We’ve Got a Plan Stan

My Appointment
Lindsey and I met with Dr. Cripe at 9:30 this morning.  We asked many questions and he gave us up front answers.  The plan we are moving forward with is to start on Blinatumomab as soon as possible.  This will hopefully occur tomorrow, but may occur later in the week.  Dr. Cripe is reaching out to one of the CAR T investigators at Penn to see if Blinatumomab impacts their therapy at all (he doesn’t think that it does).  He was also waiting to hear back from one colleague about any trials that incorporate chemo along with Blinatumomab.  There’s one other hold up, but I’ll save that for its own section 😉

The Blinatumomab Planblincyto-1
Once I’m admitted, we will begin the Blinatumomab (blin-a-TOOM-oh-mab).  It is a continuous IV, meaning the drug is constantly being given to me through my PICC.  If there is an issue and the IV stops for some reason, I have to be observed for 4 hours when the med is started back up.  I will receive 9mcg/day for days 1-7.  This is a lower dose to make sure my body doesn’t freak out.  On day 8, the dose will increase to 28mcg/day.  This is the dose I will receive for the remainder of my treatment.  I will be on the med for 28 days and then I will have 14 days off.  I will be in the hospital for days 1-9 so that they can observe my reaction to the initial dose and the increased doses.  If all goes well, I will be discharged on day 10.

Two Cycles
The current plan is to give me $124,000 of Blinatumomab.  I asked to just get the check, but apparently it doesn’t work that way.  $124k of Blinatumomab is 2 cycles worth (56 days).  As previously mentioned, one cycle is 28 days of the med and 14 days off of it.  I will most likely have another BMA after the first cycle (oh joy).  If I am in remission, we will get the ball rolling on SCT, but I will still receive a 2nd cycle.  If I am not in remission, we would still expect to see a decrease of leukemia in my bone marrow.  We would proceed to the 2nd cycle because all the trials were based on 2 cycles.  I would then received another BMA to see if I achieved remission after the 2nd cycle.  The trials also included 3 cycles of consolidation (for another $186k), but we most likely won’t do those so that we can move to SCT.

The main barrier to CAR T right now is time.  If I entered a CAR T study, we would have to arrange for travel and I would have to be screened.  If accepted, they would have to harvest my T-cells, engineer them and put them back in my.  The big question is, what would we do to control my disease during that time?  Since we want to be aggressive and continue to push the cancer back, we decided to move forward with Blinatumomab instead of trying CAR T.  As Dr. Cripe put it, Blinatumomab is made for someone like me.  Someone who failed to achieve a 2nd remission and has a stem cell donor waiting.  CAR T should still be an option down the road if needed.

Blinatumomab Side Effects
So the reason they start you at a lower dose is because the side effects can be, shall we say, not so fun.  I’m hoping for the milder spectrum, which is flu like symptoms.  On the more severe end of the spectrum are confusion, fluid in the lungs (which may require me to be on a ventilator) and seizures.  So let’s just say a little prayer right now for mild side effects (no, really.  Say a prayer right now).

Assuming all goes well in the hospital, I will go home and continue the IV.  Home care will come to my house to maintain the PICC line and help with any clinical needs.  I will most likely continue to have side effects while at home.  So I’m potentially facing 28 days of flu like symptoms (fever, headache, nausea).  Oh joy.  But flu like symptoms with a pulse beats no flu like symptoms without a pulse any day of the week.

Blinatumomab In Action310px-BiTE_antibody_en.svg
Chemo is essentially a poison that kills cells.  Blinatumomab is a monoclonal antibody that alters cells to allow my immune system to attach to and kill the Leukemia cells.  It does this via the CD3 antigen found on T-Cells and the CD19 antigen which is found on the surface of B cells.  The reason CD19 is desirable is because it’s not present on other cells.  So when my immune system is enabled to attach to the CD19 antigen, it should only be killing B cells and not other cells in my body.  Oh, I should also mention that my leukemia is occurring in my B cells.  So by killing off all my B cells, we are essentially killing off the leukemia.  Some good B cells will die in the process, but that’s the price we have to pay.

