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Support level needed for treatment

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Hi,

My son Jonathan, age 28, appears to have CML.  He lives in Texas, we are in Maryland.

We are helping to enroll him in healthcare plans with a Dec 15 deadline looming.  If we enroll him in Texas and  he ends up needing a high level support, he would need to come back to Maryland, which would not be covered by the Texas insurance plans.

On the other hand, if a high level of support is typically needed, we could get him to Maryland now and enroll him, by the 15th, in the Maryland Health plan for 2016.

My question to the group is what level of support he will need, assuming (at best) he starts a course of Gleevec and responds well.  

Is this something he can do on his own?  

Thanks for any feedback.

 

Mike

Hi and sorry to hear the news about your son.

I seem to be first to respond to your post so need to say that this forum is prodominently UK based members.  Hence we have different challenges with regard to healthcare and are generally provided by the NHS and where necessary by funding and support from the Leukaemia and Cancer Research charities.

I will say at early juncture that it's really important that he is covered and can access the best services possible.  Both in terms of Consultants and also with regards to being able to get the costly medication that will be required.

Because I'm English with only a little knowledge of the US system and not in either of the states you mentioned then I don't really know what is classed as "high support".   I can't help thinking though that it's going to be really important for now and the future that you get whatever isn't going to restrict his opportunity to get the best available medication and treatment.   So I'm thinking "high" is likely to be the appropriate one.

I note you said he "appears" to have CML.   Do you mean there's some doubt?  That diagnosis isn't yet confirmed?   If so then that's where he needs to start and with a good Haematology consultant.

You also said "Is this something he can do on his own?".   Again I'm not sure I understand what you mean by this?    But he will need  hospital services that are able to undertake regular monitoring of his blood and in particular such as genetic testing for the Philadelphia chromosome and/or the BCR-ABL1 gene.    IF CML is confirmed and he's a good candidate for TKI therapy such as the drug you mentioned then he will need regular monitoring and check ups throughout his life. 

This site has some fabulous resources available and I'd suggest you familiarise yourself with the stuff under CML Facts.   In there are such as FAQ's and then under "LIVING", there's a "Just Diagnosed" and again this has some good information and including a template of questions which you and your son will be well advised to ask. 

In the meantime all the best

 

 

Hi Mike, 

Like Darley has said, it is difficult for those of us based in UK/Europe to advise on the US healthcare system as it is based on the level of private health insurance plan you have. So I am not able to advise you specifically on your situation- however, we partner with a very good patient run CML group based in the US - you can access their website here: http://www.nationalcmlsociety.org/

Greg Stephens who runs this group is very knowledgeable about access to TKI therapy in the US and I am sure will be able to advise you.

As to whether your son will be able to 'handle his care' independently of you then I would say- if he has been diagnosed in Chronic Phase and is being treated at a good specialist centre who will monitor his response to TKI therapy then yes, it is more than likely that he will. If he is based in Texas I suggest that MDACC in Houston would be the place to go, but please do contact the National CML Society and ask for their advice.

Meanwhile if you need to ask for any other advice about CML then please do not hesitate.

Best wishes,

Sandy