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Treatment Options and Choices


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#1 ARTWOMAN

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Posted 08 June 2016 - 06:37 AM

Hello one and all.  I have a post on another LLS site and one respondent suggested I post here. 

 

The issue of treatment options and choosing the right one(s) for me is one I have struggled with since being diagnosed at age 52 in October 2015 (chronic phase).  After experiencing 3.5 months of pure Gleevec hell, I was put on Tasigna as Spyrcel was not an option for medical reasons. I was immediately taken off of Tasigna after experiencing hypertensive crisis after the first dose. This occurred in March 2016.

 

At that point I was adamant about taking no more TKI therapy or any other treatment.  My desire to stop was met with mixed reactions. While my family, friends and many professionals all said it was "my choice" to stop or continue treatment, there was a LOT of pressure to continue. I was told that I was too young, that I had not yet tried enough treatment, and that I "was not sick" (that was said by my oncology social worker).  

 

After a lot of soul-searching and research that included dying from CML, I consented to begin low-dose Bosuif. After only 4 weeks of being off of TKIs, my BCR-ABL1 had gone from about 6% to 20%. After being off TKIs for a total of 8 weeks, I began Bosulif 100 mg daily (since April 23 - almost 8 weeks now).  The nausea, fatigue, diarrhea and chemo-brain are not as severe as with the Gleevec at this low dose, but all are still impacting me greatly and negatively affecting my quality of life. 

 

My dose of Bosulif will most likely increase very soon as my spleen is enlarged and very painful. That and my side effects are really increasing my inability to eat adequately. I find out today my latest BCR-ABL1 results.  How I will accept and cope with more severe side effects, if any, I do not know at this time. I am still open to stopping treatment altogether if I get to the point again where I have no quality of life. 

 

If anyone else is or has been struggling with similar issues, or has any feedback of any kind, please write. Many thanks for "listening" to my story.  ARTWOMAN



#2 Dona_B

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Posted 08 June 2016 - 11:05 AM

Hi Artwoman,

Nice to meet you. No one can feel your pain or gauge the impact of TKIs on your body like you. I hope you are able to find one that works with minimal negative impact. When my oncologist and I settled on a TKI, 2 1/2 years ago; I compared side effects and googled CML blogs + the drug. Found a great one by a woman a few years older than me and a couple years ahead of me on the CML journey. (Since then she has all but quit blogging about CML but she has 2 or 3 years worth of good information archived.) There is a lot of good information here with a decent search engine. If you have time, just scroll through several pages..

 

My biggest side effect complaint right now is weight gain. Sprycel + the Change of Life has not been kind--42 pounds in 2 1/2 years and climbing. Exhaustion and brain fog are two more. UGH! but it's better than pancreatic which a friend is dealing with. I'm just thankful we have more options than just a few years ago. There is going to be a new normal for you.

 

I don't know where you live but the thing that eased my mind the most was an Elevation Health chiropractor and this site. There aren't many EH offices in the U.S. and the closet one is still too far away to see on a regular basis. Anyway, Dr. Harmon did an extensive health evaluation that included blood work. He ordered some tests like Vitamin D and glutathoine that my PCP and oncologist didn't include. He bridged a gap between medical and alternative treatment that I needed bridged. He recommended supplements based on my needs. Beatcancer.org is another alternative health tool here in the U.S. They offer counseling on natural ways to take control. I had one phone conversation but  EH suited me better.

 

There are people here that are much better with the technical terms and details and I usually leave the commenting to them but your post struck a chord with me.


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17


#3 kat73

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Posted 08 June 2016 - 11:55 AM

Artwoman - I hope you can push through the Bosulif side effects and that they lessen over time, as most people report.  You have come to the right place to find people who know exactly just how physically and emotionally miserable these side effects can make you.  Many in the medical community disbelieve what we tell them about quality of life stuff, although many more are getting the message.  In the meantime, ask your doctors to help you find ways to treat these side effects with other medicines - things can be done for stuff like diarrhea and nausea. 

