34 replies to this topic

[Antilogical]

When my onc changed my Gleevec dosage from 400 to 300MG, he told me that while I was waiting for the new prescription, to take a whole tablet and a half tablet on alternate days.  Much easier.

[Pin]

It is my dream to be able to reduce my dosage. To all you that can do it, I hope to be one of you some day.

[Buzzm1]

When my onc changed my Gleevec dosage from 400 to 300MG, he told me that while I was waiting for the new prescription, to take a whole tablet and a half tablet on alternate days.  Much easier.

Relatively speaking, price-wise, 400mg Gleevec tablets are less expensive than four 100mg tablets

 

I recently (Dec.) decreased my Gleevec dosage from 400mg to 300mg (taken as three 100mg pills)

When, and if, I (hoping to) further reduce my dosage from 300mg to 200mg, breaking a 400mg tablet in half is definitely an option to consider.

 

As we know, Gleevec is going generic in the U.S. on Feb.1, 2016, at which time it should be considerably less expensive.

In the meantime, I've been forewarned that there is no guarantee that Kaiser, my HMO, which has its own in-house pharmacies, will carry the generic, and if they do, when it will become available, and at what price.

 

I'm a Lockheed-Martin (LM) retiree; in January, 2015, LM announced a June 1 cancellation of their excellent retiree medical coverage plans;  Because of that, in January, 2016, I'll be subject to the Medicare donut-hole for the very first time ... a sizable out-of-pocket expense.

 

My plan, subject to circumstances, is to do everything I feasibly can to avoid the donut-hole.

[Gail's]

Hi Buzzm1. I too am covered by Kaiser and I work for them. It never occurred to me that they might drop gleevec because my experience has been that they lean toward generics if still effective. They actively pursue cost cutting as long as patients are benefitted. Even if they did take it off their formulary, doctors have the authority to authorize it's use by saying its in the best interest of the patient. I currently take an off formulary med and pay the same copayment as a regular med. hope that eases your mind.

[chriskuo]

Buzz,

 

Did Lockheed Martin completely cancel its retiree coverage or did it make major cuts?  My former employer cancelled the drug coverage for retirees over 65 that was similar to that for employees.  In its place, that put in a plan that was integrated with Medicare Part D for drugs.  The company pays much less and Medicare and the drug companies pay more, but the company pays for much of the donut hole. The retiree pays more for drugs once they are in the catastrophic phase, because the Part D cap of 5% copay can be substantial for TKIs.

 

So my drug coverage is not as good as it used to be, but it is still much better than a standard Medicare Part D plan.

 

At least, the donut is being phased out over the next 5 years.

[Buzzm1]

Good news: After 4 and 1/2 months on a reduced Gleevec 300mg dosage, I have maintained PCRU.

 

New Concerns: some of my bloodwork results are heading south (Trey)

Component Standard Range Your Value

Creatinine <=1.34 mg/dL last 4 tests ... 1.11, 1.26, 1.26, 1.32

Glomerular filtration rate, nonAfrican American >=60 mL/min, ,,,  last 4 tests >60, 56, 56, 53

Neutrophils %, automated count 41 - 79 % last 3 tests 64, 58, 68

Lymphocytes %, automated count 13 - 44 %...  23

Monos %, auto 5 - 14 % ... 6

Eosinophils %, automated count 0 - 6 % ... 2

Basophils %, automated count 0 - 2 % ... 1

Neutrophils auto count 2.1 - 7.4 K/uL last 3 tests 5.4, 5.4, 7.4

WBC COUNT 3.5 - 12.5 K/uL last 3 tests 8.3, 9.4, 10.9

Red blood cells count 4.10 - 5.70 M/uL ... 4.47

Hgb 13.0 - 17.0 g/dL ... 15.0

Hematocrit 39.0 - 51.0 % ... 44.0

MCV 80 - 100 fL ... 98

RDW, RBC 12.0 - 16.5 % ... 13.3

Platelets count 140 - 400 K/uL last 3 tests 320, 296, 232

 

Imatinib treatment duration is related to decreased estimated glomerular filtration rate in chronic myeloid leukemia patients.

http://www.ncbi.nlm.nih.gov/pubmed/21310760

[Trey]

Overall good news. 

