July 19, 2018 - Transplant Consult #3 Henry Ford Hospital

Wedding Anniversary 

The day after being released from the hospital for my round 2 consolidation chemo Alan and I celebrated our 2nd wedding anniversary. We went for a nice breakfast at Toast in Birmingham, drove to Independence Oaks, where our wedding was at, and took some pictures in and around the gazebo where we got married. We stopped at Great Lakes Crossing and saw the movie American Animals (it was weird) and then walked the loop around the mall. I was getting pretty winded on our walk and wishing for my walker or a scooter, which was a good sign that my blood counts were already starting to drop. After leaving the mall we drove up and down the Big Beaver corridor in Troy debating where we wanted to eat our anniversary dinner, and eventually settled on the very unglamorous Buffalo Wild Wings. All in all it was a very nice day for us, and we were happy and grateful for the two years of marriage that we have had, despite all of the challenges we have faced through out this time.

Post-Consolidation Round 2 Fever and hospital stay

Starting on Thursday I felt a little like I was getting a fever. However, it never spiked above 100.5. I went in on Friday for my blood draw and ended up getting a platelet transfusion. They said that my hemoglobin wasn't low enough for a transfusion despite the fact that I was feeling like I couldn't breathe at all when I was standing. The platelets did help a little bit with this though, so I guess low platelets can also cause shortness of breath, not just hemoglobin.

On Saturday evening my fever finally ended up spiking at 100.6, so we headed to the ER. I remembered that last time by the time I got to Ann Arbor my temp was 104 and I had such a high heart rate, and I could already feel my heart pounding, so we opted to go to the ER at Beaumont instead of driving all the way to UofM. Once there they triaged me, drew blood cultures, hooked me up to IV fluids and antibiotics, then arranged for me to be transferred to UofM. I took my first ride in an ambulance to get there, and was put in a holding room in the ER. I was finally admitted to a room in the Leukemia/Bone Marrow Transplant floor around 7am after having first gone to the ER at Beaumont around 8pm.

My blood cultures were all negative so the doctors thoughts were that my fever spiked due to the viral respiratory cold that I had been dealing with since the week before I started chemo (I tested positive for para influenza type 3 both at the start of my chemo round 2 and when admitted for fever). Or it could be fever of unknown origin which just spontaneously develops because I had no neutrophils/white blood cells. Once I was on fluids and antibiotics my fever never spiked again so I just hung out a few days and then once my counts started to increase I went home on Thursday (July 12)

Bone Marrow Transplant Opinion #3 - Henry Ford Hospital

So I mentioned last time that Dr. Bixby at UofM still wanted me to go to some additional consultations to discuss my transplant eligibility despite UofM saying they would not consider me. He had his office set these appointments up for me, one locally at Henry Ford, which is the only other transplant option in Michigan, and another at MD Anderson.

My appointment at Henry Ford was this past Monday, July 16 with Dr. Peres. I have to say we weren't really looking forward to the appointment because we don't consider Henry Ford to be a very good hospital. From the moment you park in the structure and get in the elevator to go to the building, to me everything just feels dirty. But Dr. Bixby really wanted me to go meet with the transplant doctor here, so we figured we might as well go.

From the beginning, it seemed like everything was against us going through. Over the weekend I had gotten a flat tire which we dropped off Monday morning to be fixed, and it wasn't ready yet by the time of my appointment. This meant we had to take Alan's car, which doesn't have air conditioning, on a 90 degree day. Then, while we were on the freeway there was a major backup. When we finally came to what was causing it we saw a semi truck blocking the 2 left lanes and a car that the truck had completely destroyed. Once we passed this traffic started moving along again, but we were already late for the appointment due to the delay. Soon after this, we felt the temperature drop by about 10 degrees and all of a sudden it was pouring rain. I'm talking about complete white out conditions, we could not see where we were going. All of this while we are trying to take exits to merge onto freeways that we don't typically travel on (75 to Davison and Davison to the Lodge) so not having visibility in an unfamiliar area was a major issue. Finally we made it to the hospital, arriving 30 minutes late for my appointment. A drive that should have taken 15-20 minutes had taken nearly an hour.

