular treatment, the final result would have ended in death, despite the treatment that gave them the chance, of life. Hence the saying; I survived my treatment, and now I will live.

When you have chronic myelogenous leukemia, you have a form of blood cancer that is chronic; meaning it is never cured and it never goes away. The upside to this type of cancer is that as of fourteen years ago, it became treatable; prior to that time, people rarely lived for five years, with this diagnosis.

Those of us diagnosed with CML today, have a much brighter future than those diagnosed with CML fifteen years ago. The “Ottawa Citizen” recently published an article stating that there is a possibility of heart damage to patients that have been on Gleevec, long term. This is not a surprise to me and I believe that there will be many more long term side effects that will become apparent, with the longevity of use, of these TKI’s.

From the very beginning of my treatment, I have questioned the “long term” side effects of the highly toxic drug that I must take, in order to live. I understand that this data is not available, simply because it does not exist; no one has taken these drugs “long term”; in the big scheme of things, they are “new” drugs.

I understand that I am a bit of a guinea pig, but given my circumstance I have no choice if I choose to fight the good fight, and live. I am grateful for these drugs despite their side effects, because if they did not exist, then neither would I.

I do however; feel that with the discovery of these long term side effects comes the responsibility to proactively combat them, in any way feasible. Hopefully the manufacturers of these drugs will come up with a newer, better and less damaging medication as these long term effects come to light, but in the mean time we should be certain to see that we are properly monitored, and more importantly that we are living a healthy life style.

Since there is speculation that Gleevec may cause heart damage, wouldn't it stand to reason that if we proactively worked at keeping our heart healthy, then we would be ahead of the game?

Here are a few suggestions that will lead to a healthier heart:

1.     Manage your diet and weight.
2.     Get plenty of exercise.
3.     Do not smoke.
4.     Manage your cholesterol levels.
5.     Manage your blood pressure.
6.     Learn to manage stress.

There are many ways that we can live a healthy lifestyle, and being that we must take these medications “long term” living healthy should be high on our priority list.

That being said, we must realize that ALL medications have side effects; some worse than others and some that may cause permanent damage and even death. But without the discovery and use of TKI’s, our certainty would be death.

Scientists are making great strides in this field; there are now studies being conducted where patients that have maintained PCRU are actually being taken off of all TKI’s. There may come a time when many of us will be able to be drug free again.

It is also my belief that because CML patients are now living, they are able to collect and study data that will someday lead to a cure. I am certain that they will also be working to alleviate as many long, and short term side effects from our medications, as possible.  

In the meantime, it is my belief that we should live the healthiest lifestyle we possibly can, monitor and report our side effects to our oncologists, and continue to research and read everything that we possibly can, that is related to CML.


Here is to Living Well, with CML!!

Saturday, February 22, 2014

As Printed in Ottawa Citizen: Life-saving cancer drug can also cause heart damage: Study

This article was written by Tom Spear, from Ottawa, and published in the Ottawa Citizen

It brings the long term use of Gleevec to light and sheds insight into possible heart problems; the more information that we, as CML patients have, the better armed we are, in fighting our disease!

OTTAWA — Patients who take one form of long-term chemotherapy pill should have regular heart monitoring in case the drug causes side effects, a University of Ottawa study recommends.

The drug imatinib “is toxic to the heart and causes overt damage to older hearts,” says a team led by Mona Nemer, a geneticist and vice-president of research at the University of Ottawa.

Her team is not recommending that doctors stop using the drug. But she said patients may need treatment to avoid heart trouble.

Imatinib is widely known by the brand name Gleevec. Approved in 2001, it was the first drug to “switch off” cancer cells while keeping healthy cells intact.

Patients may feel stressed or may not sleep well and not realize there’s a heart problem, Nemer said. “But these could be actually some signs of cardiac stress and dysfunction and they should consult their physicians.”

“It’s actually very effective against cancer. So the idea is not to stop treating patients with this. It’s to make sure there is cardiac monitoring that is taking place,” she said.

“In the case of this particular drug, it’s a lifelong treatment. ... The problems on the heart happens slowly, so it may take some time before it manifests.”

Imatinib was first used only for chronic myelogenous leukemia, but has expanded to use in prostate, lung and gastrointestinal cancers.

Ironically it was the success of imatinib that led to understanding of its problems, Nemer said. That’s because the heart trouble only shows up in people who survive cancer in the long term.

