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New lls member with cml

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#1 Guest_billronm_*

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Posted 26 December 2010 - 09:40 PM

I have just joined lls. I have cml and many questions I am not very computer literate please bear with me. I was diagnosed 3 years ago with cml. I was put on Gleevac

I can,t handle the side effects I tried for 3 years. I just started on sprycel a month ago. I have been getting some pretty bad headaches, and I am so tired it takes all I have just to get out of bed in the morning. Is this normal? Will these side effects go away when my body adjusts to the sprycel. I have an appt. with my dr. tuesday but I have to cancel I caught a cold. So I will have to reschedule probably 1 or 2 weeks. Can anyone please help me.I still haven,t adjusted to the fact that I have cml, I am scared all the time.

                                                                                Billie Murawski

Message was edited by: Billie Murawski

#2 Marnie


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Posted 26 December 2010 - 10:15 PM

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.


#3 Guest_billronm_*

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Posted 27 December 2010 - 12:04 AM

Dear Marnie!

      Thank you so much for getting back to me so soon. I really appreciate it. It feels so good to have people out there that understand what living with this disease is like. I am so glad to be off the gleevac. My husband is very supportive I am so grateful for that. But nobody understands how you're whole life is looking for the nearest bathroom everywhere you go.Anyone on Gleevac knows what I mean. I also had a 3lb coffee can with me at all times. Trying to put a little bit of makeup on to hide the raccoon eyes is a real challenge. I gave up. I felt awful for 3 years but everywhere I went people would tell me how good I looked! They lie! I was off Gleevac for a month before I started on the Sprycel. I guess most people can handle Gleevac quite well I just couldn,t. Two days after I went off of it all my stomache problems disappeared, my eyes shrunk under my wrinkled eyelids, and my face wasn,t bloated and I lost 6 pounds in 3 weeks and still losing. But I was still scared because I had to go on another medicine and see what the side effects were with it. At first I got terrible headaches but when they would go away I felt pretty good. It,s been a month now on the sprycel I still get the headaches but they don,t last as long. And they just come out of the blue. I take ibuprofin for them that helps quite a bit. My biggest problem is I am so very tired.The gleevac didn,t make me as tired but I hope when my body adjusts to it I will feel more alert. I do think the sprycel is better for me. My first bloodwork was 2 weeks ago it was good. I had the brc whatever that bloodtest done last week I didn,t get any phone calls so that must have turned out ok.

I will keep you informed if I have anymore surprises in store for me. I feel so much better now just being able to communicate with others in my position.Hopefully I'll snap out of this depression I have been in.   

                                                                           Sincerely Billie Murawski

#4 MJL


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Posted 27 December 2010 - 05:46 AM

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.


#5 CallMeLucky


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Posted 27 December 2010 - 03:39 PM

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......

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#6 jrsboo


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Posted 27 December 2010 - 04:01 PM

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.


#7 Tedsey


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Posted 27 December 2010 - 07:00 PM

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,


#8 Guest_billronm_*

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Posted 30 December 2010 - 08:00 PM

Hi everybody!

I am a real computer dummy, after I joined lls I couldn,t log in. I finally found out what I was doing wrong.

Thank you to everybody who responded to me. I really appreciate it. Marnie I will keep you in formed about sprycel. You were all right the headaches are subsiding some and I can Just sit down in my recliner and relax myself and sometimes they go away I try not to take Ibuprofin to much . I'm going on my second month now and I think I am slowly adjusting to it.

I am so thankful to all my new friends I just might make it after all. You're support has already helped me so. much.

sincerely Billie

Message was edited by: Billie Murawski

#9 hannibellemo


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Posted 31 December 2010 - 08:38 AM

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.




"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#10 Guest_billronm_*

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Posted 31 December 2010 - 09:49 PM

Hi Everyone,

I just wanted to wish all of you a very Happy New Year. And thank you for all you're replies. Actually I tried to find you 3 years ago, but I told you I am a computer dummy. I should change my user name to that! Nah I would probably forget it.  Now I am going to have a couple more glasses of wine and sleep through the New Year.I hope I got this message right I already had 2 glasses of wine.God Bless You all.

                                                                                              Best Wishes  Billie

#11 Guest_billronm_*

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Posted 03 January 2011 - 10:22 PM

Dear Marnie,

I am going on 6 weeks of sprycel. The headaches have gotten much better, I think the worst part is over. I get nagging headaches now and then. Most of them go away on their own. I talked to my pharmacist today, he said usually the headaches go away after about 2 weeks. I think you will be feeling much better on Sprycel.

I can't complain about side effects just fatigue, but I guess that goes with the territory. I go to the cc center jan 19, They'll probably do another blood test there, my first 2 since I have been on Sprycil have been okay. I think you will be very relieved when you go on Sprycel. I will take a few nagging headaches compared to what Gleevac did to me. Just carry some ibuprofin with you for a while.

  I saw the picture of your bike. It's a good looking bike. We have a honda vtx 1800 hopefully when spring comes I can go out on it I couldn't last summer. My husband hasn't completly winterized it yet. He still takes a short ride on it when the salt isn't on the roads. Then he wonders why his knees hurt. One time he got a little bit of mud on it I thought he was going to have a stroke. We live outside Erie, Pa. The weather is so unpredictable here it's hard to make plans all year round.

I am sure in a couple of weeks you will feel good. You're tests came back good so try not to think about it. I know it's hard, but I try not to think about any problems that may come up later. That is my problem too. I don't like living with this disease. But they caught it in time so I can be treated.

                                                                                       Sincerely  Billie

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