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10 Months on Ibrutinib – the Odyssey Continues.

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By Bob Barton – Patient

This is a follow-up to my previous article that was published last November that chronicled my first 30 days on ibrutinib.  If you haven’t read it, you can find it here.

To recap, I started taking Ibrutinib on July 16, 2016 when my CLL had finally taken its toll on my body and my blood counts were very far from normal. I had waited to start any treatment until my son’s baby was born in April and my daughter’s wedding took place in July.

I’m normally 5′-8″ and 160 lbs, but I was down to 138 lbs when I started ibrutinib. The wedding pictures reflect this and in hindsight, I should have started ibrutinib when it was first approved for treatment-naïve CLL patients in March of 2016. My WBC was at it’s zenith at 143,000 while my RBC was 3.5, HGB was 10.4 and my LDH was 733. I was clearly at the end of my “watch and wait” status.

The details of the first 30 days are in the previous article which ended at the point where I was experiencing severe dry eye issues. The eye issues are the one adverse effect that still has me concerned today, but I’ve gone through several of the more common adverse effects too. Briefly, I had one or two days of mild diarrhea, several bouts of heartburn, and my hair has changed slightly. It’s straighter and has become harder to manage until I found some hair products that help. On the bright side, I feel well with little or no bouts of fatigue. Except for the many doctor visits, my life is fairly normal today.

Both my hematologist and my CLL specialist had me start antiviral and antibacterial prophylaxis taking both acyclovir and Bactrim along with the ibrutinib. Apparently, as long as I am on ibrutinib, I will need the antiviral to help ward off shingles and the antibacterial is to help ward off a specific pneumonia that seems to be affecting ibrutinib patients. It felt superfluous because I hadn’t been sick since I was diagnosed 9 years ago – no colds or infections but I’ve read enough to know that antiviral and antibacterial therapy are pretty standard for ibrutinib patients.

Ironically, my annual flu shot got infected with a case of cellulitis. The same thing happened with my Prevnar pneumonia shot several months later. My PCP, Hematologist and CLL expert wondered if they forgot to wipe with alcohol before the shot and I sheepishly had to admit that I hadn’t paid attention. It seems so routine. Now, I ask them to double swab the area.

I was complaining of an ache in my lower right side ribs for some six months before starting ibrutinib and had X-rays taken but nothing was found. Both my hematologist and my CLL expert examined the area but since the X-rays were negative, and the CT scan in June did not show anything, we seemed to agree that it was probably musculoskeletal of some sort.

By November of 2016, 4 months into my treatment, my earlier ocular photosensitivity had normalized but my eyes remained red and irritated. The epithelial corneal sloughing (surface cells of my cornea were shedding away from my cornea) was still occurring but I could see much better. I saw a cornea specialist that claimed that he’d seen a few ibrutinib patients with cornea issues but that my eyes appear to be getting better and I should not have to go off of ibrutinib as I improve.

I saw my CLL specialist in February and, while she feels that I have had a “spectacular” response to ibrutinib, she looked at my eyes and has some concerns since they are so very red all the time. She admits that it is probably related to ibrutinib and my glaucoma issues may also be related. My hematologist agrees.

I stopped taking ibrutinib for two weeks in February with both their blessings, trying to get to the root of my eye problems. I stopped taking it two weeks before my next eye exam. I was disappointed when we could see no improvement in my corneal redness/dry eye syndrome. My eye pressure was about 20 – not great, but since it was highly unstable, we could not make any correlation with the ibrutinib stoppage. During those two weeks, my WBC jumped from 7.9 to 12.6 and my HCT dropped slightly. My LDH jumped from 140 to 250. But they fell into normal range within the next two months.

I saw an ophthalmologist that specializes in dry eye treatments know as LipiFlow® and LipiView®. The LipiView test showed low production of oils but still functioning meibomian glands. We did not pursue the LipiFlow procedure. I got the sense that the doctor wasn’t comfortable with my being on Ibrutinib and was not well versed in its side effects.