 

Without minimizing your agonies, I can't help but say I am hearing some understandable anger and denial about the whole CML business.  We've all been where you are.  A few sessions with a therapist might be well-timed right now to help you accept what's happened to you.  You know from your research that CML is an invariably fatal disease, usually within 3-7 years.  You do not really want to choose death.  You are going to have to accept treatment.  There really isn't any truly free choice going on here, despite the brave words.  It's interferon (far worse than Gleevec, btw, in terms of side effects), a transplant, or one of the TKI's.  That's it.  And of all of those, the TKI's are the least troublesome and problematic.  They are a miracle, in fact.  We all complain about the change in our quality of life, which is real and it's hard to accept.  But try to keep in front of your mind that the side effects can be eased (and you should demand this and not suffer silently) or someday even perhaps eliminated by a dose reduction.  In the meantime, your PCR is going to show progress against the CML and that will give you more strength to carry on.  CML doesn't care how much you resent its disturbance of your life; it will kill you with cool nonchalance - don't direct that anger toward the Bosulif - the Bosulif is your ally against the enemy.  Every time you take a pill, you are grabbing back control of your life.  Choose to fight.  And keep posting. 


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 Gail's

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Posted 08 June 2016 - 04:52 PM

Kat, insightful response and good advice about accepting we have CML and few choices. On the other hand, I have times when the struggle to quit treatment is quite strong due to poor quality of life. In discussing this desire to quit with my therapist, it was recommended I try to notice things to be grateful for and focus on the impact on my family as severe illness from stopping CML therapy progressed. It was suggested that I say out loud every day things I'm grateful for. This simple exercise, combined with not wanting my family to suffer, keeps me swallowing the TKI. Yes, the side effects did lessen after several months, but some days when I'm reading my email from the toilet, that's small comfort. I like developing gratitude and love for my family as the reasons to go on with treatment.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#5 Antilogical

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Posted 08 June 2016 - 05:14 PM

Random thoughts:

(1)  For most of us, CML is diagnosed early, when we have few or no symptoms.  We start to feel bad when we start the TKIs, hence the resentment toward them.

(2)  Death by CML is not pretty or romantic.  I sure don't want to die of a raging infection or internal bleeding.

(3)  I've come to terms with my TKI side effects.  I don't like them, but it's far better than the alternative!  (See point #2.)  That being the case, I try to make things easier for myself, including ... wait for it ... sprucing up my favorite room - the bathroom!  I added a radio, some reading material, and a comfort height toilet.  I draw the line at food, though....


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#6 gerry

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Posted 08 June 2016 - 05:43 PM

Hi Artwoman,
Talk to your specialist or GP about things that can help with the side effects. I used psysillum husk and a pro biotic + Gastro Stop to help with the diarrhea. Take the psysillum husk well away from any medication. I also used ginger and Maxalon to help with the nausea.

Trey described what it was like to die from CML, it is not quick and certainly not painless. And once you are past a point in time there is no changing your mind.

Have you had another test since starting the Bosulif, if it is starting to work really well, perhaps you might be able to stay on the lower dosage.

Wish you well on this journey that none of us wanted to be on.

#7 thatguy

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Posted 08 June 2016 - 05:44 PM

Artwoman - I hope you can push through the Bosulif side effects and that they lessen over time, as most people report.  You have come to the right place to find people who know exactly just how physically and emotionally miserable these side effects can make you.  Many in the medical community disbelieve what we tell them about quality of life stuff, although many more are getting the message.  In the meantime, ask your doctors to help you find ways to treat these side effects with other medicines - things can be done for stuff like diarrhea and nausea. 

