Monday, September 30, 2013

Sprycel Vacation: The Good, the Bad and the Ugly!!

Interestingly enough, I have noticed many different things that Sprycel does, and doesn’t do, to my body. After a nearly three week vacation, it has been difficult in some ways to return to my CML treatment, but comforting and even helpful, in others.

The major disappointment in returning to treatment is my missing “spark”; Sprycel seems to have a way of diminishing my inner “happy” glow! I know that sounds silly, and I am still an extreme optimist, but the bursting-over joy, that I have when I am not on Sprycel, just is not the same. This coupled with the fact that when I am not on Sprycel, the leukemia has an opportunity to kick start its engine.

That being said, there is a comfort to returning to the battlefield. The most difficult part being the return of the side effects; I have suffered greatly from muscle spasms in my back, am extremely tired, and once again, my hair is starting to fall out! Ugh, it was finally beginning to grow again. The afternoon, flu-ish, fever-y feeling has returned, along with the headaches.

The Good news is that the peripheral neuropathy, from the Cipro damage, is beginning to subside again. I still cannot believe how taking Sprycel keeps the pain in my feet, and joints in my legs, at bay. I suppose this really is the golden lining to living with a chronic cancer; totally strange!

My belief and hope is that it will not take as much time, as it did when I first began taking Sprycel to adapt to the medication and for the side effects to seem less severe. I often wonder whether the side effects actually lessen, or if we just learn to better adapt to them.

What do you think?

Thursday, September 26, 2013

When Dealing with Illness; Knowledge is Key!

Looking back two and a half years, I can still remember hearing the words, “You have leukemia.” And the number one thing that comes back to me now, was me thinking, “Crap, I don’t know a thing about leukemia.”

Well, let me tell you, I now know a TON about leukemia, particularly chronic myelogenous leukemia, also known as CML, and I truly believe that no matter what illness or condition that you may face; knowledge, about that subject is the key.

Every single day, new people join our CML boards and groups; more and more people are living with CML. Our numbers are rising at a rate of about 6,000 new cases per year. I recently read that there are an estimated 44,000 people, living with CML.

This shocks me; it feels as though we are a drop in the bucket!

However, since people are now LIVING with CML, and more and more are being diagnosed daily; this number will continue to grow. It has really only been during the past twelve-ish years, that people, who are diagnosed with this type of leukemia, are no longer issued a death sentence; we now will be given the chance to live, to share our knowledge and hope for a cure.

Anyway, back to my main topic; Knowledge is Strength. Here are some links to help newly diagnosed CML patients learn the ropes! Many of these suggestions will be helpful to others, as well.

  1. Signs and Symptoms of Leukemia
  2. Tips for a More Comfortable Hospital Stay
  3. When Choosing a Doctor; Choose Wisely
  4. Understanding CML
  5. Sprycel vs Tasigna vs Gleevec: In My Words
  6. So, Just What is a Philadelphia Chromosome?
  7. Treatment of CML
  8. Living with CML
  9. CML; Measuring It’s Response
  10. Measuring It’s Response Part 2
  11. CML: Finding Information
  12. CML; The First Phase Chronic
  13. CML; The Second Phase; Accelerated
  14. CML; The Third Phase: Blast Crisis
  15. Important Questions for CML Patients
  16. One Thing that All Cancer Patients Have in Common
  17. Sprycel; Financial Help
  18. Patients vs Medical Professionals: Do Your Homework!
  19. Be Your Own Self Advocate
  20. Questions You May Not Have Though to Ask

These are some of the highlights and most important articles on my blog; things that I wish I had had at my fingertips when I was diagnosed with CML. I hope they are of some help, to you!

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #hopesanddreams  #cmlspecialist #specialist  #thrivingwithleukemia #livingwithcancer

Tuesday, September 24, 2013

Where I Get My Strength to Fight CML

Yesterday, my father peacefully left his deteriorating body, for the arms of our Heavenly Father. He fought his battle with strength and grace; my mother, always by his side, despite her own serious medical issues.

Throughout my life, my parents have displayed an amazing amount of courage, strength and grace; through thick and thin, sickness and health, good times and bad, their faith, and dedication to each other never wavered. They were always there for each other, as well as their children, grandchildren and great grandchildren.

It was my father that drove me to the emergency room when I received the call that I had leukemia. As always, a pillar of strength, my father said, “Shell, things are going to be all right, we will face this and do whatever needs to be done. It is what it is.”

“Yes, Dad, It is what it is.” And this is how he faced his own decline; head on, taking it day by day. He never complained and never asked why; he simply faced each and every day, as well as every complication, with determination, acceptance and courage.

And then there is my dear, sweet mother. Talk about a pillar of strength; all 90 pounds of her. She has a broken wrist, a shoulder that is barely attached to her body and a wound on her leg that I call the black hole, which has not healed in many, many years. Her pain level would have caused me to jump in front of a bus many years ago. Yet, there she was, by my father’s side, encouraging him and caring for him; never a complaint, right till the very end.

She IS the Energizer Bunny, she has taken many lickin’s and keeps on tickin’; she is a force to reckoned with and amazes me daily. I know that she will be missing my father desperately, during the rest of her journey. Yet she will never complain, she will continue to live her life to the best of her ability, always giving more of herself than she should. It is her nature to do for others, before thinking of herself. Mom, if you read this, I want you to think of yourself first, from now on! This is a direct order!

Thanks to the example of my parents, I have the strength and courage to fight my own battles. They have demonstrated through their actions, how to face tragedy and despair with dignity, difficulties with grace, and how to love unconditionally.

Leukemia doesn’t stand a chance! I have their inherent stubbornness, as well as their tenacity and I Thank God for the privilege of being their daughter.

Mom and Dad, you taught me well. Thank you.