“We don’t want to cure the cancer and then have them die of heart attacks.”
The study by Canadian and French scientists was done in mice. Human studies are likely to follow, because the researchers need details of how people are affected.

“It’s unclear” whether a person who has heart trouble can safely stop taking the drug, she said.
Nemer’s group learned that imatinib interferes with a protein that the heart needs to keep its muscle cells alive. If these muscle cells die it can lead eventually to heart failure.

The effects are greatest in older patients.
A release from the university says that “chemotherapy-induced heart failure is increasingly being recognized as a major clinical challenge.”

The Ottawa Hospital has had a special program in cardiac oncology since 2008 specifically to deal with the effects of chemotherapy on patients’ hearts.

The study has been published in the European Journal of Heart Failure and funded by the Canadian Institutes of Health Research.
tspears@ottawacitizen.com
twitter.com/TomSpears1
© Copyright (c) The Ottawa Citizen

Friday, February 21, 2014

Chronic Pain Presents a Quandary; Could Cipro be the Cause?

For many people, chronic pain is a part of their everyday life; for those that have never experienced chronic pain, being around those of us that live with it, is probably frustrating and annoying. Often, the pain stems from either a chronic medical condition, an injury or often from side effects to medication.

For me, it was a medication; an antibiotic commonly prescribed for urinary tract and sinus infections, it is also often given as a precautionary measure, after surgery; often surgery that is caused by the drug itself. This antibiotic is called Cipro and it is in a class of drugs known as fluoroquinolones. Levaquin is another commonly prescribed fluoroquinolone.

Six of these pills caused a rupture of a tendon in my big toe; this injury took eleven months to heal. I did not correlate this injury to Cipro. My second encounter with Cipro, one year later, nearly crippled me; after only three pills, 500mg each, I was in such excruciating pain that I could barely put my feet on the floor, bend my hips, knees or ankles and could not stand, sit or lie down without extreme pain.

This pain came on suddenly and did not subside; I did not know what was wrong with me, but the thought of blood clots led me to the internet where I discovered my pain was from the antibiotic that I was taking. I was shocked, scared and angry. I followed the advice to seek immediate medical attention and was told, over and over and over, that the medical professionals and pharmacists that I sought advice from, had “never” seen this reaction before. (Despite the Black Box Warning and many lawsuits)

They were unable to treat me, and unable to tell me whether or not I would recover. This was the only time in my life that I truly did not wish to continue to live; the pain was a pain that never subsided and in addition to the extreme, throbbing pain, I began to experience extreme sensitivity to light and touch; my brain no longer worked properly; it was something like chemo brain fog, only this fog was caused by an antibiotic. The pain in my body was not only inside my muscles, joints and tendons, but all over my skin as well; my body was not my body.

I literally went from a perfectly healthy, normal human being, to a person wracked with pain in the blink of an eye; I thought that my life was over. I could literally do nothing; I couldn't walk, dance, sit or stand. I just existed; counting the minutes till my next dose of Ibuprofen, hoping that it would be the one that would give me some relief.

 Eventually the pain became manageable; I began to be able to sleep for five hours in between doses of Ibuprofen. I began to dance again, clad in braces on my knees and ankles, and tape on my feet; it hurt like hell, but was worth it! I began to adjust to my new life; a life living in chronic pain. I tried really hard not to complain and to do the things that I had once done, but the fact of the matter was; I was slower and could not keep up, every step I took hurt. Living in this chronic state of pain is fatiguing and depressing. It weighs heavily on everything that you do, and affects everyone around you.

No matter how hard you try to put on a happy face, the underlying dark circles and winces of pain seen on your face are recognized by those closest to you. You begin to feel like a failure, as your body is failing your spirit. It is not a happy state in which to live.

A year or so later, I was diagnosed and treated for leukemia with a chemotherapy drug called Cytarabine. This chemo treatment seemed to alleviate my pain. I had not felt so good, pain wise, in a really long time. I realized that having cancer actually had a silver lining; I felt that the trade-off was worth it!  I would rather have cancer and be pain free, than to live in chronic pain. That is how bad the pain was.

