Wednesday, April 30, 2014

Increased Sprycel Dosage; Increased Side Effects

I think that I am still in a bit of a denial/hopeful phase since my last PCR results. I am a bit shocked, a bit freaked and a bit doubtful that my PCR went from two negatives to 0.4%; that is .4% NOT .04%! Crazy, huh?

Of course I am already anticipating my next PCR and wondering whether or not this result was a fluke, a mutation or just par for the course. Three years down the road I was convinced that I had a handle on all of this CML “business”; I thought that I was on track and that I was simply going to stay there! Joke is once again, on me!

Anyway, along with my increased PCR comes an increase in medication, which means an increase in side effects. I increased my Sprycel intake from 70 mg to 100 mg, two nights ago. By morning of the first increase, the pain in my back returned, the fatigue increased to the point of not wanting to get out of bed and the nerves in my hands and feet are screaming.

My oncologist gave me a prescription for Gabapentin, also known as Neurontin; I filled it yesterday in preparation of an onslaught of increased pain. Of course, since I am so adverse to medications, the package insert is quite frightening. Warnings that I may go crazy, become suicidal or violent, or have an allergic reaction leading to death, not to mention I may experience increased memory loss (oh, yeah), fever chills and a sore throat, and maybe an irregular heartbeat have me wondering whether the gain outweighs the risks, or not. I can deal with a bit of nausea, diarrhea and clumsiness if my body would eventually adjust to the medication and help alleviate the pain enough to carry on with life, but I am not sure the chicken in me will allow me to give it a try!

I suppose if the pain gets bad enough, which it has in the past, I will be willing to take the risk, since taking a break from Sprycel  to allow my body a reprieve, is no longer an option. I am hoping that this little blip in my journey is just that; a blip!

I don’t know why I ever thought that this journey would ever be easy, consistent and without surprises, but as always, whenever I believe that I have a plan, and that I am in control, I am reminded that I am not!
I would love to hear your experiences with Gabapentin!

Blessings and a great day to all! 

Tuesday, April 29, 2014

Do I Need a PCR Test; or is a Blood Test Enough?

Recently I have read posts and questions from other CML patients stating that their oncologist’s assessment of their progress is “very good” based solely on Complete Blood Count, otherwise known as a CBC.

A Complete Blood count typically measures the following:

White blood cell count (WBC or leukocyte count)
WBC differential count
Red blood cell count (RBC or erythrocyte count)
Hematocrit (Hct)
Hemoglobin (Hbg)
Mean corpuscular volume (MCV)
Mean corpuscular hemoglobin (MCH)
Mean corpuscular hemoglobin concentration (MCHC)
Red cell distribution width (RDW)
Platelet count
Mean Platelet Volume (MPV)

While this is an extremely important test, that needs to be run periodically during our treatment, it is by no means the absolute marker of our progress against CML.

My recent test results are a prime example of why we, as CML patients, need to have a Polymerase Chain Reactiontest, otherwise known as a PCR, in addition to a CBC. A PCR test measures the actual Bcr-Abl cancer causing gene in one’s blood or bone marrow. It is the test that actually detects the amount of disease, which is in your body.

If my oncologist had relied solely on my CBC, we both would have had a false sense of well-being; you see, my CBC was considered “normal”, with the exception of borderline low red and white cells, and low blood sugar, everything else was perfect!

It was all perfect until the important test results came back three weeks later; those results, the ones from the PCR, showed a remarkable increase in the cancer causing bcr-abl gene. What this means is that your blood work may appear perfectly normal while your bone marrow is gearing up to take control again; it may not happen overnight, but eventually the counts in your CBC will once again, begin to rise. The beauty of getting a glimpse into what is going on in your bone marrow is that you can adjust your treatment according to your PCR tests, prior to CML going into blast crisis, or creating a mutation.

Consider the PCR test a window into your marrow; it is THE test that should be used to monitor ALL CML patients; hopefully all oncologists that treat CML patients will eventually use labs that use the International Scale of testing, so that we will all have the most accurate information regarding the progress of our treatment of CML.