All My Love and Admiration,
Your daughter,


Sunday, September 22, 2013

100mg of Sprycel It Is; The Experiment Continues

After being off of Sprycel for approximately three weeks, my pleural effusion has mostly cleared and I have begun to re-introduce Sprycel into my body. I began this next phase of my experiment with 70mg of Sprycel for twelve days; at the end of the twelfth day, I felt as though my pleural effusion had continued to clear up and that I really was back at optimum breathing capacity.

This gave me the courage to up the dose of Sprycel to the recommended amount. My oncologist originally suggested that I ingest 140mg, 5 days per week, as I was on 140mg, 6 days per week when I reached PCRU. 140mg, 5 days a week equated to 700mg, per week. My thinking on the matter was, “Why not 100mg, 7 days per week?”  The week amount is the same and may hold keep me from developing pleural effusion, again.

Also, maybe the side effects won’t be as bad. On the downside, I won’t get a 2 day, per week vacation. It really is a tossup in some ways; do I need the Whammy of 140mg, with the breaks in between? Or is the consistency of 100mg enough? Which choice will give me a better quality of life? And which choice will help me to maintain a negative PCR?

Will I have come out of PCRU as a result of the lack of medication, due to the pleural effusion, and if so, will I be able to regain PCRU prior to my next PCR test? All of these questions shall be answered, in time.
I contacted my oncologist and asked him whether my next step in this process should be 100mg, 7 days a week, of 140mg, 5 days a week and his response was; “There is no data to direct us, so either is fine.” Please remember that he helped to develop Sprycel and is still currently collaborating with Dr. Drucker in CML research, so, since this was his response, I am choosing 100mg, 7 days a week. I hope that it is the correct choice, for me. I am ready to rejoin the battle!

Here is to a negative PCR test in December!

Thursday, September 19, 2013

Things You Shouldn't Say To Someone With Leukemia

I did not write this, the credit goes to: "CallMeLucky" and I do think it is worth sharing!
Thanks to Pat Elliot for bringing it to my attention. A great thing to share during National Leukemia and Lymphoma Awareness Month.

1) Do not tell people with leukemia about someone you know of who had leukemia and died. This goes for first hand knowledge, something from a movie or the paper and especially not a cousin of a friend who knew a guy....

2) Do not tell people with leukemia "they can cure that now". Again a sister-in-law's second cousin's co-worker is not a good reference.

3) Don't tell people with leukemia "but you don't look sick". As much as it's nice to know that we don't look as bad on the outside as we may feel on the inside, it kind of minimizes what we are going through. If the person with leukemia does look sick, you probably shouldn't tell them that either.

4) Don't tell people with leukemia "you're lucky, there's a pill for that". Unless you are taking the pill, shush...

5) Don't tell people with leukemia "you just need to stay positive". The only response to this statement should be "I am positive I have leukemia".

6) Don't tell people with leukemia they should start taking vitamins, herbs, coffee enemas, eating organic foods etc. We know eating healthy is important but we also know there are a lot of things we can't take. No vitamin is going to cure leukemia and the implication, whether you meant it or not, is that if we had done these things to begin with, we wouldn't have gotten leukemia in the first place.

7) Don't tell people with leukemia to "suck it up". If you do, expect to get a modified response of "you suck it".

Don't tell people with leukemia "what doesn't kill us makes us stronger". I should be able to lift a car over my head at this point, the fact is I am getting weaker, so please spare me the cliche.

9) Don't tell people with leukemia "it is what it is". Thanks for the deep philosophical thoughts, I know you think you're being deep, but you're just being dismissive.

10) Don't tell people with leukemia "so it's pretty much like diabetes, you just take your medicine and you're fine". Wow, you managed to marginalize not just one but two very serious diseases.

11) Don't tell people with leukemia "it could be worse". Once again aside from being incredibly dismissive, it makes us think about what could be coming around the corner.

12) Don't tell people with leukemia "we all have to die sometime". Really? Tell you what, you go first and let me know how it goes.

Wednesday, September 18, 2013

Peripheral Neuropathy, from Cipro, Returned; Not Good!

As many of you may already know, four and a half years ago, I suffered severe side effects from an antibiotic, in the floroquinolone family, called Cipro. The first time it happened, I suffered a ruptured tendon. I did not correlate the ruptured tendon to the antibiotic, Cipro.

Eleven months later, I was nearly crippled by the drug. I was given it a second time for a urinary tract infection; I took five pills and my body was destroyed. I mean literally destroyed; I suffered from the worst pain I have ever felt, in my entire life. It was mostly located in my hips, legs and feet. The pain was constant, excruciating, and never subsided. This time I DID realized that it was caused by Cipro.

I also suffered from light sensitivity and total brain fog. This is not something that you would wish upon any one, not even your worst enemy. There is no way to reverse these side effects and doctors simply shrug their shoulders when presented with a floxed patient.

Oddly enough, I suffered with this destruction and peripheral neuropathy, right up until I received chemotherapy treatments, after being diagnosed with CML. Oddly enough, there is something in the chemotherapy that can reduce symptoms in RA patients, and now I have experienced the same thing; pain relief. I was ecstatic and figured that this pain relief was the golden lining, in having leukemia.

Fast forward two and a half years; the peripheral neuropathy and the light sensitivity have improved drastically, although I cannot say the same thing about the brain fog. All was well until I developed pleural effusion and bronchitis last month; I had to go off of my Sprycel treatment, until my lungs were functioning properly, again.

 Within ten days of ceasing the Sprycel, the peripheral neuropathy began to return. I started getting extreme pain in the balls of my feet and toes, (my hardest hit area), skin sensitivity and the feeling that my Achilles and other tendons could rupture if I was not careful. I was horrified and angry. It really makes me ponder the correlation between the peripheral neuropathy and the TKI’s, as well as the chemotherapy; AND just how damaging this class of antibiotics, really are.

Moral to the story; I am actually blessed to have CML because living with that sort of pain is truly unbearable. It literally made me wish I would die; I would rather have cancer than the pain associated with the damage from those drugs. How sad it that?

