Outpatient Appointments with Dentist and Supportive Care Team

Thursday, November 3, 2016: Outpatient appointments at MD Anderson, Houston, TX

Two appointments. One discouraging and one encouraging. The dentist appointment was supposed to be to receive dental clearance for the transplant. Unfortunately the dentist found that Todd's wisdom teeth need to come out or he needs to have two root canals prior to the bone marrow transplant. We knew this and tried to get them taken out in the summer but his platelets started declining after we waited the 6 months for the insurance to cover it. His platelets are still way too low to do any procedures!  I can't see them going up anytime soon. So all the doctors are going to talk and get a game plan together. In the meantime they are giving him headaches and jaw pain.

The second appointment was with the "Supportive Care" team. They will now be in charge of his symptom management: pain, physical therapy, fatigue, and nausea. The doctor was able to give him some medicine to stimulate his appetite called Reglan or Metoclopramide. So I'm hoping this will help with his cachexia and catabolic wasting. We spoke with a counselor and he is going to check in with me from time to time to see how I am coping.  The doctor thought it was best to keep Todd on a low-dose pain medication around the clock instead of just taking something fast-acting that won't last long.  This also means he will need to be on Senna-S to counteract the pain medications causing constipation. 


Cachexia ad Catabolic Wasting:  http://www.lifeextension.com/Protocols/Health-Concerns/Catabolic-Wasting/Page-01

Medication prescribed to increase appetite. 
https://en.m.wikipedia.org/wiki/Metoclopramide

First Week of Outpatient Clinic Visits: MD Anderson

Todd waits in the Sundial lookout area of the ATC at MD Anderson.

Todd had his second fast track outpatient clinic visit at MD Anderson on Friday, October 27, 2016. We didn't get much sleep the night before. Todd wasn't feeling well, so we went to bed late and he got up around 4:30 am in pain and discomfort. We had a couple early morning phone calls and texts from home around 6:00 am and decided to get up and try to get to the clinic early for his appointment. They schedule a time but we can arrive any time before 10:30 am. The sooner you arrive (any time after 6:30), the sooner you can get a transfusion appointment and be out of there for the day (supposedly).  Wednesday we didn't get there until about 10 am, therefore, we didn't get a transfusion appointment until 4:00 pm and they were running at least an hour behind. So, we didn't get out of the hospital til about 7:00 pm. There is a joke that the other patients tell the newcomers to the ATC (Advanced Treatment Center):

Do you know what "MD" means in the name MD Anderson?  Answer: Most of the Day!

On Friday, we didn't arrive until after 8:30 am due to some traffic delays. Labs and vitals were quick. His hemoglobin was still at 10!  Platelets were very low again at 4,000. No whites or ANCs yet. Today his results appointment was with Dr. Benton. His PA came in to discuss his symptoms, medications, and do an exam.

I was concerned about his lack of energy and excessive sleeping even though his Hemoglobin has been so high. He has seemed less responsive to me the last 7 days or so. There are so many things I need to be aware of besides fever, like headaches, new pain, heart palpitations, and symptoms of a brain hemorrhage (like Todd being hard to wake).  So the PA performed a cognitive exam along with the physical exam. She felt good that there was no leaking of any blood vessels in the brain afterwards but noted his extreme fatigue as well.

Dr. Benton came in and was glad to finally see Todd "in-clinic" instead of in the hospital. He acknowledged that Todd's counts were low but expected, well except for the platelets being so low. He said he noticed that Todd's platelets were having a difficult time recovering. I mentioned that he had the same issue post-transplant and even on the trial drug AG221; his response was without "platelet recovery." 

He quizzed us asking if we knew what happens to the platelets: they are taken by the spleen, used up, and/or destroyed by the body if it sees the transfused platelets as enemy invaders. He suggested using HLA matched platelets if Todd's numbers don't get out of the single digit thousands 1,000-9,000 soon. I mentioned that Cleveland Clinic had tried this too after transplant. This last scenario is what

Dr. Kornbleu meant when he said Todd could have built-up antibodies against the transfused platelets.

