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Side effects are too much for me


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#1 Kittywatkins

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Posted 01 December 2014 - 08:23 AM

I've been on sprycel 100mg since I got diagnosed in May of 2012. I just hit the pcru mark according to my Onc. I haven't seen the results until I see her next week. My problem is that I've had these side effects get worse by the month. This past October was the worse and I'm still recovering. I know it's a big no no but I stopped taking the pill for five days and my energy came back and list 5 lbs. I just couldn't take my house getting dirtier by the day. I could finally clean out my rooms and get my house ready for my twins to come home from college. My headaches have not gone away though. The one weird thing that happened was last night I got such a bad headache and extreme tired so I went to bed and slept for a full 8 hours without waking up once. I got scared so I'm taking my meds tonight. Ugh. Will I ever get my side effects to subside? I had to quit my job that's how bad it gets...

#2 pammartin

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Posted 01 December 2014 - 08:38 AM

Hi, can't tell you my side effects ever left, would be a lie. They did subside though. The headaches were awful at start of treatment but became less and in time they were usually minor annoyances. Like you I had major loss of energy and motivation, I think I almost grew into the couch that first year. Except for the face flushing and the burning sensation on my face I had few side effects toward my third year of Sprycel. Other members have experience with this, but what about talking to your oncologist about reduced dose? If you remain undetectable I would think taking med at lower dose is better than not taking. These meds are great for saving our lives but they can defeat with side effects. Hope you find some relief. Positive thoughts to you.
Pam

#3 Kittywatkins

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Posted 01 December 2014 - 09:16 AM

Thanks Pam. I'm definitely talking to my Onc about reducing. Although I just hit the major molecular, not sure she'll agree. I thank god for this site. Cause I thought I was the only one with these horrible side effects. After reading a bunch of blogs, I now know that I'm not dieing of a heart attack or my insides are going to explode. Or my face is going to burn to the bone from the feeling of it. At one time I thought I had all kinds of cancers do to my pains and aches, lol. I felt defeated and got very anxious and depressed not so long ago. I'm taking a small dosage of Zoloft now. And I guess I felt like why should I complain if this drug is saving our lives. But my real question is how many years will it take to feel like most of these side effects are tolerable. Some months I just can't cope. My Onc says if the med is working and the numbers are getting better than try to live with it. But in October my hands and wrist got weaker and weaker with joint pain. Also my vision is getting weird. So I made an appt with her on December 10. Let's see what she says then.

#4 alexamay09

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Posted 01 December 2014 - 09:37 AM

Kitty you have my sympathy. I am on 140mg daily along with letrozole for breast cancer and feel awful much of the time, with loads of side effects including distended abdomen, nausea and fatigue. I havent reached MMR more than 2 yrs in. Like you I hope things get better.
Love
Alex

#5 Trey

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Posted 01 December 2014 - 09:52 AM

Kitty,

The 100mg Sprycel is probably too high a dosage for you, especially at this point.  I would ask the Onc to lower the dosage at least to 70mg, which is more the standard dosage now.  Or switch to Tasigna. 



#6 Kittywatkins

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Posted 01 December 2014 - 10:02 AM

Alex. I wish you the best! Thanks guys. I will defenitely talk to my on for lowering my dose. I guess I'm taking the pill again tonight after a week break! UGH!!!!

#7 pammartin

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Posted 01 December 2014 - 04:57 PM

Good luck! Please share how you are doing . someone here is always listening.

#8 SandyG353

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Posted 09 December 2014 - 01:35 PM

Hi Kitty.

Did you start on Sprycel after your diagnosis or did you begin with Gleevec which at one time was the start drug?  My daughter was diagnosed 5 and a half years ago and was in complete molecular remission in 5 months.  Her side effects seem less than the other drugs.  However, currently she is getting such bad and painful eyebleeds that a test will be given to see if she is slowly metabolizing the Gleevec.

Dr. Druker responded to an e-mail that I sent him and he wouldn't change the drug.  Robyn will take the blood test which will be sent to a special lab .  If the results show that Dr. Druker is right, he will recommend to her oncologist to drop the doseage.

I have to add that I researched all of the other drugs and find that for my daughter the only one that she could take is Gleevec.  The other would conflict with a heart condition that she has.

In any case, you, like my daughter are in remission, and it does make sense to stick with the drug and adjust the doseage.

Sandy



#9 Susan61

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Posted 10 December 2014 - 02:51 PM

Hi Kitty:  I hope you feel better with a lower dose of the Sprycel.  All these TKI drugs kick our butts in one way or another.  I am on Gleevec for 14 years now, and I still get side effects.  I just try to look at the alternative if I stopped taking it.  I have developed a lot of other serious issues this past year, and have not cut back on my dose of Gleevec yet.  I want to be sure what is causing what with me.  I am on 400mg of Gleevec, but I want to cut back to 200 at some point.