What if Blinatumomab  Doesn’t Work?
In Dr. Cripe’s words, that would be “very concerning. very concerning”  Which I think is Dr. speak for, “we wouldn’t have many options left.”  Really, the only option left would be CAR T and/or natural remedies.  The battle I face is that Blinatumomab (I really need to find an abbreviation for this drug) is less effective the more advanced the leukemia.  There is a study from Europe where 80% of patients achieved an MRD negative result, however these patients were already in remission (MRD is a very sensitive test to detect single cells of leukemia in the marrow).  I am obviously not in remission.  In the phase 2 clinical trial, 40% of patients who had relapsed ALL achieved remission.  This is the group I fall into.  So while 40% is much higher than the remission rate before Blinatumomab, it’s still not a sure thing.  I do however feel good about the data we have and my disease burden.  I’m not on the low end of disease burden (the amount of leukemia in my marrow), but I’m also not so high that the drug would have a very decreased chance of working.

So How Am I Doing?
Still doing good overall.  I feel much better having a plan.  I think that was the hardest part of the last few days.  I’ve always said that I’m lucky (at least in  cancer terms) to have leukemia because there is a pretty definitive plan of treatment and the cancer is severe enough that that treatment usually begins right away.  Waiting 4 days for a plan hasn’t been typical in my treatment so far.  It wasn’t that long to wait, but I definitely feel frustration for others who find a lump or have a biopsy and have to wait awhile to see a doctor or begin treatment.

Anthem and IUH
So the other hold up for my admission is who is going to do my Home Care.  Obviously IUH wants the IUH Home Care department to handle it. This isn’t only for revenue reasons.  Blinatumomab has very specific guidelines associated with it.  IUH Home Care has received training on how to administer it and deal with it.  There isn’t a guarantee that another home care agency would have that expertise.  Unfortunately, Dr. Cripe said that Anthem may not cover IUH Home Care.  He was only just told this before walking into the room with us, so he didn’t have many details.  However his staff should have made progress on the topic today.  So what we need is for Anthem to either approve IUH Home Care or for another Home Care agency to be willing to treat me.  The other option is to hospitalize me for 28 days, but I think Anthem will pay for IUH Home Care before they pony up for 28 days of hospitalization.

Wrapping Up
That’s the high level overview of where we are at.  In the narrative above, I’ve incorporated the answers to the questions we asked Dr. Cripe.  However, if there is a specific question you have or a clarification you need, please say something in the comments, send me an email, or a message on Facebook.  If you have the question, there is a good chance someone else has the same question.

Which Reminds Me
One thing I didn’t talk about is blood counts.  Since I will not be on chemo, my blood counts won’t dip as severely as they have in the past.  I will most likely still see a dip simply because the leukemia is suppressing my counts as I type this and the Blinatumomab will have some effect.  But the good news is that I will hopefully keep some level of white blood cells so I can fight off infections, hemoglobin so my organs can live, and platelets so I don’t bleed out and stain the carpet.

And the Powerball Numbers Are:
Because I have active Leukemia, my counts are dropping.  This is expected.  Here are my counts from my last 4 draws so you can see the trend:

6/29: WBC- 1.7, Hemoglobin 9.4, Platelets 203
7/6:   WBC- 1.4, Hemoglobin 9.7, Platelets 155
7/8:   WBC- 1.2, Hemoglobin 10.2, Platelets 146
7/13: WBC- 1.2, Hemoglobin 9.9, Platelets 107

A Duck Dynasty Prayer
Father, I rest in you.  I rest in the care you are providing for me.  I rest in the knowledge of your salvation.  I rest in the bounty of your love.  Thank you for a clear plan.  Thank you for a drug that wouldn’t have been so easily available not too long ago.  My prayer continues to be the same.  That Lindsey and I would honor you throughout this.  That I would go into remission.  That I would be cured.  In your name I ask these things with all the passion I can muster.  Thank you God for providing for my family and I.  Thank you for another day.

22 thoughts on “We’ve Got a Plan Stan

  1. Praying for you Rob! Praying for mild side effects and for the medication to work and that you will be in remission soon. Prayers for strength for you, Lindsey, and your kiddos! I pray for you all everyday and will continue to do so!


