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#41 hannibellemo

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Posted 18 June 2017 - 04:59 PM

TeddyB,

 

I've  used Metamucil off and on for years, originally started with psyllium seeds mixed in apple juice. Then the thinking was that psyllium reduced cholesterol and the price at my co-op tripled. 

 

I switched to Metamucil and it works great for either constipation or diarrhea. One thing, be sure and take it with plenty of water, at least 8 oz. I know it sounds counter-intuitive but it gets very thick (drink it fast) and could cause an obstruction without enough water.

 

Good luck!


Pat

 

"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>


#42 TeddyB

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Posted 21 June 2017 - 03:05 AM

TeddyB,

 

I've  used Metamucil off and on for years, originally started with psyllium seeds mixed in apple juice. Then the thinking was that psyllium reduced cholesterol and the price at my co-op tripled. 

 

I switched to Metamucil and it works great for either constipation or diarrhea. One thing, be sure and take it with plenty of water, at least 8 oz. I know it sounds counter-intuitive but it gets very thick (drink it fast) and could cause an obstruction without enough water.

 

Good luck!

 

Thanks :)



#43 TeddyB

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Posted 27 June 2017 - 04:16 AM

Just a quick update.

Since starting the new diet regime and splitting the Gleevec dose to  breakfast/dinner i have not had diarrhea once. I have had a day or 2 of mild nausea which was pretty easily controlled with ginger, but that is about the same as the "Gleevec normal"

 

I will still try to convince my onc to let me go down to 300mg daily if my latest pcr is 0,01 or lower.

 

Hope you all have a great summer :)



#44 kat73

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Posted 03 July 2017 - 04:04 PM

This is great news, TeddyB.  Eventually, we tend to find our way to solutions.


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.


#45 jmoorhou

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Posted 06 July 2017 - 01:58 AM

I talked to Neal Shah a top CML expert at UCSF, and he said just about anyone can take 300 mg.   He also suggested I try cessation rather than cutting down.   I wish I had asked him if one's immune system is more apt to kick in if you are not taking a TKI.


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#46 TeddyB

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Posted 20 July 2017 - 02:52 AM

This is great news, TeddyB.  Eventually, we tend to find our way to solutions.

 

Thank you. Yes indeed, after a few weeks of vacation in the sun and not so much healthy foods/drink, the problems are gradually coming back, but i am starting my strict regime again after this weekend to hopefully get it under control quickly. It is vacation time, and i refuse to let Gleevec issues dictate what i eat/drink in these few weeks. At least i am now sure that red wine and spicy/fatty foods are a big "no no" and those seem to do the most damage :)

 

I talked to Neal Shah a top CML expert at UCSF, and he said just about anyone can take 300 mg.   He also suggested I try cessation rather than cutting down.   I wish I had asked him if one's immune system is more apt to kick in if you are not taking a TKI.

 

Thank you.

 

My latest PCR came back 0,02%, my 4 latest tests have been:

 

PCRU

0,15%

PCRU

0,02%

 

so i wont be cutting down just yet unfortunately.



#47 kat73

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Posted 20 July 2017 - 09:57 AM

TeddyB - Just hang onto that "zero to the right" - that's my personal mantra - and live to fight the side effects another day.

 

On a lighter note, I have poison ivy on my face with a very important family wedding this weekend.  Eye is swollen up.  I was super careful about yard work in the past two weeks so I wouldn't have "gardener's arms," but I guess I just wasn't careful enough.  Got a killer dress, but of course the gods saw that and, as Roz Chast so aptly says, KABOOM!


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.


#48 gerry

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Posted 20 July 2017 - 05:02 PM

I've seen mention before about spicy food causing issues, but I am sad about the red wine doing this for you. I used to wind up with fat ankles from the fluid retention caused by the red wine ( or probably any alcohol). Just knew what I was in for when I had a glass or two, slightly better side effect to endure than yours.

Are you sure Kat and I still can't convince you about the benefits of the psyllium husk. You might be able to have the wine and the spicy food if it works for you. :-)

#49 TeddyB

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Posted 21 July 2017 - 04:44 AM

TeddyB - Just hang onto that "zero to the right" - that's my personal mantra - and live to fight the side effects another day.

 

On a lighter note, I have poison ivy on my face with a very important family wedding this weekend.  Eye is swollen up.  I was super careful about yard work in the past two weeks so I wouldn't have "gardener's arms," but I guess I just wasn't careful enough.  Got a killer dress, but of course the gods saw that and, as Roz Chast so aptly says, KABOOM!

 

Thanks :)

 

Yikes, hope your swelling go`s down before the big day........good luck.

 

I've seen mention before about spicy food causing issues, but I am sad about the red wine doing this for you. I used to wind up with fat ankles from the fluid retention caused by the red wine ( or probably any alcohol). Just knew what I was in for when I had a glass or two, slightly better side effect to endure than yours.