In my opinion, unless it is an absolute, last resort, life or death situation, the floroquiolone, antibiotics Cipro, Levaquinn and Avelox, should be avoided like the plague!

Tuesday, September 17, 2013

Why 140mg of Sprycel? The Explanation

Many of you have asked, and been concerned about the high dose of Sprycel that I have been on. For those of you that do not know, the highest dose of Sprycel, recommended by the manufacturer, Bristol-Myers Squibb, is 140mg. 140mg is typically only used when a patient is in either an accelerated phase of chronic myelogenous leukemia, or blast crisis. 100mg of Dasatinib, aka Sprycel, is the recommended starting dose of Sprycel.

When I was diagnosed with CML, on February 9, 2011, the oncologist thought that I was in Blast Crisis, as my white blood cell count was 385,000. A bone marrow biopsy was performed and confirmed that miraculously, I was still in the chronic phase. Nevertheless, I was hospitalized, given a chemotherapy drug called Cytarabine, and treated with leukapheresis. Once my white cells were below 100,000, I was released, and given a prescription of 140mg of Sprycel.

This was eventually lowered by another oncologist, to 100mg, once a day. For one year, my PCR decreased, and then it began to increase. After two increases, my oncologist, a highly respected CML specialist, currently collaborating with Dr. Druker for continued CML treatment, increased my dosage to 140mg, 6 days a week. He felt that hitting it hard, and giving my body a 1 day a week “break” was the best option for me. This decision came after three increases in my PCR, so it was not made lightly.

This, however, did not work; my PCR continued to rise. We talked about switching TKI’s if my PCR did not decrease on my next visit, three months later. It was during those three months that I hypothesized my low stomach acid, low absorption theory. We decided that I would give Sprycel onemore chance, and that I would actually take the Sprycel with something acidic. I decided that I would try the Bragg’s Apple Cider Vinegar, as I had heard that there are other health benefits to the vinegar, in addition to dealing with the possible low stomach acid.

Well, low and behold, apparently it did the trick. Taking 140mg of Sprycel, 6 days a week, dropped my PCR from the highest it had ever been, to a negative reading; the downside, I developed pleural effusion. And yes, my side effects also increased, which tells me that even though we increased the Sprycel to 140mg, it wasn’t so much the increase that dropped my PCR, but the addition of the vinegar which increased the absorption. So the big question is; Now What?

So, anyway, back to the “why” I was on a high dose of Sprycel; it was because I wasn’t responding to the lower dose and my PCR was steadily increasing. My oncologist didn’t want to give up on it yet because he felt that Sprycel was still my best option for reaching PCRU with the least amount of side effects and the most flexibility.

Even though it was the highest dosage of Sprycel at 140mg, the dosage in mg’s is still lower than the amount of mg’s that he felt I would have to take, of the other drugs, to achieve PCRU. If this makes any sense! Lol  So, we stuck with it.

And like I said before, he is a highly respected CML specialist, currently working with Dr. Druker in CML research, so I feel as though he is “in the know” and doing what he feels is best; for me. The trick will be balancing the dosage of Sprycel; to remain in PCRU,with no pleural effusion.

I guess the next PCR and visit, will tell the true tale. 

Monday, September 16, 2013

Back on Sprycel; Side Effects Return

I have returned to the land of Battling CML! I resumed my Sprycel intake, eleven days ago. This time, I was happy to do so. With my last PCR being negative (a great thing for those of us with CML), I am extremely anxious for it to remain there. To do so, I must be on my medication.  Feeling crummy when you receive good lab results is so much more tolerable, than when you receive unfavorable ones. I am SO ready to get back on this horse!

My oncologist suggested that I waited until my pleural effusion cleared up, and then to begin taking 140 mg, 5 days a week, as opposed to 140mg, 6 days a week. Since I could tell that my PE wasn’t quite cleared up, and I was beginning to freak out because I had been off of my medication for two and a half weeks, I asked him If I could begin taking 70mg of Sprycel, just to get some of it back in my body, and see how my lungs would respond.

I suppose that he knows how stubborn I can be, so he just said, “That would be fine.” So, that is what I have done. The results are: my PE seems to have cleared up; I would say that it is 95% gone. However, some of my side effects have returned. The most bothersome side effect is the back spasms, I have been absolutely miserable with those. I cannot sit for very long, lying down can be torturous, but at least standing and walking are tolerable; I was even able to dance, a bit!

The mouth sores have reappeared, but fortunately only two of them, and they are not too horrible, yet. I am getting that flu-y, fever-y feeling, late in the afternoons, and am much more tired than I was, while I was off of the medication. I suppose that these are to be expected, and I find that it is interesting that they are present, on half the dose of medication. I am thinking that the vinegar is helping with the absorption, and really is an accurate proposal.

At a Friend's Wedding
I imagine that eventually my body will begin to adjust to the Sprycel again, and that these side effects won’t seem as bad; regardless, I am grateful to be able to continue fighting, for another, negative PCR.
All of this makes me wonder if I really do need to be on 140mg, even five days a week, to remain in PCRU. How much should I experiment and gamble? I was planning on upping my dose this week, to 100mg per day, to see if my PE remains stable; but the next question would be, do I remain at 100 mg, or do I go back up to 140mg, 5 days a week.

My brain is leaning towards 100mg, 7 days a week equaling 700 mg a week, which is the same amount as 140mg, 5 days a week. I suppose that I will email my oncologist and see what he says, but in the meantime, what do you think?

Friday, September 13, 2013

Are There Health Benefits to Apple Cider Vinegar?

Apple Cider vinegar is one of those things that people love to debate; some people swear by it while others scoff. I know that it is helpful in achieving the goal that I have set for it; to add acidity to my stomach, to better the absorption of my Sprycel, but hearing so much about its’ uses, got me wondering;  are there other health benefits to Bragg’s Apple Cider Vinegar?

