Friday, December 28, 2012

One Thing All Cancer Victims Have in Common

I am sure that there are many, many things that cancer patients all have in common, but one thing that I am sure of, is that the very first thing that we all have in common is total and complete shock. No one expects to hear the words, “You have cancer.” Sure, we all logically know that cancer, somewhere in our bodies, at some point during our lifespan is a possibility; however, few of us actually believe that it will ever happen to us. Cancer is something that happens to other people, not me.

Most of us that are walking around knowingly having cancer, walked around for quite some time incubating cancer cells, without us even knowing that we were ill. Sometimes people become ill from their cancers, other times we are simply blindsided by a routine exam. I really do not know if there is a better way to get the news or not, but being told you have cancer when you really didn’t know you were sick is a real shocker. I know some people go through months and months of testing, knowing that something is amiss, when they finally get the news, so maybe for them an answer of some sort is better than the unknown, but I truly believe that regardless of the delivery, every one of us was shocked.

Life as we once knew it is gone forever. Our lives’ are not over by any means, they are just going to be different; they will never be the same. For every single person that hears those three big words, “You have cancer,” a new journey begins. While many of us will share similar treatments, medications, side effects and results, we are all different and our experiences will all vary. We can share our stories and experiences with others, in hope to help and to learn from each other. Cancer is a six letter word that will change your life; forever.

Thursday, December 27, 2012

CML; Chicken Pox and Shingles

May an individual with CML receive the shingles vaccine? What about the chicken pox vaccine?

Using the most current infectious disease guidelines, Zostavax (shingles vaccine) may be given to CML patients who are stable and not experiencing any evidence of relapse or progression, and who do not have other immune suppressive issues such as recent requirements for high dose corticosteroids.
For Varivax (chicken pox vaccine), similar principles apply, though there is perhaps more of a need to consider administering Varivax if a patient has never had chicken pox, given the risks associated with a chicken pox infection.

May an individual with CML be around someone who has shingles, chicken pox, or has been vaccinated for either?

If a CML patient has never had prior chicken pox and has never had the chicken pox vaccine, then he or she should avoid contact with individuals with chicken pox or shingles. If the patient with CML had prior chicken pox or vaccination for chicken pox, then the concern is minimal as infection risk is dramatically lower.

Wednesday, December 26, 2012

What Immunizations Should CML Patients Avoid?

Brought to you by The Ntaional CML Society

The safety and efficacy of any immunization is based on highly patient-specific variables, including the phase of your CML, the treatments you are receiving and their effect on your immune system, as well as the risk you experience for exposure to dangerous illnesses for which there are effective immunizations. The table below will provide general guidelines for immunizations that should be taken only with careful consultation with your CML Specialist.

It is best to have a fully restored immune system prior to receiving any of these immunizations.


Influenza (nasal spray)
flu spray

Spray vaccines include elements of the live influenza virus and although safe for the general population, should not be administered to individuals who have CML UNLESS APPROVED BY THEIR CML SPECIALIST. Although risk is considered low, patients living with CML should avoid contact with individuals who have received immunizations with a live vaccine for one week.

Measles, Mumps and Rubella (MMR) Vaccine
Individuals with CML should not receive the Measles/Mumps/Rubella vaccine UNLESS APPROVED BY THEIR CML SPECIALIST since it contains elements of live viruses. It is safe however for family members or those in close contact with CML patients to receive the vaccination. If you have CML and are exposed to someone who has measles, alert your healthcare team quickly so that you might be eligible to receive measles immune globulin to help fight a measles infection.

Polio – older formulation given by mouth
The oral polio vaccine contains elements of live virus and should not be given to individuals who have CML UNLESS APPROVED BY THEIR CML SPECIALIST. Although risk is considered low, patients living with CML should avoid contact with individuals who have received immunizations with a live vaccine for one week.

Rotavirus vaccines are generally given only in pediatric patients. They are given orally and contain whole live viruses, making them off-limits for patients with CML. Do not administer Rotavirus vaccination to children with CML UNLESS APPROVED BY THEIR CML SPECIALIST.

Individuals living with CML should not receive the smallpox vaccination and should avoid close contact with individuals who have received the smallpox vaccination for approximately 21 days UNLESS APPROVED BY THEIR CML SPECIALIST. The virus is spread by contact, therefore individuals living with a CML patient should also not get the smallpox vaccination. Exceptions can be made if stringent protective measures are in place including covering the vaccination site at all times to avoid contact with sheets, towels, clothes or other shared surfaces. It is important to discuss with your healthcare team, any exposure to smallpox or to those recently vaccinated for smallpox.

Varicella or Chickenpox vaccine
Individuals with CML who have restored and stable immune systems are eligible to receive the chicken pox vaccine if APPROVED BY THEIR CML SPECIALIST, since it contains elements of live virus. It is safe, however, for family members or those in close contact with CML patients to receive the vaccination. If you have CML, have never had chicken pox and have never had the chicken pox vaccine, and are exposed to someone who has chickenpox, alert your healthcare team quickly so that you might be eligible to receive VZV immune globulin to help fight a chicken pox infection. The VZV immune globulin must be given within 3 days of the chickenpox exposure in order to be effective.

Varicella Zoster or Shingles Vaccine
Individuals with CML who have restored and stable immune systems are eligible to receive the shingles vaccine if APPROVED BY THEIR CML SPECIALIST, since it contains elements of live virus. It is safe, however, for family members or those in close contact with CML patients to receive the vaccination.

