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