Apparently, while there is little scientific proof, people have been using vinegar for centuries, for a plethora of things. They used it to pickle food, polish armor, clean coffee pots and just about any ailment that presented itself. It has become so popular as a health tonic that you will now find it in health food stores, as well as the grocery store.

There are claims that it has shown promise in helping diabetes, cancer, heart health, high cholesterol and weight loss. People use it to cure hiccups, diarrhea, sore throats and stuffy noses.  I truly believe that it has helped with the absorption process of my cancer drug, and has aided in my negative response achievement.

 If you are interested on "how" I came to this conclusion, you can read about it here:

At this point, I think that I shall continue to take Sprycel, with a tablespoon of Bragg’s Apple Cider Vinegar diluted in water, and hope that other parts of my body are benefiting, as well.

Wednesday, September 11, 2013

Legos for Leukemia is now Bricks 4 the Brave!

September is National Leukemia and Lymphoma Awareness Month and a great time to increase the public knowledge of these diseases. Leukemia and Lymphoma are both malignancies, of the blood or bone marrow. While we may often associate Leukemia as a childhood cancer, truth of the matter is that 90% of Leukemia’s are diagnosed in adults; although children are more likely to be cured.

Before being diagnosed with chronic myelogenous leukemia, two and a half years ago, I knew little about it; what I did know, was that I am eternally grateful that I am the one with Leukemia, not my children or my grandchildren. I am happy to take this one for the team!

Last year, I was so grateful for all of the help that I received during my first year of treatment, that I wanted to give back; and what better way to give back, than to collect Legos for children that are spending many, many months, in hospital rooms under isolation, fighting their own battle with Leukemia.

Through all of your donations, I was able to collect and deliver over 200 boxes of Legos to two Children’s Hospitals. I know that we put smiles on the faces, of many children. I would love your help, again this year. If you are willing and able, please send either a new box of Legos, or a gift card for Legos to:

Michele Tschirhart
83 Falcon Drive
Boise, Idaho 83716                                                                                                                                                     
This video, of a young boy named CJ, will show you just how important that set of Legos is to a child. He is in the hospital for his second bone marrow transplant. I know that I was certainly impressed by his Death Star.
Thanks in advance for your donations! 

Tuesday, September 10, 2013

Living with CML? Create Your Own Brief History

Living with CML? Create Your Own Brief History
Recently I was talking to another CML buddy about my pleural effusion. He has also suffered from pleural effusion as well as many other side effects, which many of us deal with, too. I thought that I was pretty darn good at keeping tabs of my medical issues and records, but when I saw his “Brief History” I was very impressed.
He actually encouraged me to start my own brief history quite some time ago, and I am not really sure why I never got around to it. Now, I have to go back through my “thick” medical records that I DO have, and create a wonderful “Brief History”, like his!
I would encourage each and every one of you to do the same; even if you don’t go back to your diagnosis, you can begin documenting your important data now, as we all will be managing and living with CML, for the rest of our lives.
My friend has kindly allowed me to share his Brief History, with you, as an example.

DX CML 12-23-2008
MDA Protocol: Tasigna-400mg; 2xday-1/09
On Flecainide for AF...still had frequent episodes
Q PCR bone@ MDA…0.17 on 7/09
Acute Pancreatitis-7/5/09
Stopped Tasigna-7/13/09
Q PCRU blood @ Baptist…undetected-7-29-09 !
Started Gleevec-400mg/day-7/31/09
Developed rash ~ 8/19/09
Rash treated with Steroids..improvement
Rash worsens~9/22/09
Stopped Gleevec-9/28/09
Restarted Gleevec @300mg/day-10/8/09
Stopped Gleevec-10/13/09-toxic rash\
AF returned infrequently
Q PCR bone-0.05
Started Sprycel @ 100mg/day-10/20/09
Some AF...increased FLecainde..1, 2x/day
Q PCR bone @ MDA..0.07
Stopped Alcohol…no AF, ½ Flecainide 2x/day
Q PCR Blood @ Baptist…Non Detectible-12-13-10
Q PCR Bone @ MDA..0.01--2-25-11
Q PCR Blood @ Baptist…Undetectible-5-19-11
Reduced Flecainide to 1/2 per day
Pleural and pericardial Effusion: stopped Sprycel-12-6-'11
Prednisone 50mg /day to combat PE; 12/14/'11 gradual reduction
Pleural Effusion clear 12-21-11
Started Sprycel 70mg/day..12-23-11
QPR bone @ MDA.. <0.01...2-16-12
Started Sprycel 50mg/day..3-10-12
Chest pains...slightly more PL Eff 4-19-12
Steroid Dose pack to alleviate:.still on 50mgs
Change to 20 mgs/day Sprycel..4-26-12
Chest clear, effusion gone-5-14-12
Q-PCR Blood @ Baptist-Undetectible-6-13-12
Neuropathy moving up legs, some weakness noted--12
Q-PCR Blood @ MDA..<0.01…8-21-12
Q-PCR Bone @ MDA…<0.01….3-5-13
Q-PCR Blood @ Baptist….Undetectible..6-19-13

Monday, September 9, 2013

Leukemia, Medication and Bumpy Skin!

It is strange how we take the smallest, little things for granted; such as smooth, clear skin. Recently, after not seeing my daughter for a while, I had the great pleasure of feeling her wonderfully, beautiful soft, smooth skin. I gave her a hug, and I swear her skin felt like silk; such a contrast to my now, sandpaper, bumpy skin.
I really do not know which the culprit is; the leukemia or the medication. I have so many CML friends that suffer from the same thing; bumpy skin! Funny thing is that we are all on different medications. So, is it the medication? Or the Leukemia?