What Immunizations are safe for patients with CML?

The information posted in this blog resulted from the research and expertise of an experienced oncology nurse, Alisa Peinhardt, the Director of Patient Care Services for the National CML Society. This information, and additional information from NCMLS about immunizations CML patients should avoid, is at this link.

The National CML Society is a nonprofit organization serving those impacted by CML in the United States.

What Immunizations are safe for patients with CML?

Hepatitis A
The Hepatitis A vaccine contains only killed virus and is therefore safe for patients with CML to take.
Hepatitis B
The Hepatitis B vaccine does not contain elements of a live virus and is therefore safe for patients with CML to take.
Human Papilloma Virus or HPV Vaccine
The HPV vaccine does not contain elements of a live virus and is therefore safe for patients with CML to take. The HPV vaccine is now indicated for both males and females.
H1N1 or
Influenza A
The H1N1 vaccine does not contain elements of a live virus and is therefore safe for patients with CML to take. Indications for this vaccine may change from year to year so it is important to check with your healthcare team before receiving it.
Influenza (shot)

The flu shot does not contain elements of a live virus and is therefore safe for patients with CML to take. In fact, it is important to get a flu shot each year to decrease your risk of becoming sick with the flu. Patients with CML have not been shown to have increased risk of contracting the flu, but there is information that the flu can be more dangerous to those with CML and other hematological malignancies.
Flu Shot - may be given into the muscle – usually the upper arm or smaller doses may be given intradermally – just under the skin. 
Tetanus Shot
(Td, TdaP, or DTaP)
These different combination vaccines for diphtheria, tetanus and pertussis contain only portions of disease elements and are generally safe for patients with CML. Alert your healthcare team to your CML status prior to receiving a “Tetanus” shot.
Meningococcal  or Meningitis Vaccine
The Meningococcal vaccine contains only killed virus and is therefore safe for patients with CML to take.
Pneumonia shot or Pneumococcus Vaccine
Individuals with CML should in general, receive the Pneumococcal pneumonia vaccine. This vaccine helps individuals with compromised immune systems fend off potentially dangerous pneumonias.
Polio Shot
The polio shot given by most practicing pediatricians in the United States contains inactivated polio virus and is safe for patients living with CML.
The rabies vaccine is given to individuals at risk for exposure to rabies. The dosage schedule is different for those who have been in direct contact with suspected rabies, including those who have been previously vaccinated. The rabies vaccine contains inactivated rabies and is safe for patients living with CML.

Monday, December 24, 2012

Christmas Travels 2012; Phase One

A week ago we left our beautiful mountain home; snow, Christmas tree, decorations and all, and headed south. After moving to the mountains, and hearing stories from the neighbors about the switchback that leads into our neighborhood, Joe traded his Acura for a 4 wheel drive Sequoia. It is a great truck, with a ton of storage space and cup holders! I LOVE Toyota, for that! It actually has an added bonus, besides the 4 wheel drive; Great seats! No more low, tilted bucket seats, and no more bad back.

This truck has captain’s chairs that actually are ergonomically agreeable with my back, so along with the extra space, the 4 wheel drive and the cup holders, we set off for our Christmas travels. First stop San Tan Valley (near Phoenix), via Las Vegas. Typically we drive down the center of Nevada, less traveled roads and far fewer places to stop. This time, because of the possible impending “snow” that was supposed to pass through; we went down around Salt Lake City. This adds 100 miles to our trip, but we thought that it would be safer.

When we left home, the sun was shining brightly and it was an absolutely gorgeous day. As we were cruising along, we felt as though we may have dodged a bullet. But no; the first snowflakes began to fall right around Ogden, Utah. Being the optimist, I figure that we would drive through it fairly quickly. Being the realist, I quickly realized that we were in this one for the long haul! We, or should I say Joe, drove on…… watching the snow plows on the other side of the highway throw tons of snow, in our direction. We waited and watched patiently, inching along for a snow plow to show up, on our side of the highway; to no avail.

As the hours continued to pass, the snow continued to fall. I figured that eventually we would have to drive through this storm, as we were headed south. The snow was a bit frightening, but the 18 wheelers were down-right terrifying. They continued to fly past us, on a road that could not even be seen, at a high rate of speed; I am certain that they were traveling in excess of 55 miles per hour. There was also this little black car, which kept lagging behind and then flying past us; eventually was saw him and another car in the ditch. We also saw quite a few pick-up trucks way out in the fields and several semi’s in the median.

I don’t know what these people were thinking, but it is no wonder why there are so many traffic accidents, in snowy conditions; too many people are reckless, just down-right reckless. It is one thing to be “your big-bad-self”, but it is an entirely different thing, when you endanger those around you. It is incomprehensible to me, how anyone can be so careless and blatantly dangerous to themselves and others, as well.

After eight hours of driving in the snow, we finally hit rain. You have never seen two people so happy to see rain! We had been driving in the snow for eight hours. Joe kept asking, “Is this blizzard?” and I kept saying, “Not, yet!” The next day, we did hear that the storm continued to travel east and did turn into a horrendous blizzard, but by then, we were in sunny Arizona.

To be continued……

Friday, December 21, 2012

Dental Practice For Sale; Are You Looking?

