Update, Media Portrayals, Grad Thesis on Cancer/CML Patients

[Guest guest]

[Cross posted to CML lists]

Hi all,

For those of you who don't know me, here's a quick recap: I was diagnosed

with CML just over seven years ago, did the interferon route, started

Gleevec in a clinical trial, had two stem cells harvests but no transplant,

and have been in cytogenetic remisson for several years now (PCR remains

detectable).

I am hoping some of you can help me out with my master's thesis for graduate

school since it relates to cancer, and part of it will focus on CML

patients. I am planning to do my thesis on how cancer patients are portrayed

in the media vs. the reality of being a cancer patient. I feel that

sometimes the media seek out " the best " cancer patients to do stories about

-- those who had a " miracle cure " or are thriving and living a " normal "

life. This has been especially true of CML patients since the dawn of

Gleevec, I believe. My thesis will explore whether the way cancer patients

are portrayed in the media matches the reality of their lives (it may or may

not), in general. We rarely hear, for instance, about the cancer patient who

isn't doing well -- who is going bankrupt because of their medication and

health costs, who the medications didn't work for, who have emotional/mental

health struggles, etc. We always hear about the " Lance Armstrong types " or

those who feel that cancer is the best thing that ever happened to them. I

wonder if there's another side to the story.

I'm just doing some preliminary information gathering right now, and would

love to hear from you about this topic, if you're interested. If you had a

magazine or newspaper story written about you, I'd also like to hear from

you. If you are not doing well and feel that your " side of the story " hasn't

been properly represented by the media, I'd like to hear from you. Any

identifying information you provide to me will be kept confidential unless

you indicate otherwise.

Later, I may do a more formal poll on this topic. Right now, as I said, I'm

just doing some informal gathering of information and opinions.

I'd love to hear from you - please email me *off list* at:

jennifer@... -- that is: jennifer @ cmlsupport dot com (get rid

of the spaces)

Thanks for your help!

[Guest guest]

,

I am doing great. CML is not the best thing that ever

happened to me - my kids are. Gleevec has been great,

my Drs have been great. Life has changed very little.

CML is a mental burden as the unanswerable questions

of the future are more regularly on my mind, but if I

compare my exectations to the nearly 4 year reality -

I am doing much better than forecasted.

I had lost my job in September and am still looking

for a new position, when you couple this with the CML

- perhaps my stress factor is higher. But if you

compare the need to worry about a job to having to

worry (contstantly) about my health, I am in pretty

good shape.

Good luck with your study.

Chris

--- jennifer g <jenniferg@...> wrote:

>

> [Cross posted to CML lists]

>

> Hi all,

>

> For those of you who don't know me, here's a quick

> recap: I was diagnosed

> with CML just over seven years ago, did the

> interferon route, started

> Gleevec in a clinical trial, had two stem cells

> harvests but no transplant,

> and have been in cytogenetic remisson for several

> years now (PCR remains

> detectable).

>

> I am hoping some of you can help me out with my

> master's thesis for graduate

> school since it relates to cancer, and part of it

> will focus on CML

> patients. I am planning to do my thesis on how

> cancer patients are portrayed

> in the media vs. the reality of being a cancer

> patient. I feel that

> sometimes the media seek out " the best " cancer

> patients to do stories about

> -- those who had a " miracle cure " or are thriving

> and living a " normal "

> life. This has been especially true of CML patients

> since the dawn of

> Gleevec, I believe. My thesis will explore whether

> the way cancer patients

> are portrayed in the media matches the reality of

> their lives (it may or may

> not), in general. We rarely hear, for instance,

> about the cancer patient who

> isn't doing well -- who is going bankrupt because of

> their medication and

> health costs, who the medications didn't work for,

> who have emotional/mental

> health struggles, etc. We always hear about the

> " Lance Armstrong types " or

> those who feel that cancer is the best thing that

> ever happened to them. I

> wonder if there's another side to the story.

>

> I'm just doing some preliminary information

> gathering right now, and would

> love to hear from you about this topic, if you're

> interested. If you had a

> magazine or newspaper story written about you, I'd

> also like to hear from

> you. If you are not doing well and feel that your

> " side of the story " hasn't

> been properly represented by the media, I'd like to

> hear from you. Any

> identifying information you provide to me will be

> kept confidential unless

> you indicate otherwise.

>

> Later, I may do a more formal poll on this topic.

> Right now, as I said, I'm

> just doing some informal gathering of information

> and opinions.

>

> I'd love to hear from you - please email me *off

> list* at:

> jennifer@... -- that is: jennifer @

> cmlsupport dot com (get rid

> of the spaces)

>

> Thanks for your help!

>

>

>

>

>

>

>

>

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