For some reason the platelet transfusion protocol includes giving intravenous hydrocortisone prior as a pre-medication. Every hospital has difficult protocols but this is the only hospital that has done this. They do it to help prevent a reaction to the platelets, but Todd has never had an issue with this. They also do not run the platelets with an IV pump in the ATC. Instead they just use gravity to run the platelets. The only risk associated with the use of hydrocortisone prior to transfusion is that they can weaken the immune system. Todd has been getting platelets every day or every two days. It is probably not a good idea for him to have the steroids/hydrocortisone that often. So we asked them to stop using them as a premeditation. Why didn't any of the nurses or doctors suggest this?  Apparently they use a small dose, but we still felt like another unnecessary risk, even if it is a small one.

Dr. Benton wasn't worried about Todd's extreme fatigue. He explained that Todd's marrow is at its "nadir" or "low point."  (Chemocare.com 2002-2016).

"The nadir time is usually about 10 days after treatment..." (Chemocare.com 2002-2016).

Dr. Benton feels that this period of "nadir" where the bone marrow bottoms out is really Days 14-21. He said that we need to start counting days from Day 6 like it is Day 1 to determine or gauge where Todd is at. Days 1-5 was just the DAC, which is not the same as the harsh chemo that started on Day 6. So, as of Friday, Todd was at Day 18.

He also explained that everyone reacts differently to chemo. Todd didn't lose any hair or get diarrhea or multiple mouth sores like some patients. For him, his symptoms have been severe fatigue and aches/pain. He set up an appointment for Todd to see a specialist who helps patients manage their symptoms better on Thursday, November 3, 2016. In the meantime he wants Todd to come in for a CBC and platelet transfusion on Sunday, October 30 through the out-patient clinic because they want to do the bone marrow biopsy on Monday, October 31, 2016.   He wants to see either an "empty marrow" or a "recovering marrow" for the results. We don't want to see any blasts. If there are blasts, they will likely add another round of DAC at the least. It might also push back transplant dates.  

I had some questions regarding the conditioning and eligibility for any trials that can be used along with the transplant. I have been researching what MD Anderson offers and there are at least 2 I would like to see if Todd would be eligible for. One uses pre-engineered cells to help reduce the possibility of getting Graft versus Host Disease and another that uses NK (See article on Natural killer cells).  We have only seen

Dr. Ciurea, the transplant doctor, once for about 15 minutes on the first day of Todd's induction chemo. I told Dr Benton that I would like us to sit back down with Dr. Ciurea to get a better feel for what the plans are for transplant. He agreed and set up an appointment for us to see Dr. Ciurea on November 10. Dr. Benton said he wishes that we could see what goes on behind the scenes because the doctors working together are in constant communication with each other. I told him that I didn't doubt that, but I wanted to be kept in that communication loop too.

Speaking of which, I've been frustrated with the timeline of getting Abby out here for testing. I hope I have already mentioned that they want to use Abby, our oldest daughter as the best Haplo or half match bone marrow donor. First, they wanted to get her out here right away, but then they said it would take 2 weeks at least to get approval. So, tentatively, here are the dates for transplant:

November 15-18

Abby comes out for exams and talk with doctors.

November 21

Todd admitted to hospital one week prior to start bone-marrow-killing chemotherapy

November 28

Transplant day. They will harvest Abby's bone marrow that morning and start transfusing him after. Then the 100 day begins.

SUNDAY OCTOBER 30, 2016

Today, Todd had to come in for a CBC and platelet transfusion. Since he is having the biopsy tomorrow they want to boost his counts. They like the platelets to be >30,000 but we all know that's not going to happen right now. Today's counts: Hemoglobin hanging in there 9.6. Platelets 2,000; no whites or ANCs.