If you are looking to buy a current dental practice, then you should definitely check out experienced brokers and consultants, for a dental practice for sale. Purchasing an existing business is not something that you should take lightly and you should never jump in with both feet, before doing your due diligence.

You will want to also do your due diligence when hiring a broker to search for a dental practice for sale so that your transaction will go smoothly, all above board and without any complications. Sometimes brokers that may be a bit more expensive truly are worth the extra cost as transactions that do not go smoothly often cost thousands of unexpected dollars due to missed deadlines and hidden fees.

So, if you are looking for a dental practice for sale, consult a reputable firm!

Possible Treatments of Chronic Myelogenous Leukemia

In my case of CML, I was admitted to the hospital and treated with cytarabine, a chemotherapy drug and leukapheresis; a process used to eliminate white blood cells. Not all cases of CML must be treated in this fashion, but because I was diagnosed with an extreme amount of white blood cells in my blood, there were other concerns. When I was diagnosed, I had 382,000 white blood cells; normal range is between 4,000 and 10,000. They needed to reduce the amount of white blood cells in my body quickly to avoid a stroke or other complications. They were also concerned that I might be in blast crisis; a very serious stage of the disease.

Once they managed to get my white cells under 100,000 they sent me home with a prescription of Dasatinib; commonly known as Sprycel. Sprycel is one of the second- generations of a drug that includes Imatinib (Gleevec) and Nilotinib ( Tasigna). These drugs were developed in 1998 and have changed the outcome of chronic myelogenous leukemia drastically. Before these drugs were created, certain death was the prognosis for people that had CML. Since the discovery of these drugs, patients living with CML are actually able to do just that; live. These drugs allow patients to manage their leukemia with the hopes of putting CML into cytongenic and molecular remission. There is no current cure for CML, but there have been many significant treatment advancements in recent years.

The way that these drugs work is by blocking the abnormal protein called “BCR-ABL tyrosine kinase inhibitor (TKI).” The goal is to stabilize the disease and make the side effects manageable enough for patients to lead a relatively normal life. All of these drugs are lifesaving, but also very, very expensive. Currently you must take them for the rest of your life. Along with the side effects, your CML may become resistant to them; thus changing the course of your treatment.  None of us know the truly “long term” side effects of these drugs as they are relatively new. Typically the side effects outweigh the benefits. So, for now, I will be taking Sprycel for as long as Destination Access provides it to me and as long as my body continues to respond in a positive manner. Thank God for modern medicine and research!

Thursday, December 20, 2012

Flu Shot vs Tamiflu

Every year, beginning shortly after summer, you begin to see advertisements for the flu shot. I used to always hem and haw about whether I should, or should not get the flu shot, as I have not had the flu in over 30 years, and have no recollection of just how miserable it can be. But with all of the controversy and the arguments, for and against the shot, you wonder what is best for you.

Many people argue that the only reason doctors suggest a flu shot is that they make money from doing so. This may be true; however, you do not even need a doctor’s prescription or office visit to get the flu shot. You can walk into just about any drug store, Walmart or Costco and choose to get the flu shot; no doctor required. I believe that doctors would actually make MORE money by seeing patients that are sick with the flu, so that theory does not quite fly, although, I am sure that someone is profiting!

Statistically speaking more than 200,000 people in the US alone are hospitalized each year, due to the flu and there are between 3,000 to 49,000 deaths, which are flu related. I understand that there are risks to receiving the flu shot, but I also believe the minimal risks that you may encounter, are far fewer than the risks of actually having the flu or ingesting Tamiflu.

I am certain that the people that had Polio, and lost children to Polio, would have loved to been given the opportunity to receive a vaccine, that would have prevented their Polio. Same goes with Mumps and Measles, sometimes, the risk of the vaccine far outweighs the risks of the disease or infection. I know that many people are under the assumption that the flu shot only prevents one strain of the flu, but my research states that it actually prevents four strains of influenza. Fact of the matter is that the flu shot is targeted to prevent the most prevalent strain of the flu, so while it may not prevent all types of influenza, it does prevent the strain of flu that you are most likely to be exposed to.

Tamiflu is given to children, one year and older, that are having symptoms of the flu. It is not designed to be a substitution for the flu vaccine. It is said to lessen the symptoms of the flu and to possibly reduce the risk of getting the flu. There is no data in pregnant women and the side effects of Tamiflu are far worse than the side effects of the flu vaccine. I personally would prefer the sore arm from the shot than the vomiting and nausea that may accompany taking Tamiflu. Why some think that risking taking Tamiflu is a lesser risk than having the Flu vaccine, I do not know. So, maybe someone can enlighten me, as the research that I have done does not support this.

I believe that just like the flu vaccine, doctors, or someone, will be making money on the Tamiflu, too. Who is to say where more money will be made; on the vaccine or the Tamiflu? I would like to think that the one-time vaccine vs the week long ingestion of a medication, would be less risky, and less costly, but I suppose that like most medical things, we, as patients will never know the real, true answer. I do know that a patient WITH the flu will make the most money, for doctors, especially if they are hospitalized.

So, what I do know is that since I have leukemia, I have a compromised immune system and I will do whatever it takes to decrease my risk of getting the flu. My neighbor, who is a nurse, had never gotten a flu shot; that is, until she saw how sick her husband was when he got the flu. They are both in their early thirties, young and healthy, but she said that she would never risk not getting the flu vaccine again, after she saw how ill her husband was. She said that it was terribly frightening. It was this that led me to my first flu shot, five years ago.