Because of the increase in my PCR test results, I am going to have to increase my Sprycel intake from 70 mg per day to 100 mg per day. I began my new treatment yesterday and I can already tell that it is going to be a rough adjustment. My spine and bones are aching, I am extremely tired and the peripheral neuropathy in my hands and feet are screaming.

Hopefully my body will begin to adjust to this increased dose of Sprycel and the side effects will lessen. I am going to try to tough it out, but will have Gabapentin, Voltaren Gel, Lidocainepatches, Meclazine and Baclofen on hand in case of an emergency! I must find a way to endure the side effects, so that I can snap this damn CML back to a negative state!

Oh the things that we must endure to stay alive!

Monday, April 28, 2014

The CML Roller Coaster

Living with a “chronic” cancer is much like the weather; it is unpredictable. And just like the weather, no matter how prepared you are it can catch you off guard. On April 7th, 2014, I saw my oncologist; it was a routine appointment and all of my labs looked good. The pleural effusion was minimal, my blood pressure was typical for me, and as par for the course; I had gained two pounds. The only thing that was a bit askew was my blood sugar, which often runs low; today it was 62.

We went over the current course of action, which was 70 mg Sprycel, seven days a week with breaks if the pleural effusion felt as though it were increasing, or if the pain was too extreme. The prior three months had been the same; I had missed taking my meds, sporadically for twenty days. I suppose that I had had a false sense of security as my two previous PCR tests had been negative. I really felt as though I was going to be one of the lucky ones and that the CML was going to stay suppressed forever!

Apparently I was wrong; my PCR results came back late last night; it was the very first time that my blood was tested on the International Scale and I have decided that I do not like it! My PCR has gone from negative to .4%, or in other words 4 out of every 1000 cells are bad.

What this initially means to me is that I must now increase my dose of Sprycel from 70 mg to 100 mg; it also means that my dream of going from 70 mg to 50 mg, at this time, is shattered. I really have not thoroughly processed this news yet, but I am well aware that having chronic myelogenous leukemia is nothing to take lightly. I am going to have to step back up to the plate and try and tolerate the increased side effects once more.

That is the most depressing part of living with a chronic cancer; I really hope and pray that sometime during my lifetime, there really is a cure. I would love to be able to say, “I HAD leukemia, and I am a survivor!” But for now I will continue to say, “I am still, living well with CML.”

My plan is to suck it up for the next four months, suffer through the side effects and not miss one dose of Sprycel; unless the PE dictates otherwise. I will suffer through the pain and will fill my prescription of Gabapentin, in the hopes that it helps to calm the peripheral neuropathy. I will continue to pray, to dance and to live my life to the best of my ability, not taking one day for granted.

I will fight my way back to a negative PCR and try not to allow the roller coaster of CML to darken my path. I know that this is just a reminder to not become too cocky, and to accept the fact that I have cancer; I have cancer today, tomorrow and possibly for the rest of my life. I need to cherish my days, be diligent in my treatment and look forward to my next, negative PCR.

Blessings to all that are on this journey with me; as we all know, some days are better than others and just like a roller coaster, sometimes we are up,sometimes we are down and sometimes we are terrified; but we must always remember to enjoy the ride!

Thursday, April 24, 2014

Pain Questions Answered

It was not until I returned home after traveling for the better part of six weeks, that I realized just how much of my everyday life had been removed. It wasn't just the comforts of home, that were sorely missed, but the ability to write, connect and help others seemed to have as great an impact on fellow CML’ers, as it did me.

I tried to keep up with communications as best I could, but we were actually at places that we had little time, and often no internet. The result was that my inbox was flooded with correspondence regarding chronic myelogenous leukemia; the pain, the gain and the everyday living with a chronic cancer. It never occurred to me that I would ever be in the position, that my opinion mattered; let alone helped others that were paddling up the same creek as me.

Of course most of the information can currently be found on my blog but you have to use the “search” feature, which coupled with the amount of information that is available, I totally understand that it is just easier to send me a personal note; which I totaly, not only understand, but prefer! I promise, that someday soon, I will get on “that” book!

This leads me to the most commonly asked question: What About the Pain? I am going to preface my answer with the standard phrase, “I am NOT a doctor, and I am simply sharing what has worked for me. Everything that I mention has been discussed and approved by my personal oncologist.”