Since I not only have bumpy skin, but really, really dry, scaly skin too, I decided to do an experiment for 30 days. So, for 30 days, I rubbed Lubriderm on my entire body, after my bath. I know that this doesn't sound like a very difficult thing to do, but for me, it was a chore! It is not like I have to coat an entire elephant in Lubriderm, or that it takes me more than a minute or two to do so, but it really is not something that I look forward to doing. I hate getting lotion in my rings, and I hate taking them off. I also don’t like to be cold, and living in the mountains, my bathroom is almost always cold! So being damp with lotion, in my cold bathroom, is not fun!

There were many mornings that I wanted to skip the daily lathering of lotion, but I did not. I used it regularly, every day, and low and behold, my bumpy, scaly skin has improved by at least 90%. The majority of the bumps and the scaly-ness have mostly disappeared. I can now touch my own skin without being totally grossed out.

I feel as though my experiment has paid off, and I am going to continue to use Lubriderm on a regular basis. I do not receive and free product from them. Or anything for advertising from them; the recommendation came from my mother. She swears by it!

I certainly am not a dermatologist, and I am sure that we are all very different, but if this helps even one of you, it will be worth it. You can purchase Lubriderm very inexpensively at Costco! Hoping for the same results for you!

Saturday, September 7, 2013

What is Pleural Effusion and What Does it Feel Like?

While the term “pleural effusion” sounds like a big scary word, in layman terms it simply means “an abnormal amount of fluid, around a lung.” The “pleura” is a membrane that lines the surface of the lungs, as well as the inside of the chest wall, outside the lungs. In pleural effusions, fluid accumulates in the space between the layers of the pleura.

Typically, we all have approximately one teaspoon of watery fluid in our pleural space; which allows our lungs to move smoothly, in our chest cavity, when we breathe. A pleural effusion occurs when this fluid is increased. The actual condition of pleural effusion is not necessarily dangerous; typically, the danger is imposed, by the underlying cause. There are many serious causes for PE, but in my case, it is caused by my medication.

Apparently Dasatinib, also known as Sprycel, is the culprit. My oncologist said that he often sees pleural effusion develop, when a patient reaches PRCU; this PCRU is determined, by a negative Polymerase Chain Reaction test. A negative PCR means that this particular blood test was unable to detect the BCR-ABL protein, in your bone marrow. This does not mean that you are “cured” but it does mean that you have reached the deepest, possible response to your medication; which is a good thing.

What does having pleural effusion feel like? For me, I began to notice that I was a bit out of breath, after dancing. Typically I could dance to three or four songs without being too winded, or needing a break. As my PE developed, I noticed that I could barely make it through one song, without being totally winded. Of course, I just figured that I was out of shape, and needed to dance more. It never occurred to me that I was actually short of breath for a “reason.”

This continued for several weeks, and I began to notice that I was short of breath going up our stairs, at home, too. Joe kept encouraging me to walk the loop, around our neighborhood, and I kept finding reasons not to. I could not even fathom walking down to the end of our drive way, let alone the two mile trek around the neighborhood. In some ways, I felt like a great big baby, looking back, I can’t believe that I was actually able to ignore the obvious signs, and never even consider that I was developing PE.

I am really good at denying the fact that I have CML, and all of the side effects that go along with it.

So, back to what it feels like, to have PE. The earliest and most obvious symptom for me was shortness of breath. The other symptom that developed over time and remains is a pain in my lower left, abdominal cavity. When I went to see my onc, I asked him if it could be my spleen, despite the fact that I didn't feel any enlargement.  He promptly told me no, that it was PE.

This pain has remained and hurts more when I yawn, or take a deep breath. It is a sharp pain, about three to four inches below my left rib cage, on the outer side of my abdomen, and into my back. It seems worse in the morning and is more noticeable when I lie down. The best way in which I can describe it, is that it feels like blister, full of fluid. You know that “full” feeling that a blister creates? And then, when I breathe, it feels as though I am pushing on that blister. It is more like pressure, than actual pain; the pain is caused by the pressure of expanding my lung, in a space that is now partially filled with extra fluid. If that makes any sense!

Am I in any immediate danger? I do not think so; I can breathe, and I do not have a fever, so most likely, I do not have an infection. I have been off of Sprycel for two and a half weeks and there does seem to be some improvement in the shortness of breath; despite the fact that the pain remains, when I take a deep breath.

So what now? It is my and my oncologist’s belief that I will be able to resume my medication, and control this pleural effusion. We also do not see any need to actively treat the PE, as we know the cause, and it does not impose an immediate threat to my health; it is mostly just a nuisance. I do not have congestive heart failure, pneumonia, liver disease, renal disease, lung disease, or any inflammation. I do not have a fever or an infection and truly believe that the procedure they use to remove the fluid, could likely cause me more problems that the actual PE. I am also one of those people that prefer not to take medications, unless absolutely necessary. People often die from the cure, not the disease; I think I will just wait this one out, as opposed to having a procedure that puts a tube into my chest and lung. Time will tell…….

So, it all boils down to weighing the pros and cons; is the risk worth the reward?  Is a little Pleural Effusion worth getting the upper hand on my leukemia and achieving PCRU? In my opinion, the answer is without a doubt; yes!

Friday, September 6, 2013

Leukemia vs Murphy

I do not know what it is, but I am telling you, “Murphy” is my conjoined twin. He has been with me since birth, and never seems to go away! I would love to share him, or at least give him a break.

 If there is going to be extra, unwarranted charges on a bill; they will be on mine. If the gal at the store is going to double ring an item; that will be on my receipt. If something is on sale; you guessed it, it will ring up full price. And the phone calls, ugh; why is it that after being on hold for eons, the person that finally says “How may I help you?” also says, “Oh, I must transfer you” and then “Click” I have been disconnected!

I suppose that Murphy is around to test my patience and my humor, but sometimes, I am just too tired to join in his games. Why is it that he had to show up and put a damper on my last PCR test? I am still so tickled that it was negative, but so bummed about the Pleural Effusion, that came along with it.