My oncologist recommends the flu shot for all of his patients, and also gets one himself; as does his staff. I suppose I will never know whether it is the flu shot, or the fact that I was not exposed to the flu, but I think that I will always be in favor of taking the poke in the arm!

I see the posts on Facebook and hear how sick people are when they have the flu and I am so fortunate that I have been able to avoid it. Of course, I am extremely careful and make certain to stay away from people that have the flu, I don’t touch railings when I am out in public, use sanitary wipes on shopping carts and wash my hands constantly, so whether it is the flu shot or just plain diligence and good luck, I do not know. But here is hoping that you all stay healthy, regardless of your convictions.

Wednesday, December 19, 2012

Tips for Your Hospital Stay

If you or anyone you know and love should end up in a hospital bed; here are a few tips to help make your stay more comfortable.

First and foremost is when you are in your room, close your door! There are many reasons to keep your door closed both night and day. The most important one is that it is so much quieter; you and your visitors are allowed peace and privacy. You can escape from the hustle and bustle that is going on around you; and at night you can actually get some sleep. The other critical reason for keeping your door closed is that unless you WANT to be a fish in a fish bowl, you will protect yourself, not only from the other patients’ stares as they are doing their laps, but from all of the other patients’ visitors as well, not to mention the plethora of  hospital employees that continually roam the halls.

Let me just tell you what I saw on my daily jaunts around the nurses’ station; there were several very elderly people, some falling out of chairs, others’ lying in their beds with their heads dangling and their moths’ open; almost always alone. It was very depressing and sad. Then there were the screamers, which every time you walked by they would scream out in pain. Yes, I know I screamed when I had my bone marrow biopsy, but my door WAS closed! One of my favorites was the guy that had his bed sitting straight up; he had his shirt off, his covers down and he thought that he was “all that, and then some”, it was hysterical, he would look you straight in the eye and grin when you walked by. Rather, creepy! Sometimes you would witness a patient with a full room of visitors and often you witnessed patients hobbling to the bathroom with their rear ends sticking out of there hospital gowns. So unless you want to become part of the entertainment; I would suggest closing your door. And yes, you can train the hospital staff to close it behind them when they leave; it just takes a few reminders per shift.

Second important tip is to be really nice to the hospital staff. You are at their mercy! This trickles right down the chain of command and gets you two egg croissants when you ask for them. If you are nice to them, they answer your call button on the first buzz.

Third tip would be items of comfort; have someone bring you your own pillow, slippers, socks,  robe and jammies. You will be much more comfortable in your own clothing and resting your head on your own pillow. Ear plugs and an eye mask are essential; Desert Regional Hospital actually gives them to their patients.

Other items of comfort might include Charmin toilet paper, soft Kleenex, Chap Stick and lotion, a hairbrush or comb,  snacks that are available when you are hungry and an electric hot pot that you can either make tea or coffee, or heat up that cold soup from lunch when you are ready to eat it. A notebook and pen are also nice to have so that you can jot down questions when you think of them. A large folder or envelope is helpful in keeping all of the papers that you will be receiving organized.  A bag that holds all of these things and hangs on the side of your bed is great, too.

Being sick is no picnic and having a few items of comfort available and maintaining as much peace, privacy and quiet as possible will make your hospital stay a bit more tolerable. Remember that they also have ice And a tip for patients’; do NOT bring Yahtzee to the hospital!

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #sideeffcets  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #tipsforhospitalstay #thingstobringtohospital  #cmlspecialist #hospitaltips  #thrivingwithleukemia #livingwithcancer

Monday, December 17, 2012

Ponatinib Wins Early FDA Nod

Ponatinib Wins Early FDA Nod
By John Gever, Senior Editor, MedPage Today
Published: December 14, 2012

SILVER SPRING, Md. -- The FDA has approved ponatinib (Iclusig), a third-generation tyrosine kinase inhibitor, to treat two forms of drug-resistant leukemia, the agency said Friday.
The approved indications include chronic myeloid leukemia (CML) and Philadelphia chromosome-positive acute lymphoblastic leukemia (ALL) in adults.
The FDA noted that it was approving ponatinib 3 months before its official deadline for acting on the drug's marketing application.
Approval was based on a single phase II trial, results of which were reported last week at the American Society of Hematology's annual meeting.
In the 449-patient study, called PACE, rates of major cytogenetic and hematologic responses to daily oral treatment with ponatinib ranged from 33% to 70%, depending on the disease subtype. Toxicities were generally mild, except for a few patients who experienced serious pancreatitis.
The drug was designed to get around one of the most common mutations that confer resistance to tyrosine kinase inhibitors (TKIs), the "gatekeeper" T315I substitution that blocks binding for all three currently approved drugs: imatinib (Gleevec), dasatinib (Sprycel), and nilotinib (Tasigna).
Ponatinib is considered a pan-BCR-ABL inhibitor because it is effective against native and all tested mutant forms of the BCR-ABL protein produced by the Philadelphia chromosome, which gives rise to CML and Ph-positive ALL.
Patients in the trial had previously failed other tyrosine kinases, with most showing resistance or intolerance to dasatinib or nilotinib.
But the FDA's announcement of the approval did not say that patients should not receive ponatinib as first-line treatment.
Response rates in the PACE trial were highest in patients with chronic- and acute-phase CML, ranging from 50% to 70%. For patients with blast-phase CML or Ph-positive ALL, response rates were in the 33% to 35% range.
Common side effects were rashes, dry skin, abdominal pain, headache, and constipation, all seen in about 40% of patients. Most cases were reported to be mild.
Nevertheless, the drug's label will include a boxed warning about blood clots and liver toxicity, the FDA said.
"The approval of Iclusig is important because it provides a treatment option to patients with CML who are not responding to other drugs, particularly those with the T315I mutation who have had few therapeutic options," said Richard Pazdur, MD, director of the FDA's Office of Hematology and Oncology Products in the Center for Drug Evaluation and Research, in an agency statement.
Ponatinib was approved under the FDA's accelerated approval program, which requires the drug's manufacturer to perform additional studies to confirm the product's benefit and safety. The agency did not indicate what shape those studies would take.
The drug will be sold by Ariad Pharmaceuticals in Cambridge, Mass.