    Liked by 3 people

  2. Praying for you, Lindsey and the kids while On a walk right now. When my walk is over, I will take a shower and pray some more and then climb into bed and pray for you, Lindsey and the kids until I fall asleep. Love you, little brother.

    Liked by 5 people

  3. I stayed up until you posted so I could “Read Rob” tonight and not wait until tomorrow! So grateful Dr. Cripe is so thorough and in depth in his studies. Prayers all day long that you will be starting on “Blinda” ASAP!!! I am with you every minute, and you are “lifting me up” in return! Love you! God is so good!

    Liked by 4 people

    1. I will pray specifically in the days ahead for mild side effects and remission of course. I was encouraged by your prayer – you are finding rest in Christ while defeating Leukemia’s potential influence on your attitude and perspective. Your strength, courage, determination are all evident of Christ’s light in your life.

      Keep strong, RobStrong!!!

      Liked by 3 people

  4. Rob your focus is fierce for the disease, family, answers, & faith. These are the makings of the warrior you are forced to become. You are in my daily thoughts.

    Liked by 3 people

  5. Wishing you positive outcomes in these next steps of your journey. You are an inspiration to us all, Rob…your determination is incredible and your faith is so strong. Keeping you and your family close at heart always.

    Liked by 3 people

  6. Prayers are headed your way. Stay stronge Rob. Your outlook is an inspiration to all. Thank you for your daily blogs. Keep them coming so we know how you are doing.

    Liked by 3 people

  7. I definitely did stop and pray for low side effects and physical strength to fight this battle. I think it’s awesome that you have this doctor that is very though and willing to pursue answers to any questions and concerns you have–along with a staff that supports you in managing some of the insurance burden. I’m praising God for that blessing as well.

    Liked by 3 people

  8. March On Christian Soldier. You have your battle plan and you have a tremendous army behind you. Victory is on our side!!!!!

    My oncology team always told me that the best way to quell the nausea is to sip on ice water or suck on an ice cube. It seemed to work for me. One of the things I learned also is that hydration and lots of fluids moving through my body (yes that means many trips to the bathroom) seems to keep symptoms at bay. May these little things will help.

    Dear Heavenly Father:
    Your hear our pleas for Rob and his family. Dearest Father we ask your blessing upon all of them, to keep them safe, to provide for them in their needs, and to bless them for being a true reflection of you and your teachings on faithfulness. You blessed Rob with a wonderful wife who will walk this battle with him. Give her the strength, the wisdom, and the perseverance she needs to support her husband and to provide and love and comfort for their children. Bless Natalie, Sydney and Tucker as their young minds try to figure this all out. Lord thank you for their devotion and love for their parents.

    Heavenly Father be with Rob’s parents and his Sister as they devote themselves to you and understand your relationship with them. Give them peace and love that they may cope with the ups and downs of cancer.

    Heavenly Father I ask that with this “B” treatment that Rob will suffer minimal side affects and that he can concentrate on the cancer cells dying and leaving him along. Lord we ask that he achieve remission after the first round so that he can begin his SCT and move back to a “normal” life whatever that may be.

    We thank you, We praise you, We adore you, We pledge our lives to you! May our mind, our hearts and our souls always be a reflection of you!!!!! AMEN

    Love to all
    Aunt Liz

    Liked by 2 people

  9. I thank God for those who do research on cancer and that there is still an option for complete cure! I pray that God will give you the strength to endure all the side effects. I pray for your family for the grace and praise for all the help and prayers you will receive. And I thank you in advance for the grace God will bestow on you.

    Liked by 2 people

  10. Our thoughts and prayers are with you, your family, and all the medical staff that have an impact on your care. We will also be praying for positive discernment for those non-medical personal who are making decisions related to your care

    Liked by 2 people

  11. Rob,
    Thoughts and prayers for you and your family everyday. We sure miss you at IUH but are happy to see you have such great coworkers. Not sure how you do it but you make me laugh every time I read your posts, you are quite an amazing man!

    Liked by 2 people

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