Seeing Early Results within 5 Days of Starting Trial Drug

Todd holds up the AG-221 Trial Study Drug

We are so excited that Todd finally got to start the Trial Drug AG-221 on Monday, April 20, 2015, at the Cleveland Clinic. We had to be there from Sunday night April 19, through Thursday morning, April 23.  My mom graciously stayed with the kids.  Monday was a long day, beginning with testing at 7:15 a.m.  He took the first dose of the drug:  200 mg or 2- 100 mg tablets with food  around 9:00 a.m. with hourly tests of EKGs and blood draws for 10 hours beginning shortly after.  His blood counts were low that day with his hemoglobin at 7.6; whites .47; platelets 34,000; and ANCs/neutrophils too low to count.  So, once they checked the protocol to make sure it was alright to give him blood during the testing, they ordered him two units of blood to be transfused while he was there.  We finished that day around 7:00 p.m.

The next morning, Tuesday, April 21, we had to be there around 8:30 a.m. for lab work and testing.  No drug was given this day.  The protocol called for one dose on Day -3, which was Monday, then to do testing and evaluations for the next 72 hours.  So, we had to go back Wednesday for another easy day of morning testing and no medication.  Thursday, April 22, 2015 (my mom's birthday!) was considered the official first day or Day 1 of the trial drug.  It too was a relatively easy day.  We were able to finish up early and head home.  For all the months and preparation leading up to beginning the trial, three out of the four days we were relatively uneventful!

Overall, we are pleased with how everything went at Cleveland Clinic.  Todd got to see his bone marrow transplant doctor on Monday and Thursday.  I love the research nurses Ashley, Samantha, and Chad.  They were very good to us.  The Cleveland Clinic was able to fund our hotel stay for this initial visit at a nearby hotel between downtown Cleveland and the Clinic; mainly because we were on the waiting list for the Hope Lodge, but were unable to get in.   We were able to submit travel expenses including Todd's meals and gas/mileage for reimbursement.  On all other trips, we have to pay for our hotel stay, unless a room becomes available at the Hope Lodge, but we can submit those expenses also.  God continues to provide for us!

While we were there, we visited our friend Rick, from the Transplant Floor.  He had been admitted to the Leukemia floor trying to fight his relapsed AML since March.  The chemo has taken the toll on him.  His hands and feet were peeling and yellow from jaundice.  He wasn't as responsive like normal. He has a bowel blockage and hasn't been able to eat solid foods; unfortunately, he can't control his bowels at all, they believe that is also a side-effect of the additional chemo.  He has to have platelets and blood transfusions every day!  They are also giving him potassium for his brain.
As a follow-up, I talked his wife on Wednesday, April 29, and they were in the process of moving him to hospice closer to home.  The doctor said he may have 2 weeks to 2 months to live.  He has 50% blast cells in his blood stream, and does not have the same gene mutation Todd does, which makes him ineligible for AG221 drug study.  Please pray for him in his last days and for his family as they go through this difficult time.  

Todd had to have routine blood work done on the following Monday, April 27, 2015.  We were afraid he was going to need a transfusion, because he had been feeling fatigued the day before and spent most of the day in the bed resting.  To our surprise, his numbers were good!  He needed no transfusion since his hemoglobin count was at 8.8. His white count went up to 1.0 which hasn't been that high in weeks or months! His neutrophils were still low at .700, but at least he was above the neutropenia threshold of .500 and his platelets were at 60,000! We were praising God for these very early results. He had only taken 5 doses of the trial drug by this day and we want to believe that the increase was the result of the medication beginning to work.

The weekend we got back home, we started working on the house again, trying to get it ready to sell.  We both worked a little too hard and too much, but not without help.  That day, I had my good friend Dana come over and she went to work on helping clean out my bedroom closet, so it didn't look cramped or cluttered.  We got a lot done! Monday, I spent finishing cleaning the closet and taping up boxes and moving them out to the garage with the help of my good friend Darsie.  Tuesday, we were blessed with the help of our great friends Chris and Lynda; the guys worked outside in the yard and Lynda and I cleaned and straightened up the Piano Room and Dining Room.  We got so much done! 

