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Pleural Effusion on Sprycel

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After 4 years on Sprycel, I have PE. It begun with coughing and shortness of breath when going up the stairs and was confirmed by chest x-ray last week. I stopped Sprycel and took 5 days of Prednisone. I need to do another chest x-ray in a month and when my lungs are clear, I can go back on my treatment. My pcr is below MR4.5 for some time.

My hem-onc discussed several options: back on Sprycel at 80 mg, try Tasigna or try Gleevec. I have at least a month to think about it and right now, I am leaning toward lower Sprycel. If I only have to take “vacation” from Sprycel for a month when I get PE, maybe it is not so bad?

I would really appreciate your input, with your thoughts and especially your own experiences.

Thank you.

Hi.

I was diagnosed around may 2016, and started out with Sprycel 140mg, because I was in chronic but quite advanced phase. Luckily I responded very well, and I almost got to MMR in 6 months, definitely hit it in 9 and am now at almost MMR 4.5. Meanwhile I had a few bouts of PE.

For me PE manifests as shortness of breath, ie, I go out of breath sooner than I should when making some activity (like gardening). The very first time I also experienced some minor pain in my right lower chest.

PE first hit me on dec 2016, quite soon, probably because of the higher dosage. Doctors wanted to get me to MMR as soon as possible, so no drug holiday for me, only furosemide and prednisone. I was x-ray monitored and the prednisone dosage was gradually reduced. PE receded and almost disappeared in a matter of weeks, so no more prednisone. 

PE manifested again a few months later, so when I was 1 year onto therapy my dosage was reduced to the standard 100mg. Again, some prednisone, and it almost went away...

But it came back. Also, I got pericardial effusion, completely asymptomatic. It was revealed in a routine chest ultrasound. Doctor told me it's less common, but basically the same beast. 
So last november, when PCR hit 0,0035 my dosage was reduced to 80mg, after a 3 weeks drug holiday. The drug holiday was great, I hadn't felt that good in years :) When resuming Sprycel I had a couple of rough weeks: the usual headaches that I had when inisially starting out, etc, but luckily at a much lower intensity than before. 

Now I am feeling quite well, no particular side effects, apart from a mild tiredness at evening; but I cannot tell wether a small amount of PE is still there.

When my dosage was last reduced the doctor was considering whether:

- lower Sprycel dosage

- switch to standard dosage Gleevec: less potent, but probably more than enough given my response

Honestly I am happy we went the Sprycel way, PE has been a nuisance and I had other issues, but I love the fact that Sprycel has no interaction with food (apart form the infamous grape), I can take it without worries about nausea etc. Also, a bit scared by a new drug.To be honest, Imatinib is considered far less toxic than Dasatinib, so I believe I should not worry; but the devil you know etc...

If PE is still there, I'd much prefer to try 50mg Sprycel than switching; but of course I am deferring to my hematologist's opinion on this. He's not so keen on dosage reduction, although in American forums I have learned that they are quite routine in the US once one hits MMR 4.5 or undetectable. But of course I trust my doctor more than a forum, so we'll see.

To sum up, we're in the same boat, just wanted to tell a similar experience :)

Good luck to both of us!

Davide

 

Hi, you meant grapefruit, right? not "grape"? 

I' m starting today. Can I take it at the same time as my Allopurinol, would you know?

Karinne,

Your doctor is misinformed. After your PE resolves, you should re-start Sprycel at 20 mg dose - no higher.

Given your terrific MR4.5 - you will almost certainly maintain that level (or no detection) on low does Sprycel.

New data is suggesting that lower dose Sprycel works better than higher dose (counter - intuitive, but so is General Relativity) especially when PE's are involved. At M.D. Anderson they no longer start patients at 100 mg. They start at 50 mg and even that dose they are beginning to think is too high. In addition to killing CML cells, Sprcyel naturally suppresses the immune system (most people don't see this in their blood numbers). The initial high dose of Sprycel is actually counter productive. It prevents the immune system from helpiing out the attack on CML. By lowering starting dose, they found that suppression of immune system is less, attack on CML is more and P.E. chances are greatly reduced.

For what it is worth, I am PCRU and I take 20 mg Sprcyel. You should do the same. If your doctor objects, get a new doctor.

The good news is you are very sensitive to Sprycel which is why it is working so well. I would not change drugs until you try 20 mg and see how that goes. There is no risk in trying the lower dose. If your PCR starts to rise you can always increase dose or switch drugs - but as I wrote above, you are responding very well to Sprycel.

I was diagnosed 6 years ago and was put on Sprycel.  Within 2 weeks I was in the hospital with Congestive heart failure and pneumonia.   When that was cleared I was put on lasiks and that helped.  But over the course of the 8 months I was actually on sprycel I always had PE.  If I  stopped the med for a day they would clear.  I was finally switched to Tasigna.  No PE...   however after 5 years of that I am dealing with some heart issues that may have come from Tasigna use.  I am currently off all TKI drugs as I have been undetectable for 4 years.  I do have new joint pain since stopping though...don't know if it's related.

Good luck

 

Tom

Hi Tom,

The joint pain is related to your stopping Tasigna. It is a withdrawal symptom and will fade in time. It could take several months for that to occur.