Fast forward three years, the pain has returned; not as constant and not as extreme, but very similar. So the quandary begins; is the pain from the original poisoning caused by Cipro? Or is it new pain caused by Sprycel? OR is the Sprycel exasperating the Cipro side effects, or could it be from the leukemia? Who knows, and with so many variables chances are slim that I will ever pinpoint the culprit.

The one thing that I DO know is that I will never, unless on my deathbed, take another fluoroquinolone again. It is not worth the risk; trust me on this one.

I have had many, and I mean many people, come to me after the fact; after they tore their Achilles or rotator cuff, after their pain was so extreme that they did not get out of bed for six months and still could barely walk; after they were diagnosed with Rheumatoid Arthritis or Fibromyalgia, and say, “Oh, my God; Yes, I was on Cipro, or Levaquin, when this happened to me.”

Do not be fooled into thinking that these are safe antibiotics that should be used frequently; the side effects are not one in a million; they are rampant. If you are diagnosed with RA or Fibro, check your medical records diligently, for use of these antibiotics.

 There is nothing you can do now for the damage that has been done, but you CAN prevent further damage to your body. It floors me that orthopedic surgeons or Fibromyalgia specialists, never ask their patients whether or not they have taken these drugs, prior to surgically repairing ruptured their tendons, or diagnosing Fibromyalgia. Often salt is added to the wound as they continue to prescribe these very drugs, post op and for infections. Are they intent on creating a revolving door of patients?  Or is it purely denial, ignorance or disbelief? Whatever their reasoning, this neglect makes me ill.

Please do your due diligence when taking a medication; Cipro is a powerful antibiotic that does have its’ place; but its’ place comes as a last resort medication, NOT a first line of defense.


There is no quandary here; do not take a fluoroquinolone (Cipro, Ciprofloxacin, Levaquin, Levofloxacin) unless it is a last resort!

Monday, February 17, 2014

Memories!

For Valentine’s Day, my husband got me the most AWESOME gift on the planet; memories! He got me one of those very cool picture frames that continually display a slideshow of your photos. This morning was the first chance that I had to actually set it up, and in doing so, I began looking at all of the photos that I have on my laptop, and IPad.

What I discovered was a treasure trove of memories; photos of all of the places we have gone, the things that we have done, and most importantly, photos of friends and family. It was such an awesome walk down memory lane that I still cannot get the smile off of my face!

Of course there are photos of sad times, like when my father passed away; and scary times, like was I was first diagnosed with leukemia  too; but looking back at the past allows me to see how great the journey has been; how much I have accomplished and how far I have come.

My life thus far has been full. I must remember that in order to appreciate the great days, we must have some bad ones, and despite the fact that some days may be bad, we are still making memories. Planning for the future is not a bad thing, but looking back and appreciating everything you have experienced just may bring a smile to your face, too!


Thanks Honey, for such a great gift!


Saturday, February 15, 2014

Love, Desire and TKI's

Warning: This may be too much information for many.

Sex is everywhere; on television, newsstands, talk shows, the radio, billboards, the books we read and of course, the internet. Where it does not seem to exist, is in the bedrooms of those of us being treated for chronic myelogenous leukemia; with TKI’s.

It is understandable to experience a lack in libido when you are first diagnosed with cancer; your focus quickly moves from your everyday, normal routine to, “Oh, my God; I have cancer!” This new reality sneaks in and takes over. You are now focused on staying alive; you must research your disease, find a great doctor, begin treatment and start fighting for your life. Sex somehow finds its’ way to the bottom of your priority list. (Or so I have experienced, and been told)

Eventually you settle into your new normal; you begin to pick up the pieces and start putting them back together; your laundry is no longer monumental, meals begin to appear on the table, there is actually food in the house, and the house is beginning to look like home again. You begin to take a little more time fixing your hair, getting dressed and you may even venture out in public.

You begin to live again, only your life now, is not the same life that it was prior to your cancer diagnosis. Something deep down inside of you has changed; you do not know how to identify it, you do not know what it is, or what to do with it. Essentially, you are no longer sure exactly “who, or what you have become.”

You begin to remember you that you once had a romantic relationship with your significant other and that they play a much more important role in your life than just your cheerleader, and main support.  You will likely long for the intimacy that you once shared and wonder where your desire has gone. You may also notice changes in your body.