  

I love meeting other patients and their families. Friday I met Burt (in his 50s) and his mother. Burt has a rare type of Leukemia and is recovering from his first bone marrow transplant. None of his siblings were a match, so he used a full match from the National Donor Registry; a young 21 year old man who thankfully donated. They were so grateful to this young man and his donation! 

Today, we met a gentleman named Thomas (age 69) and his family. He was just recently diagnosed with MDS. He was feeling tired and was diagnosed with a terrible kind of pneumonia, which he is still recovering from. He was here getting his second round of a trial dose SGI-110, a great treatment drug from Seattle Genetics used to treat MDS with CD33 mutation. There is a lot of buzz about this drug and initial testing looks promising. The doctors at The Cleveland Clinic recommended this for Todd at first, but he didn't qualify for it because he had received prior treatment for his MDS. There is an immediate comradely between cancer patients. We become one big family in the same fight, on the same team. It's a fight that involves the uprooting of the lives of the patient, caregivers, and family members of all ages. We lean on each other. We learn from each other’s fight and we share openly love and hope. Cancer is no respecter of persons but cancer families bond together respecting all persons.

References:

NK Cells: https://www.mdanderson.org/publications/oncolog/february-2015/natural-killer-cell-therapy-may-augment-treatment-of-hematologic.html

SGI-110 Trial Study:  https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2013-0901.html

Regulatory T Cells Pilot Study to prevent Graft versus Host: https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2014-0150.html

October 26, 2016: First Fast-Track Outpatient Appointment

Wednesday, Oct 26.

Today, Todd has his first Fast-track Outpatient Appointment at the Leukemia Clinic at MD Anderson.  It was a learning process.

We left the hotel in the morning, after rush-hour traffic.  I couldn't believe how fast and close we were to the hospital from the hotel taking the highway.  When there is no traffic, it is definitely close enough. 

The Outpatient Leukemia Clinic is a well-oiled machine.  They have the process down to a science.  First, you sign-in and go have labs drawn.  Then you go to have your vitals taken.  Then, you wait...About an hour or two later, they call your name and you go into an exam room to go over your results with a nurse.  Todd's counts were mixed.  His Hemoglobin was a remarkable 10.0!  (No transfusion of red blood needed), which is the highest it has been in months!  His platelets however, were 2,000 the lowest I can ever remember.  His potassium and magnesium were low, so he had the choice of having them infused, which would take 2 hours or he could take pills; of course, he chose the pills.  He needed platelets, so we couldn't get a treatment time in the ATC or Advanced Treatment Center until 4:00 p.m. 

They also informed us that the transplant team had scheduled a Pulmonary Function Test at 2:00 p.m.  So, we went there first, even though we arrived early.  After that, we had to sign into the ATC area.  We were at least 2 hours early, but signed in hoping that we could get in sooner, but that didn't happen.  They have a huge waiting area called the Sundial on the floor with reclining chairs that face large plate glass windows overlooking the valet area, couches, and tables and chairs.  While waiting we met a retired preacher from Cold Springs, TX who grew up near Akron, Ohio.  He was over 70 years old, had AML, and had been through 2 prior transplants, relapsing both times.  At the present time, he was on DAC chemotherapy every 6 weeks.  I didn't know that DAC was used as monthly treatment, but it is a hypomethylating agent, like Vidaza, which I know they use as monthly treatment until it stops working.  I found this news a little upsetting.  It plays on my old thinking that transplants don't work or work that often.  His caregiver thought it is all about the money, insisting that patients try transplants, especially multiple times.  We had agreed with this sentiment before Todd's first transplant; we felt pushed into trying it, that it was the cure-all to end all, which we shortly learned it wasn't.

We didn't get back to a room until about 4:20 p.m.  One unit of platelets usually takes between 30 min- 1 hour depending on how fast they are run.  While getting his transfusion, the Bone Marrow Transplant Coordinator called Abby to get some general health information over the phone (can she walk up stairs, etc.).  She told Abby that they don't think they will be able to see her next week either!  The Coordinator said it might be in 2 weeks!  We are going to get dinner and retire to the hotel. 