Also - keep an eye on your thyroid as TKI's interfere with thyroid function. TKI withdrawal can lead to mild thyroiditis. That also will resolve itself.

Getting off TKI's and remaining PCRU is a great place to be. Unfortunately, there is a bit of pain as you exit.

I wanted to give you all, an update on what happened after my PE. I took a drug vacation for 2 months and during this time my pcr was still below 0.0032%IS. I resumed Sprycel at 50 mg at the beginning of March. So far, so good. My pcr is not going up and is actually going down. And in the meantime, they changed the pcr test that is now sensitive to MR4.7 (0.002%IS).

Concerning my lungs, I had 2 thoracentesis and after the procedure, the effusion was totally gone. But after 2 weeks, the x-ray shows a small residual PE on the right side, back even without taking Sprycel. I waited another month before resuming the drug. The small residual PE seems to be stable now for 4 months. I will have another x-ray after 3 more months (end of September). I have no problem exercising and I feel full of energy. 

My platelets are up (from around 100 with 100mg Sprycel) to 150 with 50mg. My skin feels better and I can tan again. Not that I care about it but I thought that it was odd (and dangerous) that I would burn in the sun when on 100mg.

Thanks to Scuba, I am taking 5000u of Vit D3 and my blood level is 65.8ng/ml.

I sincerely hope that I can stay on 50mg and I thank you all on this forum for your help and encouragements all along my journey with CML. 

Dx : 12/13/13 Sprycel 100mg Platelets around 100
December 2014 pcr = 0.0032%IS
December 2015 pcr = 0.00046%IS
October 2016 pcr = 0.024%IS (increase due to Cranberry Extract)
July 2017 pcr < 0.0032%IS
October 2017 pcr < 0.0032%IS
January 2018 PCRU !!!!!!!!!
February and March < 0.0032%IS (no drug)
June 2018  0.0029%IS (on 50mg)
August 2018 0.0022%IS
next pcr October 2018...

 

 

 

Karinne - For what it's worth, the powers that be are letting me walk around with a very small residual PE (on 20 mg Sprycel) and don't seem worried about it for the future.  I can check in with the pulmonologist if I want to, but there is no formal followup now required.  I am symptom-less, and my PCR seems to be holding steady in the 0.005% IS range after 7 months at 25 or 20 mg dose.

That sounds like a really good outcome. Thanks for following up and letting us know how it went. It's so helpful for other patients to read stories with the follow-up details too!

David

Hi,

where are u being treated? UK? I am on Sprycel now and have terribly dry skin, my doc persistently says that Gleevec would not work any more. I have already taken Bosulif but it killed my skin, so Tasigna is not for me either. In addition to my skin, I I can „feel” Sprycel in my lungs. I would love to come back to Gleevec but it is not refunded in Poland. I wonder what your doc says about returning to Gleevec.
Best regards

 

What were the reasons for you to stop imatinib in the first place. Were you intolerant or resistant? If it was because of intolerance to imatinib, but had less side effects than the other TKIs you have now tried, I am not sure why your doctor has said you would not respond to re-introduction of imatinib. 

Also as Glivec (imatinib) has been replaced by generic imatinib - there are several generic brands that are much cheaper than the original (Novartis) brand- why is it not funded in Poland?

Sandy

Hi, where are you from? Probably from a civilized country, unfortunately I am from Poland. I developed pericardial effusion only after 2 months of sprycel 50mg eveey second day. I am in despair, as due to my skin disease, I cannot take other 2nd line TKIs. I would love to come back to Gleevec, but it is not refunded here and my hematologist says it would not work for sure if I lost  MMR on generic imatinib. From what you have said, your doc prescribed you Gleevec, which was perfect for me. My doctor persistently says it would not be effective any more, and I don’t know what to do. These effusions are so stressful. What did your doc say about resuming Gleevec? Thanks for your reply.

Julia

Hi Julia,

There is data (which I am trying to re-locate) which suggests pleural effusions induced by dasatinib (sprycel) are strongly correlated with enhanced CML response. In other words, your bodies reaction via pleural effusion is actually a signal that CML is more vulnerable to the drug.

What this means is you may not need, at all, the high dose of 50 mg. To you, 50 mg is way over the top leading to pleural effusion. Where some patients need more drug, you need less. In fact, 50 mg is fast becoming the new standard high dose.

My suggestion is for you to work with your doctor - no drug until your pleural effusion resolves and then to re-start on a very low dose (e.g. 20 mg) every other day. And see if you pleural effusion returns. There is a chance it may not and if it doesn't - there is an even better chance your CML will crater in response. There are some patients who have success with only 10 mg. per day or every other day. I achieved TFR on only 20 mg every other day. The fact you are pleural effusion 'vulnerable' may mean you need much less.

Dasatinib is a potent drug. For those whose CML is sensitive to it (as many pleural effusion patients seem to be), low dose may be the way to go.

Just a thought.

Hi scuba

Thanks a lot for your reply. I will talk to my doctor, but you know, all these effusions do not mean much to doctors, especially here in Poland, doctors do not care much. I will try to convince him to 20 mg, every other day  but my mollecular result is 0,06, not sure wheteher such a small dose would be enough.   I feel I should come back to Glivec, which has been confirmed by two foreign professors, but I cannot get it in Poland any more, it is not refunded.
all the best to you

julia