That being said, here are the some of the things that work for me. I personally only “treat” my pain when I have it; I do not use any of these prescriptions unless I need them; this may or may not be a “good” thing; but for me, I want as few medications running through my body as possible.

I will also add that my oncologist, after reviewing my MRI, and tests from the neurologist (to rule out the possibility of my pain stemming from something other than Sprycel), has added Neurontin to my “bag of tricks” for peripheral neuropathy (nerve pain). I have yet to fill the prescription, so I cannot share any info regarding my personal experience of this drug.

Pain Remedies

1.     Back Pain; sometimes this pain is skeletal and sometimes it is muscular; it also can cause my legs to have a numbing sensation. My first line of defense is Voltaren Gel, it is a nonsteroidal anti-inflammatory drug. It is topical and I use it sparingly, a little goes a long way and I like the fact that I can treat the exact place that I hurt, without having to orally take an anti-inflammatory medication. This medication can cause bleeding and should be used sparingly; it is a prescribed medication so your doctor can advise you of your risks. When I am having muscle spasms, I take 5mg of Baclofen; this usually does the trick. It is a muscle relaxer and it does not make me sleepy. If the pain continues, I will use a Lidocaine patch, these patches, 5% Lidocaine can be used twelve hours on, twelve hours off. Once again, I like to treat the location of the pain, when possible. I also use a heating pad.

2.     Foot Pain; for me this is peripheral neuropathy, nerve pain at its best. It can be so extreme that there are times that I cannot even bear weight on my feet. The first thing that I use is the Voltaren Gel, my second line of defense is a Lidocaine patch; cut up into squares to cover the area in pain. I have also taken Ibuprofen; approved by my oncologist. The next time the pain is extreme, I will probably try the Neurontin, although I must admit that I am a bit reluctant.

3.     Hand Pain; this is also peripheral neuropathy and has improved with the decrease of Sprycel, from 100mg to 70 mg. I am still waiting to see if my negative PCR has held on this dose. I mostly have hand pain at night; so extreme that it wakes me from a sound sleep; my hands will be so numb at times that I feel as though I could literally break a finger, and not feel it. I have been applying a small amount of Voltaren Gel to my wrists and hands right before I go to sleep; this seems to have helped. When I do not use it, I wake up to throbbing, numb hands. I am hoping that this routine will allow me to continue to sleep, without having to take the Neurontin, on a regular basis.

4.     Extreme Intolerable Pain Anywhere: this is pain that has escalated to the point of being intolerable; for many consecutive days, with no relief in sight. When the pain has reached a point of being completely unbearable, I take a short, approved break from Sprycel. This is a last resort but is approved by my oncologist; he believes that sometimes our body’s just need to recover from the toxicity of these drugs and a break is actually a healthy measure for our overall well-being. Fortunately this break seems to resolve my pain issues, within a day or two.

After a visit to my daughter, I am going to try to use the essential oils that she gave me; Frankincense and Deep Blue. I am always going to be in search of the most effective and natural way to treat my pain. I suppose that it will be an ongoing journey in my fight with CML.

I hope that this information will give you some ammunition to take to your oncologist, and I would love to hear what is in your pain management toolbox, too.

Wednesday, April 23, 2014

Traveling with CML? Here Are Some Tips!

Merry Go Round Central Park
The past six weeks have been a whirlwind; we have traveled to New Jersey, New York, Las Vegas, Palm Desert, Irvine, Simi Valley, Thousand Oaks, Phoenix, Chandler and San Diego. We have made new friends, and visited with old friends and family, all along the way; we have slept in nine different beds and have had the privilege to spend time with those nearest and dearest to us.

I saw my oncologist, an optometrist and a Chiropractor, taught and competed at San Diego Dance Festival and even went shopping; guess what? I am officially exhausted! It wasn't until the very end that I allowed myself to remember that I have cancer; or should I say, cancer reminded me?

