Best Friends Forever

As I mentioned on facebook, my best friend for the rest of my life has arrived. (earlier than expected) But, I'm not taking her on my trip to Yosemite! I'll wait until I get home so we can get acquainted. Her name is Chemo Dasatinib. Also, known as Sprycel.

It wasn't too long after this that I realized, I didn't need any poisonous girlfriend, so I gave her a sex change and a new name. Obi-Wan Kenobi because he's my only hope. And he's wise and will teach me to live and take care of myself.

(Did you know there is a Wookiepedia? Check it out if you are a Star Wars fan. Is there anybody who doesn't like Star Wars. I wonder.)

The doorbell rang. When I got to the door no one was there except a big box, bigger than I expected and surprisingly light weight considering the power the contents will have on my life. But, of course, how much would I have expected 30 pills to weigh?

Arrows pointing upward on all four sides

UP
RUSH!
PERISHABLE
INSULATED
UP

THE MELTING OF THE COLD PACK CAN BE EXPECTED DURING TRANSIT OF YOUR ORDER

PRODUCT CONTAINS NO CHLORO FLUORO CARBONS

ProPak
Corrugated Recycles

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~
Photo is of myself and Katsumi taken 2004 near Big Sur

What is Chronic Myelogenous Leukemia?

Chronic myeloid leukemia (CML), also known as chronic myelogenous leukemia, is a type of cancer that starts in the blood-forming cells of the bone marrow and invades the blood.

 

Both names mean the same thing, but my doctor is calling it Chronic Myelogenous Leukemia, so I'm going to go along with him on this.

It is usually associated with a chromosome abnormality called the Philadelphia chromosome. In CML, leukemia cells tend to build up in the body over time, but in many cases people don't have any symptoms for at least a few years. 

I can look back on old blood tests from two years ago that indicated something was going haywire with my blood cells. It was thought I had infections at the time. I don't blame my doctors It is a common diagnosis for those types of blood results. At that time I did not have the increase in myelocytes that would have made the diagnosis more obvious. (more on myelocytes later) NOTE: Get copies of all your test results! You are legally entitled to them.

In time, the cells can also invade other parts of the body, including the spleen. CML can also change into a fast-growing acute leukemia that invades almost any organ in the body.

