Cancerversary Time

Today is my "cancerversary". It has been three years since my diagnosis. It's kind of ironic that CML awareness day is the same day I was diagnosed. I have to admit in this situation I'm in right now, it feels like the glass is half full. On the one hand I've survived three years. On the other hand, quality of life is not that great.

Original Art by Elizabeth Munroz

So here's an update. My fatigue was debilitating enough to make me beg my doctor to take me off my Sprycel. Since my diagnosis I began taking 100mg daily. I got PCR-U within 4 months (no sign of disease) and it has continued to remain in remission.

But, I have lost a quarter of my body weight due to ongoing nausea. My hair started to turn white (I now dye it). My skin is so dry it's a constant battle to keep the sores from getting infected. I wake up with headaches, and I have throbbing in my head and neck most of the time. I try to just ignore it, but sometimes it gets very distracting. Okay, I told myself, I gotta live with this. It's the only way. 

But 18 months ago, I began to have fatigue and it increased exponentially so that in the last month or so, I had to lie down every few minutes because I was so exhausted. You can't even imagine what it's been like to have to go somewhere in the car. Upon arriving anywhere, I would have to literally back up and lean against a wall, just to have it hold me up.

When I lost my cat, I didn't have the energy/strength to call it to come home, or to walk the neighborhood to search for it. That was very stressful. Thankfully, my cat came home nine days later. More stress because he needed vet care. It was very difficult for me to physically handle. My cats mean a great deal to me.

My oncologist was either inexperienced with Sprycel or just plain ignorant. When I told her about this side effect she emphatically said it wasn't related at all. But, I spoke to a pharmacist associated with Bristol Myers Squibb, the company that manufactures Sprycel. He told me that at least 25 percent of all patients taking Sprycel, have fatigue as a side effect. And that is considered significant, therefore a major side effect. I really lost my respect for my oncologist and immediately found another.

I'm aware there are patients who go without treatment after being in remission, so I discussed it with this new oncologist. After lowering my dosage to 80 mg. for a couple months, she agreed I can take a little vacation from Sprycel and see what happens to the fatigue. In the meantime, I will have regular testing close together.

I have been off a little over a week. Guess what, I drove myself 90 miles to visit family, attended a performance, stayed overnight, went out for breakfast and drove 90 miles back home the next day. Two days later, I drove 60 miles and spent the day at a hospital waiting for a loved one to come out of surgery. You know what that can be like.

Just a few weeks ago I wouldn't have been able to do that at all. I am aware that dying is a possibility if my CML cannot be controlled. But, living with a quality of life that feels like death while taking Sprycel... well... It's hard for me to accept that the rest of my life should have to drag out many years in that condition. Would it be worth it?

Coming Out of the Closet

Saw my oncologist yesterday for a regular follow up appt. Everything is "normal" (she says) but I dont feel well. She thinks it has nothing to do with CML or Sprycel. During the appointment I asked her a question to which the answer scared me.

There's a well known man, Actor, Ralph Peduto, in my area who died 12 days after diagnosis. TWELVE DAYS! 

I asked my doctor how that could be. Didn't he have any symptoms? Was he seeing a doctor who just missed the signs? Or, was treating him for something else? How does one's bone marrow go so crazy in just a few days that one can suddenly just out and out die?

She was sort of nonchalant about it. She said, "Oh, yes... that can happen. A patient can go along fine and then, for reasons we don't know, things can get quickly out of hand like that."

Until then I felt like my diagnosis was unreal, and no big deal. (denial?) Now, I'm worried. It's like having a bad guy hiding in your closet that you know is there, but who promises to never come out, but you can't trust him and can't do anything about him.

Ralph Peduto's Filmography

Gratitude for Two Years of Living

It's been two years since I was told I have leukemia... specifically the Chronic Myelogenous type. If I had been diagnosed with CML before Gleevec came into existence (about twelve years ago) my average life expectancy while living with and being treated by the methods used for CML would have been about six years.

It's been so effective that people are living much longer than six years. And, in fact, dying of other conditions. Because CML usually affects older people, one could die of heart disease or stroke, for example. But, I wonder... what about those who are diagnosed younger? Do they get to go on another forty or fifty years without the leukemia taking over? Will the medication continue to work for that amount of time? I guess that remains to be seen.

 To clarify matters, I am not taking Gleevec for my CML. I am taking Sprycel, otherwise known as Dasatinib, which is sort of like the grandchild of Gleevec. In other words, more advanced.