Depending upon your age, you may chalk up many of these changes to menopause; however for me, I had a full hysterectomy many years ago, so the vaginal dryness and tightening was a new phenomenon. It came on quite suddenly and was extreme; not only had my sexual desire disappeared, I was also in pain. This pain was not only during intercourse, but also throughout the day.

After speaking to my gynecological oncologist she prescribed a low dose, vaginal estrogen to be used twice a week; this seems to have helped with the dryness which was so severe that I had actual cracking and bleeding. She also suggested a silicone lubricant called PINK; this is a great product.

Despite her prescription, she did not seem overly interested in my major complaint; the belief that my treatment for CML was causing me to have a lack of desire, for sexual intimacy. My CML oncologist did not seem to be interested, or concerned either. They both sort of listened and then simply glossed over my concern; for them it is no big deal; for me, it is a HUGE deal!

So now that the elephant is in the room, I want to say that the lack of sexual desire has nothing to do with love. For significant others, living with a partner that is fighting their battle with CML, please try to understand that it isn’t that we no longer love you, or find you attractive or desirable; it is that our life saving medication has stolen yet another part or our lives’ from us.

Sometimes the lack of sexual desire is from fatigue, sometimes from pain, sometimes from the overall icky feeling we get from the drug, and sometimes from our own lack of connection, to our own selves. I know that it may be difficult to understand, but TKI’s have a way of dimming our “spark”; they come in and rob us of who we used to be. We are forced to redefine ourselves and find a way to re-establish our relationships and our lives’.

With any luck, as time goes on this heartbreaking side effect will become recognized, accepted and addressed by the medical field, they will take it seriously, and find a solution. (Of course this is probably in my wildest dreams, but I am hopeful!)

In the meantime, I will continue to nurture both myself and my husband, because the fact of the matter is; my sexual desire IS still there, it is just subdued by Sprycel and needs to be brought to the surface, for a breath of fresh air!

I hope that this post lets you know that you are not alone, not a freak of nature and not imagining this side effect, although undocumented, I believe that it is real.


Happy Valentine’s Day!

Friday, February 14, 2014

Valentine’s Day: Let’s Hear it for the Caretakers!

Five years ago, after a six week, long distant relationship, Joe and I spent our first Valentine’s Day together; three years ago I was released from the hospital; needless to say, Valentine’s Day is a pretty special day. For us it does not mean roses, chocolates and hearts, yet it is a reminder of our committed love and devotion to each other.

Five years ago we would never have dreamed that our love story would include a cancer diagnosis, early on in our relationship. I remember picking up the phone to call him, to tell him the news. I remember thinking that I was making a “make-it” or “break-it” phone call. I wondered how he would take the news and what he would do.

For me, I had no choice; I HAD Leukemia, I had to stay and fight the battle; he did not. He could simply choose to walk away; to begin a new search, for a healthy partner. One that did not have cancer, medical bills and treatments that would likely change the woman that he had fell in love with, in ways that neither one of us could anticipate. He could start over fresh; without the burden and heartache that comes along with watching your significant other, suffer. He could walk away from the possibility that I might die.

Fear of the unknown is a scary thing, and yes, anytime you begin a new relationship, have a child, get a new job, buy a house, etc., there is an element of fear and the unknown, but when you hear the words that your once healthy body now has cancer, that fear is elevated to a higher level. It is a fear which involves life and death; and it is scary.

Since I was diagnosed two hours from home, and went straight to the emergency room to be hospitalized and treated, it took Joe several hours before he reached my side. I remember hearing the curtain in the ER cubicle move yet again; I looked up and saw his face; it was a bittersweet moment for me and I began to cry. He was there, he was staying and he was going to love and support me to the best of his ability, forever.

I remember him telling me, that while he was driving to the hospital that he did not know how long I was going to live, but that he was going to figure out how to help me complete my “Bucket List”, and while that may sounds like the sweetest thing in the world, and it is, the fact of the matter is; HE IS, “My Bucket List!” He was, and still is what I want most in this world; a kind, loving man, one that I can share my hopes, my dreams and yes, even my fears with. One that I hope to spend all of the rest of my living days with, one that I can have by my side to share whatever time we both have left.

He is one of the “good guys”, the ones that put others needs in front of their own; one that does not run from complications and unforeseen events. He is one that has stuck by my side despite my constant whining about this or that hurting, about being tired or nauseous, cold or hot or even just plain emotional, and stupid.
He has put up with hours of my speculations and rants about medications and medical errors. He listens to my indecisiveness and my fears, my frustrations and my confusion; he has even begun to pick up my new, chemo brain lingo!

