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New to Site: Has anyone experienced fluid around the lungs from Sprycel?


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#1 MsMerBenz

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Posted 23 September 2011 - 01:52 AM

Hi everyone...I an new to this site...I was diagnosed with CML February 6, 2004.  I have read the discussion boards off and on for years.  I originally started with Gleevec which put me into remission within 6 months.  In 2007 I became very ill and missed work for 6 months and due to side effects, my hematologist changed my medication to Sprycel.  I felt so much better on Sprycel than I did on Gleevec.  My concern is I was recently hospitalized for pneumonia and pleural effusion in my right lung.  A thoracentesis was performed and they drained 800cc's from my lung (actually from around my lung)...the hospital oncology unit would not dispense my regular dose of Sprycel.  I treat with City of Hope in Duarte, CA and they consulted with them and advised me not to restart treatment with Sprycel until I was able to confer with my hematologist (at COH)...he has been out and is not scheduled to return until September 28, 2011.  I have been to my pulmonologist and he still hears rattling in my lung so I had another x-ray yesterday.  Although the technician couldn't provide me with a diagnosis, she did show me the x-ray on the computer and carefully pointed out how clear the lines were around my left lung and then pointed to my right lung which is NOT clear...I'm thinking there is more fluid.  The pulmonologist told me yesterday that if there is additional fluid, he may want to complete a lung biopsy...Not sure I want to do this but...

CAN ANYONE TELL ME IF THEY HAVE EXPERIENCED THIS TYPE OF ISSUE WHILE TAKING SPRYCEL?  It is one of the serious side effects but want to know what might happen next in regards to treating my CML?  I'm still home recuperating.    Thanks to anyone that can provide me with their experience, knowledge or thoughts!



#2 MACELPatient

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Posted 23 September 2011 - 08:23 AM

Sorry to hear about your side effects.  Pleural Effusion is a known side effect of Sprycel.  It's something that should be moitored.



#3 Trey

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Posted 23 September 2011 - 08:43 AM

Here is a good article about the issue:

http://www.jhoonline.../content/2/1/46

Others will likely give you some info.  In the meantime, if you also search for "pleural effusion sprycel" on this site you will find quite a few discussions about it.



#4 CallMeLucky

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Posted 23 September 2011 - 09:20 AM

With regard to your treatment for CML, given what I have read about others in this situation, I would expect the doctor to possibly lower your dosage of Sprycel, or more likely, switch you to Tasinga.

You have options so I wouldn't get too concerned about the CML getting out of control for you.  With the other drugs available you should be able to keep the CML at bay and eliminate the lung issue.

Best of luck.


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%
 

 


#5 susanlathers

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Posted 23 September 2011 - 11:01 AM

oh, boy can I identify with what you are going through.  I fought PE's for over a year. Eventually I had plueral biopsy which confirmed PE's.  Biopsy was not a minor procedure, very painful, and I wish they had just gone on the  3 thoracentisis to diagnose. I stopped Sprycel after biopsy and effusions went away within couple of weeks and have never returned. Since diagnosis 1/06 I was also not able to achieve PCRU on Glevec or Sprycel so switched to Tasigna 6/10. I was  PCRU within 1 month and  side effects are minimal compared to the other two.

You are at an excellent facility and you are getting great care but I would not mess around trying lower doses of Sprycel especially with that level of PE.  Not when there is a medication you can switch to that is so much better.  The only exception that I know of would be mutations.  I think Sprycel is better on some mutations.

Glad to see someone who lives in my area.  I go to Kaiser Bellflower and live in La Habra.  Any way I can help or just be there, let me know.  My prayers will be with you

Susan



#6 td1961

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Posted 23 September 2011 - 11:55 AM

Yes, I've been there, done that, got the t-shirt! In fact, I have an appointment with my onc this Monday to discuss what I believe will be him switching me over to nilotinib. Not too happy about the idea either because sprycel, other than the PE's, has been wonderful from a side effect standpoint. I've been on 70 mg the past serveral months and the side effects have been drastically reduced from those I experienced taking 100 mg/d. Lately, however, I have been suffering a bit of shortness of breath, dry cough and other symptoms that would have lead me to believe that the problem might be coming back. Then, the other day I seen the announcement one of the other board members put out about Canadian Health warning users to beware of heart related blood pressure issues with Sprycel. Apparently, some small number of people taking sprycel worldwide have died as a result. It remains to be seen whether the FDA places a "black box" warning on sprycel for this reason but I guess it was enough that when I emailed the warning to my doctor, he said "we're going to be doing something different when you come in next time." I just wish that bosutinib was approved because I have heard it has the least number of side effects of all of the TKIs invented to date. I'm looking forward to that! So, since the handwritings on the wall, I guess its time to embrace the new meds because there isn't many other choices. The twice daily nilotinib dosing regimen is not going to be much fun! If its anything like gleevec, the food was the only thing keeping the stuff down! Maybe other nilotinib users could give us newbies a "short course" on what to expect from the standpoint of common side effects and how you deal with no eating before and after taking the meds and how to space them 12 hours apart? TracyD in Colorado.



