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Gleevec to Sprycel


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#1 Lynne D

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Posted 11 August 2011 - 05:50 PM

I know this has been a discussion before but things change in a short time and maybe someone out there has more information now. I was on 400mg of G for 5 years and the side effects were horrendous. So last summer I attempted a switch to Tasigna but I don't think I took a long enough break from the G to the T. Turns out T didn't work out for me. So I had to go back on G. I was fine for about 6 months and 2 months ago all the side effects came back with a vengeance plus some. So now I have my Sprycel here and I stopped taking my G Aug. 3 (9 days ago). The Dr. told me 5-7 days break, but she isn't a specialist and I think that may have been part of my issues with Tasigna. Now, even though I have bone pain, I feel toxin free. So I have been putting off starting the Sprycel. Does anyone have any idea how long I should give it a break to clear totally out of my system before starting Sprycel? I am dreading it, I want to go eat the biggest grapefruit I can find!!!!

I also have an appt. with Dr. Druker in Oct. I have decided to see him every 6 months and use my CT Dr. for maintenance.

So I am just curious what others have done and how it's worked out. I know these drugs are so different for everyone but......

Thanks Lynne



Lynne Dagata

ldagata65@gmail.com

 

"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#2 Marnie

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Posted 11 August 2011 - 07:46 PM

Hi, Lynne. . .I was on Gleevec for about a year and a half before switching to Sprycel.  I took a 4 day drug break, and then I did 5 days of only half-dose of Sprycel (50 mg) before starting on the full doseage (100 mg).  It worked very well for me.  I had a low-grade headache for about a week, and that was it.  Sprycel has been very good to me.  I'm glad that I made the switch, and I'm glad that I took 4 days off and then eased my way in on a half dose.  Do keep in mind, though, that Sprycel tablets cannot be broken, so unless you have 50 mg pills, you're stuck taking the full doseage.  You might see if your doc would be able to get you a very small supply of 50mg tabs.

Good luck!

Marnie



#3 Trey

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Posted 11 August 2011 - 08:01 PM

You are way past clearing out the Gleevec.  The recess is over.  Time to get back to school.



#4 Lynne D

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Posted 11 August 2011 - 08:28 PM

Waaaaah, lol, I know, I was just kind of enjoying my cleansed body!!! I will start tonight.


Lynne Dagata

ldagata65@gmail.com

 

"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#5 scuba

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Posted 11 August 2011 - 09:17 PM

Lynne - what are your counts like?  PCR and FISH levels?

You may be able to start on a lower dose and work up.  Also - take Sprycel at night.  The guys in your dreams will have the headaches - not you.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#6 ChrisC

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Posted 11 August 2011 - 09:32 PM

First, I'm wishing you a response similar to/better than mine: first night a little tummy trouble, after that, "normal" life (ongoing fatigue, brain fog and short-term flashes of bone and muscle pain). Within a couple of days, the Gleevec blanket-of-blah lifted and "I'm back!" Four months later to present: PCRU. I had no idea such a thing was possible! Now I know that many have a much more difficult time, but not everyone does.

I had been on/off completely/taking less (200mg) and then more of Gleevec for over six months. I had been off G for 4 weeks when my blood work showed increases, so as I awaited the arrival of my Sprycel, for a week I was on 400mg of Gleevec (side effects in full bloom). I took one full day off from taking G, then began Sprycel with dinner.

Best of luck to you!


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#7 Lynne D

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Posted 11 August 2011 - 09:36 PM

Thanks, I've had a headache since I've been on Gleevec, it sucks. Not to mention the multitude of other side effects. Haven't had my numbers done in 2 weeks, before I went on the Gleevec holiday. Tasigna gave me an all out folliculitis that was so bad and all my liver and kidney functions were high. My doc was afraid I was going to end up with an all out skin infection. I wish I had given Tasigna a longer try but wish I had tried longer but like I said, I have high hopes for Sprycel.


Lynne Dagata

ldagata65@gmail.com

 

"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#8 Lynne D

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Posted 11 August 2011 - 09:51 PM

Thanks so much, headed to bed and my new bottle of Sprycel.


Lynne Dagata

ldagata65@gmail.com

 

"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#9 mmdojr81

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Posted 15 October 2011 - 12:22 AM

Gleevec has a half life like all other drugs. It would take several months to leave your system. Don't be nervous

Mario



#10 mmdojr

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Posted 08 November 2011 - 06:36 PM

How is the Sprycel going? I started today. So far my insides are like a cup of alka seltzer. No nausea or headache.