We come back on Friday, October 28, 2016 for his next out-patient clinic appointment.  This time, instead of seeing a nurse, we will go over the results with Todd's Leukemia doctor here, Dr. Christopher Benton.  I have some questions to ask and I am looking forward to seeing him.

Before I go, I wanted to share this prayer that my fried Robin Chew, from my former office at Northwestern Mutual, that Todd and I plan to read and pray everyday.

October 24-25, 2016. On our own; Out of the Hospital

I can brag now that we made it through the first night out of the Hospital, October 24! We survived one full night outside the hospital with no fever! Thank God. I was afraid to post last night that Todd was discharged from the hospital; there was a slight delay as he developed a rash on his torso. After examinations, the doctors thought it was a reaction to the oral antibiotics they started him on before discharge. So, they changed the prescription and we were off out of downtown Houston and onto a 5 lane highway going 35 miles per hour heading towards Pearland, a suburb south of Houston.

Our hotel is great! The beds so comfortable. We got dinner and slept in late. No fever!

We learned yesterday, October 25, 2016, that the Bone Marrow Transplant Team/Lab processed the blood from the kids and Todd's other brothers for the bone marrow match. All of the kids were a match, but Abby was the closest match.  Todd's half-brother Paul was also a good half match, but not quite as close as Abby.  At first the Transplant Team wanted Abby out here this week! As soon as we started making plans to fly her out, they informed us that they had not received the needed insurance approval to run the tests on Abby, the donor. So we are hoping to get her out here early next week. Thanks to all who have donated to the Go Fund Me Account; now we can fly Abby out here and house her with us.

Our second day at the hotel, Todd did not get out at all.  I had a difficult time getting him up or awake in the morning and afternoon, so I called the nurses' line.  They told me to keep an eye on him and bring him in if I felt uncomfortable with his excessive sleeping.  By early evening, he ate some dinner and sat up in bed the rest of the night to watch TV, including the first game of the World Series in Baseball (cheering for the Cleveland Indians over the Chicago Cubs!). 

Leaving the Hospital after being admitted for Fever.

Treatment Timeline: September 25, 2016 - Present

I wanted to make a post of Todd's treatment by date and day for me and others to keep track of our progress.  I plan on updating this from time to time.  I'm sorry for not keeping up with posts here, but things have been crazy busy every day.  The time goes so fast and it is easy to lose track of the days.  The Blogger App on my IPhone has also not been working, which has made it difficult to post; this means I have to do it on my laptop only. 


September 25, 2016:  Todd taken to the ER at Soin Medical Center, Beavercreek, Ohio.  Diagnosed with Splenomegaly, low CBC counts, and blasts in pheriphal blood. 

September 25 -29, 2016: Admitted to Soin Medical Center
September 29, 2016:  Discharged from Soin; Fly to Houston, TX.  Taken to ER at MD Anderson Cancer Hospital and Admitted.  Diagnosed with MDS with Secondary Acute Myeloid Leukemia.
October 4, 2016: Treatment Decided.
October 5, 2016: First Day of Induction Chemotherapy.  DAC + CIA; 5 + 5 day regimen.
Dr. Stefan O. Ciurea, MD, Transplant Doctor came in for Bone Marrow Transplant consult.  Suggested testing the kids for Haplo Match. 
October 5- 9, 2016: Days 1-5 of DAC chemotherapy
October 10 - 12, 2016: Days 6 - 8 of Idarubicin Chemo
October 13- 14, 2016: Days 6 -9 of Clofarabine. Ted Cade, Paul Cade, and our 3 kids submit DNA/HLA blood tests for bone marrow transplant match.
October 10- 14, 2016: Days 6 -10 Cytarabine
October 14: Last day of Chemotherapy. First Lumbar Puncture and Intrathecal Chemo: Methotrexate
October 18: Second Lumbar Puncture and Intrathecal Chemo: Cytarabine.  Discharged from Inpatient Stay at MD Anderson
October 18, 2016 11:10 Todd starts running a fever.
October 19, 2016 Todd to ER at MD Anderson.  Re-admitted to Transplant Floor 17.
October  21   : Moved to Floor 16; Room 1678
October 24: Discharged from Hospital 2nd time. 
October 24 - Present Staying at Springhill Suites by Marriott, Pearland, TX 
October 26, 2016.  First Out-patient Fast-Track appointment.  Platelets needed (2,000) along with potassium and magnesium. Hemoglobin 10!  No whites or ANCs.  Received platelet transfusion in ATC.
October 31, 2016.  Bone Marrow aspirate.  Cycle 1, Day 28 Induction Chemo DAC + CIA.  Results: blasts at 20%

