A Personal Story of CLL and Secondary Cancer

Lynn is one of those fighting and beating two cancers, both CLL and a secondary lung cancer.

She has kindly permitted me to show how she has been coached by this double whammy.

She speaks to the advantages of the frequent CT scans and also give valuable information about her relatively benign experience of coming off the ibrutinib, also very helpful and encouraging.

Hi Brian,

Of course I follow your posts on various sites as well as your blog.  I think you saw that my end of 2nd cycle CT scan showed me with a right upper lobe and bronchus mass of 2.5 cm.  Biopsy revealed it was a cancer so I went off Ibrutinib and a great NIH surgeon, Dr. David Schrump, removed the upper right lobe and all of the tumor .. clean margins and nothing in the nodes removed, thus allowing me to avoid chemo.

During the first conscious sedation broncoscopy attempt to get a biopsy, the pulmonary doc couldn't get enough cells because of the easy bruising.  I mention this because I had lots of unexplained bruising while on Ibrutinib.  The second fully sedated biopsy didn't have the same bleeding issue and I had been off Ibrutinib for three days when that occurred.

I am VERY grateful I had the CT scan as part of my protocol.  My baseline showed nothing, and it was done in March while this tumor was present in July.  I think the tumor was perking just before I came to NIH and went on the protocol as I had a strange bronchitis with blood and then soon on the Ibrutinub I had lots of coughing with excessive bleeding.  Did the Ibrutinib allow it to bloom faster?  Who knows.  In a way, I'm glad it did so that it could be excised and considered a Stage I non-small cell adenomacarcinoma.  My surgeon said my tumor grew faster than would be expected for that type.

So .. I hope people won't throw out their CT scans.  I'm now a big believer and booster and hope that all should be aware of how important it is to find these secondary cancers.

I'm hopeful to eventually get back on Ibrutinib, one way or another.  It did wonders for me .. I started at 342k wbc and when I went off the drug, was around 114K and my counts kept going down, even after stopping taking it. In two cycles, my CLL marrow went from 80% to 50%. After my surgery and 12 hospital nights (got pneumothorax and had to return to the OR for pleuradesis) the WBC bottomed out at 13k with Hgb at 6.6 so got first ever transfusion of two units.  Now all climbing except for the neuts so have had several neupogen shots and hope tomorrow's CBC will show me out of neutropenic-ville.  Anyway, I'm sharing all this with you as I think it's important that you as both a patient and a thoughtful doctor hear from those of us on the "fringes" of these studies.  I don't think enough has been tracked of those who had to stop taking Ibrutinib and my story certainly is not one of rapidly increasing counts or nodes.  I'll keep you in my loop and love being in yours.

All the best,
Lynn

Here is my response:

Hi Lynn,

Thanks you again for reaching out, staying in touch, and sharing your story.

I am so glad your lung cancer was caught early. In most cancers the paradigm is a quick and aggressive pre-emptive strike, so unlike the hard-to-wrap-your-head-around paradigm for CLL where biding time is the prevailing wisdom .

In my post on secondary cancers, I pointed out that one possible reason for the high prevalence of secondary cancers in CLL is our greater surveillance. Not only CTs, but mammos, PAPs. colonoscopy, PSAs and skin exams find cancers earlier and more often.

Your neutropenia surprises me. That has not been a recurrent issue with ibrutinib or with lung cancer for the matter.

Also your WBC continuing to drop after treatment stopped is not what I have heard from others. Usually what I have heard is that the nodes bounce back up again, sometimes within days, but I haven't heard much about the counts so appreciate your good news.

I would like to share your email on my blog as I believe others would benefit from your experience and counsel.

Would it be OK for me to post your email on my blog?

Thanks and be well.

We are all in this together.

Brian

My last reply suggested that she push hard to restart the ibrutinib as she needed no chemo and has had curative surgery. In effect, she is back to square one dealing with a single cancer.

I am sorry for what she has had to endure, but thankful for her willingness to share her instructive, cautionary, and ultimately upbeat story.

Finally, her idea of sharing the experiences of those that needed to stop their ibrutinib or GS-1101 is brilliant and should be explored. Patients and hematologists alike will need to know and be prepared for what they might expect when the drugs are discontinued. My guess is that the longer that you are on them and the lower the disease burden, the less the rebound. We are just starting to look at these issues in CML with imatinib and the early results are encouraging.

Honestly, for right now I am just so happy to have something that works so well and is so free of side effects, that I don't plan to worry about how to stop for a long long time.