8 replies to this topic

[cedespres]

Hello everyone,

 

     Has anyone else had a new cancer come up post dx for cml. The dentist found a growth in my soft pallet and sent me to an ENT surgeon. They operated and removed it for biopsy and it came back malignant for adenoid cystic carcinoma. It is even more rare than cml as only about 1200 cases are reported per year.

 

     I am being told I need to go for radiation treatments 5 days per week for 7 weeks. I had some good news though. My bcr/abl went from 0.014 to 0.0079. I am wondering if anyone knows if the radiation will cause my numbers to go up? (On a side note the ct scan for the new cancer found a "very large pleural effusion in the right thoracic cavity and there is interstitial thickening in the right lung" I am not sure what the lung thing is but if anyone knows please let me know.

 

     Thanks

     Ed

[Sneezy12]

1) Radiation of this type will not affect your CML.

2) Are you on Sprycel?

Regards

Frank

[Trey]

Secondary cancer statistics seem consistent with general population numbers, especially for older CML patients.  But that does not mean we know everything we would like to know about the issue.

 

Radiation will not affect the TKI keeping your CML under control.  You should not need to interrupt drug therapy.

 

You probably need a thoracentesis to remove the fluid from the lung(s).  Since you take Sprycel, that will make the pleural effusion situation worse.  I would switch drugs.

http://www.webmd.com...g/thoracentesis

 

You have previously said you have congestive heart failure, and pleural effusion is part of that.  In fact, that is what the "congestive" means.

 

Because you have pleural effusion, the interstitial thickening in the lung can be caused by pleural effusion. 

Edited by Trey, 10 October 2016 - 09:12 AM.

[ARTWOMAN]

Hello, cedespres. I am so glad that you posted this question. It is one that I have been wondering about lately. I was dx with CML 10-29-15. On third type of TKI at present, bosutinib 100 mg daily. Just saw an urinary oncologist this week for a tumor (not cyst) on the outside of my right kidney. He told me that there is a 30% chance of it being benign, and a 70% chance of it being malignant. I have a kidney biopsy this Monday, on Halloween. Appropriate holiday for such a gruesome procedure!  

 

I will find out the results on 11/8/16 at a follow-up appointment. Will discuss date of surgery to remove it, regardless of it being benign or malignant. Happy Thanksgiving for me! I see my CML oncologist on 11/10/16, and will get my latest PCR result and discuss coordinating surgery issues.

 

What a way to spend the autumn holidays. I am worried, but this is my third go-round now with the possibility of cancer (prior scares with ovarian and a lytic humerus lesion). I am finding that while I am naturally afraid, my levels of fear and anxiety are a little less than one year ago when I was dx with CML. Just a little less, mind you, as no one wants the hear the words "you have cancer," much less a second type concurrently.

 

I think one key to surviving now for me is to stay busy enough to keep my mind from dwelling constantly on my situation. This is hard as I am worried. I am also trying to prep for the biopsy and its aftermath by resting more this weekend and trying to eat consistently as well as manage my TKI side effects. 

 

I hope all is well for you. Take care. ARTWOMAN

 

 

 

[cedespres]

Hello, cedespres. I am so glad that you posted this question. It is one that I have been wondering about lately. I was dx with CML 10-29-15. On third type of TKI at present, bosutinib 100 mg daily. Just saw an urinary oncologist this week for a tumor (not cyst) on the outside of my right kidney. He told me that there is a 30% chance of it being benign, and a 70% chance of it being malignant. I have a kidney biopsy this Monday, on Halloween. Appropriate holiday for such a gruesome procedure!  

 

I will find out the results on 11/8/16 at a follow-up appointment. Will discuss date of surgery to remove it, regardless of it being benign or malignant. Happy Thanksgiving for me! I see my CML oncologist on 11/10/16, and will get my latest PCR result and discuss coordinating surgery issues.

 

What a way to spend the autumn holidays. I am worried, but this is my third go-round now with the possibility of cancer (prior scares with ovarian and a lytic humerus lesion). I am finding that while I am naturally afraid, my levels of fear and anxiety are a little less than one year ago when I was dx with CML. Just a little less, mind you, as no one wants the hear the words "you have cancer," much less a second type concurrently.

 

I think one key to surviving now for me is to stay busy enough to keep my mind from dwelling constantly on my situation. This is hard as I am worried. I am also trying to prep for the biopsy and its aftermath by resting more this weekend and trying to eat consistently as well as manage my TKI side effects. 

 

I hope all is well for you. Take care. ARTWOMAN

Dear Artwoman,

 

So sorry to hear of your kidney tumor. It sounds like you are doing all the right things to prepare for the biopsy plus what comes next. I hope you keep me posted as to what is found. For my new cancer I have had my body mapped and a mask made to wear during radiation. Had a thoracentesis on Wed of this week and they took out 1 liter of fluid from my right chest cavity. Had lots of dental work done on Thurs in preparation for the radiation. I will start radiation on 11/14/16 5 days per week for 7 weeks. There goes Thanksgiving, Christmas, and New Years. Not the best of timing for either of us. Hang in there and let me know how you are progressing.

Ed

[cedespres]

Secondary cancer statistics seem consistent with general population numbers, especially for older CML patients.  But that does not mean we know everything we would like to know about the issue.

 

Radiation will not affect the TKI keeping your CML under control.  You should not need to interrupt drug therapy.

 

You probably need a thoracentesis to remove the fluid from the lung(s).  Since you take Sprycel, that will make the pleural effusion situation worse.  I would switch drugs.

http://www.webmd.com...g/thoracentesis

 

You have previously said you have congestive heart failure, and pleural effusion is part of that.  In fact, that is what the "congestive" means.

 

Because you have pleural effusion, the interstitial thickening in the lung can be caused by pleural effusion. 

Trey,

Thanks for the information. I had my thoracentesis on 10/26 and they took out 1 liter of fluid from my right chest cavity. The biopsy of the fluid was negative so some good news. My cml onc and I are planning to try a drop from 50mg to 20mg of sprycel because my numbers have been so good on this drug. I hope it works as I would prefer not to start another new TKI.

Thanks again,

Ed

[hannibellemo]

Mr. Tee, I'm truly sorry to hear that they don't think surgery got all the cancer. Fortunately, you do have options - but who the hell wants options? We want to be cancer free!

 

Let us know what your x-rays and ultrasound show. Hoping it's a pleural effusion and how weird does that sound!?

 

Thinking about you and keeping you close in my thoughts and prayers.

[hannibellemo]

cedespres and artwoman,

 

Keeping you both close in my thoughts and prayers, too! Cancer really sucks, but your situations are just really unfair!

[Melanie]

Praying for all of you!