I'm a little bit confused about when Dasatinib was approved for CML as the first drug to be issued to a newly diagnosed CML patient. I find evidence that it was approved only under certain circumstances, such as for a patient who has already tried Gleevec and another related drug called Tasigna.

Within a couple months of starting Sprycel, my leukemia was in remission and so far has stayed that way. Now, that might make it seem like I no longer have leukemia, but that is not exactly the case. It's sort of like saying that a person with a diagnosis of diabetes who has great control of it is in remission, but not cured. Do you see what I mean? So, today I contemplate the fact that I have been given the gift of life for this last two years. Thank you to the scientists who did diligent research in order to create Sprycel. And a great THANK YOU to all those who funded that research!

I've included these pictures of my cat, Chica who, ironically, died of Feline Leukemia last Tuesday. I wonder if she had been given Sprycel, would she have survived?

What You Don't Know Can Kill You

Since being diagnosed with CML my blood lipids climbed. The reason why? Because I could no longer take any statin medication to keep it healthy.

Statins are contraindicated with Dasatinib (Sprycel) which is the chemo drug I am taking. It is because of the way they are absorbed in the body through the liver. To keep the explanation simple, just imagine a turnstile and two people attempting to go through it at once. Statins are the bully to pushes Dasatinib out of the way to pass through the turnstile. So your body never absorbs the dosage you are supposed to be taking to treat the leukemia.

That becomes a bit of a quandary.

Keeping things in the dark is not healthy!

When I began treatment, all of my standard medications that were also bullys got taken away. Without statins, my lipid counts shot upwards into unsafe levels. Considering that my tummy didn't like the chemo and I immediately lost a lot of weight due to ongoing nausea, one would think my cholesterol would not have climbed. I stuck to a heart healthy diet with lots of fruits and vegetables and no junk food, it didn't help. (I couldn't have eaten junk food even if I wanted to.) Though, admittedly, because of ongoing nausea, some nutrients were not absorbed. Still, I was shocked with what happened to my lipids.

I was very frustrated, unhappy and annoyed. Especially annoyed. With continued high lipids to challenge my heart health, it began to look like I would have more medical problems to deal with! Believe me, I've got enough diagnoses to educate a med school student. Was there nothing more to be done?

I researched information on Dasatinib. I contacted the maker, Bristol-Myers Squibb to see if they could recommend something. No, they said to talk to my doctor. My primary care doctor was adamant that all I could do was to keep to a healthy diet. My oncologist could not give me any suggestions.

Why would a drug manufacturer not have some kind of suggestion? I understand why my primary care doctor could only advocate diet and fiber. Prescribing chemo drugs was not in her realm. And why hadn't my oncologist investigated further to see what else could be done? It all seemed quite irresponsible to me. I wondered how many other patients go through this and feel helpless. How many just go along with the situation and accept things as they are? No, don't tell me. I don't really want to know. I really wish that there could be classes one could take to become a more savvy medical consumer.

I've learned over the decades while dealing with my myriad of medical problems that if I don't keep a watchful eye on things, mistakes can happen. I wanted to solve this dilemma of the lack of a safe drug to take. The more I researched the more I learned. Pravastatin is okay to take for a person who is taking Dasatinib! Pravastatin is NOT A Bully!

I presented my doctors with the evidence and now I have taken Pravastatin for two months. I am so relieved and happy. Look at the results:

Chart

Component	Standard Range	1/16/2012	2/2/2012	7/9/2012	3/1/2013
Total cholesterol		289 H	274 H	249 H	192
Triglyceride		276 H	308 H	221 H	125
HDL cholesterol		47	44	35 L	57
LDL Calculated		187 H	168 H	170 H	110
VLDL (Calculated)	5.0-40.0 mg/dL	55 H	62 H	44 H	25
Cholesterol to HDL Ratio		6.1 H	6.2 H	7.1 H	3.4

Losing Weight is Good?

Skinny me, a long time ago

Today I learned that I have lost twenty four pounds since I started on Chemo.

Of course, the good thing is that I lost weight.

The not so good thing is what caused me to lose weight.

Not  being able to take my stomach medicine because it interferes with the absorbtion of  Dasatinib ( Sprycel ) by sixty percent made it necessary to go cold turkey with my tummy meds. I'm sure I have mentioned this before. Yes?

So the results were instantaneous. Tummy problems full force. It's taken these many months to get to the point where it's not so terrible to live with, though I often question quality of life. Do I want to be sick the rest of my life by not treating tummy problems? Or do I want to be sick with the long term results of untreated leukemia

I haven't even mentioned the meds I cant use anymore for pain. Have I? We wont go there right now. Tummy is the biggest problem.

