Wondering if I am nuts to cruise for 3 weeks to SE Asia. Just learned xray shows blunted left subphrenic angle,possibly pleural effusion...yuck. Female,
73 on Sprycel 3.6 yrs. at 100 mgs. Now worried I might need med help outside of USA or on Princess line.
Xray was taken to find cml correlation w world trade horror.
Thanks much,
Winespritzer
Cruise 3 weeks to Southeast Asia
Started by
winespritzer
, Sep 30 2017 04:31 PM
41 replies to this topic
#1
winespritzer
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Posted 30 September 2017 - 04:31 PM
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
#2
scuba
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Posted 30 September 2017 - 08:42 PM
What is your PCR level?
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#3
Trey
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Posted 01 October 2017 - 09:26 AM
Your other post said you have been PCRU for 1 1/2 years. You should take a drug break and then restart with lower dosage. If the drug break works out, I would not worry about cruzin' anywhere. Except I would never get on a floating disease bucket cruise ship any time, but that's just me.
#4
winespritzer
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Posted 01 October 2017 - 12:31 PM
Scuba, I hit pcru on 4/16. I saw Dr. Cortes study. I think elderly, presence of hbp, 115 weeks on sprycel,hypercholesteremia, fatigue skin rash and shortness of breath were factors in pe. Guess I hit the jackpot!!
Thnx much. Hope Houston is ok now.
Thnx much. Hope Houston is ok now.
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
#5
winespritzer
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Posted 01 October 2017 - 12:36 PM
Scuba, I hit pcru on 4/16. I saw Dr. Cortes study. I think elderly, presence of hbp, 115 weeks on sprycel,hypercholesteremia, fatigue skin rash and shortness of breath were factors in pe. Guess I hit the jackpot!!
Thnx much. Hope Houston is ok now.
Thnx much. Hope Houston is ok now.
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
#6
Jan0080
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Posted 01 October 2017 - 01:30 PM
I was on Princess Lines on a "re-positioning" cruise from Hawaii to Tahiti. Loved it but the whole ship came down with a bronchial infection. The Maitre D actually died and was put on ice for the balance of the trip. I was sick as a dog in Tahiti and never got off the ship there.
Make the switch to Sloane Kettering. While Dr Mauro is the top spokesperson, almost any of the Drs are great including Ellin Berman. Make an appointment! The Doctor prescribes but you open your mouth and swallow the medicine. Sprycel is said to be 325 times more effective than Imatinib. 20 mg is adequate!
Make the switch to Sloane Kettering. While Dr Mauro is the top spokesperson, almost any of the Drs are great including Ellin Berman. Make an appointment! The Doctor prescribes but you open your mouth and swallow the medicine. Sprycel is said to be 325 times more effective than Imatinib. 20 mg is adequate!
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
#7
winespritzer
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Posted 01 October 2017 - 02:12 PM
Dear Jan,
Incredible..yikes.
Thank you. Horrors...
Yes, need to switch...Sloan Kettering in NJ has Dr. Hamilton who was my 2nd opinion Dr.
So grateful,
Winespritzer
.
Incredible..yikes.
Thank you. Horrors...
Yes, need to switch...Sloan Kettering in NJ has Dr. Hamilton who was my 2nd opinion Dr.
So grateful,
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
#8
scuba
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Posted 01 October 2017 - 05:12 PM
Take Trey's advice if you want. You can easily go 3 weeks with no Sprycel and when you return get a PCR test one week later. Chances are you will remain PCRU. During your three week cruise - chances of a pleural effusion will be greatly reduced by not taking Sprycel. You'll have a good time that way. Alternatively - cut your dose to 20mg. 100 mg for someone in PCRU is wrong.
Regarding Trey's comments that you are embarking on a floating disease bucket. He's correct - but what a way to strengthen your immune system.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#9
winespritzer
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Posted 02 October 2017 - 01:24 PM
Wow, my onc won't go for that. I decided 3 weeks to southeast Asia is too far and too long and cancelled.
Gotta find out what to do to avoid PE.
No germ bucket for us.
Thanks much,
Winespritzer
Gotta find out what to do to avoid PE.
No germ bucket for us.
Thanks much,
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
#10
kat73
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Posted 02 October 2017 - 04:45 PM
Only one way to get rid of a pleural effusion of any significant size - drug break. Period.
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.