In addition to working on the house, we have been selling our furniture and other items as we go.  I take photos and then we post the items online and usually spend the next day or two taking emails, texts, calls, and arranging pick-up times.  This has been a good strategy, since we are getting things removed now before showing the house and before I attempt a garage sale (which is so much work in relation to how little people are willing to pay). 

By Wednesday we needed a break! We had to pack for our trip to The Cleveland Clinic, but at least I was able to help Ellie pack up some keepsakes in her room before leaving late that night.   Thanks to Todd's mom Ann and our former neighbors Joni and Raymond, for all the boxes and packing materials!

We arrived around in Cleveland around 11 pm last night and hit the bed, since we had to be at the hospital the this morning, Thursday, April 30 before 7:30 a.m.  The day's appointments went well.  Todd saw his doctor and the research nurses got busy asking their questions, doing the EKG and blood work for the trial study.  He was scheduled to have a transfusion today if his hemoglobin was below 8.5, but we learned that it was at exactly 8.5, so everyone was in agreement that since Todd was feeling pretty good, they were going to hold off on transfusing him for today.  The rest of his numbers were down slightly, his whites went down to .830; his platelets down to 41,000; and the nurse contacted us later with the other numbers, namely his neutrophils, which have dropped to .530 making his nearly neutropenic again.

What's Next?
He is scheduled for routine blood work every Monday at the local oncologist's office, so we will see how his counts are on Monday, May 4, 2015.  If he needs transfused, the local oncologist will make arrangements for him at Miami Valley  Hospital before his next appointment at the Cleveland Clinic on Thursday, May 7, 2015.  This is going to be another long day of tests, because it is Day 15, or about the half-way point of the Cycle 1 of his drug trial.  In addition to hourly blood draws for 10 hours, he will have EKGs, and a bone marrow biopsy (his 15th? I think, he has had so many, I have lost count). They have also scheduled a treatment appointment for transfusion, if he hasn't had one by then and needs one. The protocol of taking the drug with food will also change at this point.  Instead, he will have to fast for 2 hours before taking his scheduled dose at 9:00 a.m. and then wait for 1 hour after taking it before he can eat.

The only concern so far is his bilirubin levels, which were elevated, however, even this is expected in the beginning.  The research nurse assured me that these levels typically come down as time goes on.  They are not concerned about these levels because his liver numbers and the direct bilirubin numbers both looked good.  They only thing that I noticed today, was a slight yellowing in the corners of his eyes; the nurse agreed that there was a slight bit of yellowing, but that this is a known side-effect of the drug.  If it gets too high, they will interrupt the dose or decrease it, but that his current levels are no where near needing any of those adjustments now.

On a personal note, we will continue to work on getting our house ready to sell.  Which means, I will be enlisting another round of volunteers to help me inside get things de-cluttered and cleaned for showing.  Todd won't need much more help outdoors, but mainly indoors, with a bit of painting projects, changing light bulbs inside and outside (some days I don't want him on a ladder), and repairing a bit of drywall.  Tomorrow, I'm going to help our oldest daughter Abby finish moving things out of her dorm room.  I can't believe she is done with her Freshman Year of college already!  I need to work on preparing a graduation party for Hannah Lewis, including buying decorations, ordering food, etc.  Ellie's last club volleyball tournament is this Saturday: yahoo!  And track season should be ending soon too.

Please pray: 

• That we can get our house on the market in about two weeks.  The market is still hot and we can't really buy or write a contract on anything til we have ours sold.
• That Abby and Hannah Lewis find jobs soon.
• That I can get get the majority of packing and selling done before I start summer classes in June.  I also have to turn in my application for a fall practicum by June 6 or so, and I don't have one lined up yet.  If I can't do this, I won't be able to graduate by the end of the year. 
• Continued improvement of Todd's health and stamina; namely, that the drug will begin to help his counts go up and the need for transfusions go down.
• Family issues and dynamics as we continue to undergo weekly family counseling
• That the transition of moving to go smoothly.  That God would open and close doors: find the right buyer for our house and the right house for us to buy.  We have been struggling to find  a house that isn't too big or too small that will give us enough financial breathing room while Todd is on disability and I finish my degree.  The physical demands of moving and the emotions of giving up our home and most of our belongings is traumatic, even though we understand they are just material.  This is the only home Ellie has really known and both of her siblings will be gone at college this fall; all this will be a big adjustment for her. 

