13 replies to this topic

[Tedsey]

Think I may be developing PE. On dasatinib 100mg 5+ years. Have had lung issues for over a year. Onc hears wheezing, but doesn't want to touch it. Now my lungs are burning and crackling. Having issues with hip pain and major skin sensitivity to a point where touch hurts and bending my knees feels like my skin is ripping off. . Notice this all recently. I can no longer go for runs without extreme lung pain and coughing. All esp. bad when prone. Had trouble keeping up with my husband as he whipped ahead of me with the stroller at Disney World a few weeks ago. My legs felt like lead. As per hem/onc suggestion, I am calling a PCP. She doesn't seem to be I want to touch side effects. Guess I'll have to see if I can get in today. Anybody have these symptoms with PE or on Sprycel? Who took care of it?

[Tedsey]

Think I may be developing PE. On dasatinib 100mg 5+ years. Have had lung issues for over a year. Onc hears wheezing, but doesn't want to touch it. Now my lungs are burning and crackling. Having issues with hip pain and major skin sensitivity to a point where touch hurts and bending my knees feels like my skin is ripping off. . Notice this all recently. I can no longer go for runs without extreme lung pain and coughing. All esp. bad when prone. Had trouble keeping up with my husband as he whipped ahead of me with the stroller at Disney World a few weeks ago. My legs felt like lead. As per hem/onc suggestion, I am calling a PCP. She doesn't seem to want to touch side effects. Guess I'll have to see if I can get in today. Anybody have these symptoms with PE or on Sprycel? Who took care of it?

[Tedsey]

Oops! Sorry! Read second post! Fat fingers!!!! Writing on iPhone.

[Marnie]

Hi, Tedsey. . .my PEs were handled by my regular doc, although the first one wasn't handled well, as she diagnosed it as pneumonia and put me on antibiotics.  When the antibiotics didn't clear things up and I continued to press her about PE (and the new x-rays showed that I only had one working lung) she set up the thoracentesis appt at the hospital. 

 

My second thoracentesis was set up much more quickly, since by then, my doc realized that I knew what I was talking about.

 

Anyway. . .have your PCP take an x-ray and HAVE IT READ BY A RADIOLOGIST. 

 

About the skin issues. . .sounds awful.  Wish I had some suggestions.  I've recently developed the burning skin on the nape of my neck again, and my left ear is scabbing over.  I had hoped that on 50mg I would be over that.  Oh well. . .

 

Good luck and feel better soon. 

 

Marnie

 

PS  I thought that I was developing a third PE and had an x-ray, which showed clear lungs.  I still feel the wheezing and closed-in breathing and have noticed that mostly it comes with stress.  I'm wondering if I've developed some sort of weird stress-related asthma. 

[Trey]

I think you should reduce dosage at this point.  You have been PCRU for 2 years now, so dropping to a "maintenance dosage" would be a good idea on several fronts.

[Tedsey]

Trey,

If only I were continually PCRU (a dream).  I have only been PCRU twice in the last year.  My highest this year was .010.  The lab only reports numbers as <.001.  It never reports zero.  It all seems rather low, but I am usually detectable.  My onc does not believe in lowering dose and won't hear of it.  I almost feel I should cut the 100s in half and see how that goes.  If my numbers go up, I'll confess.  If they stay the same, mums the word.  I am tested promply every 3 months, so I don't think there is much risk here.

[Tedsey]

Hi, Tedsey. . .my PEs were handled by my regular doc, although the first one wasn't handled well, as she diagnosed it as pneumonia and put me on antibiotics.  When the antibiotics didn't clear things up and I continued to press her about PE (and the new x-rays showed that I only had one working lung) she set up the thoracentesis appt at the hospital. 

 

My second thoracentesis was set up much more quickly, since by then, my doc realized that I knew what I was talking about.

 

Anyway. . .have your PCP take an x-ray and HAVE IT READ BY A RADIOLOGIST. 

 

About the skin issues. . .sounds awful.  Wish I had some suggestions.  I've recently developed the burning skin on the nape of my neck again, and my left ear is scabbing over.  I had hoped that on 50mg I would be over that.  Oh well. . .

 

Good luck and feel better soon. 

 

Marnie

 

PS  I thought that I was developing a third PE and had an x-ray, which showed clear lungs.  I still feel the wheezing and closed-in breathing and have noticed that mostly it comes with stress.  I'm wondering if I've developed some sort of weird stress-related asthma. 

Thanks Marnie!  I am going to a walk-in center after I drop off my Kindergartener.  My PCP does not have an x-ray in her office and I just don't want to wait days and run around.  I am sure they will x-ray my chest with no problem at the walk in.  Ironically, my insurance loves these places and will fully cover them. 

[Tedsey]

Marnie also, I hope you are feeling better.  I think you could call the skin sensitivity issue I have as a burning (but only when touched).  I also have the scabbing, bleeding, itching thing all over my legs for years.  So, I think I am able to commiserate with you!  Well, I guess this is all better than a SCT or the thing that comes after life which would be much sooner with no successful drug therapy.  Nevertheless, it is very hard to deal with.  Take care!  Hope your issues get sorted out quickly.

