112 replies to this topic

[Bmorris]

Waiting to start treatment with Tasigna. What are the real side effects. What can I expect. Is my active lifestyle going to change?

[Gail's]

Welcome here. It's a good place for answers. I'm on gleevec so don't know much about tasigna. I'm sure you'll get good advice from others.

[IGotCML]

Hi Bmorris. I have been on Tasigna for a little over 2 years. Side effects obviously are different for everyone, but from my experience and from what I read on the this forum, dry skin and rashes are common side effects.

 

I was very active before CML and it has been a challenge for me to regain a high energy level which is due to taking the Tasigna every day.

 

When do you start on Tasigna? It is recommended to have an EKG before starting Tasigna - have you done that yet?

[Bmorris]

I did get my EKG. I'm waiting for funding for my Tasigna. Should find out Monday when I go in for a bone marrow biopsy. Have you had one of those?

[Gail's]

Pretty much everyone needs at least one BMB. Only way to know exactly the starting point with CML. Has info you can't get any other way. My onc says I'll only need one.

[Kittywatkins]

I just saw my new Onc (my third). He did some bloodwork to see where my numbers are. He's switching me from sprycel 100mg to tasigna. I couldn't deal with my side effects on sprycel and my thyroid level is all over the place. Hopefully we can live with the side effects on tasigna. Good luck and keep us posted

[Bmorris]

Thanks Gail's and kittywatkins. Luckily, I really like my Dr. I'm pretty nervous about the unknown. Wondering how bad the side effects of Tasigna are going to be.

[chriskuo]

With tasigna, watch your glucose levels.  For some people, glucose levels can increase substantially.

[IGotCML]

The side effects will be greater initially as Tasigna destroys the leukemia cells, so some side effects will decrease or even disappear over time. For example, when I first started Tasigna I had minor bone pain and headaches that went away after 2 months and never came back.

 

Regarding the bone marrow biopsy I had no problem with the procedure, but it was very uncomfortable to sit for a few days while it healed. Not a big thing but you might need to alter some of your daily activities this week.

[Lisa Lisa]

I just had my first BMB on Wed. I had minimal pain/discomfort. Make sure you are in a comfortable position, so you dont have to move. You dont want to move. It took about 20 min. Also dont drive for a few days after, it is a bad butt position... I found that driving hurt the most. Last, dont accidentally hit the spot! Yikes! Good luck. I am on Sprycel 100, not Tasigna.

[snowbear]

I had my BMB done by Radiology because my doc was recovering from hip surgery.  I was laying down on my stomach with a wedge under my ankles and it was much more comfortable than the traditional method of laying on your side.  Ask your doc about it.  I was able to drive myself home and I had no soreness afterwards.  

 

Good luck.  

[Bmorris]

Thanks Lisa Lisa and Snowbear,
I had my BMB today. He had me lay on my stomach. It wasn't very pleasant . But not extremely bad. He said he would first take some blood out and then some marrow. But when he try to get blood out, there was none. So he just got the marrow. I asked what that meant and they said the cell had already taken over the marrow. What ever that means. Still haven't got the Tasigna. They said they would hear something by Weds.

Talk later

[jmoorhou]

Bmorris, as long as you can keep exercising there is no reason to expect a change in your lifestyle.  I am back to exercising more than before CML, I walk a mile every other day.

 

Listen to Scuba, who refuses to let CML stop him!

[Bmorris]

Thanks, jmoorhou, that's good to hear. I like to stay active. I was hoping I would still be able to workout.

[Billie Murawski]

Hi Bmorris, the side effects(s-e) are different for everyone, a lot of people on the board are doing great on tasigna(T). It's so frustrating

waiting  for your medicine(meds)  It's bad enough to get the diagnosis (dx) but then to have to wait UGGH! I started out on Gleevac (G)

for three years then I switched to Sprycel (S) and I've been undetectable for four years. Seven years ago I sat in my chair and looked at my first Gleevac pill, I took it then I sat there for a long time waiting to die. Damn nothing happened, I was sort of pissed off after getting myself all worked up and wasting all that energy for nothing. I think I cleaned my house that day so the people from the funeral home and everybody else who showed up wouldn't think I was a lousy housekeeper.

                                                             Good Luck Billie

[Bmorris]

Billie Marawski, LOL, that's kind of what I have been during! Afraid to do anything. I should hear something today about my meds. Anguish to get started and see how it's going to effect my life. I can't believe this is happening. Feeling go, living life and all of the sudden this crap hits.

[gerry]

Hi Bmorris,

 

My doc mentioned one of his patients was on Gleevec and it was doing all sorts of things to his muscle and joints. He switched to Tasigna and it all improved. He went up a grade in his basketball playing.

 

All you can do is stay positive and address any side effects as they might happen.

[Bmorris]

That's good news, Gerry. They say my meds will be here tomorrow, so I guess I'll find out.

[Billie Murawski]

We'll be here waiting with you,that is so frustrating. Poor Pam Martin waited two weeks for her Sprycel when she was first dx and I think ups lost her meds and she had to wait 2 more weeks. The scary part is we are responsible for our meds so if there is a mix up the ins co expects us to pay the whole price.I'm sure glad she didn't have that problem. Sprycel is $26,000 for three months and I think Tasigna might be more. I don't think that has happened to anybody on the board though.

                                         Good Luck Billie

[pammartin]

Best of luck with the beginning of your meds.  Remember it might not be easy at first, but hang in there it does get better.  The great thing about these meds is although some of us have similar side effects there are others who have little to no side effects.

 

Please keep us posted and don't hesitate to ask questions, there are many knowledgeable people on here who will offer help, support, and credible advice. 

 

Pam