As you can tell, there is just so much uncertainty in our future.  We are doing our best to take things a day at a time, but with such upheavals and the constant concern for Todd's health, me and the kids are feeling a bit anxious and emotional. (Not Todd, he is in a different place than we are!). We understand the wisdom of asking God to give us just what we need for that day, and not to worry or be anxious about everything else, but we need reminded!  We also understand that we need to take these feelings to God through prayer and that he will supply all of our needs.  Please pray with us.

As always, we appreciate your love and outpouring of concern and support.  It means so much, to see our friends and family helping us through all of this day by day.

Transfusions and CBCs in Dayton too slow; Todd becomes Neutropenic

When Todd went in for his third day of Chemo on Wednesday, January 14, 2015, they checked his blood counts again.  His hemoglobin dropped from 8.0 on Monday to 7.9 on Wednesday.  So, he needed a transfusion. 

But the nurses and staff can't seem to get the ball rolling.  First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn.  Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port.  The phlebotomists are not allowed to touch it.  They can only draw from his arm.  So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood.  This has taken anywhere from 30 minutes to over an hour.

After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes.  He was tired of waiting.  So, they got the sample and told him it could take up to an hour to get the results.  He was tired and so he told them just to arrange to have the transfusion done the next day.  They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon. 

He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems).  So, he waits an hour for them to get the type and screen.  Then they have to order the blood.  It always takes about 1 1/2 hours per unit of blood and he always gets 2 units.  So, needless to say it was a long day. 

Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days.  If he needs a transfusion, he can have it done there (supposedly).  When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done!  So, he has to wait til they call the doctor and get orders.  Then, there is no nurse available to take blood from his Hickman again, so he waits.  After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample.  Then, they say it is going to take another hour to get the results and that is with it labeled "STAT."  Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.

Hours later, they call.  Instead of giving him his CBC results, they just said he whites were low at .7 and that's all.  So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him.  He has to leave a message for someone to call him back.

Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again!  I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results.  At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes.  So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it.  She said, "He has good veins, they can just stick him."  And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck!  It could cause him to bleed and bruise!"  And she says, "Yes, I guess your right.  I hadn't thought of that!"  Ugh...

Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting.  He doesn't have much energy or patience right now.  Who would? No patient should have to go through this much confusion and waiting!

It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements.  I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.

 He finally got a call back from another nurse with the other results:  His Hemoglobin is a 9.3, well above an 8; no transfusion needed.  His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed.  But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes  him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc.  These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them.  Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too. 

It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so.  That being said, its not good that they are this low.  We all are going to have to be careful in the meantime.

I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics.  We are not sure what this visit will entail except for the routine CBC and seeing the doctor.  I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant.  At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease.  He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant. 

I will post more after Wednesday.  Thanks again for caring enough to read this blog and to pray for Todd. 

Days +90: Chemo going well

The first day, December 15, 2013,of chemotherapy (Vidaza) went off uneventful. Todd received treatment at our local cancer center in The Dayton area. Todd was even assigned his former nurse Dinah to resume his treatments. To show you how Todd has retained his sense of humor, he couldn't wait to tell Dinah that he has a Hickman catheter, because she often struggled to get the needle through his "thick skin."  

They ran a CBC before starting treatment and the results were encouraging. The showed a good bounce from the transfusion he received last Friday. We were glad to see he was able to hold the good stuff from the transfusion. His whites went from 1.28 to 2.0; hemoglobin from 8.1 to 10.5; and platelets from 22,000 to 27,000.  Sometimes patients receive transfusion, but have a hard time keeping the cells from them for various reasons. Todd had this problem in the hospital with his platelets. So, this is good news. 

 

I think the local oncologist draws a CBC every 3 or 5 days. It is common for counts to drop the first few days of chemo, but as the treatment begins to work, suppressing the growth of blast cells, counts go up.