NOVEMBER 2016

November 4, 2016.  First day Todd had 0 platelet and 0 White Blood Cell counts.
November 5, 2016.  Todd runs a high fever and is taken to ER.  Is admitted to Hospital. Has a xrays and CT of head.
November 6, 2016  Confirmed fungal sinusitis infection in right sinus.
November 8 2016 another follow-up bone marrow from DAC-CIA induction. 
November 9, 2016 BM aspirate results at 38% blasts.
November 14, 2016  First hyperbaric chamber treatment.
(Nov 14, 15, 16, 17, 18, 21, 22, 23, 29, 30) 10 days of hyperbaric treatments at Memorial Herman.
November  18, 2016  White cell transfusion from donor.
November 20, 2016  Todd spikes a high fever; maybe from the white cell transfusion. Started new round of IV Antibiotics.
November 22, 2016.  Started Second type of chemo treatment to fight MDS/AML.  Day 1 of DAC
November 22 - 26, 2016. Day 1-5 of DAC
November 22, 2016.  Bone marrow biopsy: blasts decreased to 24%.  Maybe due to a late response from first round of induction chemotherapy.
November 23  Started second chemo regimen along with 5 days of DAC: Venetoclax (Venclexta ) 100 mg tablet per day with Posiconozole and Voriconozole tablets added; continued Ambisome antifungal IV treatment.
November 30, 2016.  Todd is discharged from the hospital to outpatient care. Last hyperbaric chamber (10th) treatment.  First note of an abnormal EKG.

DECEMBER 2016

December 2, 2016.  First outpatient appointments post-discharge from third hospitalization.  Ambisome infusion, CBC labs, reviews, every Monday, Wednesday, and Fridays; along with some Sunday transfusions of platelets.  Some infusions of Potassium and/or Magnesium infusion balls sent home. 
December 2, 2016.  Appointment with Dr. Christopher Benton
December 3, 2016.  Move into Apartment on Brompton Road, Houston, Texas.
Dec 5, 7, 9, 12, 2016: Outpatient appointments.
December 9.  Dr. Benton came by ATC and increased Venetoclax dose to 200 mg. until Sunday.
December 11.  Increased dose of Venetoclax to 400 mg. (no -azole drugs)
December 13, 2016.  Appointment with Infectious Disease Dr. Shelborne; Must continue on Ambisome or fungal infection could become invasive.  Was shown to be invasive from first biopsy of the sinus, but infection was caught very early.
December 13.  Bone Marrow Aspirate.
December 14.  Dermatologist Consult with Dr. Pacha.  Biopsied spot on right shin for fungal infection.  Out patient appointments: CBC/LAB, review, Ambisome, 2 units of RBC; 1 unit platelets and ball infusion of magnesium.
December 16.  Outpatient appointments including Dr. Benton to review bone marrow aspirate results, check on continued care at MD Anderson due to change in medical coverage beginning Jan 1 2017.  Sample was not good to look at; only could estimate 10% blasts. Flow cytometry was done in addition to get better counts.  These results showed 33% blasts. 
Dr. Benton recommended a second cycle of Day 1-5 DAC plus 400 mg of Venetoclax.
December 18.  Day 1, Cycle 2 of DAC plus 400 mg. of Venetoclax.  DAC given by outpatient infusion for five days.  December 18-22.