I do not have an enlarged spleen. That has been proven by CT scans. My CML has been diagnosed early, so it is not expected that I will have any aggressiveness coming up any time soon. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Photo is of myself in 2004, taken in Monterey, California. I remember the wind was blowing off from the ocean. It was a cold sunny day.

~~~~~~~~~~~~~~~~~~~~~~~~~~

This is part of an article from Scientific News as published in ACOR. I cannot find the original reference.

CBC Blood Test Results : It's all Good!

Component	Your Value	Standard Range	Units	Flag
White Blood Cell Count	25.7	4.0 - 11.0	K/uL	HH
Red Blood Cell Count	4.76	3.90 - 5.40	M/uL
Hemoglobin	14.6	12.0 - 15.5	g/dL
Hematocrit	47.0	35.0 - 47.0	%
MCV	99	80 - 100	fL
MCH	30.7	27.0 - 33.0	pg
MCHC	31.1	31.0 - 36.0	g/dL
RDW	14.3	<16.4 -	%
Platelet Count	399	150 - 400	K/uL
Neutrophil	79	49 - 64	%	H
Neutrophil Bands	3	0.0 - 10.0	%
Lymphocyte	12	26 - 46	%	L
Monocyte	4	0 - 12	%
Eosinophil	0	0 - 5	%
Basophil	0	0 - 2	%
Myelocyte	2	0 -	%	H
Abs. Neutrophil	20.3	2.0 - 8.0	K/uL	H
Abs. Band	0.8	0 -	K/uL	H
Abs. Lymphocyte	3.1	1.0 - 5.1	K/uL
Abs. Monocyte	1.0	0.0 - 0.95	K/uL	H
Abs. Eosinophil	0.0	0.0 - 0.6	K/uL
Abs. Basophil	0.0	0.0 - 0.2	K/uL
Abs. Myelocyte	0.5	0 -	K/uL	H

Clinical Data Gives Me a Sprycel Rash?

66 year old female with newly diagnosed chronic myelogenous leukemia and a history of night sweats and chondrosarcoma (diagnosed in 1968) status post right hemipelvectomy.

Outside flow cytometry report reveals

neutrophilia with left shifted granulocytosis
and increased basophils and eosinophils
and no increased CD-4 positive blasts;
JAK2 kinase mutation is negative;
BCR/ABL is positive with breakpoint at B2A2

(collected 9/8/11).

Bone marrow submitted for evaluation......

Note: I wish I understood what all this means

I hope this Sprycel rash goes away!

Old Feelings Never Die

While attending my autobiography- memoirs writing class, I became a bit emotional. We sit in groups of four and read to each other from our latest work. This week I wrote about when I had Chondrosarcoma and long term hospitalization related to my internal hemipelvectomy. 

This is the basics of the story: I had been flat on my back for many weeks, when my younger sister came to visit. She massaged me and I began to feel considerably better. She helped me to sit up, something the nurses didn't do and the doctor had not ordered. She helped me to sit at the edge of the bed, and with progression, she helped me to stand up by the bed. Then, she helped me to walk, first four steps, then a few more, before I asked the doctor for permission to get out of bed. He gently reminded me that he had told me I would never walk again. I proceeded to get out of bed and show him that I could. The man had tears in his eyes as I walked toward him. 

It was that point in my reading to my classmates that I broke down. I held the paper over my face while I regained my composure and completed my story. 

We continued with the critiquing and questions. This being a very unusual foursome, it was pretty intense. The woman who sat to my left is permanently in an electric wheel chair. She has Multiple Sclerosis and cannot walk at all. In fact she has to be lifted from her bed with a hoist in order to be placed into her wheel chair. I couldn't look at her, for fear of seeing tears or sympathy, or even maybe impatience toward me. I thought I could feel intense emotion from her. I just had to breathe through her critique of my writing style. The lack of clarity for time period.

The young man sitting to my right is an avid skateboarder. Though, as far as I know, he has no medical conditions, he wrote about considerable violence and injury he has experienced because of his passion for skateboarding. Mostly he was confused and continued to ask deeper and deeper questions about my experience. It was clear I had left out a lot that I could add to my revision. It was challenging to answer his questions as my nose ran. Dammit!

The young man across from me was diagnosed with Leukemia seven years ago. Though in remission he continues to take the same chemo type drug I may soon be taking.  He knows what it is like to be isolated in a hospital bed. We've spoken about our experiences before this shared reading. He made it clear he understood. He never questioned or critiqued, but explained a few things to the others about having cancer, things I just didn't know how to say. 

