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Pleural Effusion

I have had a pleural effusion on Sprycel 50 mgm. It was totally removed and I was taken off the drug. This probably a continuation of the one I had a couple years ago that never went away, however, it was small at that time.

I will be put back on Sprycel unless I advocate for a different drug. Looks like they all cause pleural Effusion. Looking at gleevac and some research says it causes bone loss, while other research says it reserves osteoporosis.

I know Sprycel has some protective factors for bone loss. 

Amy thoughts about the two drugs. I wonder if Sprycel reduced to 25 would work. But it may still cause Effusion at that level too.

i have been basically PCRU since October 2015.

a little scared being off the medication. They are going to do monthly testing.

There is a good chance that you can remain PCRU off drug.

Studies have shown that patients who get pleural effusions have a stronger T-cell response to CML than those who don't and that the P.E. may actually suggest your immune system is enhanced against CML. You should stay off drug one month at a time and track your PCR level. If over six months you show no change (and remain PCRU), you have an excellent chance at treatment free remission. No drug - no CML. If you remain PCRU for the following six months, you would be able to resume testing (drug free) at 3 month intervals. Eventually you will only need to test every six months. At five years of PCRU no drug - you beat CML.

Should your PCR rise - consider resuming Sprycel, but only at a 20 mg level. I take 20 mg Sprycel and am PCRU.

Congratulations. You are going to be PCRU treatment free. I can feel it!

 

 

Scuba,

It is so good to connect with you again. I am am so glad you replied.

My onc has taken me off Sprycel as of yesterday with the plan to test me in a month and do that monthly.

If it does start to return, he may want to go back to 50 mgm. He hasn’t been favorable of 20 due to fear I would develop resistance.

I would want to go back to 20 if I had to go back on it. At that point, I will make an appointment with Dr. Cortez for a consult on my case if I have to. It makes no sense to me to go back to 50 now that I have had this plural effusion.

You have given me hope today. I like what you shared about T cells. I will share that with my doctor. If there is a study I can share with him, let me know. 

Thanks again, Scuba. 

 

 

 

 

I forgot to share that they have done two CT scans of my chest and several chest X-rays over this pleural effusion.

I hope that doesn’t set me back with CML and cessation.

Kali,

Here you go:

https://www.spandidos-publications.com/10.3892/or.2016.5110

https://www.sciencedirect.com/science/article/pii/S2152265016305687

In the second article, Dr. Cortes is the lead author. He is also my doctor who prescribed my 20 mg dasatinib (sprycel).

He is very experienced in P.E. issues and should be a great resource.

Regarding your doctors comment:

"He hasn’t been favorable of 20 due to fear I would develop resistance."

Your doctor is misinformed. Dosing levels and CML resistance are not related. Resistance is a viral/bacterial condition due to an external pathogen/ Cancer is a "self" genetic condition. Mutations leading to CML drug resistance are not caused by too low a drug dose. Drug dosing in CML needs to be customized to the individual. More is not better and less may actually be more effective not less. It makes sense when one realizes that TKI's can often "suppress" our immune system overall (i.e low counts). Getting the dose correct enables both our immune system and the drug to attack CML. This is why we can re-start our TKI's following cessation and in all cases reported regain response.

In the case of P.E. - you have an even better chance of having a terrific response on low dose since your immune system is already quite sensitized.

Lower dose is better if lower dose works. Increasing dose once response is already achieved can lead to a poorer outcome (especially increased side effects). As you are already PCRU - going back on 50 mg dasatnib once your P.E. resolves makes no sense.

You are in a good place to try cessation and test if your body can keep you in remission. Each month you get drug free is a month without toxicity. All TKI's are toxic.

Thank you for the articles. I read them and they are very helpful.

I have had two cat scans of chest and three X-rays this week. I hope that doesn’t mess up my time off the drug.

I will never have a cat scan again.

https://www.health.harvard.edu/staying-healthy/do-ct-scans-cause-cancer

https://www.consumerreports.org/cro/magazine/2015/01/the-surprising-dang...

I had a set of ct scans to monitor a condition that was resolved, but a few years later I developed CML. I have a working theory (my opinion based on reading) that CML doesn't just start from one cell mutating (9;22 chromosome translocation). The body can handle a few cells going bad. But when bombarded with DNA damaging radiation aimed right at our big bones chest and hips - I no doubt developed an instant huge population of CML cells in a short time. My immune system was overwhelmed with bcr-abl protein and told to stand down (T-cell defense stopped). Couple that to the fact my vitamin D level was 17 ng/ml - and I was a walking CML factory with little immune response possible. I was in accelerated phase in no time at diagnosis.

I'm thankful I was able to check the disease and regain a healthy immune system through nutrition and smart dosing of Sprycel - but I will never have a cat scan again. Chest x-ray? maybe - MRI - yes (magnetic, not radiation). Man made radiation is bad.