He deals with my hair falling out all over the house, even though it often ends up in his dinner; my bumpy skin, my aching bones, muscles and nerves and even my total lack of focus. He understands that I am not the carefree, independent, self-sufficient woman that he fell in love with, and loves me anyway.

I admire the fact that he takes all of this in stride, even though I know that my illness is taking a toll on him, too. So often people ask me how I am doing, and of course they ask him how I am doing; it is always all about me. If I were him, I would be pretty sick and tired of ME!

I must remember that having cancer affects both of us; it stops us from going on a walk around the neighborhood because I have pleural effusion and do not have the energy. It often prevents us from dancing, due to pain: it affects my overall energy level so laundry, cooking and cleaning often take a back seat, and falls in his lap. Last week we missed a movie date because I did not feel well. It creeps in and affects practically everything that we do; and it doesn't just affect me, it affects us both. I must remember this and be more sensitive to his needs.

I must remember that cancer does not only scare and frustrate me; it scares and frustrates him, too. I cannot imagine what it must be like to be him; if the tables were turned, I would be a wreck. Sometimes I think that having cancer is easier than being the caretaker, the one that has to deal with it all, and yet remains so strong.
I applaud, admire and appreciate my husband more than I can say, and love him more with every passing day. He is my rock, he is my everything, and I am going to try and make this year less about me, and more about him!

Let us all give our caretakers a Big Hand and Thank You!

Happy Valentine’s Day, Honey!


I Love You!

Thursday, February 13, 2014

Love, Desire and TKI’s

Warning: This may be too much information for many.

Sex is everywhere; on television, newsstands, talk shows, the radio, billboards, the books we read and of course, the internet. Where it does not seem to exist, is in the bedrooms of those of us being treated for chronic myelogenous leukemia; with TKI’s.

It is understandable to experience a lack in libido when you are first diagnosed with cancer; your focus quickly moves from your everyday, normal routine to, “Oh, my God; I have cancer!” This new reality sneaks in and takes over. You are now focused on staying alive; you must research your disease, find a great doctor, begin treatment and start fighting for your life. Sex somehow finds its’ way to the bottom of your priority list. (Or so I have experienced, and been told)

Eventually you settle into your new normal; you begin to pick up the pieces and start putting them back together; your laundry is no longer monumental, meals begin to appear on the table, there is actually food in the house, and the house is beginning to look like home again. You begin to take a little more time fixing your hair, getting dressed and you may even venture out in public.

You begin to live again, only your life now, is not the same life that it was prior to your cancer diagnosis. Something deep down inside of you has changed; you do not know how to identify it, you do not know what it is, or what to do with it. Essentially, you are no longer sure exactly “who, or what you have become.”

You begin to remember you that you once had a romantic relationship with your significant other and that they play a much more important role in your life than just your cheerleader, and main support.  You will likely long for the intimacy that you once shared and wonder where your desire has gone. You may also notice changes in your body.

Depending upon your age, you may chalk up many of these changes to menopause; however for me, I had a full hysterectomy many years ago, so the vaginal dryness and tightening was a new phenomenon. It came on quite suddenly and was extreme; not only had my sexual desire disappeared, I was also in pain. This pain was not only during intercourse, but also throughout the day.

After speaking to my gynecological oncologist she prescribed a low dose, vaginal estrogen to be used twice a week; this seems to have helped with the dryness which was so severe that I had actual cracking and bleeding. She also suggested a silicone lubricant called PINK; this is a great product.

Despite her prescription, she did not seem overly interested in my major complaint; the belief that my treatment for CML was causing me to have a lack of desire, for sexual intimacy. My CML oncologist did not seem to be interested, or concerned either. They both sort of listened and then simply glossed over my concern; for them it is no big deal; for me, it is a HUGE deal!

So now that the elephant is in the room, I want to say that the lack of sexual desire has nothing to do with love. For significant others, living with a partner that is fighting their battle with CML, please try to understand that it isn’t that we no longer love you, or find you attractive or desirable; it is that our life saving medication has stolen yet another part or our lives’ from us.