 

Teds

PS Where is the spell check button on this thing!!??!!

[scuba]

Trey,

If only I were continually PCRU (a dream).  I have only been PCRU twice in the last year.  My highest this year was .010.  The lab only reports numbers as <.001.  It never reports zero.  It all seems rather low, but I am usually detectable.  My onc does not believe in lowering dose and won't hear of it.  I almost feel I should cut the 100s in half and see how that goes.  If my numbers go up, I'll confess.  If they stay the same, mums the word.  I am tested promply every 3 months, so I don't think there is much risk here.

 

Teds,

 

http://www.ncbi.nlm....pubmed/20375898

 

RECENT FINDINGS:

The incidence of dasatinib-associated pleural effusions is approximately 20%. A twice-daily dosing regimen was found to significantly correlate with development of effusions, and therefore once-daily dosing is now approved for treatment of chronic myeloid leukemia and acute lymphoblastic leukemia. Dasatinib-associated pleural effusions are generally lymphocyte-predominant exudates. The mechanism of occurrence is unknown but may involve an immune-mediated pathway or off-target inhibition of platelet-derived growth factor receptor, beta polypeptide. Management typically involves dose interruption or reduction, diuretics and short-term corticosteroid therapy.

 

You may have no choice but to cut Sprycel dose significantly or completely in order to resolve the PE and then resume at lower dose to see if the PE doesn't return. But staying at full dose is dangerous if you truly have PE. Your Oncologist should know this. Since you are MMR with PCRU thrown in, you do have a very low risk profile of stopping Sprycel for one month (to resolve the P.E.) and then re-test. But your doctor would have to agree to a one month testing rather than wait 3 months.

[Marnie]

Tedsey . . .  I've been at 50 mg Sprycel for awhile now and maintaining pretty low numbers, though not as low as yours.  My onc has come to the conclusion that for me, the balance of reduced dosage and staying slightly above PCRu is what works.  I'm happy with that. 

 

Your plan of an undercover reduced dosage trial might be a good one, though I think it's better to be honest with your onc so that he/she has a full understanding of what's going on so as to make informed decisions. 

 

Is it time to consider another oncologist?  That's a daunting task.  .   . but sticking with an inflexible doc when you are interested in making some changes would be frustrating.

 

Good luck!

Marnie

[Marnie]

Tedsey. . .no matter where you get the x-ray done. . .HAVE IT READ BY A RADIOLOGIST!!!

[gerry]

Hi Tedsey,

 

Hopefully you can get this sorted, sending positive vibes your way.

[hannibellemo]

Teds,

 

I'm so sorry to hear that you are having this issue after 5 years and all the other side effects you had to deal with over the years. 

 

I agree with Marnie that it is time for a new onc. It is untenable that he/she wouldn't deal with a known Sprycel related issue. I raised the issue of increasing my dose to 70 or 80mgs with my onc last visit and he wants to leave it where it is. He says there is no proof that PCRU is any better than MMR or even CCyR, especially at my stage of the game. He also feels that as the tests get more sensitive, and he thinks they will, fewer of us will find ourselves undetectible anyway.

 

I don't like your oncs rigid stance, you deserve better than that!

 

If you have a PE don't just reduce your dose, stop Sprycel completely until it is fully or at least mostly resolved. I'm not nearly as young as you and I was miserable with my PE, plus I had pleurisy, too.

[Billie Murawski]

Hi Tedsey, I'm so sorry you're having more problems, you can't get a break. We have to make you well for Marnies housewarming

party.

 When I had my pe I had to go to the emergency room,I was afraid it was my heart and I was very short of breath. I messed around with my breathing problems for about 3 or 4 months, I kept blaming it on anxiety, weather, no activity etc. When I bent over I would feel like a thump in my chest it's hard to describe. The first thing they did at the er was a chest x-ray and a cat scan I had no idea what a pe was. They admited  me and later that day a lung doctor drained 2 liters of fluid just from my right lung. I started breathing better right away. That day I was taken off Sprycel for 6 weeks, I was getting a bit nervous about that. My onc sent me to Pittsburg for a second opinion, they both agreed my treatment was going ok. But I had to get a chest x-ray every month for 6 months I'm lucky that there is a cancer center about 10 miles from me. This was 3 years ago and every once in a while when I go for my 3 month check up he'll order a chest x-ray. I'm also on water pills and I think they really help me, If I don't take one for a couple days My nose starts running and I get congestion and an annoying cough.

 Teds, You gotta get a chest x-ray right away and skipping a couple pills won't hurt you.call your pcp if you have to tell him you think you have pneumonia he can't ignore that don't even mention sprycel . love Billie

                                                                                                                                                                                     ps. no exercise until doc says so!!!!!!!!!!!