 

You will want to continue to monitor kidney function since it is on the edge of being moderately impaired (GFR and creatinine).  Have you been evaluated by a doc for this?

 

Not sure why your WBC has crept up to high-normal.  Not a big deal but keep an eye out for non-CML issues related to WBC.

 

Maybe continued 300mg Gleevec will help stabilize or improve kidney issues.

[Buzzm1]

Overall good news. 

 

You will want to continue to monitor kidney function since it is on the edge of being moderately impaired (GFR and creatinine).  Have you been evaluated by a doc for this?

 

Not sure why your WBC has crept up to high-normal.  Not a big deal but keep an eye out for non-CML issues related to WBC.

 

Maybe continued 300mg Gleevec will help stabilize or improve kidney issues.

Thanks Trey.

 

When I first saw the rise in WBC two weeks ago, after the CBC, I immediately thought I was in the process of losing PCRU; my Onc blew off my concern, and said my bloodwork looked good.

Then, as you suggested, I too, on second thought, considered that it may not be related to the CML.

 

Regarding kidney function, in late March, I had a routine upper abdominal aneurysm ultrasound scan (Medicare preventative), and I asked the radiology technician to take a look at my spleen while he was at it, as I frequently feel pressure on the left side of my stomach.   After scanning around on my left side, he said to ask my primary physician to order a kidney ultrasound/urine test. I asked him what he saw and he said he couldn't discuss it with me, and repeated "ask your doctor to order a kidney ultrasound/urine test." Contacted my primary doctor, and she said the radiologist did not see anything concerning on the kidney.  Pressed her on what the radiology tech had said, but she would not recommend a further test at this time.

 

Now wondering if the rise in Creatinine and decrease in the Glomerular Filtration Rate are enough to change her stance on the issue

[rcase13]

Stupid that they can't say. I mean we paid for the test. Why on earth can't they tell us? Why is my health a secret.

[scuba]

Stupid that they can't say. I mean we paid for the test. Why on earth can't they tell us? Why is my health a secret.

 

I asked that question to my lab tech's over the years and they all tell me it's in their employment agreement. They are paid to perform the test, not to interpret or release the results. This is because the "doctor" ordering the tests are the ones "qualified" to do the interpretation. The lab technician is not "educated", in the view of the "system", enough to give a result - and the result could be wrong leading to undo anxiety for the patient or worse.

 

And this is all nonsense. Lab tech's, by and large, have seen more "film" or other results than many doctors get to see. They know what they are looking at and what it means. But they risk losing their job if they share it with the patient. And as I have been reminded lately - some patients really are not prepared to hear a bad result even if you tell them over and over you can handle the truth. I'm sure there has been a case or two where lab tech's did share the information and it was wrong, or out of context or something else and it became a big problem (or lawsuit). So the system closes in on itself.

 

It's probably this way due to liability insurance. As long as the Medical insurance system is at the center of our care rather than the patient being at the center. It's only going to get worse.

[Buzzm1]

I contacted my primary physician with my concerns on the above matter

(reminder: don't ask the question if you aren't prepared for the answer)

 

Hi Dr. xxxxx,

I'm concerned with a few of my 04/20/2015 blood test results 
that likely don't have anything do with the CML as I remain PCRU
(Polymerase Chain Reaction Undetectable)

Creatinine < =1.34 mg/dL last 4 tests ... 1.11, 1.26, 1.26, 1.32
Glomerular filtration rate, nonAfrican American >=60 mL/min, ,,, last 4 tests >60, 56, 56, 53
Neutrophils auto count 2.1 - 7.4 K/uL last 3 tests 5.4, 5.4, 7.4
WBC COUNT 3.5 - 12.5 K/uL last 3 tests 8.3, 9.4, 10.9

mostly the rise in WBC ... 