 

Without minimizing your agonies, I can't help but say I am hearing some understandable anger and denial about the whole CML business.  We've all been where you are.  A few sessions with a therapist might be well-timed right now to help you accept what's happened to you.  You know from your research that CML is an invariably fatal disease, usually within 3-7 years.  You do not really want to choose death.  You are going to have to accept treatment.  There really isn't any truly free choice going on here, despite the brave words.  It's interferon (far worse than Gleevec, btw, in terms of side effects), a transplant, or one of the TKI's.  That's it.  And of all of those, the TKI's are the least troublesome and problematic.  They are a miracle, in fact.  We all complain about the change in our quality of life, which is real and it's hard to accept.  But try to keep in front of your mind that the side effects can be eased (and you should demand this and not suffer silently) or someday even perhaps eliminated by a dose reduction.  In the meantime, your PCR is going to show progress against the CML and that will give you more strength to carry on.  CML doesn't care how much you resent its disturbance of your life; it will kill you with cool nonchalance - don't direct that anger toward the Bosulif - the Bosulif is your ally against the enemy.  Every time you take a pill, you are grabbing back control of your life.  Choose to fight.  And keep posting. 

 

 

Kat just destroyed it with that response...

 

I can empathize, maybe not to the degree of where you are in the struggle, because I've never contemplated not taking my medicine, in fact it's been the opposite. At diagnosis, I sat on the bed and cried and told my wife good-bye and hugged my baby girl....(had no idea that this disease by the Grace of God has viable treatments to keep it in check). The disease has been devastating mentally, worse than anything I think I've dealt with in life thus far. Hopefully the worst that I ever will. That said, I had Gleevec side effects hit me about 2 weeks after initiating. I was at work, driving, when out of nowhere, uncontrollable vomiting and a pounding headache. People probably thought I was a drunk driver here in Vegas, broad day light, puking out my truck door. Couldn't hold my head up hardly, sweats, etc. This persisted throught out Gleevec, but was cured by (1) 4mg Ondensetron pill per day. Other than that, felt great. When I had to move to Tasigna for lack of PCR response, the headache returned, along with right side upper abdominal pain (pancreatic or liver pain?) I don't know. ALT and Bili were elevated for first 2 months, along with blood sugar. My vision got blurry to where reading is difficult. Fortunately I found that cardio in the morning cured the head ache, the abdominal pain went away after about a month or 2, along with the blood sugar and liver enzymes. The vision is still bad, but oh well. I mentally fiend for these pills like crack- in hopes that they'll kill this disease, because without them, it is death....Stakes are too high to sit on the fence about treatment. I've got way too much to worry about with my family life to even contemplate giving up, and I'm sure beneath the pain, shock, the constant fear, the anxiety and the hassle, YOU DO TOO. Have faith, experiment with other items in your routine as possible and I'm optimistic that you'll find relief in some degree, by some mean(s). Best wishes on the results.


3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#8 Trey

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Posted 08 June 2016 - 08:24 PM

Life is about choices.  Sometimes death is about choices.  Choose wisely.

 

It takes several months to get past any initial downside effects of a particular TKI drug.  "Gleevec hell" in your terms may just have been a temporary period of settling into the drug.  Tasigna was not given a fair chance -- one dose caused "hypertensive crisis"?  Not even possible.  It may have been the drug to save your life.  Your time with Bosulif also has not been given a fair chance.  Sprycel was not even considered due to doctor inputs -- maybe that was misguided.  You would pass up Sprycel because of perceived medical issues yet chose to die instead?  Give a drug -- any drug -- a fair chance to prove itself.  Otherwise you don't even need to make a choice to die.  It will come naturally as a result of the previous poor decisions, all very well supported by convenient factoids; or maybe just BS. 

 

Most of us have worked through the initial side effects of our particular drug and have "gotten to" a place beyond that and found a place which is acceptable.  Often that process takes many months.  You were diagnosed 8 months ago.  You have not allowed any drug the opportunity to get you beyond that initial status of significant side effects.  Give one drug a chance.  Any drug.  And it will get better over time.  How many times have I said that on this website?  A lot.  Will you be one who listens?  Choose wisely.