Wednesday, December 12, 2012

A Year Ago; A Magical Day!

In every situation in life, there is a silver lining. Sometimes the lining is very apparent and easy to spot, other times you have to really look for it; and then there are the times, that it just comes as a complete and unexpected surprise.

I just experienced one of those “surprise” silver linings. It began with Disneyland tickets that were given to me as a gift, and continued when we got to Disneyland; on Black Friday. I am not entirely certain what I was thinking when we decided to take my son and grandson to Disneyland on Black Friday, other than I had high hopes that the masses would be shopping, not spending the day in the Magic Kingdom. Boy was I wrong! Now, not knowing how long that I would last, or how crowded it would be, I asked each of the boys to pick their two favorite rides, so that we would be certain make it to those attractions. With those guidelines verbalized, we headed into the Magic Kingdom.

My friend that gave us the tickets told me to be sure to go straight to City Hall, in Disneyland, as soon as we got there and to tell them that I had Leukemia. Now, I must admit that I felt a bit funny about doing so, and didn’t really have any idea of what they were going to say or do, but I followed her advice and headed straight there. Once inside City Hall, I was greeted by a very friendly young man. I told him that I was instructed to come there and to tell them that I had Leukemia; I then apologized for taking up his time. He laughed and asked how many were in my party. I told him that there were four of us and he said, “Here, take this card to the first cast member, at any exit, of any attraction. This will help to make your day easier and more magical. Welcome to the Magic Kingdom and have a magical day.”

I thanked him profusely and left with my little blue card, still wondering exactly how it worked, and if I dared to use it. Once we made it down Main Street and into Adventure Land, I could tell that the day was going to be exhausting. The masses had forgone Black Friday and were all here, with us, at Disneyland. We decided to give our blue card a go and went to the exit of the Jungle Cruise. We were met by a cast member and I handed her my card. She said, “Oh, you have a green light, come with me.” She immediately walked us through the exit line and right onto a boat. I thought, “Hmmmm, that was kinda’ cool.” Next stop Indiana Jones. Now Indiana Jones has a REALLY long exit; I was literally pooped, by the time we got to a cast member, at the end of the exit line, and was really hoping that they didn’t turn us away. Once again, we were treated with a “Right this way, you have a green light.” We climbed into the jeep and headed into the Temple of Doom! I screamed louder than the kids and actually had to stop and regain my legs after we got off of the ride. I am not sure exactly why I get jelly legs, but it happens from time to time, and I literally have to stop in my tracks, or I will fall down.

 At this point, we are all digging Disneyland, with a person with cancer! Heck, my “party” was even joking that they were going to start renting me out. I began to relax and realized that I was not going to regret my decision in coming, and that I wasn’t going to have to be a bump on the log.

We continued on our journey and ended up at theThunder Mountain Railroad. We glanced around for the exit and saw a line with a handicap sign. The line had about twenty people in wheelchairs standing, or should I say sitting in it, so we got in line behind them. I suppose that we had waited about 15 minutes when our spoiled little group noticed that the line was not moving very quickly. We just figured that we had gotten really, really lucky on the previous two rides and that this was the way the rest of our day was going to go. I was actually quite grateful that we were not in the other line, which was much, much longer and decided that I would keep going for as long as I could and that would be that. When we finally reached the cast member at the front of the handicap line, she looked at my card and said, “Oh, you have a green light, come right this way.” After questioning just what the green light meant, we realized that we did not have to actually get into the handicap line, but were to go directly to the cast member at the exit, without waiting in that line at all. That line was just for people that needed assistance getting on an off of the rider. I guess that when you have a more serious condition than a broken foot or toe, you actually receive a card with a “green light” on it.

The rest of the day was spent fighting the crowds to get from place to place, but all in all, we DID have a very magical day. We had ridden many more rides that the boys’ original four choices, it was getting cold and I was getting really tired, so we decided to head to Main Street to see the fireworks show and then head home. The fireworks display was above and around the decorated castle. It was absolutely fabulous and when it ended, it began to snow. My grandson was beaming from ear to ear; he looked at me, reached up and gave me a hug and said, “Oh, Nana, this is the most magical time that I have EVER  had at Disneyland!” Of course, despite the snow, my heart melted!

So for all of my CML brothers and sister, there is at least one bonus to having cancer! Don’t be afraid to play the leukemia card at Disneyland!