The last two days of our trip were rough; the pain was so bad that even my hair hurt!  But looking back over everything that we did, I am tickled pink that I did as well, as I did; it was a travel marathon that would exhaust anyone. It may take me a week or so to catch up, but it was worth it. We only live once, and while I am still lucky enough to be here, I plan to pack my days as full as I can; without making myself ill.

Here are a few tips that may help you enjoy your travels; of course, this is a list of do as I say, not as I do!

Long Road Trip Tips: Make a List

1.     Pack all medications; even ones that you may not need, such as Ibuprofen, meclazine, allaclear and diarrhea meds. Better to be safe than sorry; I always pack an Advair Disk for unexpected bronchitis and eye drops for allergies, as we never know what we are going to run into. Of course you should always pack all of your prescriptions, and regularly taken meds, as well.

2.     Pack a cooler full of plenty of water, and other healthy snacks such as hard boiled eggs, grapes, melon cut into chunks, apples, string cheese and chicken. (I buy a cooked chicken and pull it apart)

3.     Other snacks may include nuts, popcorn, trail mix, protein bars and the coveted dark chocolate bar. (For the moments when you cannot imagine staying in the car, for even one more second!)

4.     I bring a heating pad; I have a power strip that goes into my cigarette lighter. (much cheaper than Thermacare Heat Wraps) Voltaren Gel (prescription) is also on my list.

5.     If you are a passenger you can bring magazines, puzzle books and yarn; a book on tape can also help pass time for you AND the driver;of course, I am sure many of you have iPhones to also keep you amused!

6.     Comfy clothes for the drive, and slippers and a robe for your overnights with friends and family.

7.     Appropriate clothing with at least one backup, for unexpected weather.

8.     Maps! I don’t know about you, but half of the time my GPS is a crack-head, and I still like to look at paper maps!

9.     A good book; to help aid in naps.

10.   Your very own pillow!

11.  Top of the list is not anything that you can pack; it is taking care of yourself. Stay as hydrated and as well rested as you can; wash your hands often and remember listen to your body; REST when it says ENOUGH.

12.  Do not allow stress to become a factor.

13.  Enjoy what you are doing and where you are going because we should cherish, and be grateful for each and every moment!

14. A small cooler with ice packs to avoid overheating, and my most trusted chilly pads! They are a lifesaver!

 15. If you are Flying, make certain to keep your meds with you and ask to preboard; it alleviates being in the long line and allows you to get in and get settled. I find flying quite weary making.

I am certain that there are many other “must haves” but these are the ones that I never leave home without!

Funny thing is that as much as I enjoy spending time with friends and family; there is no place like home! After weeks on the road, crawling into our own bed, at our preferred temperature (really, really cold), was a slice of heaven!

Until next time, I am happy at home!

Wednesday, April 9, 2014

When Dealing with CML, Always Consult your Oncologist

When it comes to one’s health I am a firm believer in self advocacy, and what I mean by that is I truly believe that each and every single person should be personally responsible in their own education, regarding their own medical treatment. I believe that in order to make responsible choices in our treatment, we must not only understand our disease, but our treatment options as well.

As patients, many people leave all of their options in their physician’s hands; they give their oncologists the reins and expect miracles. We all need to realize that we live with our bodies twenty four hours a day, seven days a week, and no one knows our bodies’, like we do. Our oncologists’ see us on brief occasions, once in a while and assess our disease during those visits. It is our responsibility to give them clear and concise information regarding our health and to be educated enough to ask pertinent questions; regarding our health, and our treatment.

That being said, we can, and should learn from one another. Social media and the internet have made interaction between patients not only possible, but powerful. We are able to connect with others through Facebook groups, CML Forums and blogs; we are able to share our experiences, our side effects, our complications and our triumphs.

Many ask for “advice” and many freely give it; this is “OK”, as long as it is information that is used as research and thought provoking questions, which should be discussed with each person’s medical professional. None of the advice or suggestions, which are received from other patients, should be implemented without first checking with your own, personal physician.

