10 replies to this topic

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Am I the only one?

[chriskuo]

No. you are not the only one.

 

If it is related to CML, it should go away when you blood counts return to normal.  However, it may be a side effect of the TKI, in which case, you may have some ongoing effect.

 

I have always had some allergies, but with TKIs, I have increased watering from my eyes and dripping from my nose when I am outside in chilly weather.

[Lucas]

i'm here too, but i have rhinitis

[pammartin]

I seem to have difficulties with my sinus while on a TKI. That being said, I have always had problems. Each of us is different and although we share some side effects we all seem to have others unique to us. I used to blame a lot on the Sprycel, but I am not sure it was always the culprit. I guess we never really know for sure. Hope your run away nose clears up, that can be so annoying!

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It's been going on for more than 8 months probably longer and I am sure the CML has been around for much longer than that.  My Onc told me to take Claritin the stuff just laughed at me.  I did used to take Benadryl regularly (he also suggested that) I stopped some time ago felt like it was a good move but maybe not.  I know the Benadryl works pretty well so I will probably start taking it again.  I don't think it is the meds at all.

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It is very annoying Pam drives me in sane.  Doesn't do it constantly just whenever it wants to no reason necessary.

[lsburris]

No you are not!  Since starting Tasigna last April I have had a constant runny nose.

[chrissy778]

MrsDeeJay, before I was diagnosed I had post nasal drip and a sore throat on and off for almost a year. After I started Gleevec at diagnosis a year and a half ago, it went away probably 6 months in. I had a similar wbc at 229.000 at diagnosis like you did. I look back and I did have symptoms that I ignored, but never would of thought it was CML. I was tired, got short of breath I had this horrible pain in my breast bone so bad if I wore a necklace the pain from the necklace just touching that area was brutal. My Dr told me it was arthritis. I know. That has gone away also. I am on Gleevec and am doing well, like you I wondered what side effects Gleevec would bring. I thought the worse, would I get a horrible rash all over my body, would my finger nails fall out. I cleaned the toilets and bathrooms before taking that first pill waiting for nausea and vomiting I was sure would last for weeks and leave me on the bathroom floor for days. Thankfully I had none of this and I am sure you wont either. I have some stomach pain from gastritis and I thought I might of lost some hair when I was washing it in the beginning but this I am not even sure. You will be tired and want a nap most likely while your body adjust to the medicine the pill will be killing many bad cells to start so I think I read you may be tired from that. But you will feel better in time. Just remember we are here for you and you are not alone. The pill is your friend, think of that every time you take it, that's what I do. It is saving our lives......

[Billie Murawski]

I have had a runny nose since I started on Sprycel. I'm so glad you posted that ,I have to take a water pill and I think that helps me with fluid buildup including a pe. I really notice a difference when I don't take one for a couple days. A pe is a pleural effusion, which is a buildup of fluid around the lungs which is a common side effect of Sprycel.  I had a large pe a couple years ago docs removed 2 liters of fluid from my lung (it's not as bad as it sounds) I was given a shot of happy juice before they did it so I didn't care what they did after that. I was in the hospital 5 days. I was getting short of breath but I blamed it on anxiety, so it was my own fault for not listening to my body usually when you have a very hard time breathing it means something is wrong.(DUH) I was off Sprycel for 6 weeks and my onc had me get a chest x-ray every month for 6 months. Sometimes he has me get one every few months or so.I don't think that's a problem with Gleevac. I'm still on Sprycel but now I know the warning signs. Shortness of breath.

I ignored the signs for 3 months.

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MrsDeeJay, before I was diagnosed I had post nasal drip and a sore throat on and off for almost a year. After I started Gleevec at diagnosis a year and a half ago, it went away probably 6 months in. I had a similar wbc at 229.000 at diagnosis like you did. I look back and I did have symptoms that I ignored, but never would of thought it was CML. I was tired, got short of breath I had this horrible pain in my breast bone so bad if I wore a necklace the pain from the necklace just touching that area was brutal. My Dr told me it was arthritis. I know. That has gone away also. I am on Gleevec and am doing well, like you I wondered what side effects Gleevec would bring. I thought the worse, would I get a horrible rash all over my body, would my finger nails fall out. I cleaned the toilets and bathrooms before taking that first pill waiting for nausea and vomiting I was sure would last for weeks and leave me on the bathroom floor for days. Thankfully I had none of this and I am sure you wont either. I have some stomach pain from gastritis and I thought I might of lost some hair when I was washing it in the beginning but this I am not even sure. You will be tired and want a nap most likely while your body adjust to the medicine the pill will be killing many bad cells to start so I think I read you may be tired from that. But you will feel better in time. Just remember we are here for you and you are not alone. The pill is your friend, think of that every time you take it, that's what I do. It is saving our lives......

Thank you so much for that Chrissy you just made me feel so much better. I have taken it and am laying down. I will just be patient and positive.

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Thanks Billie maybe the Hydera made it worse but it was always there.