39 replies to this topic

[Billie Murawski]

MLK, My situation was the same as Marnies. I had trouble breathing x-ray showed pe the doc drained 2 liters of fluid from my right lung. I was on 100mg Sprycel he took me off Sprycel for 6 weeks then started med back on 50mg. He does a lot of chest x-rays on me just to make sure it's still under control. I have to take a water pill every day 20mg. lasix. I'm now down to 20 mg Sprycel and I have been undetectable for 5 years now. I just had bw yesterday for pcr. I still get a bit nervous until I get my results. Billie

[Buzzm1]

I'm now down to 20 mg Sprycel and I have been undetectable for 5 years now. I just had bw yesterday for pcr. I still get a bit nervous until I get my results. Billie

Billie, ever think about discontinuing the TKI to see if you remain undetectable?  The odds are basically 50/50 and if you make it through the first six months, the odds are heavily in your favor.

 

Buzz

[Dona_B]

Has anyone recovered from Pleural Effusion without medical care?  I don't know if I have P. E. or what. My main symptom is a cough with a side of more fatigue and a little shortness of breath. I took myself off 80 mg Sprycel since I can't get into the doctor until Thursday but took one last night to make my husband feel better. I've been taking a Benadryl a day for a week and one or two randomly a week for longer than that. The reason I think it might be P. E. is because I cough mainly after eating or drinking. I don't like unnecessary prescriptions, or tests nor can I afford them. I'm hoping I can take care of this on my own with green tea and other natural diuretics and cancel the appointment.

 

Like many others here, I have added a few supplements like Vitamin D3, a turmeric curcumin pill, and an essential oils once in a while. A pea protein powder with various add-ins but that has not lasted long. Calories from solids taste so much better.

 

Btw, thank you LLS for the arcives and search feature. I made good use of them before posting.

[Trey]

Most patients do not need to have the fluid drained, so in a sense that is not intervention.  But a drug break is usually a good idea and resolves the issues in most cases, either for a while or for longer term.  The only real way to know if you have PE and how bad is to have a chest xray, and that is the recommended approach.

 

If you must do a self treatment, then a drug break of 2 weeks is what the Onc should recommend anyway.  You just achieved MMR, so a break would not significantly change your response status, although it would likely change somewhat. 

[Dona_B]

Thank you, Trey!

[mlk210]

Dona, my onc did nothing but give me a drug break. The ER doc said he was going to admit me, but my oncologist said just go off the medicine. After three weeks I started back on Sprycel on a lower dose. I thought another PE was coming a couple weeks ago, but my symptoms went away. I never had the cough, except when laying down on occasion. My biggest symptom was the shortness of breath with any type of walking distance. By walking up the stairs, I'd have to stop and catch my breath before continuing down the hall.

[kat73]

Dona et al - I've had two discovered pleural effusions but my onc never even considered a drug break.  They were discovered by accident on chest x-ray, and one must have resolved (with no intervention or drug break) because of another chest x-ray later that didn't show it.  The next one, also discovered on chest x-ray (yeah, I know - too many chest x-rays within a couple of years for my taste) got another "meh" and so I don't even know if it's gone or not.  Trouble is, I don't have symptoms that register, even with me.  I'm not short of breath, but then I don't move much because I'm so tired all the time.  The scale doesn't seem to budge and doesn't accord with what I'm eating - I'm extremely experienced in this regard - I know from calories! - and so I'm suspicious of fluid being the culprit.  My face and eyes are perennially puffy, but nowhere else I can see.  So, internally???!!?

[chriskuo]

Are you taking a diuretic?

[Dona_B]

Kat, I hear you on the fatigue and scale. Then there is the bloating and weight gain. I lost five pounds a couple weeks ago and put it back on practically overnight. It's embarrassing to say I've gained 40 pounds since I was diagnosed two years ago. It's gotta stop.

 

Chriskuo, no. I've been trying tea, even though I think it lead to toxicity when I was on a higher dose of Sprycel. Going to try to up my water intake again. Hopefully it won't lead to more coughing.

[kat73]

Dona_B - I hope you didn't cancel tomorrow's doctor's appointment.  That is where I think you should take all your questions and anxieties.  Tell him all the things you're taking or trying.  Maybe ask for a chest x-ray?  You really do need to take your symptoms to a doctor - in the long run it's gotta be worth it.  Otherwise you just wonder and kind of make yourself worse, you know?

[hannibellemo]

Pleural effusions are nothing to sneeze at (no pun intended). They can be serious. Even though mine barely blunted the tip of my right lung (it was so small my onc didn't understand why I even had any symptoms) I was very short of breath at times and others, not so much. I think the fluid level in the pleura would ebb and flow. I didn't stop Sprycel  and that was a huge mistake. The PE went from very minor to a very large PE plus pleuresy in only two weeks.

 

I took a couple of courses of steroids; I highly recommend those. Forget the diuretics, there is some thought that this is an autoimmune response and that was the case with me, diureetics were a complete waste. I did end up having the a thoracentesis and that offered some relief. I was off Sprycel for 9 weeks, restarted at 50mg and never looked back. 

 

Well, I looked back once when I was concerned it was re-occurring, but it didn't. 

 

I wouldn't mess around with much self-healing, you could end up much worse than if you bit the bullet and visited the doc.

 

Also, be aware that for some there may be no amount of Sprycel one can take without ending up with a PE. That doesn't happen often, but if it does it's time to move on to another TKI.

 

Mine started just before Marnie, we were both at the 2.5 year mark, it's been 4 years since I reduced my dosage and it did take longer for me to regain MMR but last year I was PCRU for the first time.