Needless to say, it has gotten down to experimenting with various foods to learn what my tummy can handle and what is no longer my friend. Right now I can eat apple, banana, asparagus, oatmeal, white meat turkey and occasionally, a little bit of red meat. I'm sorry my vegetarian friends. I cannot eat soy products either. My favorite food, a good salad is a touch and go situation. One day I can have a little, another day it will sit in my tummy heavy and nauseating.

This really bothers me. Losing twenty four pounds without an adequately balanced diet is concerning. I've got to look at the contraindications on the Dasatinib labeling sheet again. I hadn't given it much thought in the beginning, but there are several nutritional supplements that are not to be taken.

Well.... Who knows? At the rate I am going, perhaps I will look like the skinny wench in the picture again!

I Can Do Anything Better Than You Can!

I'm happy I came across this:

"Dasatinib, administered once daily, as compared with imatinib, administered once daily, induced significantly higher and faster rates of complete cytogenetic response and major molecular response.

Since achieving complete cytogenetic response within 12 months has been associated with better long-term, progression-free survival, dasatinib may improve the long-term outcomes among patients with newly diagnosed chronic-phase CML. (ClinicalTrials.gov number, NCT00481247)"

Why am I happy?

Dasatinib is the chemo drug I am taking for my leukemia. When they mention "complete cytogenetic response and major molecular response" it means that the way out of line bone marrow and blood is getting back to normal. It doesn't mean a cure, but it means it is controlled better. That's the easiest way to explain it at the moment.

The other one mentioned above, Imatinib is an older chemo drug that is sort of the great grandpa of the one I am taking. It used to be the best one around. But according to the above, it looks like my chemo drug is so much better!

Dasatinib is also known as Sprycel.

Imatinib is also known as Gleevec

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Note: The art is my own altered photo. It is called Chemo Fire

The Price of Guilt

I went to the oncologist on Wednesday. The results of the bone marrow biopsy verified everything that was already known. I have CML. Dr. Wong has ordered a prescription of Dasatinib. If there are no adverse side effects I will possibly take this chemo type drug for the rest of my life. I suspect some newer drug will come down the pipeline. Who knows? Perhaps a cure. Wouldn't that be awesome?

I recieved a phone call the next day and was told that my prescription had been approved by my Medicare and Medi-Cal insurances, full coverage, no copay. That's wonderful! But, I can't help but feel a bit guilty. How many people who are not covered by my type of insurance can afford this drug? I've looked around the internet to discover what the price would normally be. The answer is anywhere from $3,000 to $4,000 a month for the dosage I will be taking. That's $36,000 a year. I'm 66 years old. If I live another ten years that's three hundred sixty thousand dollars, providing the price doesn't go up. If I live as long as my mother that would be seven hundred fifty six thousand. That's also where my "guilt" chokes me. That's a lot of money. I am worth it, I believe. But, this is money out of taxpayers pockets, and this bothers me.

Okay, so I'll just have to get over it, stop thinking about it. That's it! I've got more realistic priorities to consider

Dasatinib is the generic name for Sprycel.

SPRYCEL may cause serious side effects, including:

- low Blood Cell Counts: SPRYCEL may cause
- low red blood cell counts (anemia),
- low white blood cell counts (neutropenia),
- low platelet counts (thrombocytopenia).

Bleeding: SPRYCEL® (dasatinib) may cause severe bleeding that can lead to death.

Call your healthcare provider right away if you have:
- unusual bleeding or bruising of your skin
- bright red or dark, tar-like stools
- a decrease in your level of consciousness, headache, or change in speech

Your body may hold too much fluid. In severe cases, fluid may build up in the lining of your lungs, the sac around your heart, or your stomach cavity.

Call your healthcare provider right away if you get any of these symptoms during treatment with SPRYCEL:
- swelling all over your body
- weight gain
- shortness of breath and cough

Heart problems: SPRYCEL may cause an abnormal heart rate, heart problems, or a heart attack that can lead to death.

Your healthcare provider will monitor the potassium and magnesium levels in your blood, and your heart function.

To look on the bright side, I hope I will not have these problems. There are lesser ones to deal with much more tolerable.

Now that my prescription has been approved, I cannot take it to my local pharmacy. I really like that place. It is very small and I get very good service. I feel like the pharmacist is a friend. So, I shall recieve my Dasatinib (Sprycel) shipped to me every month from CVS. I hope it will be personable service. If not, well, that's okay. I'm expecting my delivery sometime soon, as soon as tomorrow, I am told.

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Photo is of myself and Katsumi taken 2004 near Big Sur