I have been off of Sprycel for about 2 ½ weeks; I suppose with a negative PCR that this should not worry me; too much. And I guess that worry is not really the best word for what I feel; I am actually anxious to get back on my meds (never thought I would say that!), as I am really hoping for another negative response.

So having had bronchitis and lingering PE, I have to delay resuming my medication, thus delaying my fight for another negative PCR. I have been battling chronic myelogenous leukemia for 31 months; there have been bumps along the way and my life has definitely been changed, but reaching a negative response has made the battle a bit easier to fight. I finally feel as though all of the side effects I suffer, on a daily basis are finally paying off.

 I suppose that I should just suck up the fact that Pleural Effusion is simply one more of those side effects and that hopefully, my oncologist will be able to dial in the proper dosage of Sprycel , to keep my negative response; negative, yet prevent the PE. If I can just get Murphy to take a break, maybe this will happen. 

Last night I popped a 70 mg, half of my “regular” dose, of Sprycel into my body. I took it with a shot of Mother’s Vinegar and a bit of apprehension. I did not notice a change in the PE; it is not any better and it is not any worse. I sent an email to my oncologist and told him what I did; guess I will have to wait and see what he response is; hopefully I won’t get scolded!

Thursday, September 5, 2013

What is Leukemia? This Video Explains it All!

For those of you who have not already seen this video, it truly is worth fourteen minutes of your time.
Prior  to being diagnosed with chronic myelogeous leukemia, I knew nothing at all, about leukemia. I was not even certain that leukemia was "cancer"; I remember sitting in the emergency room, having just been diagnosed, over the phone, with leukemia.

I kept begging the nurses to pull stuff off of the internet, so that I could read about it, until I could get my hands on my own computer. I was there for hours, waiting for the  hematological oncologist to show up. Eventually he did, and so did my husband, with my computer.

For those of you that did not know a lot about leukemia, or have friends or family that really do not understand it, this is really a great video.

Wednesday, September 4, 2013

FDA Announces New Black Box Warning!

Apparently there has been a change to the Black Box Warning for Floroquinolones. The FDA announced on August 15, 2013, that fluoroquinolone drugs such as Levaquin, Cipro and Avelox will be required to change packaging inserts to contain a warning for severe, permanent and disabling peripheral neuropathy. The FDA states that the damage may occur very soon into the administration of the drugs and the damage may be permanent.

If you are wondering what peripheral neuropathy is, this is the description from the FDA: Peripheral neuropathy is a nerve disorder occurring in the arms or legs. Symptoms include pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or the sense of body position. It can occur at any time during treatment with fluoroquinolones and can last for months to years after the drug is stopped, or even be permanent.

Permanent: I cannot even imagine the pain that I suffered during the first two years, after being floxed, lasting forever. I swear that I would have jumped in front of the bus, if I had not begun to see a slight decrease in pain, during the first six months. This pain relief was minuscule, yet gave me hope.

I am telling you that the pain was the absolute worst pain, I have ever experienced. It is not like a cut or a bruise, it is not like a broken bone or a migraine; it is like you are walking on burning glass. It is constant and never subsides; even the air hurts the affected parts of your body.

I was unable to touch my feet or toes; I could not wear socks or shoes and could bear absolutely no weight, on the front part of my feet: for years. My hips, knees and Achilles felt as though they would burst at any moment. This pain is indescribable. Not only did I have pain in my legs and feet, I was unable to open my eyes in the morning, because of the light, for hours, and even then I had to keep the house dim. I couldn't remember things, I was easily confused and literally just wanted to sit in a dark corner and cry. The skin on my body hurt to the touch and wearing anything other than really, really soft material, was excruciating. This is not something I would wish on anyone!

There was not a doctor, or pharmacist that had any advice on how to control the pain, or if it would ever go away. The only person that gave me any sort of advice on how to try and detoxify my body, and rebuild the damage was Dr. Leland Carroll; a chiropractor. I believe that it is with his help, my persistence and a round of chemotherapy, (due to my leukemia diagnosis) that I am much improved. It absolutely floors me, that once you have suffered the toxicity of these drugs, that there is absolutely no protocol on how to stop, or reverse the damage. No one can tell you that someday, you MAY get better.

I will bet you that the orthopedic surgeons that are repairing torn tendons and the Fibromyalgia doctors that are treating tons of patients with chronic, unexplained pain, are thanking these drugs; all the way to the bank. You can bet that they never even ask their patients if they have taken a floroquinolone. This is disturbing and unconscionable.

I am certain that many physicians are completely unaware of the Black Box warning placed on fluoroquinolones in 2008; and I am certain that most have never seen the outcome of those of us that have suffered these side effects. Probably the biggest reason for this, is simply the lack of correlation, to the pain and the antibiotic; not many figure out what has caused their pain, therefore, it goes unreported. 

Fortunately, the internet is bringing these issues to light, and hopefully our voices are being heard. We need to report these side effects to the FDA and the drug companies, and once made aware of the risks, we must refuse this class of antibiotics, unless there is no other choice. Trust me, you do not what to take the chance, that you will become the next victim.

I do not believe that any doctor or dentist would knowingly prescribe an antibiotic that is so dangerous; unless they were completely unaware of the consequences, or there was no other option. I also understand that all drugs come with their own list of precautions and warnings, risks and side effects. These must be carefully weighed; and you must decide if the result, outweighs the risk. Believe you, me; if I had had a choice of diarrhea or a rash, over being crippled and in chronic, extreme pain, I would chosen the diarrhea or rash; every time. Usually, there are alternative antibiotics, but you must ask.

I believe that it is the pharmacist's responsibility to inform a patient of the Black Box Warning, prior to filling the prescription; I know that this was not the case on the two prescriptions that I filled. What good is a Black Box Warning if no one knows about it? Education is key here, for physicians and pharmacists, not to mention the patient, We, as patients need to take these warnings seriously.