The prevailing theory is that too many eye drops for glaucoma and the preservatives they contain are excessively irritating my eyes. And that, along with ibrutinib’s known eye side effects, are essentially exacerbating my corneal issues and other symptoms of dry eye. I just had Selective Laser Trabeculoplasty, or SLT, treatment for my glaucoma in one eye to determine if I can get off some of the glaucoma meds which, in turn may help with the redness/dry eye symptoms. I hope to see improvements in pressure in that eye before seeing my CLL specialist.

Since my glaucoma pressure is very unstable lately, my ophthalmologist has been changing medications trying to stay ahead of it. Sometimes it seems to work but then we see an upward change in pressure the next visit. I looked at my pressure readings over the years (I got them from my records). When I started taking ibrutinib it appears that my eye pressures became unstable within the first month. There seems to be a definite correlation when looking at the numbers and timeline so I’m concerned that I may have to stop Ibrutinib to help my eyes get better.

Well, here I am 10 months after starting ibrutinib and my weight is back to 160 lbs and I’m praying I stop gaining weight. I’ve had to change my eating habits since the cancer is no longer consuming my calories!

I have near normal blood counts. It’s easier to list the abnormal counts because almost all are in the normal range. My platelet count is low which is expected. It is slowly creeping back up from a low of 85 last July to 116 in April. 140 is the minimum limit for normal. Neutrophils rose 10 points between Feb and April where they were 42.2, a mere 8 tenths of a point from normal. Lymphocytes and absolute lymphocytes are still high but moving close to normal. And my LDH is at 144 – normal! When I see numbers like these and the positive direction that they are moving, I worry about the day that I may have to stop taking Ibrutinib.

I really don’t want to take ibrutinib for life. As I mentioned in my last article, my plan is still to hold out until a newer targeted therapy is available. My hematologist suggested that I undergo a Bendamustine-Rituximab chemo regimen and get off ibrutinib for hopefully 3 years or more before I need treatment again. I would prefer to try acalabrutinib to see if the eye issues go away. Six months of BR sounds no more appealing today than it did last year. Unfortunately, I haven’t found a path for ibrutinib patients to move to acalabrutinib. But things are changing quickly in the CLL treatment landscape and I believe I will have more options soon.

That is my planned discussion with my CLL expert at Dana Farber at the end of June. If it is possible to try acalabrutinib, she will know. My eyes continue to be very dry and red. Other adverse effects are minor, including mild constipation for weeks at a time, unusual bruising and bleeding, temporary heart burn, and brittle fingernails. But the eye pressure and dryness are my main concerns as I struggle to get them under control. I’ve been blind in one eye since I was very young so eye issues are something I pay attention to. I simply can’t help it because seeing from one eye is something I get reminded of every day. You don’t get over something like that when every day you are reminded that you don’t have any depth perception – just experience in judging relative distances. As my doctors have said, “your eyesight is very important – more important than ibrutinib.”

Every morning I take the three capsules and a tall glass of water. Every day I wish my CLL would go away. If it weren’t for my eyes I could do this for a long time, but will always be searching for a treatment that will lead me to a point where I stop thinking about my CLL. If my eyes get worse, I will need to go off ibrutinib. So far all the technical papers that I read usually talk about short time between stopping ibrutinib and disease progression. I hope that day never comes.

I hope this description of progress as well as AE symptoms can help even one reader in their decisions with using ibrutinib as a treatment plan for their CLL. Many people are doing well on it and it still seems like the best we have to fight CLL.

As you can see, it is an interesting odyssey that will likely be the journey of our lifetimes going forward.

I wish good health to all.

Bob is a computer technologist having joined the computer industry in 1978 solving mission critical hardware and software computer failures worldwide. He designed and developed computer system solutions and products.  In 2000, Bob was a founding member of a high tech startup that made high speed network switches. As Director of Engineering Operations, he was responsible for facilities management, engineering labs and equipment, Information Technology, Quality Assurance, Customer Support, and product release activities.

In 2003, Bob started his own product design company where he developed and patented the first generation of PowerSURE® Power Failure Safety Lighting wiring devices. Five years later he founded the former PowerSURE Corporation to successfully license his patents and to design additional new products.

Bob holds several patents and has helped others in their intellectual property pursuits. Bob also lectures on product development and marketing at a local technical university. He is currently experimenting with 3D scanning and printing looking for new product and service ideas.

Originally published in The CLL Tribune Q2 2017.