 

Good luck!

[pammartin]

Just because I experienced it, if nothing else can be found with the PE, talk with your doctor about PH\pulmonary hypertension. I had a mild case of PE while on 100mg of Sprycel but continued to become excessively tired and short of breath. I was in and out of ER, saw PCP, and had many tests. When I began passing out I thought I needed vitamins because I have never been great at eating healthy or on a regular basis. The night of my son's graduation I passed out twice before getting in the building and I barely remember seeing him or the ceremony. The next morning I had a ride to ER via ambulance. Even then I showed a small amount of PE but nothing else. I was transfered to another hospital and put in ICU. The specialists from the heart and lung department were called in and within hours the severe pulmonary hypertension was found. No one ever did an Echo cardiogram before. After that I had right heart catheterization and my diagnosis is confirmed. My internal pressures were very high and I was transferred to Pittsburgh Presbyterian Hospital to Dr Mark Simon a PH specialist. PH can only be found by an Echo or right heart catheterization, and those are not on the usual testing list when looking for answers. Especially if nothing else leads in that direction.

My main point in all of my boring history is to keep pushing if you are not getting results. Change doctors, seek second opinions, request testing, and be your own self advocate. I had several pretty good doctors working with me at first and they came up empty with solutions. I would rather post this and risk the repetitive annoyance than have someone not know they are extremely ill from a serious disease. Please keep pushing for answers, no one knows your body or how you really feel but you.

[Dona_B]

Thank you all so much for your input. I don't know what we would do without each other and this resource.

 

Wow, Pam. So now I guess you have regular cardiologist visits or is the situation resolved? CML is certainly not a "cheap" illness.

 

I did keep my appointment and had a chest ex-ray following the doctor appointment but may not have results until Monday. I think whatever it was be it a cold or PE and my self-treatment may have cleared it up but we'll see. My husband and I definitely need to rethink changing doctors. Our family doctor's little part-time job as Chief of Medicine at the hospital combined with his colleague leaving makes it real difficult to get timely medical care.   Thank you for your concern.

[pammartin]

Wow, Pam. So now I guess you have regular cardiologist visits or is the situation resolved? CML is certainly not a "cheap" illness.

 

 I see Dr. Simon every three or four months.  My PH is a challenging disease, more so for me than the CML has ever been.  Keeping internal pressures down is something one cannot monitor alone or sometimes have control over.  I consider myself very lucky with a few Angels hanging around to pick up the pieces. 

 

Just be proactive in your treatment and know your body.  And even if medical people tell you there is nothing wrong but you feel there is, keep trying to find answers.  I thought I was getting older and short of breath and lazy.  Although all of those are true, one usually doesn't fall apart in a few months without a reason.  During the time before I was diagnosed, I drove my car into a pole at the drive through bank two times in a few minutes, fell down our steps because I passed out, and several other things I won't go on about.  Not only did I have someone looking over me, someone was looking over all the people I put in danger also because I was sick and didn't know it.  I am not sure I will ever forget that.

 

I am glad you are feeling better.  That is the best news.  Changing doctors always sounds difficult.  Because of insurance and personal differences I have been to 4 oncologists and this month I will be seeing yet another new one because once again Cleveland Clinic is no longer covered by my BC/BS platinum coverage.  I made the appointment the first of January and have spent the weeks getting all my records transferred to Pittsburgh.  At least when I get down there they will have some idea of my current status and history.

 

Best of luck to you and your journey. 

[Gail's]

Pam, I am so sorry for your rough time with PH. It's not enough that you have cml!! Is the PH caused by your meds? I'm also sorry for all the dr changes you've gone thru. It's hard starting over, re telling your story again & again.

[pammartin]

Pam, I am so sorry for your rough time with PH. It's not enough that you have cml!! Is the PH caused by your meds? I'm also sorry for all the dr changes you've gone thru. It's hard starting over, re telling your story again & again.

Because I have no other problems with my heart or lungs, it was decided Sprycel was the cause.  I am in a few studies Dr. Simon is conducting for PH research.  I began Sprycel in October of 2011 and I believe November of the same year the first official warning came out concerning the possibility of PH with Sprycel.  It is rare, but a possibility. 

 

Changing oncologists is not nearly as difficult as it once was, I have learned to schedule the new appointment at least 6-8 weeks in advance so those records are all forwarded to the new oncologist.  They usually have my basics plugged in and previous test results.  Of course now that I stated it was not so bad I will arrive in Pittsburgh to find a rats nest of a mess.  Murphy's Law.

[tommy23]

I was on sprycel from my diagnosis in April 2012 until De. of 2012.  I progressed nicely down the bcr-abl scale.  The only problem was that I could not breathe. 

After the first 2 weeks on sprycel I was sent to the ER with congestive heart failure and pneumonia.  I was started on lasix and potassium.  That helped but I still had PE.  By November. I had to stop for a few days just to ensure I had the breath to do some work I had.   I went back on 3 days later and the PE resumed.  Finally I had enough and stopped the drug and called the Onc.  After a 2 week break I was put on Tasigna.   There are still side effects but very few and not life altering.

[pammartin]

Sprycel is a great drug for many, but some of us cannot tolerate it even in lower doses. Glad the Tasigna worked for you with minimal side effects. Best revenge to this disease is living life.

[Dona_B]

Pam,

Hope your oncologist transition is a smooth one, they are knowledgeable, listen, and partner with you. Also hope you will be able to stay with this one for awhile.

 

Btw, the only thing that showed up on my chest x-ray was a mild case of scoleosis which I already knew.

 

Thanks everyone for your help.

[pammartin]

Glad you found answers. Take care