Are you sure Kat and I still can't convince you about the benefits of the psyllium husk. You might be able to have the wine and the spicy food if it works for you. :-)

 

Thanks, luckily beer and white wine are fine for some reason :)

Right now my stool situation is good, regular one time pr day, no diarrhea at the moment, just some mild nausea from time to time. I have ordered a box of Psyllium Husk just in case, and will try it if my stomach acts up again.



#50 Mosey

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Posted 23 July 2017 - 04:00 AM

Hi There Teddy,

 

Hang in there and you'll get that Zero!

 

I've had CML since 2002 and have been on Gleevec since my DX. That Zero dream was always just within reach and then it was gone. It took me a real long time to get and then once I had it, I lost it. It came and went and then I finally got to keep it. So just hang in there and you'll achieve it.

 

I too have talked to my onc about cutting down my dosage as I am at 600mg and I've had some wild side effects. But even though I'm at Zero, he is not very keen on the idea. I had to go off the drug for 90 days due to some edema that no one could figure out and everyone swore was related to the Gleevec except for me. I went off the Gleevec for the 90 days and a few things happened, The edema got worse, my blood counts started to rise, and I was losing weight. Now the last one I was very happy with. :D

 

My onc put me back on the 600mg of Gleevec and it took about 3 months or so to get my numbers back in order and that is when he told me that I was most likely not a candidate to stop the Gleevec. He would be willing to lower the dosage but nothing else.  So, I'm still on the  600mg as I have been for the last 15 years and I still have the edema. Oh well! At least I'm consistent.   :rolleyes:

 

Keep working on that Zero, You'll get it!

 

Mosey :)



#51 Kali

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Posted 23 July 2017 - 09:58 AM

For anyone reducing dosage, what frequency of testing for BCRABL is recommended to ensure numbers are staying okay?

For example, I reduced from Sprycel 100mgm to 70 MGM. Most recent test (two weeks ago) was 0.0000. They scheduled me back in 3 months.

If I reduce to 50 MGM, would testing every 3 months still be okay or should it be more frequent than that and for how long?

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%


#52 Buzzm1

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Posted 23 July 2017 - 10:29 AM

For anyone reducing dosage, what frequency of testing for BCRABL is recommended to ensure numbers are staying okay?

For example, I reduced from Sprycel 100mgm to 70 MGM. Most recent test (two weeks ago) was 0.0000. They scheduled me back in 3 months.

If I reduce to 50 MGM, would testing every 3 months still be okay or should it be more frequent than that and for how long?

Kali, during my extended reduction, I personally never saw the need for more frequent BCR/ABL testing. 


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#53 Kali

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Posted 23 July 2017 - 12:56 PM

Thank you Buzz! Good to know. I want to stay on top of this disease so if it overtakes the reduced dose, I will know in time.

Hopeful that would not happen, but I want to respect the disease while also helping with side effects.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%


#54 cmljax

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Posted 24 July 2017 - 08:32 AM

Kali:

On my first dose reductions, I was tested in 4 weeks and then again in 2 months.  On my second dose reduction (see my signature), I was tested in 6 weeks (blood draw this morning actually) and will be tested again in 6 more weeks. I have no idea why the intervals are different and whether or not either is correct, but it is what my oncologist wanted to do.  I was so pleased to get him to agree to the dose reductions, that I did not argue about frequency of testing.


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative


#55 Kali

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Posted 24 July 2017 - 09:33 AM

Thanks for sharing that Cmljax. I will ask my doctor about this.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%


#56 gerry

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Posted 24 July 2017 - 04:51 PM

My doc had me at three monthly testing it didn't change when I dropped to 300mg Gleevec.

#57 TeddyB

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Posted 25 July 2017 - 06:42 AM

Hi There Teddy,

 

Hang in there and you'll get that Zero!

 

I've had CML since 2002 and have been on Gleevec since my DX. That Zero dream was always just within reach and then it was gone. It took me a real long time to get and then once I had it, I lost it. It came and went and then I finally got to keep it. So just hang in there and you'll achieve it.

 

I too have talked to my onc about cutting down my dosage as I am at 600mg and I've had some wild side effects. But even though I'm at Zero, he is not very keen on the idea. I had to go off the drug for 90 days due to some edema that no one could figure out and everyone swore was related to the Gleevec except for me. I went off the Gleevec for the 90 days and a few things happened, The edema got worse, my blood counts started to rise, and I was losing weight. Now the last one I was very happy with. :D

 

My onc put me back on the 600mg of Gleevec and it took about 3 months or so to get my numbers back in order and that is when he told me that I was most likely not a candidate to stop the Gleevec. He would be willing to lower the dosage but nothing else.  So, I'm still on the  600mg as I have been for the last 15 years and I still have the edema. Oh well! At least I'm consistent.   :rolleyes:

 

Keep working on that Zero, You'll get it!

 

Mosey :)

 

Thank you :)






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