Take my Bragg’s vinegar theory for example; I deduced that I may have low stomach acid and that may be the cause of my increasing PCR, I brought this theory to my oncologist and he and I decided that I should start taking Sprycel with something acidic. Two negative PCR’s later, and my oncologist is making this same suggestion to other CML patients that fall into the same criteria that I did. This information I shared on my blog, not suggesting to others to change what they are doing, but to share “my story”, and if they were experiencing similar issues, to bring my theory, to their oncologist, for discussion. To date, six others have shared my experience, and my success.

I believe that sharing information is pertinent; it can be powerful and lead to a change in one’s treatment, it can open doors and be used as a platform for discussion. It can be very beneficial to patients, but it can also be detrimental; do not ever make changes to your treatment without first seeking medical advice.
All of us living with CML have one thing in common for sure; we have CML. We also have unique, and often complex, extenuating medical histories therefore, what works for one person, may or may not work for another.

We should continue to support and learn from each other; we should share our stories and new information that we learn along the way, but we must also continue to be our very own, self advocate. Take the shared information and do your own research; make a conscious decision to learn everything that you can about your disease and share your questions and your knowledge with your physician.  If you do not have a physician that you can talk to, then it is my suggestion that you find one.

Here is to caring and sharing; keep it up…..responsibly! 

We need each other!

Thursday, April 3, 2014

Leukemia and Over One Million Page Views!

When I was first diagnosed with chronic myelogenous leukemia, I did not have the foggiest idea how living the rest of my life with cancer would affect me, my husband, my family and friends, and so many others, to boot! I was scared, confused, angry, frustrated, and needless to say; very sick. At that time, I knew little about leukemia, my prognosis and where my journey would lead.

I found that there was very little information readily available about my type of cancer and quickly realized that I must educate myself in order to understand my disease, my treatment and my options. In the meantime, my family and friends were just as eager to understand exactly what CML is and how it was going to affect not only the length of my life, but the quality of my life, as well.

Due to my limited amount of energy, I created a blog for my family and friends, so that they could follow my journey without my having to repeat the same information over and over; I was simply too exhausted to talk to everyone. My blog became a great way to keep everyone abreast of my progress, educate others as I was educating myself, and give them a snapshot of what I was going through and how I was feeling. I did not sugar coat the bad stuff and made sure to revel in the good stuff. I shared what I was doing, how I was feeling and how I was learning to accept the fact that I would have cancer, for the rest of my life.

What I did not realize was that my blog not only impacted my family and friends, it also began to impact many others, too. Complete strangers began to find my blog and cheer me along. They wrote words of encouragement and empathy; they gave me strength and hope. Some days they laughed with me and some days we cried. They shared their stories and begged me to keep writing.

Others with CML, newly diagnosed and veterans alike, also began to find my blog; apparently I was filling a void. I have been poked and prodded, begged and pleaded with, to turn my blog into a book. I have laughed at the suggestion and poo-pooed the idea for three years; all the while, my blog’s audience has continued to expand. It has been picked up by various publications and has gained me some pretty interesting opportunities. At one point I said, “If I ever reach one million page views, I will consider it.”

Well, that day has become a reality; my silly little blog has reached 1,062,321 page views, as of this very moment. What started out as a way to communicate with my closest family and friends has turned into a place where people with CML, other cancers and chronic conditions can go to find answers to some of their questions, and more importantly a place where they can share someone else’s journey, while relating it to their own.

Being an inspiration to others was never my plan; sometimes God has his own plan, and sometimes it takes a sledgehammer to get one to follow; I am thinking that I had better consider that this is God’s plan and to start listening.

My husband truly believes that I contracted CML in order to help others along their own difficult journeys; this is difficult for me to believe, as I feel as though my feet could never begin to fill those shoes, but if hearing my words help even one person, then I am happy to have given back.

Thanks to all of you who have followed my blog, supported my efforts and have joined me on my journey in learning to “Dance My Way Through Leukemia!”

Tuesday, April 1, 2014

Cure Magazine May Support Bragg’s Apple Cider Vinegar Theory

Apparently I was not too far off the mark with my low absorption of Sprycel theory which led to an increase in my PCR, despite a medication increase. I believed that for some reason I had a reduction in stomach acid and my PCR began to climb. After I talked to my oncologist, he thought that it was worth a try, to take the Sprycel with something acidic; I have been using Bragg’s Apple Cider Vinegar and to my delight, I reached PCRU, twice and have lowered my dose of Sprycel from 140 mg per day to 70 mg per day.