Sometimes the lack of sexual desire is from fatigue, sometimes from pain, sometimes from the overall icky feeling we get from the drug, and sometimes from our own lack of connection, to our own selves. I know that it may be difficult to understand, but TKI’s have a way of dimming our “spark”; they come in and rob us of who we used to be. We are forced to redefine ourselves and find a way to re-establish our relationships and our lives’.

With any luck, as time goes on this heartbreaking side effect will become recognized, accepted and addressed by the medical field, they will take it seriously, and find a solution. (Of course this is probably in my wildest dreams, but I am hopeful!)

In the meantime, I will continue to nurture both myself and my husband, because the fact of the matter is; my sexual desire IS still there, it is just subdued by Sprycel and needs to be brought to the surface, for a breath of fresh air!

I hope that this post lets you know that you are not alone, not a freak of nature and not imagining this side effect, although undocumented, I believe that it is real.


Happy Valentine’s Day!

Wednesday, February 12, 2014

Sprycel Dosage Update: In Search of the Holy Grail!

Wading through the ups and downs and ins and outs of a chronic cancer can often be challenging. I have been on Sprycel for three years; I would say that given the risks and complications of living with CML, I am doing quite well.

The pain issues are the most difficult to deal with, but since I have had two consecutive PCR tests that were negative; I am reluctant to jump ship. I am hoping to maintain the negative status for two years as there are trials for going off of Sprycel, after a two year period of being PCRU and I am approaching the one year mark!

That being said, I am still in search of the Holy Grail! I want the lowest dose possible; I want to maintain PCRU, which means holding the cancer at bay, while minimizing the side effects. So, for the past month, I have been taking 70 mg of Sprycel, with Bragg’s vinegar, 7 days a week. This past week the pain in my feet has escalated, so I took a two day break.

Because of this two day break, I decided to try 100 mg, 5 days a week, with a two day break. My oncologist would prefer that I stick with the 100 mg, 5 days a week vs 70 mg 7 days a week as he believes that CML responds more favorably to the higher dose than the consistent lower dose. He also believes that my body will benefit from the breaks which will help to alleviate my side effects, including pleural effusion.

I am on day three of 100 mg and I hate to admit it but the numbness in my hands is returning; that disappeared on 70 mg. My hip muscle and joint pain is also returning. I have two more days prior to my next break; it will be interesting to see what happens.

My next PCR test is in April; my hope is that it will still be negative, and that I will be able to go to 70 mg, 5 days a week. Only time will tell.


It is a constant balancing act!

Saturday, February 8, 2014

Third Year Cancer-versary: Questions Answered

I have never been one of those people that remember the date, and often the time, of events. I remember the event, just not necessarily when it happened. I am, not really sure why that is, but maybe it is because I am so focused on living in the here and now, that committing dates and times to my memory bank is not high on my priority list. During a special moment in time, I become so immersed in what is going on, that I never ever really think about when it is happening.

My cancer diagnosis is a little bit different; I not only remember the date, I remember precisely where I was standing and exactly what was said. I remember answering my phone and hearing Dr. Han say, “Michele? This is Dr. Han, and I do not know how to tell you this, but you have leukemia. I have arranged for an oncologist to meet you at the emergency room and you need to get there as quickly as possible.”

Of course, after this statement there were many questions and a lengthy conversation, but I will never forget that moment, or that date. I believe that the reason I remember the actual date was because I had had a doctor’s appointment the day before, on the 7th of February, and on the 8th, I was in the hospital, with “February 8th” written everywhere; I had to sign papers and date them, and the date was posted on everything from IV bags to white boards. This date was emblazoned on my brain.

That date, three years ago, was a day full of unknowns; Was I going to die? If so, when? What is leukemia? Will they be able to treat it? How will I tell my children? How will I tell Joe? Will Joe leave me? How can I even accept the fact that I may not see my grandchildren grow up? Will I need a bone marrow transplant? Will there be a match? Will I always be sick? Will I lose my hair? When will I be able to dance again? And the Biggest question of all was, “What am I going to do?”

Well, three years down the road I have answers to all of my questions; Yes, some day I am going to die. When? Only God has that answer. Leukemia is a blood cancer with many different types; mine is rare, it is chronic and never goes away. Yes, they are now able to treat it, although 15-ish years ago, that was not the case. I told my oldest child on the phone, and Facebook did the rest; not a “good thing.” I called Joe and he was by my side within three hours; he is still here. My oldest grandchild just turned eleven, and the youngest will be three in May. Someday I may need a bone marrow transplant, but for now, my miracle drug is doing its’ job. Hopefully there will be a match, if I need one.

