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#1 snowbear

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Posted 13 February 2015 - 02:47 PM

Does anyone know how long it typically takes shortness of breath and chest pain to resolve once starting treatment (Gleevec in my case) ?

 

My blood counts are back to normal, bone pain and body aches have resolved, fatigue has greatly improved, but I still have shortness of breath and sometimes chest pain upon exertion.  My doctor referred me to cardiology and I'm scheduled for a stress test on Monday "just to be sure" that there is nothing wrong with my heart. 

 

CT chest scan and pulmonary function tests have come back normal, so asthma and other lung conditions have been ruled out.  I would just like to think it's the CML and that there is not nothing more wrong with me.



#2 Buzzm1

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Posted 13 February 2015 - 05:52 PM

snowbear,

 

on Gleevec, my extreme fatigue resolved itself when I lowered my dosage to 300mg

 

I can now shower and wash my hair while standing without feeling like collapsing,

 

I never had chest pain

 

Buzz


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


#3 Marnie

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Posted 13 February 2015 - 06:06 PM

Hi,

I have been on Sprycel for the last 9 months and it has not resolved itself for me yet, I am not sure if it ever will. I can barely make it walking up a hill. I have a quarterly appointment with my hematologist next week and I will see it there is any expectation of improvement. It just might be my new reaility.

Have you had a chest x-ray to check for pleural effusion? It is a known side effect of Sprycel. 



#4 Trey

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Posted 13 February 2015 - 08:44 PM

An Xray is a good idea, but not all pleural effusion can be seen.  It could be visible, but maybe not.  Either way it is the likely culprit.



#5 CallMeLucky

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Posted 13 February 2015 - 10:53 PM

I had similar issues early on. I don't want to tell you something that would cause yo to ignore it, but it is possible it is stress related. In my case that seemed to be culprit, all tests were normal. Overtime it let up then sometimes it would come back. Be diligent and get checked out but if tests are showing everything is ok, try to focus on calming your nerves as much as possible. This is still new and the first year after dx I was still feeling a lot of physical stress reactions. Still do!
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%
 

 


#6 pammartin

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Posted 13 February 2015 - 11:48 PM

Although I am going to sound like the broken record, have your doctors check for PH. My only symptoms were shortness of breath, no energy,and I was far enough along that I would occasionally pass out. Farmers National Bank and my car still have damage from one of my airless blackouts. Nothing was ever found on xrays; at my worst my ankles, hands, legs were grossly filled with fluid, I had chest discomfort, racing pulse, and chest pain . The PH was found with a right heart cath 7 months after my initial symptoms began. Sprycel is a great drug, but some of us cannot tolerate it. On a side note, Bosulif is very close to the chemical make up of Sprycel. Dr. Simon, my PH specialist from UPMC Presby has recently ruled out Bosulif because he believes the PH will increase with any med that has similar chemicals markers. Best of luck. I hope you find answers soon.

#7 Billie Murawski

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Posted 13 February 2015 - 11:56 PM

Although I am going to sound like the broken record, have your doctors check for PH. My only symptoms were shortness of breath, no energy,and I was far enough along that I would occasionally pass out. Farmers National Bank and my car still have damage from one of my airless blackouts. Nothing was ever found on xrays; at my worst my ankles, hands, legs were grossly filled with fluid, I had chest discomfort, racing pulse, and chest pain . The PH was found with a right heart cath 7 months after my initial symptoms began. Sprycel is a great drug, but some of us cannot tolerate it. On a side note, Bosulif is very close to the chemical make up of Sprycel. Dr. Simon, my PH specialist from UPMC Presby has recently ruled out Bosulif because he believes the PH will increase with any med that has similar chemicals markers. Best of luck. I hope you find answers soon.

what are you on now Pam?



#8 pammartin

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Posted 14 February 2015 - 02:45 PM

I am taking nothing Billie. The first part of March I will be a year without med. My PCR test can be done anytime now, it has been too frigid for me to go outside.

Guess you could say I am still on hold.

#9 Darlene_Jack

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Posted 17 February 2015 - 09:36 PM

Hi snowbear. Your symptoms sound a lot like what I had. I seen a cardiologist and they discovered I was developing boarder line pulmonary hypertension. I was taken off sprycel and have been off almost 5 months. Unfortunately in the mean time I lost my 0% PCR. I will be starting bosutinib this Thursday. You really need to look into the PH. Just to rule it out. I wish you the best.
One breath at a time

Darlene jack...

#10 snowbear

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Posted 20 February 2015 - 12:12 PM

Since December 2014, I've had a chest xray, CT scan, echocardiogram, pulmonary function test, half dozen EKG's, and a nuclear stress test.

 

The echo did show a pulmonary pressure of 34 and mildly dilated left atrium, but the cardiologist said that anything under 50 is okay. He was not concerned about pulmonary hypertension. 

 

All other tests have come back normal, including the stress test I had earlier this week.

 

I am assuming it's CML related, whether Onc thinks so or not, and hope it improves over time.