Thanks to the internet, the dangers of Cipro, Levaquinn and Avelox are finally getting the wide spread attention they deserve.There are petitions and lawsuits, and there was even a march on the capital lawn, in Washington, bringing awareness and looking for retribution for victims. Victims are tired of being victims and they are realizing that they really are not just one in a million, but one of many. 

Do not fall prey to the antibiotics Cipro, Levaquinn or Avelox; it is not worth the risk. If you have suffered peripheral neuropathy you may wish to contact the Floroquinolone Victims Advocacy Network. 
New class action suits are being prepared.

Tuesday, September 3, 2013

Resuming Sprycel; Excited, Yet Apprehensive

It has been exactly two weeks since I took my last dose of Sprycel. This Sprycel vacation resulted from a minor case of pleural effusion, complicated by a nasty case of bronchitis. Pleural effusion is a side effect of Sprycel, also known as Dasatinib, which is a TKI, also known as a tyrosine kinase inhibitor; this particular drug is used to control chronic myelogenous leukemia. 

I believe that my negative PCR results AND my pleural effusion are both directly correlated to the fact that I changed the way, in which I was ingesting Sprycel. By taking Sprycel with a shot of Mother’s Vinegar, diluted in water, I created a more acidic environment in my stomach and therefore the absorption of Sprycel was increased.

Now, since the bronchitis is finally gone and the pleural effusion seems to be minimal, my oncologist feels that it is safe to re-introduce Sprycel into my body. We are going to be lowering the dosage by one day. This means that instead of taking 140mg of Sprycel 6 days a week, I will take 140 mg, 5 days a week. This also means that I will have two days a week that I feel pretty darn good!

Now, on to my apprehension; my oncologist is a highly respected CML expert, one that is involved in the research of CML, so I suppose that I just have to trust him, right? One of my favorite things about him is that he really listens to me and values my opinion; he also takes what I have to say, regarding my own health, into consideration. This being said, I am a little apprehensive to start taking Sprycel again, with a “as long as the PE is “better” and “tolerable”, then you can start Sprycel again; when you are ready” answer! When I am ready? He wants ME to decide? Yikers, I am not sure that I am up to that high level of responsibility!

I am also a bit freaked out by the," You don't want to see a Pulmonologist unless you want a tube in your chest to drain the fluid, and I don't recommend it, " comment.

On one hand, I am totally ready and excited to start sucking down Sprycel again, in the hopes of another negative response; on the other hand, I enjoy breathing! And feeling good, and being my old, happy self, so; what to do, what to do?

I am at a crossroads; do I keep waiting to see if the PE improves daily, or do I start taking Sprycel again, and see if the condition worsens? Currently the only time that I notice it, is when I take a really deep breath, or when I dance. I was joking during the last dance competition, that I was a “One trick Dancer” as I could dance one song and then had to rest for two. But if that is what it takes to remain in PCRU, then I think that I am willing to give it a shot; hoping that after many negative PCR’s, I will be able to lower my dosage, and that I will no longer have PE issues.

I have to admit, with the negative PCR response, my motivation and excitement to resume my treatment is really foremost on my list of things to do; it is exciting to have reached the ultimate goal once, and even more exciting to anticipate a second, negative PCR. I certainly hope that I will not be disappointed! (However, it will be in the back of my mind that I had a two and a half week vacation.)

 I suppose I must remain positive in order to achieve a negative! I think that I will resume ingesting Sprycel again, on Thursday!

The Beginning of Hotel Ratings!

Since we travel so frequently, I have decided to start rating our hotel stays. I find it interesting that sometimes the least expensive hotels, have the best amenities. And these amenities are not the decor. They are the things that help make your stay more comfortable.

One of my greatest pet peeves is the lack of a hook on the back of a bathroom door. I hate the fact that there is no place to hang my clothing, prior to jumping into the tub, or shower. I know it is a small thing, but it really makes a big difference; so, I am going to start dancing my way through hotels, and give you a thumbs up, or a thumbs down!

I know that many hotels purchase their supplies online at places such as Peach Suite, and that is an extremely easy way to purchase hotel bar supplies, and to order your hotel supply online; but you should be certain to check the quality of these supplies before buying them in bulk. Atlanta hotel supply offer everything and anything that a hotel could possibly need.

So, stay tuned for further updates on our latest travels!

Monday, September 2, 2013

Black Box Warning: May Cause Permanent Nerve Damage

I have been harping on this for years! So glad that it is finally getting the attention it deserves! I truly believe that thanks to the internet, people are not only becoming more informed, they are also sharing their experiences, finding similarities and putting two and two together.

The over "abuse" and "over-use” of this class of antibiotics puts me into a rage; I cannot believe that they are so freely prescribed when in truth, Cipro was originally "designed" to combat Anthrax. It is a powerful antibiotic, that when used as prescribed; as a "Last Drug of Choice", can be lifesaving.

When over used and abused to treat UTI's, kidney and sinus infections, the medical field is inadvertently creating an entire population that will learn what it is like to live in severe, chronic pain; some of these people will be crippled for life, others will just require surgery to repair torn tendons and ligaments.

I certainly wonder how many people have been diagnosed with Rheumatoid Arthritis or Fibrolmyalgia or had an unwarranted Achilles tear that are actually suffering from the side effects of these antibiotics; without ever realizing it, I mean who in their right mind would ever think that an antibiotic could cripple you? When you think of a reaction to a drug, you think, stomach ache, diarrhea, rash, can't breathe, not: "I cannot walk."

People are often given these drugs prior to dental work, or after developing a fever, following surgery. 
Many of these people begin to experience extreme pain and have no idea why. Typically they go to a doctor who typically prescribes a cortisteriod, or cortisone, which inadvertently exasperates the damage done by the antibiotics. Of course, the doctor does not ask if the patient has possibly taken a floroquinolone; which would explain the extreme pain; and hopefully change his plan of attack.

