Advice for newly diagnosed on Gleevec 400mg

Hi:

i was diagnosed in December 2017, put on Gleevac and was resistant to it and am now on  dasatinib, Sprycel. So far it seems to be working, but I will know more in 2 weeks when the BCR ABL results come in. P Also, I am older and fortunately on Medicare with a gap policy and a Plan D policy.

the side effects or discomfort go with the TKI, everyone reacts differently. The side effects are better than the alternative which is what existed before the year 2000.  No control of the CML.  It is a relief to check this forum when one has a strange side effect and find others with the same symptoms.  We mostly live with them.

You are close to age 65. I would recommend you find a medical social worker or someone familiar with the realities of drug costs in the USA and evaluate going onto Medicare as soon as you become eligible.  This will take some research and time.  You will be paying for the drug for a long time. Consult and research carefully. 

i have. Old fashioned Medicare, a Gap policy and a Plan D drug policy.  What is offered to you will be based on which State you live in.  I made my choices years ago so I could have my choice of physicians. I pay higher premiums because of this and it has been worth it for me.  The CML is being managed by the Mayo Clinic. I am relieved to be at a level 1 Cancer Center and have the hospital and medical  bills completely covered because of my insurance coverage.

Even with my coverage I have to pay about $10,000 out of pocket for drugs each year before I go into the catastrophe category where the copay is 5 percent.  With a 5 % co pay the TKI is about $700 a month. forever possibly. 

i do not qualify for any financial aid at this point. I might as my savings disappear.  We are old, on a fixed income and manage carefully. I am a depression baby and spent my entire life saving for the rainy day. My daughter keeps pointing out that it is pouring.

to summarize. Be glad that there is a TKI for you to control the CML, and, if that does not work, there are second and third choices. Hang in there with the side effects. they will not kill you. They change. We all have them.  Find the best insurance and financial advice you can to plan for the long haul. Pick your social security option carefully with the best advice, from various sources, you have available.  Inform yourself on CML. This site has wonderful resources. 

Good luck on our Journey

Gitel in Minnesota

You might want to check out the Leukemia and Lymphoma website. It is US based and quite different from this site. However, it may have a path to USA resources for CML.  I have never fully explored it but that is my impression.  Also, large medical groups sometimes are knowledgeable. I know Mayo is.  You are indeed in a difficult situation. My thoughts are with you.

Gitel