Can we have another Tasigna discussion? - Cure Parkinson's

Cure Parkinson's

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Can we have another Tasigna discussion?

Isthistheone profile image

My experience with this FDA Black Box medication.

19 Replies

Please share. Did you have a good experience?

Doing it now!

Had a fantastic experience. I'm working on a response now. Its going to take me 3-4 daysMaybe longer if i can't control dyskenesia. This will certainly be a shocker. WE DESERVE BETTER!!

Hi bolt yes i had a great experience. Ive LOST many writen pages to help clarify thngs due to troubling dyskenesia. So that i can keep my flailing arms hands fingers from pressing thewWrong button how do i save and add later. I have mayb e a 30 second window.

MarionP profile image
MarionP in reply to Isthistheone

"So that i can keep my flailing arms hands fingers from pressing thewWrong button how do i save and add later. I have mayb e a 30 second window."

You install a voice-to-text dictation program and use your microphone, speaking your slow clear-articulating best. There are a number of good online dictation programs you can install on your computer and use either in the cloud or right on your computer or smart phone.

Then you can dictate to your heart's content on a separate word file on your computer or phone...think of it as your drafting notepad. Then when it's done or complete after having drafted and edited it over a few sessions to your heart's content, then you copy it and then paste it here, into the response portion of this discussion area here.

Of course! I'd love to hear what you have to say about it

Isthistheone profile image
Isthistheone in reply to tacato

Bad news tacato. I had a tele call with a GU DR. This is the DR who wrote the Tasigna script for me back in September 2019. GU is moving on, they claim not enough positive results as well as the Black Box FDA issues. Tasigna was developed for the treatment of CML TH IS IN MY OPINION TOO BIG. IT NEEDS IT'S OWN THREAD. WILL WORK ON IT NOW!

How many threads do you want on this? There is at least 10 not counting your current post.

Tasigna = Nilotinib.

Is this enough?

healthunlocked.com/search/p...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

Art

HI ART and thank you all for being PATIENT. IM trying to find out how do i save a lengthy post in private until it's finished. My dyskenesia has reached new lows or highs??. I'LL check out your thread s. Almost positive this has never been discussed here before.

You can always make your post and then come back later and edit it to add to it.

Witj my rampant dyskenesia take too long

1. Type it in your email the same as if you are composing an email. It will automatically be saved in your "Drafts" section.

2. Select that draft with a left mouse click each time you want to add to it.

3. When you have completed the draft and are ready to post it, go to that draft and with your mouse cursor on that page, right click your mouse, from the drop down menu that appears, left click your mouse on "Select all". Everything on the page will be highlighted. Right click your mouse again on the same page. from the drop down menu, select "Copy" with a left click of your mouse.

4. Now go to HU and start a new post as though you are going to type something. Enter the title of your new post on the title line.

5. Now move your mouse cursor into the larger box where your post will be written and left click your mouse. You will see the cursor begin blinking in the upper left corner of the box. Now right click your mouse while it is inside of the box and from the drop down menu, select " Paste" with a left click of your mouse. What you wrote in your email should now appear in the large box and your post is now ready to post to HU.

Art

I have no idea what is going on here.

Isthistheone profile image
Isthistheone in reply to kevowpd

Hi k need to find out how do i save portions of a post, until its finished. Lost many pages during dyskenesia episodes

kevowpd profile image
kevowpd in reply to Isthistheone

Type it into MS Word and then copy past it when you are finished.

Isthistheone profile image
Isthistheone in reply to kevowpd

Thanks. You know 70 yr olds and computers don't make the best friends!!

MarionP profile image
MarionP in reply to Isthistheone

Well since I'm only in my mid 60s see my comments just prior and do what I said.

Isthistheone profile image
Isthistheone in reply to MarionP

Thanks Marion. My tech savvy daughter Will be here Saturday. She knows.

Happy Thanksgiving!

It's on my list of things to bring up at the next appointment with the neuro; Nilotinib, stem cells and red light treatment. Right now I take Rytary and Mementadine.