It was during a bug like this (all you said plus an ear infection) in November of 2025 that a chest x-ray revealed a pleural effusion. What I can't tell you is, was the PE there BEFORE I got sick, or did it develop while I was sick? Nobody suggested treating the PE or stopping the Sprycel either, but coincidentally I was given prednisone for residual fluid in my ears after the 5-day course of antibiotics. The prednisone probably took care of the PE or at least made it better. But I'll never know, since there was no followup. I know better now!
Sprycel vs. Gleevec ~ Pleural Effusion
Started by
chevy flame
, Jan 03 2017 12:00 PM
32 replies to this topic
#21
kat73
-
- Members
-
- 884 posts
Advanced Member
- LocationWashington, DC area
Posted 10 January 2017 - 04:51 PM
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.
#22
kat73
-
- Members
-
- 884 posts
Advanced Member
- LocationWashington, DC area
Posted 10 January 2017 - 05:41 PM
Oops, meant 2015.
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.
#23
Gail's
-
- Members
-
- 634 posts
Advanced Member
Posted 13 January 2017 - 11:39 PM
Thanks, Kat. I feel better since last post. Cough reduced in frequency. Now just brief episodes morning and evening instead of round the clock. No need for X-ray this time s I have no way of knowing if it's pe. Crazy to say,but despite having cancer, my body does a good job of immune response when needed.
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
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
#24
hannibellemo
-
- Members
-
- 728 posts
Advanced Member
- LocationNorth Central Iowa
Posted 14 January 2017 - 09:52 AM
Gail,
Both my 2-year-old granddaughter and my pregnant DIL had (have) the virus you have just experienced. It is very nasty and the coughing from my granddaughter was heartbreaking. Lots of people in our region have had that (north Iowa) so it must be very contagious. Glad you are feeling better now!
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>
#25
jmoorhou
-
- Members
-
- 314 posts
Advanced Member
- LocationOutside of San Francisco
Posted 14 January 2017 - 07:31 PM
If you stay with the Gleevec I have good advice if you have nausea when you take your dose. I was OK on Gleevec for two years before I started getting alot of nausea after I took it with dinner. I read on this site that people wait an hour after your meal to take it. For me that made all the difference because I don't have the bad nausea anymore.
Hope this helps. It does take time to get used to side effects.
Hope this helps. It does take time to get used to side effects.
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
#26
Gail's
-
- Members
-
- 634 posts
Advanced Member
Posted 15 January 2017 - 04:36 AM
My daughter works in the emergency room and told me 65% of people they're seeing with positive tests for the flu had a flu shot. The CDC missed the correct strain this year. The decision on which strains of flu to include in the vaccination comes many, many months prior to the flu season and its their best guess.i had a flu shot right when I was told I should. I felt like I had the flu but since I had no fever I didn't ask for the test. The doc said they would treat it the same whether actual influenza or bad cold. I'm just glad it's resolving!
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
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
#27
chevyflame
-
- Members
-
- 15 posts
Member
Posted 25 January 2017 - 08:13 PM
Update - My oncologist advised stopping Gleevec @ 400mg for three months at today's office visit. We will test BCR/ABL at six weeks and if I'm no longer undectable will need to resume medication. Oncologist may try another TKI but will need EKG monitoring. Concerned about this as I've had a stroke and quadruple bypass surgery in 2012 and a silent heart attack previously. Last resort, may need to pick the TKI with the least amount of side effects.
Is anyone on this blog dealing with cardiac concerns and TKI's?
I had been taking Gleevec for only 40 days which resulted in full body edema, diuretic almost daily, passing 2.5 litres of urine, still having weekly bilateral thorocentesis ( Sprycel side effect) to relieve pleural effusions (1600 ml on left side and 650 ml on right side), insomnia, intermittant mouth sores. Other side effects but don't want to seem too cranky.
Have been undectable since June 2015.
Any and all comments will be cheerfully accepted.
#28
Buzzm1
-
- Members
-
- 972 posts
Advanced Member
- LocationSilicon Valley
Posted 26 January 2017 - 12:37 AM
My oncologist advised stopping Gleevec @ 400mg for three months at today's office visit. We will test BCR/ABL at six weeks and if I'm no longer undectable will need to resume medication.
Have been undetectable since June 2015.
I'll be hoping for the best for you chevyflame ... why not test at three months?
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#29
gerry
-
- Members
-
- 1,035 posts
Advanced Member
Posted 26 January 2017 - 01:04 AM
I would ask for monthly testing in case it returns just to pick it up quickly. If it does come back, I would restart on a lower dosage of Gleevec - 300mg.
#30
gerry
-
- Members
-
- 1,035 posts
Advanced Member
Posted 26 January 2017 - 01:12 AM
I had some fluid retention issues on Gleevec, had to watch things like salt - I never added salt but it is in a lot of processed foods. Alcohol (glass of wine) and summer heat would make it worse. Didn't have the same level of issue as you though. Doc also told me Tasigna was off the table for me as I have evidence of suspected strokes showing in a brain MRI. Good luck with your cessation.
#31
chevyflame
-
- Members
-
- 15 posts
Member
Posted 26 January 2017 - 08:26 AM
Thanks for your post Gerry. My oncologist said we may have to choose the TKI with the least side effects if I become undetectable.
My choice would be back to Sprycel as I was managing for over a year with a catheter and monthly thorocentesis.
When I asked about the cardiac risks with Tasigna the oncologist said it will be monitored with EKG's. I do not want to take any cardiac risk as I've recovered fully from the stroke and heart surgery.
Good luck with your cessation.
#32
chevyflame
-
- Members
-
- 15 posts
Member
Posted 26 January 2017 - 04:28 PM
Buzzm1 My oncologist initially said test at 3 months but wants to keep a close watch. The edema may be complicated by a low (2.5) level of albumin . I'm checking with my nephrologist now as my next appointment is in mid February.
Last year I had a bout of extreme diarrhea and vomiting which caused some issues with my kidneys. Finally got kidney function almost back to normal and don't want to go down that road again.
I think it's a direct side effect from Gleevec. We'll see . . . .
#33
Buzzm1
-
- Members
-
- 972 posts
Advanced Member
- LocationSilicon Valley
Posted 26 January 2017 - 07:12 PM
chevyflame, being that you had been undetectable (since June 2015) for a lengthy period of time before you were recently switched to Gleevec, due to severe pleural effusions caused by Sprycel, I have to question the wisdom of your oncologist to place you on the full dosage of Gleevec (400mg). What dosage of Sprycel were you on before the switch? You are an argument for a greatly reduced dosage regardless of which TKI you are on. Hoping that you will remain undetectable through all of this and be done with TKIs entirely.
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
