35 replies to this topic

[Judy2]

Hi Pam South and Caroline,

After just one week on 50mg Sprycel my neuts and lymphs were in the normal range. This is the first time this has happened since I was dx last May. I have high hopes for this med. As for the price, my ins has to accept a certain amount so I can't really tell what the cost on most insurance plans would be but for 30 pills at 50 mg the price is $4,000.00. I have a grant that helps me pick up the co-pays or I would never be able to afford it. Pam S.- you are too funny You said you need to observe how we progress, I feel like a little guinea pig Caroline, I couldn't stop laughing when I read your post  you said the nurse from Bristol Myers says she cannot tell you anything but is there anything you wish to ask? THAT IS TOO FUNNY. If I were Pam Martin I would be spitting a cherry coke over my computer monitor right about now, (She has a projectile spitting problem when anyone posts anything funny on the board). You guys really gave me a good laugh, I needed that.

Judy

[pammartin]

Judy, I swear you have a camera on my living room.

[pammartin]

Wow, you get to talk about your side effects?  All I do is get to listen to a reading of the brochure that comes with the Sprycel, from front to back, then a, 'talk to you next month, bye.'  I am jealous!

[Judy2]

Pam M., Look up, turn your head to the left and smile.

Judy

[pammartin]

oh hell Judy, that means you saw me picking my nose and scratching my arse.  damn

[Judy2]

Pam M., I wasn't going to say anything but..... Also, would you please vacuum that piece of lint up from under your coffee table, it is driving me crazy......

Judy

[jrsboo]

You only get to tell them your side effects after you have listened to their spiel about 4 times.  Then they finally ask you.  Or maybe it was because every time she told me about a side effect I responded that I had that too, I had that too, yup, I got that too.  Lucky me, funky super sensitive system.  Although I have to say, the 2nd best side effect (after controlling the leukemia)?  I have fantastic nails!  For once in my life my fingernails are gorgeous, strong and super white, looks like I just had a french manicure all the time. 

They hadn't heard of that one. 

See?  This time I WAS lucky.

Grins,

Caroline

[pammartin]

So I have to listen at least one more time (plus I cut her short this last time, I just wasn't in a listening mood) and perhaps I can give my two cents also?  I started doing that also, stating I have that side effect, or another, and she would say, ok moving on, or lets get back to this, and my favorite, hhhmmmmmmm, ok, and continue reading.  .  Now I have another reason to be jealous, my nails have never been great, easily broken and a bit brittle, but now what little they grow, they are soft, and peel.  You get to talk about your side effects and have great nails!  Life is just so unfair!   hehe

[jrsboo]

Sorry Pammy.  I wish everyone could have good experiences.  Wanna trade my horrific urology appointment with catheritization by horrid pierced girl?  It was so bad, they offered me a Starbucks card in the hopes I wouldn't sue them.  It might have worked, I am too exhausted to sue anyone.  And I am a lawyer!  Sigh.

Caroline

[pammartin]

oh hell, catheterization and a pierced lovely doing the procedure!  I think I have quickly become, unjealous..  my sympathies, better be damn good Starbucks.

[Judy2]

The good new is the muscle pain in my leg is one thousand percent better. The bad news is I've now noticed some bright red raised bump "things" on my legs. I can't say they are acne, I'm really  not sure what they are but they are bright red. The interesting thing is that they are on my legs and have occurred after I have had the muscle  pain and the burning skin on my legs. As a matter of fact, the skin on my legs still burn, the skin feels very irritated, especially when my clothes rub against my skin. Has anyone had bright red raised bumps on their limbs from Sprycel? This had better not spread to  my face!!! I wish we had a scream emoticon. IF ANYONE OUT THERE FROM THE L&LS SOCIETY IS READING THIS, PLEASE ADD A SCREAM EMOTICON TO OUR EMOTICON CHOICES !!!  I am so tired of all of this. Just venting.

Judy

[Judy2]

Hi Billie,

Do the red bumps sort of look like acne or bites or sores? Mine are weird, I can't really tell what they look like. Did they ever spread to your face? That is what I am afraid of. You are too funny regarding the drooling and sweating and the emoticons that you want. How does sleeping with soap help spasms? Does that also help muscle pains?....and what exactly do you mean when you say sleeping with soap.....this is not connected to the mating with stingrays thing, is it?

Billie, I hope you are feeling better. I was going to send you a private message but when I went to click on private message I saw your bio and it was made up of crazy hieroglyphics. I was afraid I would get hijacked if I clicked on. What is the story with that? Anyway, I hope you are feeling better and before you know it  you will be home.

Judy

[pamsouth]

I been down that road, until I thought I would lose my mind, but we have med's for that, too, right?

When my previous onc mentioned to me, some time ago, about changing from Gleevec, to a newer, greater drug.  We sort of batted the ball back and forth.  Of course she won,  her words "IT WILL BE A PIECE OF CAKE".  I, thinking to myself, in disbelieve, do you really think I am that stupid!!!!!

PamSouth