Cycle 2, Day 1 – AKA Trip 4 to Columbus

[thompsonellen]

The latest installment of my OSU Obin/Ibrutinib/Venetoclax trial adventures...

Last week was just a test week, so there was nothing new to report. However, today marked the beginning of cycle 2 of 14 of my clinical trial. As I said to Stephanie, my nurse at OSU, 1 down, 13 to go. Thankfully, Cycle 1 was uneventful except for the during the first obinutuzumab infusion and even that was very minor. My energy was very good throughout the month, and my life proceeded as usual.

Today they started me on ibrutinib (Imbruvica is the brand name), the second med out of 3, and the one the doc at Penn wanted to put me on exclusively back in March. It’s a once a day 3 pill regimen, and a monthly supply retails for about $8000. I’m very lucky to have a copay of only $10 a month (and the other meds are provided by the drug companies for free because they aren’t approved). If I had taken it as a single agent (one med therapy), I would have take it forever until it didn’t work, and the more I have read since I got my second opinion in March, the more it is obvious I would have likely relapsed pretty quickly given my high risk factors. During this trial, I take it for 13 months and then stop. The hope is this treatment will cure some people, and short of that provide a durable, med-free remission.

The pharmacist went over the potential list of ibrutinib’s side effects, which is pretty extensive. The ones they kept emphasizing again and again were bleeding and bruising, though I am move concerned about atrial fibrillation (which affects 10% of people). If you are that curious, you can google side effects ibrutinib. Just plan about 3 solid minutes to read them all. Long story short, I might be completely fine or I might feel pretty bad. As usual, I’m not planning on the worst result but I also must get this itchy rash under control. The last thing I need is to get and infection or bleed out thanks to scratching.

The numbers continue to move in the right direction (this week/2 weeks ago)

White BC (13.4/17.9)

Red BC (3.33/3.27)

Hemoglobin (9.9/9.7)

Platelets (158/175)

Absolute Lymphocyte Count (10.18/11.8)

Thankfully, I’m allowed to get blood drawn locally and avoid the trip to Columbus when it’s just a test week. Last week was a test week as are the next three weeks. I don’t need to return until August 9. However, that’s when we start the third drug, Venetoclax, which is the one that really can do you in. I have to stay overnight (as an outpatient) for testing to make sure I don’t suffer from tumor lysis, which can happen if too many cancer cells flood the blood stream. They try to avoid this by keeping you very well targeting and by starting with the other two meds to take care of some of the tumor load.

Although it’s been the right decision for me, participating in a clinical trial that requires travel isn’t for the faint of heart. I’ve had one of my two flight segments canceled each of the three times I went to Columbus. This time, my flight out was cancelled, and I ended up getting to my room at 1 am. I was wound up and couldn’t sleep which wasn’t handy because I needed to be at the hospital by 7:15. I’m hoping my flights in August are a little less dramatic.

That’s it for now. Let me know if you have any questions.

[SandiC]

I am rooting for you

[tekusa]

The travel sounds difficult. That is with canceled / delayed flights. Keep working at it and good luck!

[terryI_uk]

Good luck with your trial, hope you don't suffer too badly with side effects, shame about travel problems though, fingers crossed August flights will be no problem, best wishes, Terry

[francc]

I understand fully the flight issues. Last year two of my Delta flights from (NIH) D.C. to Atlanta were cancelled and this year one was delayed several hours. Once a year we drive there for two days of tests. We just make a small vacation of the trip to see different sites there and along the way, and of course there is so much to do in, and around, the nation's capitol. I am hoping to be in the trial long enough to have seen all there is to see. ;o) Best of luck with the trial and travel. Hope to read more of your progress. Fran

[virdieblue]

I'm finishing week 2 of Ibrutinib. So far my only side effects seem to be some mild fatigue and the feeling I have a marshmallow in my head. (NOT on the side effects list)

My leg joints hurt a little but I am hoping that's just age.

My lymph nodes are going down and an astonishing rate! I have my first blood draw since starting treatment today.

Virginia

[thompsonellen in reply to virdieblue]

Great feedback. I was wondering what the timeline would be to start experiencing side effects. Hopefully yours diminish with time.

[virdieblue in reply to thompsonellen]

I asked the pharmacist at the cancer center. He said the would diminish.

[CLLCalifornia-USA]

You're one strong woman! Hope everything continues to go well for you. I hate flying so the stress of cancelled flights would do me in. I fly quite often but don't enjoy it. Best of luck. Sally

[mnmnewtons]

I have CLL with chromosome 17 deletion and I improved significantly on ibrutinib. But at about 5 weeks I noticed small red dots on my hand which slowly progressed to form an painful non itching rash all over my body from the neck down. I also experienced extreme muscle fatigue and it became difficult to walk. Those are not the most discussed possible side effects. Maybe if the side effects were diagnosed and treated earlier, I could have stayed on the ibrutinib. However, I transitioned to idelalisib (and Rituxan infusions) with positive results. Hope all goes well with you in the trial. From all I have read, those are 3 really good drugs. Keep us posted on your progress.

[thompsonellen in reply to mnmnewtons]

Sounds awful. I'd hate having another rash on top of this one, and muscle fatigue is one of my big fears. I hope you are doing well now.

[casanova]

So pleased that despite the awful travel problems the treatment is going well, I hope you cope as well with the Venetoclax. I hate rashes and muscle fatigue does not sound good, I trust you avoid both.

I haven't heard of the combination you are undertaking so am interested in following your progress. I am due to have a discussion on "what next" at my next consultation this month as previous chemotherapy treatments have not been successful in giving me a lasting remission. I did mentioned Venetoclax at my last hospital appointment but understood this may be an option but only if Ibrutinib and/or Idelalisib had failed. I think these are the two options I will be given at my next appointment, probably combined with another therapy.

Good luck and I look forward to learning more of your journey. Take care.

Maureen

[thompsonellen in reply to casanova]

I start venetoclax next Tuesday (this is my third week off of travel). I need to do it as an inpatient. I'm not looking forward to the hospital stay, but with bulky lymph nodes, they want to stay on top of me.

I've had a rash for 6 months and leg cramps thanks to figure skating once in a while for years. But at least the rash isn't getting worse!

[Justasheet1 in reply to thompsonellen]

Great news. Keep the good news coming!🎉

Jeff

[casanova]

Sorry you've had a rash for so long. Have you had steroids for the rash and itching?

Hope all goes well with the over night stay.

Maureen