I switched because of all the side effects with gleevec (hair loss, stomach issues, nausea, muscle tension).

Hope all is well



#11 GerryL

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Posted 08 November 2011 - 06:52 PM

Just wishing you luck with the change, hopefully Sprycel is kinder to you than Gleevec was.



#12 mmdojr

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Posted 08 November 2011 - 07:10 PM

thanks gerry,

I am hoping for the best, and for you too



#13 GerryL

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Posted 08 November 2011 - 07:18 PM

I got my first PCRU last week (hopefully not  a blip) so am doing well.



#14 scuba

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Posted 08 November 2011 - 07:49 PM

... for what it is worth - I am on 20mg Sprycel.  I have been on it now for about 5 months.  I visit MD. Anderson this Friday (can't believe the date is here already) to have my bones sucked and my veins pricked and my blood siphoned before I see Dr. Cortes.

20mg. is very low dose and I have been kept on it - somewhat against my will - in order to test their theory that low dose works for me.  There is a distinct chance that I may be another one, two logs lower than the two log drop I had in two months.  I hope I might even be PCRu.

I encourage anyone switching to Sprycel - to do so gradually.  Absolutely no sense starting out at 100 mg and getting the headaches and all of the other potential problems.  Start out at 50 or even 20 and work up if necessary.  If Blasts are not a problem - then why do this to yourself? 

If 20mg can work for me - then it just might work for a lot of other people.

full disclosure:  I do take 3 grams Curcumin C3 with bioperine.  I think they want to look at that as well as there is evidence that Curcumin augments Sprycel activity.  It may have nothing to do with the CML, but man it has been wonderful for the Arthritis - all gone ... so I keep taking it.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#15 hannibellemo

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Posted 08 November 2011 - 09:04 PM

Damn it, Michael, it's bad enough we have to figure out this new software! Did you have to go and change your log in, too? (You are "Scuba" now, right? If not I'm very sorry whomever you are)

Pat


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"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>


#16 Augustfirst2010

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Posted 09 November 2011 - 01:35 AM

Hi idagata!

I hope Srycel works for you, it was like night and day for me from G to S! I still have some mean side effects with S, but nothing like what I was having on G...there were days on G that, if not for folks here before me, I just wanted to quit taking it and let the CML have its way. But there are good people here that, as I am sure you have already taken it, really help...I'm sure you have already met Trey!!!



#17 scuba

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Posted 09 November 2011 - 07:42 AM

Hi Pat - Scuba is my login avatar- I don't know why the LLS software system is not consistent.  Michael = Scuba.

I do Scuba dive whenever I can.  I had to wait until my Neutrophils went above 1.0 before I was allowed to go - and then I had to be careful with saltwater infections.  It turns out all is well - but that first dive was high anxiety.

I proposed to my wife 100 feet underwater those many years ago.  I figured the ring would look bigger under water!


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#18 VickiW

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Posted 09 November 2011 - 09:35 AM

Hi Michael Scuba (hehehe)-  I haven't been on the board for a bit but I am a long time (since 2007) board member.  I too switched from Gleevec to Sprycel after 2 years of h--- on Gleevec and final failure.  I have been on Sprycel for 2+ years now and the past year have either (finally) been in PCRU or bounced out just a bit & then back in.  Anyway, what I wanted to share with you was, for me, it took about a year for all the side effects to settle down but now I am cruisin' (except for PN but even that has improved lately, yea!).  Everything now just kind of "cycles" (instead of building like it did on Gleevec) and each time things get milder and milder to the point that now I barely notice them.  And yes, the brain functions again!!!!  Even the short term memory "glitches" have seemed to completely gone away.   Gleevec was a great drug that literally saved my life and for that I am grateful, but Thank God for Sprycel!!!


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#19 mmdojr

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Posted 09 November 2011 - 12:42 PM

hello everyone,

so day two of sprycel. last night I had to use the toilet on two occasions. wasn't expecting that. and I woke up several times during the night to my heart pounding and i was very hot but not sweating. i drank some water which seemed to help. the whole ordeal reminds me of when I drink too much.

don't really have a headache or nausea but a constant hangover type fog in my head.

any words of encouragement from anyone? is there a specific time I should take it so i don't wake up with headaches?

thanks



#20 scuba

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Posted 09 November 2011 - 01:21 PM

Hi Vwoyak - What dosage Sprycel do you take?


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"





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