Having cancer changes your viewpoint of the world and makes you wise in ways you never thought possible, and he is a good example of this.

It is odd how the body remembers the emotions that arose for me reading about something that happened over forty years ago.

Leukemia Vaccine Possible!

They are working on it! I would be happy to try a Leukemia vaccine instead of taking chemo for the rest of my life, which is the only treatment option available to me at that time.




They are working on another kind of Leukemia, too, believed to have a VIRUS relationship.




CLL is chronic lymphoid leukemia is the most common type of leukemia.

Feline Leukemia vs. Human

I received an explanation about one of my questions of the other day about why they can vaccinate a cat against leukemia and not a person:


Feline leukemia is not the same for cats as for humans.


Feline leukemia virus (FeLV), a retrovirus, so named because of the way it behaves within infected cells. All retroviruses, including feline immunodeficiency virus (FIV) and human immunodeficiency virus (HIV), produce an enzyme, reverse transcriptase, which permits them to insert copies of their own genetic material into that of the cells they have infected.


 Although related, FeLV and FIV differ in many ways, including their shape: FeLV is more circular while FIV is elongated. The two viruses are also quite different genetically, and their protein consituents are dissimlar in size and composition. Although many of the diseases caused by FeLV and FIV are similar, the specific ways in which they are caused differs.


http://www.vet.cornell.edu/fhc/brochures/felv.html

CML References

I'm posting this here to save and check on later. You probably wont find this of any interest unless you are dealing with Leukemia in some way. So, I hope you will enjoy the photo I took for it's own sake.

CML References

1. Sawyers CL. Chronic myeloid leukemia. N Engl J Med. Apr 29 1999;340(17):1330-40. [Medline].
2. Druker BJ, Sawyers CL, Kantarjian H, et al. Activity of a specific inhibitor of the BCR-ABL tyrosine kinase in the blast crisis of chronic myeloid leukemia and acute lymphoblastic leukemia with the Philadelphia chromosome. N Engl J Med. Apr 5 2001;344(14):1038-42. [Medline]. [Full Text].
3. Kantarjian H, Sawyers C, Hochhaus A, et al, for the International STI571 CML Study Group. Hematologic and cytogenetic responses to imatinib mesylate in chronic myelogenous leukemia. N Engl J Med. Feb 28 2002;346(9):645-52. [Medline].[Full Text].
4. Merx K, Muller MC, Kreil S, et al. Early reduction of BCR-ABL mRNA transcript levels predicts cytogenetic response in chronic phase CML patients treated with imatinib after failure of interferon alpha. Leukemia. Sep 2002;16(9):1579-83.[Medline]. [Full Text].
5. Talpaz M, Silver RT, Druker BJ, et al. Imatinib induces durable hematologic and cytogenetic responses in patients with accelerated phase chronic myeloid leukemia: results of a phase 2 study. Blood. Mar 15 2002;99(6):1928-37. [Medline].[Full Text].
6. Kantarjian HM, Cortes JE, O'Brien S, et al. Imatinib mesylate therapy in newly diagnosed patients with Philadelphia chromosome-positive chronic myelogenous leukemia: high incidence of early complete and major cytogenetic responses.Blood. Jan 1 2003;101(1):97-100. [Medline]. [Full Text].
7. Kantarjian HM, Talpaz M. Chronic myelogenous leukemia. Hematol Oncol Clin N Am. Jun 2004;18(3):XV-XVI.
8. Shah NP, Tran C, Lee FY, et al. Overriding imatinib resistance with a novel ABL kinase inhibitor. Science. Jul 16 2004;305(5682):399-401. [Medline].
9. Volpe G, Panuzzo C, Ulisciani S, Cilloni D. Imatinib resistance in CML. Cancer Lett. Feb 8 2009;274(1):1-9. [Medline].
10. Faderl S, Talpaz M, Estrov Z, O'Brien S, Kurzrock R, Kantarjian HM. The biology of chronic myeloid leukemia. N Engl J Med. Jul 15 1999;341(3):164-72. [Medline].
11. Gambacorti-Passerini C, Antolini L, Mahon FX, Guilhot F, Deininger M al et. Multicenter independent assessment of outcomes in chronic myeloid leukemia patients treated with imatinib. J Natl Cancer Inst. Apr 6 2011;103(7):553-61.[Medline].
