I think I read it here..

[luckyackerl]

Memory jog please. I have non specific interstitial pneumonitis and C.L.L.. Last haematology visit resulted in my being told treatment likely soon. I think I read on this site some treatments not appropriate with lung disease. Any info please...great site for this kind of stuff! Thanks.

[PaulaS Volunteer]

Hi Luckyackeri,

Sorry to hear you'll probably need treatment soon. Also sorry to hear about your interstitial pneumonitis. I've heard that Idelalisib can cause pneumonitis, so that's probably one to avoid. Idelalisib isn't usually given as a first treatment though - plenty of other options. Has your doctor suggested which treatments might be best for you?

Best wishes,

Paula

[luckyackerl in reply to PaulaS]

Hi Paula,

Thanks for prompt reply and info, much appreciated. Treatment to be discussed at next appt following bone marrow tests, scan and genetic testing. I told him that I thought pneumonitis might contra indicate some treatment to which he replied "oops, I had forgotten that!". Confidence building not! Appt end of June, will keep posting..

Thanks again

Joyce (aka Luckyackerl)

[Jomary8505]

Good morning,

I am just wondering if they ever thought the two could be related in some way. Prior to my diagnosis I had a chronic inflammation in my right lung only. I also had an elevated heart rate anywhere from 100-115. Doctor did some testing-pulmonary lung function, bloodwork but everything was always normal. Eventually I had an ultrasound for abdominal pain which showed enlarged lymph nodes-still doctors not really concerned as could be due to infection. Then enlargement of lymph nodes in neck (I started to look like a chipmunk getting ready for winter). A biopsy detected CLL and about 15 months later, I started treatment with FCR. During treatment my lung cleared up (nodules were also found on CAT scan) and my heart rate went back to normal 70-75. I feel that both were related to the CLL. I hope that should you need treatment, you too may see improvement in your lung issues. Just a possibility- Good Luck.

JoMary

[luckyackerl in reply to Jomary8505]

Thanks JoMary, that is a good reason to look forward to treatment! Have been told pneumonitis possibly due to previous infections picked up through lowered immunity, but no certainty as to cause. Also reaching chipmunk phase, most uncomfortable, but seems to flare up then decrease slightly....hey ho, another reason to welcome treatment. Glad it worked so well for you. Thanks for your reply, its been most encouraging.

Stay well.

Joyce (aka Luckyackerl)