#9 acl

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Posted 08 June 2016 - 10:46 PM

Artwoman - I hope you can push through the Bosulif side effects and that they lessen over time, as most people report.  You have come to the right place to find people who know exactly just how physically and emotionally miserable these side effects can make you.  Many in the medical community disbelieve what we tell them about quality of life stuff, although many more are getting the message.  In the meantime, ask your doctors to help you find ways to treat these side effects with other medicines - things can be done for stuff like diarrhea and nausea. 

 

Without minimizing your agonies, I can't help but say I am hearing some understandable anger and denial about the whole CML business.  We've all been where you are.  A few sessions with a therapist might be well-timed right now to help you accept what's happened to you.  You know from your research that CML is an invariably fatal disease, usually within 3-7 years.  You do not really want to choose death.  You are going to have to accept treatment.  There really isn't any truly free choice going on here, despite the brave words.  It's interferon (far worse than Gleevec, btw, in terms of side effects), a transplant, or one of the TKI's.  That's it.  And of all of those, the TKI's are the least troublesome and problematic.  They are a miracle, in fact.  We all complain about the change in our quality of life, which is real and it's hard to accept.  But try to keep in front of your mind that the side effects can be eased (and you should demand this and not suffer silently) or someday even perhaps eliminated by a dose reduction.  In the meantime, your PCR is going to show progress against the CML and that will give you more strength to carry on.  CML doesn't care how much you resent its disturbance of your life; it will kill you with cool nonchalance - don't direct that anger toward the Bosulif - the Bosulif is your ally against the enemy.  Every time you take a pill, you are grabbing back control of your life.  Choose to fight.  And keep posting. 

Kat73, you make me feel very sad!!! You said CML is an invariably fatal disease, USUALLY WITHIN 3-7 years! I have not heard that before. I have told my Hematologist that I want to be treated, and his answer is you are being treated! I am very discouraged now. But many people have been treated with TKI's for 15 years and are still living!! I don't want to die by CML. My BCR/ABL was 0.13% and I am anxious to find out the result from May 12th. I believe that I will die of a heart attack or stroke. I don't want to die from CML, it is very painful!!!!!!! Sorry Kat73.

acl


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#10 Buzzm1

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Posted 08 June 2016 - 11:12 PM

My BCR/ABL was 0.13% and I am anxious to find out the result from May 12th. 

acl, I'll be anxious to hear the result of your May 12th PCR; and I thought my PCR result was slow in coming (10-17 days).  Post your history when you have a chance .. thx.


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


#11 gerry

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Posted 08 June 2016 - 11:33 PM

Kat73, you make me feel very sad!!! You said CML is an invariably fatal disease, USUALLY WITHIN 3-7 years! I have not heard that before. I have told my Hematologist that I want to be treated, and his answer is you are being treated! I am very discouraged now. But many people have been treated with TKI's for 15 years and are still living!! I don't want to die by CML. My BCR/ABL was 0.13% and I am anxious to find out the result from May 12th. I believe that I will die of a heart attack or stroke. I don't want to die from CML, it is very painful!!!!!!! Sorry Kat73.

acl

acl

Kat73 is talking about when you aren't taking your Gleevec, Spyrcel, etc.



#12 acl

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Posted 09 June 2016 - 10:40 AM

acl, I'll be anxious to hear the result of your May 12th PCR; and I thought my PCR result was slow in coming (10-17 days).  Post your history when you have a chance .. thx.

Buzzm1, my PCR is very slow coming it takes 36 to 40 days to receive it. I will post my history this evening.

acl


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#13 acl

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Posted 09 June 2016 - 10:46 AM

acl

Kat73 is talking about when you aren't taking your Gleevec, Spyrcel, etc.

 

Gerry, Thanks for the comment. Myself without treatment I probably would not live for more than 8 to 15 months, and I know it would be a very painful death. I hope that our TKI's will continue to work.


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#14 kat73

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Posted 09 June 2016 - 11:01 AM

Ack!!! acl, yes, Gerry is right - I tried to be clear that CML is fatal WITHOUT TREATMENT.  And we have treatment with the TKI's!  And those of us who are experiencing treatment-free remission/response have first reached an undetectable level of CML AND are being closely monitored for any sign of relapse, at which time prior status can be recovered, WITH NEW TREATMENT.  Whew, no.  I was just trying to make the point that treatment in CML is not optional. 