Even orthopedic surgeons that repair all of these tears rarely ask whether or not a patient has taken this class of drug; they do not care about the "why" an injury happened. I often wonder how many top athletes injuries are caused by these drugs. Kidna' like Kobe Bryants; “I didn't do anything I haven't done thousands of times before" maybe he had recently taken a floroquinolone.

Of course, then these same people have more dental work and the cycle continues. These drugs have DESTROYED my mother's life and body. It wasn't until a few years ago that I actually put two and two together, and yes, she had seven, almost empty bottles of Levaquinn in her medicine cabinet. I was infuriated and stunned!

Anyway, it is with the birth of the internet and the grace of all who have shared, as well as have searched for "cures" that the damage that these drugs can cause, is now becoming more recognized. I implore each and every one of you to read the following information and to store it in your memory bank. The pain that these drugs can cause is excruciating, and may be permanent.

Posted Wednesday, August 28, 2013 at 11:03am EDT
Certain antibiotic drugs cause permanent nerve damage. Here is what you need to know about the risks and what you can due to help your body heal naturally.

Black Box Warning: May Cause Permanent Nerve Damage

A certain class of antibiotics have been issued a new black box warning because they cause serious nerve damage. Black box warnings are the most serious and often deadly side effects of drugs that are literally outlined in a black box on the package insert. Fluoroquinolones, such as CiproLevaquin, and Floxin were prescribed to over 23 million people in 2011 alone. They are commonly prescribed for respiratory and urinary tract infection. These are relatively simple conditions that have many natural and safe treatment alternatives. However, antibiotics are one of the most commonly prescribed drugs in America. Those hoping to find health from a pill are in for a very serious and very dangerous surprise. 

These drugs cause peripheral neuropathy within a few days of starting the medication. The nerve damage may last for months or it may be permanent even when the drug is stopped. They do not cause this nerve damage in every person who takes them; however, you are playing Russian Roulette every time you take most prescription drugs. You may be the one who is permanently affected. Is it worth the risk simply for a possibly quicker recovery from an infection?

Peripheral Neuropathy Explained

Peripheral nerves are nerves that run from your spinal cord to every muscle and organ in your body. They are the lines of communication between your brain and the rest of your body. Neuropathy is a general term referring to nerve damage; nerves that no longer work properly.

While peripheral neuropathy is commonly diagnosed in the arms and legs because those areas are easier visualized, it also occurs in the nerves that control your organs. Pain and numbness are common early signs of peripheral neuropathy in the arms or legs. It then progresses as muscle problems such as weakness and loss of muscle control.

Ever wonder how something as simple as an antibiotic can cause death? One of the many ways is their effect on the autonomic nervous system – nerves controlling the organs that keep you alive. Peripheral neuropathy nerve damage affects these nerves as well. This causes problems with digestion, heart problems, breathing problems, and kidney and liver dysfunction. Ultimately, this can lead to death due to organ failure.

Other Side Effects of These Antibiotics

This particular class of antibiotics also carries another black box warning issued by the FDA in 2008. That warning was for sudden rupture of tendons, the tissue that connects your muscles to your bones. As if this two side effects are not enough, antibiotic drugs, like Cipro, have pages and pages of additional side effects from allergic skin reactions to deadly anaphylactic shock. Antibiotics also cause deafness in infants, children, and adults alike. Cipro causes sensitivity to sunlight that makes it difficult to be in direct sunlight. Of course, this reduces your body’s production of Vitamin D, further weakening your immune system, which allowed the infection to develop in the first place!  We could go on and on about the various, dangerous effects of antibiotic drugs. However, I think that we have already covered enough ways that they can kill you. See for more.

Healthy Alternatives to Antibiotics

If you have a bacterial infection, what can you do to heal without the potentially deadly side effects of antibiotic drug treatment?

1. Wait it out.
While most infections are not pleasant, they usually pass with few problems and no permanent damage.
·         Side note: Your child’s pediatrician may have told you that certain infections may cause deafness in your infant child if not aggressively treated with antibiotics. The truth is that there is no research comparing the risks. There is, however, ample research documenting that aggressive antibiotic treatment does cause deafness in infants. The vast majority of cases of deafness associated with childhood illnesses are in those who were treated with high doses of antibiotics.

2. Get some sunshine.
Vitamin D is a strong immune system supporter. Adequate vitamin D levels are essential for a healthy immune system. Your body’s only natural source of vitamin D is sunshine. If you are in an environment where this is not possible, it is easy and inexpensive to supplement your diet with vitamin D3.

3. Eat more Antimicrobial foods.
Many foods are designed with the natural ability to kill off dangerous bacteria. These include Coconut products like coconut oil, coconut milk, and coconut butter; raw, unpasteurized honey; and vegetables such as garlic, onions, and cabbage.

4. Eat fermented foods.
Raw, fermented foods, such as raw sauerkraut, raw pickles, and cultured vegetables contain probiotics that strengthen your body’s normal immune response.

5. Consume antimicrobial herbs and spices.
Many herbs and spices have antibacterial properties. A few antibacterial heroes in this category are turmeric, ginger, and chili peppers.

6. Exercise in short, quick bursts.
While an infection may cause you to feel tired and rundown, exercise – especially in short bursts – actually increases your energy levels and stimulates your immune system to speed natural healing.

7. See your chiropractor.
Stress on your nerves weakens your immune response drastically and increases your risk of most infections from UTIs to the flu. Receiving chiropractic adjustments regularly – especially when you are sick – removes this nerve stress and dramatically increases your rate of healing.
The best thing about these natural alternatives to antibiotics is that none of them will kill you and they will actually make you healthier!  Including all of these as part of a wellness lifestyle creates a strong, disease-proof body that has no need for antibiotic drugs.
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Bricks for the Brave!!