Sincerely,

xxxxx

 

received back:

 

Dear Mr. xxxxxxx,

Have you thought about who would speak for you if you were ever unable? What would you want them to say? Who would this person be? As your doctor, it's important for me to have your health care decision maker documented in your medical record. Please respond back to this message with the contact information of this person. 
I recommend all my patients give some thought to these unexpected situations while in good health.  
To get started:
• Go to xxxxxxxxxx, OR
• Sign up for a Life Care Planning Class at your facility by calling Health Education at xxx-xxx-xxxx.
We can help you choose an effective health care agent, start a conversation, and document your specific health care wishes. You can complete your Advance Health Care Directive online. Once completed, print it out, have it witnessed or notarized as directed on the document and bring it in so we can enter it into your medical record.
We encourage you to review and update your AHCD regularly. You can get a new form directly from the website xxxxxxxxxxxx or from your local Health Education Center. 

Sincerely,

Dr. xxxxxxxxxx

[Buzzm1]

another message from my primary physician

 

xxxxxxx,

The WBC question would be for Dr xxxx (my Onc).
As far as the GFR and slight rise in creatinine it is not unusual to see these minor Changes as we all get older , not worrisome.
Dr. xxxxx

 

[rcase13]

Good grief, that is very poor form. Why are some doctors like this? My last doctor was this way. I blame him for not being diagnosed earlier. Needless to say I don't go to him any more.

[JaniePoo2U]

I started out taking 400mg of Gleevec when I was first diagnosed in April 2010.  After several months of my counts being really low....especially my platelets......my oncologist dropped my dosage to 300mg.  After he did....the leg cramps I had immediately stopped.  My counts started to come up a little.  My white count, hematocrit and hemoglobin and RDW  and those counts still ran low....but just under normal.  Only in the past year or so have my numbers all gone in the normal range.  No lows - and definitely no high numbers.  I I went into remission in December of 2010 and have been PCR negative since then!  This Dec. marks my 5th year of remission - woot woot! Oh and I also take mine like Antilogical = whole pill, half pill, whole pill, half pill.  

[Buzzm1]

After a minimum of one year of PCRU (possibly less depending on your initial response to a TKI) or whenever you are experiencing debilitating side-effects from an otherwise effective TKI, reducing the TKI dosage should be contemplated. http://bit.ly/1VG2pNr

 

NOTE: Dosage reduction can help moderate side-effects, and also lessen the probability of issues created by longterm use of toxic drugs. http://bit.ly/1RwjdVy

 

Because CML patients may need to continue TKI therapy indefinitely, the long-term safety of each treatment option must be considered. Comprehensive data on both safety and efficacy are now available for imatinib after >10 years use as initial therapy and after 5-6 years for frontline use of dasatinib and nilotinib. Long-term TKI therapy can lead to the development of different types of adverse events (AEs) from those seen soon after initiating therapy. In addition, as patients age concurrent illnesses may develop or preexisting conditions may progress and become clinically important. Thus, physicians are called upon to choose among various treatment options in order to recommend the optimal therapy for each individual patient. Such decisions are informed by a detailed understanding of the distinct benefits and risks of each agent, along with careful consideration of patient-specific factors such as risk status, age, and comorbidities. http://bit.ly/1RvpWuD

 

The purpose of this study is to investigate whether some patients with excellent responses to chronic myeloid leukaemia (CML) treatment are being overtreated, and can remain well on either a lower dose of treatment or without treatment at all. The dose of imatinib (Glivec), nilotinib (Tasigna) or dasatinib (Sprycel) treatment will initially be cut to half the standard dose for 12 months, and then treatment will be stopped completely for a further two years. The trial information will also help to develop a de-escalation and stopping strategy for future newly diagnosed CML patients in the next British national CML study (to be known as SPIRIT3). http://1.usa.gov/1MiK1IG