It is also my theory that by lowering the dose of medication, I will lessen the side effects I suffer, and the lower dose will be less taxing on my body, especially my kidneys and liver!

So low and behold; I ran across and article written December 10, 2007 that supports this theory. It states that “The effect of food on drug potency may justify new research.” Evidently they did not get very far on the research!

Anyway, here is the article; I believe it is worth the read.

Take With Food?


The effect of food on drug potency may justify new research.

It’s no surprise that foods interact with cancer drugs and other medications. Chemicals in grapefruit juice, for example, prevent the breakdown of some drugs in the body, leading to higher-than-expected—and sometimes dangerous—levels in the blood.

 Still, it was big news this past summer when two researchers from the University of Chicago calculated that taking a breast cancer drug with food could save patients—and their insurers—$1,700 per month. The “bioavailability” of Tykerb (lapatinib) increases more than three times when the drug is taken with a high-fat meal, wrote Mark Ratain, MD, and Ezra Cohen, MD, in a Journal of Clinical Oncology commentary in August. Their analysis was inspired by a Dartmouth College phase I clinical trial with 27 patients, discussed at the March 2007 meeting of the American Society for Clinical Pharmacology and Therapeutics.

“Thus it is possible that one, 250-mg Tykerb pill, accompanied by food and washed down with a glass of grapefruit juice, may yield plasma concentrations comparable to five 250-mg pills on an empty stomach,” Drs. Ratain and Cohen wrote.

“This certainly isn’t the only drug-food interaction,” Dr. Ratain says, “but this drug is unique in the magnitude of the interaction—even remarkable.”

It’s not just about money, Dr. Ratain says: Taking less of a drug, such as Tykerb, could mean fewer side effects (diarrhea is a major one with Tykerb).

But don’t start cutting your dose. Tykerb’s label—like all drug labels—was written based on phase III clinical trial tests for safety and efficacy, says Sarah Alspach, manager of oncology product communications for GlaxoSmithKline, Tykerb’s manufacturer. In early testing, taking the drug with food produced a wide range of bioavailability—some people ended up with much higher blood levels of the drug than others, probably because of different metabolisms and differences in what they eat, Alspach says.

“The effectiveness of Tykerb depends on the right amount of drug reaching the cancer cells. To make that consistent, it is taken without food,” she says. “There’s no evidence to support that adjusting the dose would be safe or effective.”

Dr. Ratain agrees patients should follow label directions precisely. He’s frustrated, however, by the lack of clinical testing to see if taking less of the drug—with food—could be both safe and effective.

Given the “escalating cost of medications,” Dr. Ratain says, advocacy groups ought to push for tests of Tykerb with food. That’s also true for other cancer drugs, he says. Tests have shown Tarceva (erlotinib), used to treat some lung and pancreatic cancers, becomes significantly more bioavailable when taken with food. However, like Tykerb, the manufacturer directs patients to take it without food to better control its levels in the bloodstream.

Dr. Ratain and his colleagues are practicing what they preach, currently running clinical studies on the interaction of grapefruit with the drug Rapamycin (sirolimus) for patients with lymphoma, multiple myeloma, and chronic lymphocytic leukemia.

Other food-drug research is in earlier stages. In the test tube, chemical extracts from cranberries boost the ovarian cancer-fighting capacity of platinum drugs, which include cisplatin and carboplatin. Nicholi Vorsa, PhD, and Ajay Singh, PhD, natural products chemists at Rutgers University in New Jersey, reported this past summer at the American Chemical Society meeting in Boston that pre-treating ovarian cancer cells with cranberry juice extracts made those cells six times more likely to be killed by carboplatin than untreated cells. Vorsa says it’s not entirely clear how the cranberry extracts may trigger the effect.

Vorsa says it’s no surprise that plants and foods contain powerful chemicals, which may be used in combination with drugs to fight cancer. “Think back to Hippocrates, who said food is medicine and medicine is food. Maybe we’re going back to an old idea here.”

Bricks for the Brave!!