     I was diagnosed on Christmas of 1998, and I thought for sure it was my last Christmas with family and friends.  I have counted each Christmas since that day, and this will be Christmas #16 that I am still here.

     It takes longer for some than others to start feeling better.

     I just Thank God for each day.

Susan



#10 Kittywatkins

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Posted 23 December 2014 - 09:35 AM

Hi guys. So I had my visit with my Onc 2.5 weeks ago. I told her about all of my side effects not going away. In fact getting worse. I asked her to lower my dose. She didn't even want to have that conversation and said no. I broke down and nearly had a nervous break down. She sat down and explained to me that she is switching me to glee vac 400mg. I just got the call that my copays were going to be $100 a month. I can't pay that cause I quit my job from being sick all the time. I get the sprycel for free because my husband works for the company. But do to all of our accumulating medical bills from both of us, not working and hubby getting laid off for 2 years. I just can't take another bill. Hubby took this job with a drastic pay cut just for the sprycel for me. I like my Onc but I feel like she is too busy. She gives me all these things to do and then she emails her nurses to call me with different answers. Bottom line is that I refuse to go back to sprycel 100mg. And can't afford the glee vac for now. My question is should I demand to have my sprycel lowered to 70? She said I'm at MMR for the second time. Is it cause my counts flexuates? I can't live with all these side effects. I'm thinking of switching to another Onc. I go to Sloan Kettering in ny. Anyone go to an Onc they like around nj or ny? Sorry about the misspelling. Btw, I've been off the sprycel for 3 weeks and feel 89% better from side effects except for bone pain. She thinks sprycel has done damage to my bones. I'm scheduling a bone scan soon

#11 CallMeLucky

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Posted 23 December 2014 - 09:56 AM

I just sent you a private message, please check it.
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%
 

 


#12 Trey

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Posted 23 December 2014 - 10:05 AM

So your Onc will not lower your Sprycel dosage, but will switch you to Gleevec?  That is very odd.  I would get a new Onc.  Liking her is not a reason to stay with your Onc.  Find a grumpy codger who will do the right thing for you.

 

Since you have achieved MMR it would be reasonable to lower dosage.  While 100mg Sprycel is used as a starting dosage, it is very often reduced if there are significant side effects.  Most patients end up on 70mg or lower.  Especially with your financial situation, the lower dose Sprycel makes good sense.  Find an Onc who will do that.  Some patients do self lowering by getting the pills in small dosage and taking what is needed.



#13 SUE

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Posted 23 December 2014 - 10:37 AM

Kitty,

 

My onc was reluctant to keep me on 50mg of Sprycel.  I had been on 400 mg of Gleevec for 7 months and had horrible side effects.  When I moved to another state and started to see this onc, she agreed to a "vacation" from Gleevec for a few weeks, but wanted me to take 100mg of Sprycel after 1 week on 50mg.   Because my PCR test showed continued improvement( and because of the knowledge I gained from this board), I pushed to remain on 50 mg.  At her insistence I did go up to 70mg for a couple weeks, but went back down to 50mg when I got a weird rash on my face.

 

Last month I was PCRU and am continuing on 50mg.  I have some annoying side effects, but they usually come and go.  If my PCR test had started to go in the other direction, I would have had to increase my dosage.

 

 It sounds as though you might be a good candidate for a lowered dose of Sprycel.  We're all different, so nobody can guarantee good results, but I would think it's worth a try.

 

Good luck, and keep us posted on how you're doing.

 

Sue


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#14 SandyG353

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Posted 23 December 2014 - 12:46 PM

Hi Kitty.

 I think that it would be a good idea to call Novartis and explain your situation.  Novartis has given patients Gleevec without charging.

Novartis is located in East Hanover, New Jersey.  Try calling and let us know what happens.  You might do better on Gleevec.

Sandy



#15 Kittywatkins

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Posted 07 January 2015 - 07:34 PM

So I finally convinced my Onc to reduce my sprycel to 70mg. Glee vac copays would be too much for me. Well, my husband upgraded the insurance and now I have to pay $1,000 plus for the sprycel. I called Bristol to get the copay reduced. Needless to say it's been over a month and half I haven't taken the sprycel. I just can't believe my skin is back to being smooth. I'm not depressed and most of my bone pain and fatigue is gone. But I am starting to get extremely tired. I'm waiting to get the copay card. I'm just getting anxious because I think these side effects are coming back with a bang! I just can't win! My husband changed jobs with less pay to work for Bristol Myers to get the sprycel for free and now they want to charge us!!! I'll update you when I get back on the 70 mg. oh boy the anxiety!

#16 pammartin

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Posted 08 January 2015 - 01:09 PM

Anxiety is one of my constant battles. I worry when I am on the med and then when I am off. It is fun when your body seems to recover from the Sprycel. Last year was the first time I had a tan in three years. It was great to feel a bit more 'normal'.
Take care




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