10 replies to this topic

[Marnie]

Hi, Billie. . .I've heard that when you switch from G to Sprycel headaches are pretty typical, and they eventually go away.  I'll probably be in the same position as you in a few weeks. . .I'm probably switching to Sprycel, depending upon the results of my mutation tests.

Hang in there, and try not to be scared all of the time.  There are lots of folks on this forum who have been living with cml for a long, long time.  If you let it, life can get back to pretty much normal. . .though it won't ever be exactly the way it was before diagnosis.

I'll be interested to hear when your headaches clear up, as I'll be following in your footsteps soon.

Marnie

[MJL]

I'm scared too Billie, and I have been ever since my diagnosis which was abot 18 months ago. I bet there are loads of us on this board who are just as scared as we are. I am on Gleevec like many others and "knock on wood" it is doing it's job. Not without side effects but I have learned to live with them. I am grateful for this site, I check it every morning and learn so much and I feel I am not alone on this journey. Good luck with the Sprycel, it seems to have helped many others.

MJL.

[CallMeLucky]

Welcome Billie - sorry Gleevec didn't work for you, I hope you have better results with Sprycel.  I've heard lots of people talk about the headaches, but they say it gets better over time.  Be sure to drink lots of fluids, it may not help, but sometimes it does.

Hope you feel well soon.

Try not to be scared - we all are, but it doesn't do us much good worrying about the things we can't control.  Just do your part, take your meds and stay engaged in your treatment, the rest will just be......

[jrsboo]

Hi Billie,

I too am on sprycel, but was never on anything else, they started me on Sprycel.  I have been on it for three months now.  It has taken that long to sort of stabilize.  I was so exhausted for the first couple of months, I think I spent the first month sleeping, and then I found that I could do a couple of hours of work in the morning, so scheduled things between 10 am and 1 pm.  After that I would have to take a nap.

By now, I still try to keep things to the 10-1 schedule, but don't necessarily need the nap.  I do get very tired but have learned to sit down and rest.  After an hour or two of mindless television I can tackle another project.  But this means that I can't work a full day.  I am only in my mid-40's and own my own business, which in a way is the best of all possible worlds--I can work when I can, and then just rest when I need to, although I did need to find a friend who could take over my clients if something disastrous happened)

I have also been able to get a little more exercise lately.  I was used to being a very active person, walking, hiking etc with the dog every day.  And then I couldn't even walk around the block.  I almost got stuck one day by walking too far away from the house ( a whopping 3 blocks) and then had the horrible thought that there was no way to get back home.  But just took it very slow and made it. 

I had a great deal of shortness of breath, and find that if I get too tired, I can't breath properly. 

So I have learned that sometimes I will need to use the scooter baskets at the grocery store.  And sometimes I am just fine. 

I understand being scared, I would challenge anyone on this forum who says they were never scared.  Being told you have a lifelong potentially fatal disease that you are going to have to take chemotherapy for the rest of your life for is terrifying. 

But it does get better.  The human psyche can only stay in extreme states of anxiety for short periods of time.  The anxiety level eventually winds down.  But the depression can certainly last a very long time.

You can always come here and find friendly "faces". 

I hope you have a better time on Sprycel.

Caroline

[Tedsey]

I am scared too.  But as time goes by, life is getting somewhat back to normal.  I see a cognitive behavioral therapist (kind of psychologist), and it really helps me to talk things out (my doctor will even do phone sessions when I cannot see her in person).  I am blessed with a wonderful therapist.  I believe we have a good fit.  Not that I am an advocate for drugs, but I am on 100mg Zoloft (anti-depressant/anxiety med.).  It helps take the "edge" off for me.  And all my life, I just felt too deeply about everything.  It has been a relief not to be consumed by emotion all the time.  I did not do great on Gleevec either.  After switching to Sprycel, I got some headaches.  I switched from Gleevec to Sprycel without a break.  It was very hard on me.  But after about 7 days, I started to feel better.  After 4 months on Sprycel, I am feeling very, very good.  Give your body some time to adjust.  This may be a good drug for you.  I don't get the cramping on Sprycel like I did on Gleevec.  I am glad you have become a member of this group.  The support here is phenomenal. 

All the best,

Tedsey  

[hannibellemo]

Welcome, Billie,

You really didn't miss much in the time you couldn't log in because some sort of bug kept most of us from posting anything anyway. I started Sprycel about 15 months ago and the experience was not pleasant, especially since I had so few side effects on Gleevec. However, things settled down for the most part. Side effects on Sprycel, especially the fatigue seem to cycle with me. I'll feel great for a few months and then, wham, really tired for a few days and weepy. Really weird.

I've been MMR since August and for the most part feel great! I'm sure you will, too.

Pat