Thank you Karen and thank you Disneyland! 

What to Avoid, When Using Sprycel

I recently attended the Living Well with CML, Virtual Patient Summit. It was put on by The National CML Society and Kareem Abdul-Jabbar, on behalf of Novartis Oncology. It was an extremely informative summit that encompassed many aspects of what we, as people who are living with CML, face every day.

They covered the medical aspect; both the treatment and the expense of living with CML, the physical and emotional aspect of the patient, with CML, and their caregivers, as well as the side effects from our medications and the disease.

They explained the different stages of CML and treatment goals and talked about diet and exercise. They had a questions and answer section, that a CML specialist answered, and a section that listed support groups; both emotional and financial. All in all, they covered every possible angle that Living Well with CML implies.

Today I am going to tackle the things that we, who are on Sprycel should avoid. These same things may be true for Tasigna and Gleevec as well, but because I am a Sprycel user, I only took notes regarding Sprycel.

I will also let you in on a secret:

One of the possible repercussions of taking Sprycel, is totally confirmed by my closet! “They” said that Sprycel, may slow down the user's metabolism. May is an understatement! I have been more active and more diligent about my own personal exercise since my increase in Sprycel, my eating habits have not changed, and NOTHING in my closet fits! This is totally depressing! The scale just keeps going up and my waistline just keeps on expanding; now I know why; Sprycel decrease you metabolism!

Now, what to avoid; we all probably know that we should not be eating grapefruit, or taking antacids. Medications that neutralize stomach acid may be taken up to two hours before, or two hours after, Sprycel. Confused? Hang in there and let me explain.

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

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

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

                   1.       Maalox
                   2.       Tums
                   3.       Rolaids

I know that this may be confusing, but you need to be really careful if you have heartburn! Antacids; not good. Acid neutralizers; OK

Now, for the other things that I was not aware of, things that I was not told to avoid, but learned at this summit. If you are taking Sprycel, you should also avoid the following:

               1.       Bitter Orange
               2.       Echinacea
               3.       Ginko Biloba
               4.       St. Johns Wort

I do not know what Bitter Orange is, but I have definitely taken the other three supplements, at one time or another. Guess it is just another thing on my “Do Not Take” list.

Of course, there is grapefruit and pomegranate.

Hopefully, this information helps other Sprycel users and helps to clear up the antacid/acid reducer confusion.

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #sprycel  #leukemia  #lovemylife  #cml #whattoavoid #grapefruit  #cmlspecialist #specialist  #thrivingwithleukemia #livingwithcancer

Tuesday, December 11, 2012

What is the Philadelphia Chromosome?

Until recently I had never heard the term “Philadelphia chromosome.” It wasn't until I was diagnosed with chronic myelogenous leukemia, earlier this year, that it became a part of my vocabulary; it has now taken temporary control of my life. This condition is not something that I was born with or something that I can, or will pass down to my children. It is not contagious; so you needn't run when you see me coming or wear garlic around your neck. It is my understanding that CML is just kind of a fluke. Lucky me!

There is some evidence that people treated with a high dose of radiation may have a small increase in risk, but most people treated with radiation do not develop CML and most people with CML were not exposed to high-dose radiation. So, go figure; sounds like they really just don’t know the cause.

Normal cells have pairs of chromosomes that are numbered 1 to 22, and a pair of sex chromosomes; XX for females and XY for males. Chromosomes are structures in the cells that contain genes. The genes give instruction to the cells.  This is “my” understanding of what the “Philadelphia chromosome” is; for some reason unbeknownst to all, a small piece of chromosome 22 breaks off and saunters its’ way over to chromosome 9. It then decides that it would like to stay there and hang out with chromosome 9. So it attaches itself there and sends a piece of chromosome 9 on over to keep chromosome 22 company.  
When Joe and I are teaching dance classes he is constantly saying “rotate” to the students. I told him that it must be his fault that I now have leukemia, because he said rotate just one too many times. I think that my chromosomes must have heard him and just decided to rotate!
The break on chromosome 9 involves a gene called Abl and the break on chromosome 22 involves a gene called Bcr. The Bcr and Abl genes combine to make the CML causing gene called the Bcr-Abl gene. There doesn’t seem to be any rhyme or reason as to why this occurs; it just does. This Bcr-Abl gene produces a dysfunctional protein called “BCR-ABL tyrosine kinase”; this leads to the abnormal regulation of cell growth and survival and is responsible for CML. Think of it as a faucet that is constantly in the on position. It is on and making immature white cells that are crowding out the good white cells as well as the red cells and platelets.

Monday, December 10, 2012

Sometimes Yoga Can Do More Harm Than Good

Since the Sprycel medication, used to treat my chronic mylogenous leukemia, can often cause muscle spasms, I thought, that instead of taking another medication, to control the spasms, I would try Yoga. I use Voltaren Gel, when the spasms are really bad, and that is a life-saver, but I was hoping to lessen the attacks, with Yoga.

So, I purchased a DVD online and started with the first routine. My body seemed to respond positively and my spasm attacks, seemed to be less frequent. I quickly progressed from the introductory routine to a more challenging routine. The routines that I alternated between were approximately 45 minutes in length. I was thrilled at how my back was responding, but not thrilled with the increase of numbness in my hands, particularly at night.