#11
scuba
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Posted 02 October 2017 - 06:16 PM
Winespritzer wrote, "Wow, my onc won't go for that."
It's not his or her life is it?
Kat is correct. If you have a concern about P.E. - stop taking Sprycel. Period.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#12
kat73
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Posted 03 October 2017 - 10:23 AM
It's the prescribed protocol for handling pleural effusions as an AE from Sprycel. Scuba, you're better at calling up the literature - you can probably find the latest guidelines for us. Winespritzer, you'll have to get rid of the pleural effusion with a drug break (and maybe thoracentesis) and then try resuming the Sprycel at a lower dosage. You'll have to be checked more often for awhile, with chest x-rays and someone listening to your lungs and, of course, monitoring your PCR.
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.
#13
winespritzer
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Posted 04 October 2017 - 03:10 PM
I saw onc yesterday. He said it is minimal and if it worsens he will lower dose.
Am getting cat scan w contrast for atelectasis...Crap...never smoked..suddenly have copd and emphysema...maybe shortness of breath from that...fumes from world trade center ...I worked nearby???
CRAP
Thank you all.
Am getting cat scan w contrast for atelectasis...Crap...never smoked..suddenly have copd and emphysema...maybe shortness of breath from that...fumes from world trade center ...I worked nearby???
CRAP
Thank you all.
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
#14
winespritzer
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Posted 04 October 2017 - 03:13 PM
I saw onc yesterday. He said it is minimal and if it worsens he will lower dose.
Am getting cat scan w contrast for atelectasis...Crap...never smoked..suddenly have copd and emphysema...maybe shortness of breath from that...fumes from world trade center ...I worked nearby???
CRAP
Thank you all.
Am getting cat scan w contrast for atelectasis...Crap...never smoked..suddenly have copd and emphysema...maybe shortness of breath from that...fumes from world trade center ...I worked nearby???
CRAP
Thank you all.
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
#15
scuba
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Posted 04 October 2017 - 03:40 PM
It's minimal now ... it's going to get worse. Your Onc should have lowered your dose. Waiting until it worsens is not a good idea.
You are PCRU - you can easily - easily afford the time to stop Sprycel (or cut dose) and then monitor every 4 weeks to verify. This is the emerging protocol that top Oncologists follow.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#16
gerry
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Posted 04 October 2017 - 05:01 PM
If you have COPD, why would your doc think it is okay to have a PE, I am amazed by him.
My mother wound up with emphysema from working as a bar attendant and passive smoking for 8 hours a day. Another friend has it as her ex husband was a heavy smoker. Unfortunately you don't need to be a smoker to wind up with. :-(
My mother wound up with emphysema from working as a bar attendant and passive smoking for 8 hours a day. Another friend has it as her ex husband was a heavy smoker. Unfortunately you don't need to be a smoker to wind up with. :-(
#17
kat73
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Posted 04 October 2017 - 06:29 PM
Atelectasis can be caused by the pleural effusion.
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.
#18
hannibellemo
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Posted 08 October 2017 - 07:01 AM
Hi, winespritzer! Many of us ended up with a pleural effusion around the same time period, 2.5 years on 100mg Sprycel. Mine started with just a blunted tip, so mild my onc said I shouldn't even have symptoms. It doesn't take much to notice a change in breathing. Nothing was said about stopping Sprycel and that was a mistake.
3 weeks later I was having serious trouble breathing. I took myself off Sprycel and was off for about 9 weeks. Low dose steroids helped way more than diuretics. Had I stopped right away I would have been much better off.
Most oncs still don't have much experience with CML and our TKIs so don't assume they know what they are talking about, especially when it comes to adverse reactions.
After the pleural effusion COMPLETELY resolved I restarted at 50mg Sprycel. It took awhile to get back to MMR and even longer to get to PCRU but I made it.
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>
#19
winespritzer
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Posted 03 November 2017 - 03:46 PM
It's minimal now ... it's going to get worse. Your Onc should have lowered your dose. Waiting until it worsens is not a good idea.
You are PCRU - you can easily - easily afford the time to stop Sprycel (or cut dose) and then monitor every 4 weeks to verify. This is the emerging protocol that top Oncologists follow.
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
#20
winespritzer
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Posted 03 November 2017 - 03:47 PM
Should have cut dose...onc disbelieved pe was from Sprycel....ugh
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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