So we wait and finally get to meet with the doctor. He seemed really knowledgeable, and he was the first person to not say NO. 

We talked about all the same things that I talked about with previous doctors: the risks of the transplant and the extra associated risks with the neuroendocrine carcinoma. That there are no medical studies available to show what the existing NEC tumors will do while I am on immuno-suppressant drugs for the transplant, but that the likely scenario is that a suppressed immune system will cause the tumors to grow. And that if that were to happen, there would be nothing they could do for me at that time.

Despite all of this, Dr. Peres said that there are a list of conditions that if we were able to meet all of them, we could re-visit this topic of transplant and decide at that time whether it is the best option or not. Essentially the further out we are from my having completed the chemo for the neuroendocrine carcinoma the more comfortable he would be doing the transplant. Here are some of the items on his check list.

1) Complete the remaining two cycles of high-dose cytarabine consolidation chemotherapy and still be in remission from leukemia at that time.

2) Go for my next follow up PET scan for my NEC in October, and receive another clean report with no FDG uptake and no evidence that the tumors have grown at all.

3) Most likely if #2 is met, he will want to do a new biopsy of the remaining spots on my liver to confirm whether they show any evidence of the NEC or are just hemangiomas, which are clusters of blood vessels, or scar tissue, or anything else other than cancer. The biopsy results have to come back not showing any signs of the cancer.

4) All other health checks on my heart, kidney function, etc need to come back good. In other words I need to be in very good health and the chemo needs to have not caused any catastrophic damage to my organs. These are checks that everyone going through a transplant needs to meet, but they would hold me to extra high standards.

5) If all other conditions are met and we move forward with a transplant, he would only perform the transplant if we are able to find a 10/10 match. Many people are able to go through with transplant with a less than complete match, from a parent or child or less than full match unrelated donor. However with all the other risks of complication for my case, he would only feel comfortable moving forward if we found a 100% match, which would lower the risk of other complications and of developing GVHD.

So, its not a yes, but its not a no. If all of the conditions are met a big part of the decision will come down to Alan and I making the choice of whether I want to take the risk of the transplant or not. As I've said before and will say again, I'm not currently feeling 100% confident that I do want to take the risk.

My thoughts on transplant

Dr. Bixby says that without the transplant, there is a 95% chance that the leukemia will come back. And in most cases it comes back within less than a year. At that point I could try to do more chemo, but the chances of the chemo working during a relapse are less than the chances were for me to get into remission in the first place (which was low to begin with due to the fact that the AML was caused by the previous chemo) 

With the transplant, there is still about a 65% chance that the leukemia comes back. Which is pretty high, considering the risks that I would be taking, and the sacrifice to quality of life that I would be making in order to get the transplant. Dr. Peres said that while that is the case, with the transplant I would be looking at a longer time in remission before potential relapse, years instead of months. However, I have to wonder if that is really the case.

I have joined several facebook support groups for AML patients and caregivers, and I have read so many stories through there of people who did the consolidation chemo and were given the option to go to transplant or not. At the time they opted to go to transplant to supposedly decrease their chance of relapse, they were enjoying a fairly good quality of life. Then they go through the transplant and had complications which severely diminished their quality of life. Or they had a relapse within 4-6 months of having the transplant, while still recovering from the transplant.

These stories terrify me. They make the decision of whether or not I want to pursue transplant so daunting. Because if I am in remission and enjoying a good quality of life, do I want to sacrifice that for something that is kind of experimental (given my history) and also not a guaranteed cure? Would I be better off to enjoy 6 or 9 months of happiness and then have a relapse, than to put myself through the torture of a transplant and still potentially have the same outcome?

These are questions that I don't know how to answer. I don't want to die. I want to do everything I can to prolong my life. But if I have to die, I want to say that I was living life while it happened. Not that I was pathetic and miserable in a hospital bed. So, these are the stories and thoughts and decisions that keep me up at night.

Tomorrow we head to Houston. We will (hopefully) spend the weekend sight seeing before meeting with Dr. Alousi at MD Anderson on Monday morning. I will write another blog post next week about our experience there.

Thanks for reading!