I will always have leukemia, but I won't always be sick; side effects can be brutal, but it beats the alternative. Much of my hair fell out, but it was temporary. Eight weeks after lying in a hospital bed, I was back on the dance floor competing. Talk about stubborn and not wanting to let cancer get the best of me!

And now for the biggest question of all, “What am I going to do?” Well, I am going to do whatever I want! I am going to continue loving my family and enjoying my life. I will continue to research the newest, latest and greatest advances for leukemia, and I will continue to dance my way through this disease.

I am also contemplating taking the advice from so many, and revamping this blog into a more user friendly book. I have been encouraged to do this for several years, but I did not feel as though I had enough history, and understanding of this disease to do so, until now. I feel as though I finally have a very clearing understanding of exactly what “Dancing My Way Through Leukemia” means, and I plan on doing just so; for many decades to come.

My journey began with a white blood count of 384,000 and my previous two PCR tests have been negative.

Cheers to me and my three year cancer-versay!

This video is 8 weeks after I was released from the hospital!

video

Friday, February 7, 2014

Blog Topics: Your Chance to Choose

It has been almost three years since I started this blog; it was initially conceived in order to keep my family and friends updated with my progress in my battle with chronic myelogenous leukemia. When I was diagnosed, I was immediately hospitalized and began treatment; my diagnosis came as a shock to everyone, including me. It wasn’t as if I had been ill and finally had a diagnosis, so when the news began to spread, thanks to Facebook, the calls flooded in.

I was too ill to talk, and Joe was overwhelmed with having to repeat the story over and over again, so as soon as I was back at home and able to write, I kept everyone updated through this blog. What I began to realize was that I needed to educate myself; I needed to understand what CML was, and how it was going to affect my life.

Eventually it became apparent that I was not the only one that had questions; and wanted answers. My family and friends also wanted information; so I continued to blog. What I have found over time is that my blog has helped other newly diagnosed CML patients, as well as many veterans. It appears that it has filled a void so I shall continue.

I thought that since so many of you have been such a huge support, I would give you the opportunity to request a blog topic. I know what my questions, concerns, rants and raves are, and now I would like to hear some of yours’. So you can either leave a comment here, or email me personally and I will see what I can do to fulfill your request!

Thanks for all of your support,
Michele


Thursday, February 6, 2014

Christmas in February!

We have been home for three weeks and one day and all of my Christmas decorations are still up! There are many reasons for this; the first being that since we were gone from the beginning of December, until the third week in January we really did not get much of a chance to enjoy them. The second reason is that it took me the better part of two weeks just to catch up with “life” after being away from home for so long, and the third reason is that I just cannot seem to get motivated enough, to actually start the long process of taking them down!

I look around and just become overwhelmed; besides, they look really pretty! I love the lights on the trees and anything with a snowman or snowflake, always makes me smile. I also enjoy the spirit of Christmas and like to be reminded of the “Hope” and “Faith” that are forefront, during the Christmas season.
I like to be reminded to “BELIEVE” and that there is always magic and miracles in our midst. I like seeing angels hanging on my tree and even love the “jolly” Santas and elves. Christmas is a time for Goodwill and Cheer and is something that should remain within all of us, throughout the year, so maybe I should just become a year round home, full of Christmas joy!

I wonder how Joe would feel about this. Hmmmmm…..maybe I should focus and get this holiday cheer packed away before Valentine’s Day! 

Monday, February 3, 2014

Our Very Own Super Bowl: Us vs Philadelphia “Chromosome”

                            
Yesterday many people gathered in front of their television sets to watch the Super Bowl; no matter how well prepared the teams were or were not, one team always prevails; it is the nature of the beast. It seems as though the half time show had the same results; one act prevailed over the other.

For those of us living with CML we will be playing in our very own Super Bowl: Us vs Philadelphia Chromosome, for the rest of our lives, so we must continue to train, and be prepared to make the tackle, catch the ball or run the length of the field, for our very own touchdown dance!

It is a game that is well worth playing; there will be many celebrations along the way and many disappointments, too; but if we are not in the game, we will miss them all. Yes, we may win some, and we may lose some but the goal is to stay in the game.

