This board is so important to many of us! This isn't a question, just thinking out loud. The importance of having a friend to lean on during times of need and just to chat with with no obvious reason is immeasurable. We all have some really good days while we also face more than our fair share of challenging days. It is so nice to have a friend (or multiple) to lean on. Most of us have family and friends at home. They love and support us. They listen to our complaints..... but I don't think they truly know what we feel. We can try as hard as we can, but know one knows and understands what we feel/face better than another CMLer. I have a GREAT cml friend that I truly love!!! If you don't have one that you feel like that about, FIND ONE!!! They are priceless.
True friendship among fellow CMLers
#1
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Posted 31 August 2016 - 09:30 AM
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#2
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Posted 31 August 2016 - 02:05 PM
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#3
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Posted 31 August 2016 - 02:52 PM
Amen. I don't have an in situ CML pal, so that's why I come here. I don't know how I could make it without y'all. One thing I might mention, though, is that I just counted up the number of friends I do have who have life-threatening chronic diseases - and came up quickly with 10. Here's what they're dealing with: Parkinson's, recurrence of NHL, CLL, permanent bladder/bowel incontinence, two prostate cancers, throat cancer, amyloidosis, unstable diabetes type 1, and Alzheimer's. With them I share the existential despair! And hope I help them, as they help me.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#4
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Posted 31 August 2016 - 04:32 PM
Cleatus likes frogs!! lolol. It is sad kat73 to think about how many face huge challenges daily. An hear to listen or a shoulder to lean on is a must have!
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#5
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Posted 31 August 2016 - 05:24 PM
I need to learn to live outside of my cml bubble and help others. .....I really struggle with that.
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#6
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Posted 31 August 2016 - 06:16 PM
Nah, Frogie, you have your hands full, and charity begins at home! 
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#7
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Posted 31 August 2016 - 06:17 PM
Plus, you do plenty of helping right here!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#8
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Posted 24 September 2016 - 12:28 PM
I'm glad to be in this forum. As a newbie here, I am thankful I found an encouragement reading the blogs from fellow CML pal.
Sept. 2011 WBC 119,000
Oct. 2011 Confirmed CML,Started Hydroxyurea 1000mg 2x daily
March 2012 Confirmed Ph+ CML, Started Gleevec 300mg daily
Sept. 2013 Gleevec 300mg every other day
March 2014 Tasigna 600mg 2x daily
May 2014 Tasigna 400mg 2x daily
July 2015 to present Tasigna 300mg 2x daily
#9
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Posted 17 March 2017 - 03:02 PM
#10
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Posted 17 March 2017 - 10:09 PM
#11
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Posted 17 March 2017 - 10:45 PM
#12
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Posted 02 April 2017 - 09:54 PM
Can't believe it's been almost 18 months since diagnosis. These boards were my lifeline. After such difficulties with Tasigna (withe fire ants, head burning and itching drove me crazy. They should use it for spies. I would have admitted to anything to get it to stop. I called it the North Korean secret weapon), first prescribed because i had yet another blood anomoly to finally finding consistency with Gleevec, despite the well known difficulties, I have had,PCRU every three months since last April (2016).
Hard to stay on even 300 mg of Gleevec with all the horrible side effects. GI mostly. And fatique. Had to stop teaching my class. but I want those PCRU results so I can try to go off next year.
#13
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Posted 02 April 2017 - 10:55 PM
Judith - have you tried including a good probiotic in your diet, plus psyllium husk (Metamucil) - will make things a bit more solid, so to speak.
#14
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Posted 04 April 2017 - 09:13 AM
Judithb - I found switching to Sprycel from Gleevec helped enormously with the periorbital (and general) edema, nausea, malaise, and fatigue. Although the fatigue and depression (depression and fatigue?) crept to the forefront after some years - and my onc has told me all the TKI's cause fatigue - I would still say Sprycel was a huge - HUGE - improvement of all those side effects over Gleevec. So, if Sprycel is an option for you, and if you get miserable enough, you might consider it. However, I totally understand the desire not to rock the boat, if you've got that nice string of undetectables tied to the stern line!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
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