Help with article link

[tedrog]

Hey all,

A few months Back someone posted an article about research focus on chronic and not cure. Does remember have that link?

Thanks

[lankisterguy Volunteer]

Is this what you wanted :

healthunlocked.com/cllsuppo...

It's Official! Curing Patients Is Bad for Business! Milton Packer describes the end result of profit-dominated drug development

Len

[tedrog in reply to lankisterguy]

Thanks, Len.

I don't know what do. I've started Allopurinol and am expected to take/start the Sprycel, Monday. They gave me a free 30 day supply until we get the 'script passed through.

I am basically fine. Would nevef have known about any if this (CLL and CML) x 4.5 years, that's when the CLL was dx'd. They didn't do the CML test until last Dec, and then he didn't even see it, missed it, while telling me start Imbruvica.

Specialist said no CLL treatment yet, but he had CML to fallback on, as far not letting me off the hook.

If my CML is only 2%... why WW that, too?

idk.

If I take the pills and 6 months or a year later decide to stop, just because, say my "religion" changed or something..., will i be worse off than had I WW longer?

nobody seems to know,YET, his nurse said: No.

the meds will work just as well perhaps later in middle stage?

i'm lost.(funding is not a concern for me personally, US Veterans Admin.)

(the Specialist and nurse i spoke about are: Moffitt Cancer Center, Tampa Fla.)

[Newdawn Administrator in reply to tedrog]

Hi Tedrog,

Reading your posts today, I sense you are feeling quite lost and confused with more questions than answers. Your presentation does seem out of the norm with CLL and CML.

Is there someone in your medical team who you can arrange to see to discuss these questions and specific concerns you have?

Best wishes,

Newdawn

[tedrog in reply to Newdawn]

Just came from Moffitt last thursday.

have started Allopurinol and have a free month of Sprycel i'm supposed to start tomorrow, Monday... also a holiday here.

it seems though, i ask too many questions. was blind sided with CML, went to Moffitt for second opinion before starting Ibrutinib -- forget that he said. That was 8 weeks ago where I finally acquiesced to my first BMB.

Now i have to travel 335mi (round trip) back to Moffitt every week. Starting week after next.

I just don't want to make myself worse. I'm doing ok now., I mean pretty much. Nothing i'd go to dr for... except if i was there, when i was/am, i have said feel tired and weak... and seem to have slight cognitive problems? short term memory? but i always just thought/think it's my sedentary life style... though Inchanged my dieg and started drinking water 9 months ago -- have lost at least 15lbs. :))

Thanks NewDawn. I may find a CML forum, but I really like YOU GUYS!

[Newdawn Administrator in reply to tedrog]

And we are happy to have you Tedrog. We may not have all the answers but the support and concern is certainly there.

Hope you can find your way through the CLL maze that has been made complex by the CML. Formulate your main concerns and put them to paper for your medics because the detail seems to be overwhelming you a bit at the moment. Try to leave the ‘what ifs’ for the future. I’d go mad if I didn’t!

Great to hear you’re losing weight, getting more hydrated and moving more. You’re trying to help yourself Tedrog but don’t beat yourself up for not having all the answers.

Keep well and focussed,

Newdawn

[tedrog in reply to Newdawn]

I will. I'm kinda yes/no over analyzer.

So, once i start, Monday... I've committed.