My hands have been falling asleep or going numb for quite some time; this also, is either due to the leukemia, or the treatment, as many of my CML buddies suffer from the same thing. Anyway, since I began Yoga, this has increased and also continued throughout the day. In addition to my hands falling asleep, my wrists and elbows are now, also affected. They ache continually and I am beginning to think that the Yoga is causing more damage, than benefit.

It is not really all “Yoga”, but the upward and downward dog positions, and the push up positions that are putting strain on my joints. So much strain that I have had to stop any Yoga that uses my wrists. I am going to have to find a different Yoga DVD, or other type of DVD that will allow me to strengthen my core at a slow and steady pace, that does not put strain on my wrists. I cannot afford to keep dropping everything that I pick up, and I am fatigued with the constant ache in my arms.

Ideas or suggestions are welcome!!

Sunday, December 9, 2012

Side Effects or Leukemia?

It seems that every single day presents itself with a new challenge. One thing that I have noticed for sure is that I can never actually figure out whether what I am feeling is a side effect from my Sprycel (Dasatinib) or from my leukemia. I suppose when it comes right down to the bottom of it, it really doesn’t matter all that much.

Of course my every day, overall feeling has certainly changed since being diagnosed with leukemia six months ago. Almost every single day I feel as though I am coming down with the flu, you know the overall achy, maybe I have a fever feeling; that I am becoming accustomed to. I am also getting used to the pile of hair on the floor every morning. That has become smaller since I cut my hair. The chronic fatigue and heat intolerance is also now, just a part of life.

The intermittent issues are probably some of the worst side effects; the bone pain, the mouth sores and the skin rash, really suck. Luckily they do not occur every day. However, for the past week, I have had two mouth sores; they are killing me. I have a teeny, tiny one on the very tip of my tongue and one on the side. They are so small that you can barely even see them; yet they hurt so much that I cannot even sleep. Talking is also an issue; the one on the tip of my tongue makes me sound like a drunk, slurring my words. I never realized how important the tip of my tongue was until I had this teeny, tiny little bump on it. Eating is also a huge challenge. It totally sucks when two of your favorite past times, talking and eating, cause you pain.
After the first two days, I decided to try Campho-Phenique; it is a topical antiseptic used to temporarily reduce pain in minor cuts, scrapes, burns and insect bites. I remember my mother torturing me with it as a child. It tastes horrible, but does offer some relief. I used the Campho-Phenique and Ibuprofen but still could not get the pain to subside.

Happy 18th, Kevin!
Despite my achy-breaky mouth, I decide to go to the desert for a few days to visit my family. Of course, I was hoping that my dear mother had a miracle cure, as she too suffers greatly from mouth sores, due to her medication. My mother, my hero, DID have a possible cure. She had an entire bottle of Nystatin on hand and I began to use it, after first checking the drug interactions with Sprycel; to make sure that it was alright. It burned like crazy, but is supposed to coat your mouth and help to heal your sores.

Later that night, my brilliant mother brought me some maximum-strength Oral-Jel…can I just say “Duh” right now? How stupid am I? Ora-Jel totally “numbs” the area for quite some time. Any of us that have had children know about Ora-Jel, right? I am now in heaven! I slept four hours straight last night, re-applied the Oral-Jel and slept for four more hours. Hopefully, the Nystatin and the Ora-Jel combination will quickly return my mouth to working order.

Thank God for mothers! Good-bye Campho-Phenique: Hello Ora-Jel!

Friday, December 7, 2012

My Leukemia Symptoms

Our brains have a strange and very capable way of enabling us to cope with just about everything that is thrown our way. Looking back a month or two prior to being diagnosed with chronic myelogenous leukemia, I now am able to clearly see the signs that were right in front of me. Of course, my very capable brain was able to create a perfectly logical explanation for every one of my symptoms.

Probably one of the very first symptoms that I noticed, and disregarded, was my hugely swollen spleen. I remember lying in bed one night reading; I said to Joe, “You know, things just don’t seem to fit in here like they used to.” I just didn’t feel like I could get comfortable and that “things” were crowded on the left hand side of my abdomen; up under my left rib cage. It felt tight to the touch, but it also just felt thick, like muscle. It didn’t hurt and most of the time I didn’t even notice that it was there.

The second symptom that I noticed was probably the fact that I was just a bit more tired than usual. That symptom was easily discarded since Joe and I are always on the go. Our feet hit the floor running every morning and don’t stop until we go to bed. That coupled with the fact that I was soon to be 52, I just chalked being tired up to, doing too much and "old age"!

The third symptom was that I seemed to become a bit short of breath, when I danced. December was a very busy dance month for us as we were preparing to dance at the UCWDC World’s Championship in Nashville Tennessee, the first week of January. That year was the very first year that I had ever competed in anything in my life. We competed in the Pro/Am division and I was the Am. Dancing was something that I had wanted to do my entire life and I had finally begun to learn to dance a few years prior. Joe and I actually met when I took a class that he was teaching at a dance convention and now we are competing in the pro/am category.