Some days are good and some days are bad; we need to take each and every one like a champ. I know that sometimes it is difficult to see the light at the end of the tunnel, but I believe that if we keep going through the tunnel, we will come out on the other end.

What we all must realize is that during the game, a play must be made. This play may have worked for a very long time, but the defense has figured it out and thwarted your plan; in this case, the play must be changed. It must be tweaked to become a new winning play. This play may work for an extended period of time, but then, once again; it may become ineffective. When this happens another new play must be put into action.

My greatest opponent for the past nine months has been pain; it has been affecting my daily life much more than acceptable. I have been in the game and changing the plays throughout this time and I must say that I believe that I am currently having more good days, than bad. I do not know exactly why the pain is more severe from one day to the next, as there does not seem to be a trigger, so it is difficult to make these game changing plans.

The first thing that we (I and my oncologist) did was to assess the situation and take all facts into consideration. I had an MRI, a Nerve Conduction Study, an Electromyogram and many blood tests. Once these facts and figures were assessed, along with my PCR, we lowered the dose of my medication; play one. I began to use the topical NSAID (Voltaren Gel) more regularly; play two. When the Voltaren Gel isn't performing up to standards I apply a Lidocaine patch: play three. And I began to use a heating pad when the pain reached an intolerable level: play four.

These four plays are working for now; when they no longer achieve desired results, I suppose that I will have to come up with a new game plan. And when the time comes that I meet a different opponent, face to face, I plan to be prepared to shut that one down, too.

We all must play our game and our very best defense is to stay in it, be prepared and to be willing to make changes in the play.


Good Luck in your very own Super Bowl; we are all winners in our game!

Saturday, February 1, 2014

Voltaren Gel; Really Helping the Pain!

As you must know, I take Sprycel daily to control my chronic myelogenous leukemia. This medication comes in a box, in a bag, that is labeled; Toxic Waste. This particular “Toxic Waste has kept me alive for almost three years. Because it is such a potent medication, I do not like to take any other medications, if at all possible.

However, this particular medication DOES come with its’ own set of problems and side effects. The most bothersome of all of these side effects lately has been the pain that I am experiencing in my back, hips and the bottoms of my feet. Oddly enough, the bottoms of my feet, my heels in particular, seem to be the hardest hit; they feel as though I am walking on broken glass.

Since I am already taxing my kidneys and liver, and wish to avoid additional medications, even ones’ prescribed for pain, I tend to just hobble throughout the day. As an option, my oncologist suggested that I try Voltaren Gel; a topical gel that is applied directly to the area that has pain. Voltaren Gel is a non-steroidal anti-inflammatory drug (NSAID) typically used for the relief of joint pain of osteoarthritis in the knees, ankles, feet, elbows, wrists, and hands, but it seems to be working on the areas that I have peripheral neuropathy (nerve pain), as well.

I was only using it sporadically, on my worst days, but for the past few days, I have been using it on a more regular basis and it really seems to be helping. I am going to continue to apply this gel to my affected areas and see if it continues to control the pain.

I do use it sparingly, and make certain to not use more than the prescribed amount. I figure that I will use as little as possible, in order to achieve the desired effect. Since our skin is our largest organ, we must be careful to not use more than the prescribed amount of this gel, as it is still being absorbed into our bodies and bloodstreams, even though we are not taking it orally.

We must also remember that we are absorbing this medication through our hands if we are not wearing a glove for application; it is advisable to wear a glove, but if you do not, you must be certain to wash your hands thoroughly after applying the gel.

Since Voltaren Gel is a NSAIDs  and is more than just a pain reliever, it also may prevent blood from clotting, so you must not take other pain relievers such as Aspirin, Ibuprofen, or Naproxen; you must also be diligent in monitoring the amount that you use since it is a gel, many may think that the more you use, the better it is, but it is important to remember that it is still a prescribed medication that could be detrimental if over applied. I would definitely check with your doctor for all of the Do’s and Don’ts prior to using this medication.

For me, it is in the lesser of many evil’s category as I am “spot” treating exactly what, and where it hurts as opposed to taking a pain med that goes throughout my whole body. I am hoping that with lesser gel, applied on a more regular basis, my pain will be kept at a more manageable level. So far, so good!


Just thought I would share!

Bricks for the Brave!!