(granted - if my vitamin D level was high normal back when I had cat scans, I might have avoided CML from cat scan radiation. Having a cat scan does not mean you get leukemia. Just luck of the draw. It depends in part on how much radiation cat scans put out. Calibration of these devices is an issue where unknown high amounts of radiation are possible due to poor maintenance.)

Thanks Scuba for the information. It is very helpful. Hopefully these scans and X-rays I have had this week won’t affect my cessation. I know there is no way to know. That is a little unnerving to think about.

In 2011 while vacationing I also had 3 CT scans within several days to find the source of my 104.3 fever. Even in my febrile state of mind I begged not to be scanned knowing I had been bit by a tick 2 weeks earlier and was certain this was the problem. Was diagnosed with erlichiosis(tick borne) and started on Doxycycline. 6 years later I was diagnosed with CML. I absolutely question if this was the cause. My hematologist feels it would not be enough radiation exposure but I still wonder.

 

 

no doubt in my mind what caused my CML:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4812429/

You suggested 20 mgm Sprycel if PCR rises. Wouldn’t I be likely to have another pleural effusion?

Pleural effusion (PE) is sensitive to Sprycel dose. Where 100 mg or 50 mg will trigger a PE response, there are many cases where lower dose does not. But there is no guarantee. Once a PE episode resolves following a dose cessation. Re-starting at a minimum dose and having success is documented.

https://www.sciencedirect.com/science/article/pii/S2152265016305687

In your case, it just depends on how sensitive your immune system is to Dasatinib triggering a PE event. As the article above by Dr. Cortes points out, managing PE using dose interruption along with re-start on a much lower dose can work. You may find that you achieve a deeper CML response on 20mg because your body's immune system is sensitized. PE results in a T-cell "overkill" response due to Sprycel. I would strongly consider re-starting on 20 mg (after PE has resolved) and test PCR response in 4-6 weeks.

Show your doctor the above paper.

Once the pleural effusion issue is in good shape, would you still consider month to month cessation and testing or just go back to 20 mgm Sprycel considering they have had to do cat scans and X-rays. I know I will have more exrays until this is comfortably resolved.i am going to ask them to forego cat scans if possible and just check it by X-rays.

Kali,

What is your current PCR level?

0.00000 for the last 18 months. Prior to that it was the same since October 2015 with a couple of blips of 0.00069 range.

was diagnosed in June 2014 and MMR in 3 months and stayed MMR for months and then it got even better with PCRU.

I gave too many 0’s. I meant 0.0000

I thought so ...

You are an EXCELLENT candidate to stop Sprycel and likely never see your PCR climb above zero again.

You may very well be 'functionally' cured. The P.E. is an indication that your T-cells are very active and probably eliminated the rest of your CML. As mentioned before, patients who experience pleural effusion also experience a much deeper CML response and remission. Theory is that Sprycel triggers a strong T-cell response (which unfortunately disrupts the pleural lining of the lungs (and potentially the heart).

I would not resume Sprycel at this point and simply monitor your PCR every month to verify no loss of PCRU. Keep in mind false 'positives' can occur - so even if you have a PCR blip upward (i.e. 0.00x), I would still wait another month for a re-test to confirm any trend. Only then would you re-start Sprycel and then only at the 20 mg level (like I am taking).

During your cessation period your P.E. will fully resolve and disappear as your body normalizes (but armed with CML fighting T-cells).

You are actually in a great place. Enjoy treatment free remission!

(note: after six months of PCRU without any TKI, you would no longer need to test monthly - you would move to every 3 months as before). After 5 years of PCRU - treatment free, you would test once a year. Remember - there is no such thing as "resistance" when it comes to TKI's and CML. The ;drug either works or it doesn't and can depend on dose.)

This is great news and thank you for explaining this so well. I hope it works out.

I finally got my vitamin D up to just barely in the normal range. I am continuing to work  on getting it higher. Hopefully that will help too.

 

What dose vitamin D3 are you taking?

4,000 per day sublingual 

Sublingual?

No wonder you are not seeing your vitamin D level rise very much.

Vitamin D is a fat soluble vitamin. It requires digestion form the small intestine with fat in order for it to be absorbed. Sublingual is pointless.

EAT vitamin D3 with food that has fat in it. I take mine with half an avocado or a piece of cheese or a small handful of nuts (almonds).

Also I take 10,000 IU's every other day in winter and 5,000 IU's the other days for a total of 55,000 IU's per week. In summer I take 5,000 IU's per day every day (35,000 per week). If I miss a day (no big deal), I double up the next. This regimen - for me - keeps me around 70 ng/ml. I take vitamin K2 along with D3.

What brand do you take? Is it a gel or pill? Is it small?

The vitamin D3 I take are drops (I didn’t mean sublingual). They are supposed to absorb through your system better. But anyway let me know what type you take. It is worth trying something different.

This is what I take:

https://images-na.ssl-images-amazon.com/images/I/71YbPlEx7PL._SX522_.jpg

One a day in summer (with food).

Two one day in winter followed by one the next day.

I tend to take vitamin D3 in the morning before noon.

Thanks for the information!