#7 susanlathers

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Posted 23 September 2011 - 01:32 PM

Ah, yes, I wasn't going to say any thing about the dosing of Tasigna, hoping others don't have the same problems with it as I do.  The worst side effect of Tasigna for me was high blood sugar levels.  I have done everything I can to stay out of the diabetes range and the best I can do is just hoover right around unacceptable to "we'll give it another month, see what you can do".  I DO NOT  want to add diabetes to my ever growing list of ailments.  The second worst thing about Tasigna is the dosing, twice a day and the no food 2 hrs before taking and I to 2 hrs after taking (some people do 1 hr).  I still fear the heart problems even tho in 1 1/2 yrs I have had no problems.    It seems the possibility never goes away.  If you take Tasigna with food you get a larger dose of the med and that is what causes the heart arrhythmia's. Frequent EKG's in the beginning give some comfort.  Some people have had problems with blood counts going crazy, headaches (in the beginning), hair follicles especially on the head becoming like giant, painful zits, dry skin, sleep difficulty (napping is out for me) others are very tired.  I have had all of these come and go but mostly gone now except for the insomnia and my over all feelings is that Tasigna has the least, or most tolerable, side effects. Although, I would try something else if it were out there because of the dosing and the blood sugar.

  I have noticed that fewer and fewer people who are taking Tasigna post on these boards any more.  Unless something else has happened to them I think it speaks to how well it is tolerated and how well it works toward getting one to PCRU.

  My best wishes that it will work that well for you



#8 td1961

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Posted 23 September 2011 - 02:48 PM

Hi Susan,

It sounds like I'm between the devil and the deep blue sea on this... I have or had the underground zits, dry skin, insomnia, headaches, fatigue, gasorama, blah blah blah on sprycel so that sounds all the same to me. My blood sugar levels are already high! Maybe I can blame it on the new meds! Har! How about the stomach issues? Any heartburn or gerd like with gleevec? Sharts? Fragile skin? Bone and joint pain? Neuropathy? Vision issues? Facial edema? Geez, oh what fun?! Are you on 600 or 800 mg/d? I had heard that 600 mg/d is just as effective as 800 mg/d with less side effects? And Susan, about how long did it take before the inital onset side effects tailed off? I know the first six months were the worst for sprycel. Gleevec on other hand, they just stayed hanging on the balance of the time, rotating through weekly like biorhythms with the constant being fragile skin and CRAMPS. I used to keep the bandaid suppliers in business back then! On last thing, speaking of the dreaded cramps? Don't say that's coming back too?! Just when I thought it was safe to go in the pool!

TracyD



#9 susanlathers

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Posted 23 September 2011 - 04:01 PM

Quite a list.  I do remember most of that from Sprycel, Glevec was worse

     1.Cramps were awful on Sprycel Once in a while I will have one on T. but calcium every day takes care of it.

     2. Facial edema is GONE.

     3.  Stomach/heart burn no problem. Taking T on an empty stomach (which you have to) does not cause stomach upset

     4.  Fragile skin. Yes, but that may be due to age also.  Not really a problem.

     5.  Joint pain.  Only where I know I already have arthritis. I'm 70 yrs old

     6.  Vision - not that I'm aware of

     7.  Neuropathy - no, but then I never had it on the others

I started out on 800 mg because I had not been able to achieve PCRU in 4 yrs.  Because of that onc wanted to see 1 yr worth of PCRU before she would ok 600. I dropped to 600 in 7/11.  I will find out in Oct whether I have been able to maintain it. I have heard of other people starting at 600.  My goal was to go to lowest dose possible but I have a very hard time forgetting to take it on time ( after 1 yr doing 4 pm and 4 am I decided I was tired of getting up to an alarm at 4 am and I went to 11 am and 11 pm)  Changing times has caused me to miss too many doses so, if I am still PCRU, I think I would rather stay on 600 and be able to miss doses than go to 400 but strictly adhere to 2 doses a day.  I have been told by several people on this sight that missing doses is NOT something you want to get in the habit of doing, most people are very diligent about taking their meds.  I was diligent  at first but I am having a bit of an attitude problem the last few months. I feel like, I'm always aware of when do I need to take it, be sure not to forget and eat and no I can't go out to eat with you, I have to take these pills feels like it is running my life, never out of my mind. As I said in my last post, not many on T write in here so it appears others do not have these issues, it is probably something unique to me and does not have to be your experience.  We have to remember that without these miracle meds we would not be alive today.  I have outlived my life span with CML only because of this little pill and should not grumble about it.

  Hope I have encouraged and not discouraged you.  Really, T is far superior in most aspects for a lot of people.



#10 MsMerBenz

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Posted 24 September 2011 - 02:20 AM

Thank you to all that responded to my question.  Susan...thank you for the input on possible side effects of Tasignia.  I'm not sure what my hematologist will do but hope to find out soon.

Trey...amazing resources...thank you so much! 

I will certainly come to this site more often for support!   

Paula



#11 td1961

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Posted 27 September 2011 - 09:35 AM

Thanks Susan for all the great info on Tasigna. It sounds encouraging. Well, my appointment yesterday was somewhat of a surprise! My onc left me on sprycel at 50 mg/d and will check pcr in 3 months. He said if I was worried about the heart issues he'd order a dopler imaging of the heart so I am scheduled for that next Monday. They did find my BP abnormally high and I think its because of nasal decongestants I've been taking for hay fever. They're a no no after 3 days!  I'm guilty! They were more worried about that than anything else and I guess having a stroke would be worse than CML! Thanks again! TracyD






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