 

Everybody has added such extraordinarily great comments.  Artwoman, are you strengthened?  Let us know your PCR when you get it.


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.


#15 r06ue1

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Posted 09 June 2016 - 12:42 PM

ARTWOMAN, find a drug that works for you at the lowest dosage possible, there is good news coming in the future:  

 

- ABL001 (probably like 5 years away or less unless you can get into the trial)

- Immunotherapy (probably 5+ years away, most likely a cure for CML)

- New drug combination that kills CML stem cells (probably 8+ years away if ever) 

 

And don't give up!


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#16 hannibellemo

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Posted 09 June 2016 - 03:37 PM

Artwoman,

 

I'm glad you reposted here. There are far many more of us who contemplate life and CML and TKIs here then on the community site. We all have had quality of life issues, some far worse than others. I, personally, had few, other than GI, issues with Gleevec until severe liver toxicity sent me to Sprycel.

 

I really hated Sprycel! For 4 months I was pretty sure I was going to die because I just felt so awful and then one day I woke up and I didn't feel so bad and over the next few weeks it got better. I did experience pleural effusion after a couple of years and a consequent ongoing reduction in dose and I still have side effects that cycle through occasionally.

 

One problem is we generally don't look like we're sick and if it isn't in the medical literature some docs think side effects just don't exist. If your onc is like that, get a new one. I think another issue is that some oncs say, "CML, no problem, just take a pill". We aren't prepared for the fact that this is very strong medicine and it isn't probably going to be a piece of cake at the beginning. Another huge issue is oncs who don't see enough CML to be comfortable with the treatment options and are way to quick to pull a switcheroo. Trey is right when he says we have to take a drug long enough so we can work through the side effects and let it do its job.

 

Please understand, it's not that we don't believe you are having the worst reaction to your drugs ever! It's just that many of us felt that way, too, at one time and for most of us, it got better. I hope that's true for you, too! 


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>


#17 acl

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Posted 09 June 2016 - 06:16 PM

acl, I'll be anxious to hear the result of your May 12th PCR; and I thought my PCR result was slow in coming (10-17 days).  Post your history when you have a chance .. thx.

Buzzm1, I was diagnosed with CML March 2014. I have always taken Imatinib. I had a rise in my PCR from 0.11% to 0.13%, soon I will receive my PCR results from May 12th. it takes 30 to 40 days to received it. I take 300 mg. Imatinib (Gleevec) daily. I continue to have side effects, but, I am alive!


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#18 Buzzm1

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Posted 09 June 2016 - 10:22 PM

Buzzm1, I was diagnosed with CML March 2014. I have always taken Imatinib. I had a rise in my PCR from 0.11% to 0.13%, soon I will receive my PCR results from May 12th. it takes 30 to 40 days to received it. I take 300 mg. Imatinib (Gleevec) daily. I continue to have side effects, but, I am alive!

acl, there is essentially no difference between your last two readings, and as you have probably heard before, any single reading has to be weighed against the one before, and the one after ... wishing you the best on the pending result of your May 12th PCR.  There are others here who are on Gleevec 300mg; Antilogical and Crob20 to name a few.  


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


#19 tiredblood

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Posted 09 June 2016 - 10:22 PM

 

 

the Bosulif is your ally against the enemy. 

Kind of reminds me of the irritating grain of sand in the oyster that results in the beautiful pearl.



#20 acl

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Posted 10 June 2016 - 04:06 PM

acl, there is essentially no difference between your last two readings, and as you have probably heard before, any single reading has to be weighed against the one before, and the one after ... wishing you the best on the pending result of your May 12th PCR.  There are others here who are on Gleevec 300mg; Antilogical and Crob20 to name a few.  

Buzzm1, Thank you!

acl


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 





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