So, back to my windedness; we compete in eight dances and while practicing our routines, it is typical to run through them one right after the other for an hour straight. I started running out of gas during practice several months before World’s.  When I was competing, I was wondering what the elevation of Nashville was, as I was a bit winded dancing there. I didn’t know if it was the elevation or my nerves, but I did notice that I was a bit short of breath after every dance. After competing at World’s, we took a short hiatus from practicing; when we resumed, I told Joe that it seemed weird how quickly I became winded. I had to stop between routines to catch my breath. I chalked that up to being out of shape, and for being a slacker for the past three weeks. Of course, now I know that it was a symptom of my leukemia. I did place eighth in my division at World’s; but I just know that if I hadn’t had leukemia, I would have come in first!! And no, there weren’t only eight in my division, there were twenty four competitors.

My fourth symptom was the bruising. Now I must preface this with the fact that I am very clumsy and am always bruised. I never remember where I got them; I just know that they are there. Looking back though, this bruising was different. The bruising on my body, just prior to being diagnosed with CML was a bit odd. I seemed to have more of them and they seemed to last longer. They were also hard to the touch; like a bulge under the skin. (This was from the overabundance of white blood cells.) They popped up with a slighter bump or bang than they used to. I noticed them and reprimanded myself to start being more careful. The odd thing about this symptom is that I KNOW that it is can be a sign of leukemia. When my daughter was only four years old, I took her to the doctor and insisted that he check her for leukemia because she was always covered with bruises. Yes, she was a tomboy and no, I didn’t beat her! It is amazing to me that I never correlated the bruising to leukemia within myself.

The fifth symptom was probably the headaches. I had been having headaches at the back of my head for quite some time. I chalked that up to needing my eye glass prescription updated and changed. The headaches seemed most prevalent at night, while watching TV or reading, or while working on the computer. In other words, while concentrating. Yes, I know, taxing on the brain! I made an appointment to go and see an optometrist on January 13, 2011. During my eye exam, while looking into my eyes with that very bright light, the doctor asked me three questions. “Do you have high blood pressure?” I answered, “No, I have low blood pressure.” “Do you have diabetes?” I answered again, “No, not that I know of.” “Are you anemic?” Once again I answered, “No, not that I am aware of,” “Why?” “You are frightening me, should I be scared?” He replied, “Well, you have a significant amount of blood in your eyes.” Of course, I freaked out a bit and asked him what it could mean. He said that he wasn’t sure, but assured me that I would not go blind, but also said that I should make an appointment to see a retina specialist within the next month or so.

Now you must remember that I have been dealing with Cipro poisoning for the past nine months. My immediate reaction was that this might also be Cipro related. I went directly to the pharmacist and told her what the eye doc had said and asked her what she thought. She agreed that it could very likely be Cirpo related as Cipro not only affects your muscles, joints and tendons; it can also affect your vascular system. That in combination with all of the Ibuprofen that I had been taking for the muscle pain, my vascular system could be compromised and my blood could be thin causing the eye bleeds. I left disgusted and prayed that it would not be Cipro related because if it was, there was nothing that could be done. Moral to that story, be careful what you wish for and be very specific when you are sending out prayers!

The sixth symptom was the night sweats. I had been having night sweats for approximately six weeks and would wake up damp and cold. I was constantly kicking the covers off and then pulling them back on, all night long. This of course I related to hormones. It was a no brainer and I would be talking to my doctor about it at my next appointment.

Number seven was the bite-like rash that I suddenly starting getting on my torso. You know that the first thing I did was wash my sheets and check the bed for bed bugs. I was convinced that we must have them and that I was just sweeter than Joe, because he didn’t have any of the bites! You guessed it, no bed bugs. I hadn’t changed detergent and I hadn’t been camping. My skin is still very sensitive and I really just want to run around naked all of the time as clothing drives me crazy. Let’s hope the phase passes!

The last and final symptom, and probably the one that would have eventually sent me to the doctor, was the extreme fullness I felt when I ate; and my funny blood. It was Super Bowl Sunday and I had a routine doctors’ appointment in two days. Joe and I were viciously trying to get our yard work done before the Super Bowl began.  I was mowing the front yard while he mowed the back. I remember finishing one side and looking at the other thinking, I just can’t do it! I was pooped and  had to force myself to finish mowing the lawn. I kept thinking what a baby I was being since I had mowed the front and back on previous occasions and never even been tired. I convinced myself to finish mowing and while doing so I pricked my arm on a rose thorn. It started to bleed and I ignored it. Joe had finished the back yard and had come to see how I was doing. I was through mowing and was putting the mower into the garage. Both of us looked at my blood and thought that it looked “weird.” We both said, “That doesn’t look right.” It was sort of an orange color, not really red. I still had not a clue; my brain and common sense in total denial.

Joe started the BBQ and I made a salad and veggies. We sat down to eat and within four bites I was stuffed. I thought that it was strange as I usually eat much more, but figured that my lunch was still with me. Being that Joe works for Anheuser-Busch, we of course had beer on ice. I found it odd that it took me practically an hour to drink just one beer. The Super Bowl was over and I was still miserably full. I wasn’t even able to go to bed until midnight because I felt like a stuffed pig. I was so miserable. Do you think that by now I would have a clue that something was terribly wrong? Looking back, I can hardly believe that I didn’t.

So, as a recap; my symptoms included fullness due to a swollen spleen, eye bleeds due to blocked and burst capillaries from an overabundance of white blood cells, shortness of breath, funny looking blood, tiredness, bruising, night sweats, a skin rash and frequent headaches. All of these I easily explained away and none of them interfered with my everyday life. Duh!

Bricks for the Brave!!