December 23, 2016.  Fly home to see family for Christmas.

JANUARY 2017

January 2. Bone marrow Aspirate scheduled.

January 8.  Day 21 of Cycle 2 DAC + Venetoclax.

January 15.  Day 28, Cycle 2 DAC + Venetoclax.

January 16.  Bone Marrow Aspirate scheduled. 

                   

October 21, 2016

Things settling down a bit. Yesterday was a rough day.  Todd had a 103 fever and felt hot and lethargic to the point that he couldn't stay awake. I was so worried about him, because it was very hard to rouse him.  Once the fever was gone he felt some better. They moved us Transplant Floor on 17 back to the Leukemia Floor on 16 about 1:15 am this morning!  We have a very small room but hopefully we won't be here long. His counts are very low. Platelets have been 4,000!

Thanks to Kim Bird (my high school friend who lives in Ft. Worth, TX) and her husband John for running out and buying Todd a new pillow and delivering it to the hospital. So many of you have been extremely generous in your support!  We are so grateful. You are the driving force behind us. The wind beneath our wings when we are too tired to do anything but coast. And we are tired of being shuffled around; it's exhausting. It will be nice when we can find a place to settle into.

Todd's Room 1678 Second Admission

October 19, 2016 Rush to ER with Fever and Re-Admission!

It's been the worst, most stressful 24 hours since all this started 4 weeks ago. As soon as we got discharged and settled into the hotel last night Todd got the chills and spiked a fever. Had to rush him to the ER. Luckily, his cousin Denise brought us a car to use just hours earlier. We spent all night in the ER until they got us into a room. Only slept few hours.

I had to go back and get all of our stuff out of the hotel before check out time, but I forgot to grab his "My pillow" from the hotel room. By the time I called and drove back there it was mysteriously gone. Obviously someone took it. Who takes a sick man's pillow? I guess someone at the disgusting Econolodge we had to stay; where homeless people were camped out with shopping carts and sleeping on the ground all around the hotel. I've cried the last two days especially since some people in our lives can only be cruel and hurtful and because I'm too tired and emotional to cope with people.

Todd is still running a fever. It has gotten as high as 103!  The doctor came in and said, "You could fry an egg on his stomach!"  We still don't know why. Thanks to all who have been praying and donating. We really need your support. 

Luckily, I am able to keep all of the things we don't need in the car, in the parking garage.  Parking here is $12 a day, which can add up if we would be admitted for long.  I went to the Social Work Department and complained about the hotel.  I said that the department should not use that place!  Patients and families are already stressed out enough without having to deal with being scared to walk down the road to get food or have to deal with people stealing. 

Before we got the car, we had to take the hotel shuttle to get there.  It was free, but we it took us almost an hour to go 2 miles down the road, because it had to stop and pick up other people from three other hospitals nearby.  Todd was nauseous and could barely handle the bumpy ride. 

If you are reading this blog, and need to stay near MD Anderson, let me tell you to avoid staying near the NGR Stadium/Old Spanish Road area.  While there are shops and restaurants nearby, there are homeless people everywhere, most of whom will come up to your car window to beg for money.  I walked nearby to get us dinner the night we were there and had to pass homeless people sleeping on the ground near the sidewalk.  It is sad; I'm not angry with these people, but I have to admit that it makes me feel unsafe.  I'm already stressed and trying to navigate unfamiliar territory; I need to feel safe. We will definitely be finding another place to stay, even if we have to pay full price for it. 

Some of you recommended the Rotary House Hotel, attached to MD Anderson.  It looks great, but I fear it is too expensive even if we could get a reservation there.  From I could tell when I looked online, it was booked for weeks/months. 

The city is aware of the homeless problem and working to address it, but it looks like a solution is far away:  http://cw39.com/2016/10/20/houston-mayor-accepts-1-million-jp-morgan-chase-donation-to-help-end-chronic-homeless/