12. Druker BJ, Talpaz M, Resta DJ, et al. Efficacy and safety of a specific inhibitor of the BCR-ABL tyrosine kinase in chronic myeloid leukemia. N Engl J Med. Apr 5 2001;344(14):1031-7. [Medline]. [Full Text].
13. Goldman JM, Druker BJ. Chronic myeloid leukemia: current treatment options. Blood. Oct 1 2001;98(7):2039-42. [Medline].[Full Text].
14. Santos FP, Alvarado Y, Kantarjian H, Verma D, O'Brien S, Mattiuzzi G, et al. Long-term prognostic impact of the use of erythropoietic-stimulating agents in patients with chronic myeloid leukemia in chronic phase treated with imatinib. Cancer. Mar 1 2011;117(5):982-91. [Medline].
15. Sawyers CL, Hochhaus A, Feldman E, et al. Imatinib induces hematologic and cytogenetic responses in patients with chronic myelogenous leukemia in myeloid blast crisis: results of a phase II study. Blood. May 15 2002;99(10):3530-9.[Medline].
16. Tang M, Gonen M, Quintas-Cardama A, et al. Dynamics of chronic myeloid leukemia response to long-term targeted therapy reveal treatment effects on leukemic stem cells. Blood. Aug 11 2011;118(6):1622-31. [Medline].
17. Ibrahim AR, Eliasson L, Apperley JF, Milojkovic D, Bua M, Szydlo R, et al. Poor adherence is the main reason for loss of CCyR and imatinib failure for chronic myeloid leukemia patients on long-term therapy. Blood. Apr 7 2011;117(14):3733-6.[Medline].
18. Hochhaus A, Kreil S, Corbin AS, La Rosée P, Müller MC, Lahaye T, et al. Molecular and chromosomal mechanisms of resistance to imatinib (STI571) therapy. Leukemia. Nov 2002;16(11):2190-6. [Medline].
19. FDA Approval for Dasatinib. National Cancer Institute. Available at http://www.cancer.gov/cancertopics/druginfo/fda-dasatinib. Accessed August 24, 2011.
20. FDA Approval for Nilotinib. National Cancer Institute. Available at http://www.cancer.gov/cancertopics/druginfo/fda-nilotinib. Accessed August 24, 2011.
21. [Best Evidence] Cortes JE, Jones D, O'Brien S, Jabbour E, Ravandi F, Koller C, et al. Results of dasatinib therapy in patients with early chronic-phase chronic myeloid leukemia. J Clin Oncol. Jan 20 2010;28(3):398-404. [Medline]. [Full Text].
22. Kantarjian H, Shah NP, Hochhaus A, Cortes J, Shah S, Ayala M, et al. Dasatinib versus imatinib in newly diagnosed chronic-phase chronic myeloid leukemia. N Engl J Med. Jun 17 2010;362(24):2260-70. [Medline].
23. Saglio G, Kim DW, Issaragrisil S, le Coutre P, Etienne G, Lobo C, et al. Nilotinib versus imatinib for newly diagnosed chronic myeloid leukemia. N Engl J Med. Jun 17 2010;362(24):2251-9. [Medline].
24. Hughes TP, Hochhaus A, Branford S, Müller MC, Kaeda JS, Foroni L, et al. Long-term prognostic significance of early molecular response to imatinib in newly diagnosed chronic myeloid leukemia: an analysis from the International Randomized Study of Interferon and STI571 (IRIS). Blood. Nov 11 2010;116(19):3758-65. [Medline].
25. FDA. Sprycel (dasatinib): Drug Safety Communication – Risk of Pulmonary Arterial Hypertension. US Food and Drug Administration. Available athttp://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm275176.htm. Accessed October 11, 2011.
26. Sawyers CL. Even better kinase inhibitors for chronic myeloid leukemia. N Engl J Med. Jun 17 2010;362(24):2314-5.[Medline].
27. Jabbour E, Kantarjian H, O'Brien S, Shan J, Garcia-Manero G, Wierda W, et al. Predictive factors for outcome and response in patients treated with second generation tyrosine kinase inhibitors for chronic myeloid leukemia in chronic phase post imatinib failure. Blood. Oct 28 2010;[Medline].
28. Moreb J, Johnson T, Kubilis P, Myers L, Oblon D, Miller A, et al. Improved survival of patients with chronic myelogenous leukemia undergoing allogeneic bone marrow transplantation. Am J Hematol. Dec 1995;50(4):304-6. [Medline].
29. McGlave PB, Beatty P, Ash R, Hows JM. Therapy for chronic myelogenous leukemia with unrelated donor bone marrow transplantation: results in 102 cases. Blood. Apr 15 1990;75(8):1728-32. [Medline].
30. Deininger M, Schleuning M, Greinix H, Sayer HG, Fischer T, Martinez J, et al. The effect of prior exposure to imatinib on transplant-related mortality. Haematologica. Apr 2006;91(4):452-9. [Medline].
31. Lima L, Bernal-Mizrachi L, Saxe D, Mann KP, Tighiouart M, Arellano M, et al. Peripheral blood monitoring of chronic myeloid leukemia during treatment with imatinib, second-line agents, and beyond. Cancer. Mar 15 2011;117(6):1245-52.[Medline].