#11 snowbear

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Posted 23 February 2015 - 12:15 PM

The lymph nodes in my throat and around my neck are actually getting better since I started Gleevec.  Jaw pain is pretty much gone too.  Abdominal issues have calmed back down and I can eat normally again.  In fact, I've gained a few pounds recently which I'm not too happy about but it's better than being sick.

 

I've been running fevers for a few weeks and I developed a rash over the weekend.  Saw PCP today - he says it's a virus, but not shingles.  No sore throat, no congestion - just feel achy and more tired when the fevers hit.



#12 Gail's

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Posted 23 February 2015 - 02:43 PM

Yuck! I'm sorry you're having this stuff. Hang in there!
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

#13 Darlene_Jack

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Posted 23 February 2015 - 02:45 PM

Well just know you always have people to talk to.  We are all hoping for the best, stay strong


One breath at a time

Darlene jack...

#14 vegasman

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Posted 11 March 2015 - 09:33 PM

I was diagnosed with CLL in 2001, ten years later I started having shortness of breath the doctors thought that it might be my heart. I went thru a very extensive cardio work up with everything coming back normal. In 2013. I spent over a year going to Cedar Sinai Hospital in Los Angeles for a complete Cardio, Pulmonary, and GI Work up. The doctors were at a loss they saw the shortness of breath but every test I had taken came back normal.  It has gotten to the point that when even if I walked, or mild exercise and especially after eating I would be short of breath and it could take up to over an hour to regain my normal breathing pattern. In May of 2013 I started six months of chemo but my breathing became worse, don't think it was from the chemo. After chemo the doctor started me on Cromolyn Sodium which helped for a couple of months then the breathing became worse than before. I  know we do not have the same Leukemia but I have been searching for the past four years for some answers. The doctors here in Las Vegas are at a loss for the cause.

 

 

vegasman



#15 Darlene_Jack

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Posted 12 March 2015 - 07:40 PM

Unfortunately I have no answers. My shortness was due to pulmonary hypertension. Keep researching n hopefully you will get an answer. Hopefully someone on here will see your post n have some suggestions. Best wishes
One breath at a time

Darlene jack...

#16 snowbear

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Posted 28 July 2016 - 12:02 PM

Wow….I just came across this.  The SOB did resolve itself last summer (2015) but came back after an arthritis/lupus flare this past Christmas.  Over the next several months, it gradually got worse until I started getting chest pains.  I went back to the doctor and they had me walk around with an oxygen monitor and it dropped to 84 with movement. At rest, it's in the mid-upper 90's as it should be.  I was sent for a CT scan (normal) and a PFT (one abnormal value, but haven't heard from docs yet), and had an Echo this morning (results by the end of today or tomorrow).  I bought a pulse oximeter/heart rate monitor and my O2 has dropped to the low 80's several times, but always comes right back up once I rest.  My heart rate increases too much, too fast but is normal at rest. 

 

Onc doesn't think it's the Gleevec, but will consider it if everything else comes back normal.  My 18 month BCR-ABL was 1.08% and I am awaiting FISH blood test results. I am mildly anemic, but all the docs don't think it's bad enough to be causing these symptoms. 

 

I'm going to pursue this until somebody figures it out.  I don't even care if they do a heart cath now.  I'm only 45, but with everything else that has happened, nothing would surprise me and not knowing is worse than getting even bad news.



#17 r06ue1

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Posted 28 July 2016 - 01:49 PM

That sounds exactly like the side effects I have at times!!!  That cannot be coincidence!  My Oncologist didn't really believe me either but he has sent me to a Neurologist (all tests came back normal).  

 

I never had this problem prior to Gleevec so it must be the cause.


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


#18 beno

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Posted 29 July 2016 - 08:54 AM

I have shortness of breath also, but as my anemia has improved, so has the shortness of breath so I think that was it for me.


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#19 snowbear

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Posted 29 July 2016 - 03:10 PM

I got the echo report today.  Lung pressure is down from last year, EF is still normal, but it indicated that there is "diminished LV compliance - consider diastolic dysfunction".   My Oncologist was the first to call to refer me to cardiology.  I have seen a cardiologist before when I've had issues with my heart, but they've always gotten better, so I am not followed by one on a regular basis.  Anyways, cardiology can't get me in until September!!  I called Onc's office back to let her know when my appointment was and she is going to call their office and request that a doctor there review my echo report and try to get me in earlier.  

 

I don't know much about diastolic dysfunction other than anything dysfunctional with the heart can't be good.  Google says it's either a form of or precursor to heart failure.  This is just becoming too much.  



#20 winespritzer

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Posted 31 July 2016 - 09:43 PM

Dear Beno,
How did the anemia improve?
Mine is worsening...I thought the breath shortness was high humidity. My onc recommended more exercise and green vegetables. Been on 200mg Sprycel since Jan, 2014. Pcru on 4/2016.
Thnks,
Winespritzer

CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue





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