June 1, 2018 - 3 of 3 What does remission really mean?

As anyone who follows my posts on facebook already knows, the results of my May 16 biopsy showed no evidence of leukemia, this means that my disease is currently considered to be in remission.

What does this really mean???

A lot of people have been asking me what does this mean, so I want to put this at the beginning of the blog, ahead of all the details, instead of at the end. 

For starters I will accept and acknowledge that is great news because this was not the statistically likely outcome. I feel very fortunate to have received these results. BUT it does not mean that I am cured, and am far from out of the woods as far as this disease goes.

When the bone marrow sample is taken and looked at by pathologists, they look at a sample of 500 cells under a microscope and they count how many of each type of cell is seen in there (hemoglobin, platelets, etc.) So what the results tell us is that for the 500 cells that the pathologist looked at, there was no evidence of leukemia. But Dr. Bixby informed us that the marrow is made up of over 1 TRILLION cells, so this is not really a statistically significant sample but it is pretty much as good as you can get as far as getting an idea of what's going on.

So because of this, remission after the induction phase is always followed up with a consolidation phase; the body can handle about 4 rounds of the consolidation treatment, and they are spaced about 4-5 weeks apart. According to Dr. Bixby transplant is still the ultimate goal, even though Dr. Riwes and her team have said that they will not consider me a candidate. Dr. Bixby is still fighting for me though.

MLL Rearrangement

Dr. Bixby explained to us again at this appointment about the additional mutation that is within my specific type of leukemia. My cells had something that is called an MLL rearrangement, which means basically that during cell replication the 11th and 19th chromosome somehow got spliced and swapped their bottom halves, which is what makes my specific disease more aggressive and less treatable than some other types of AML.

Consolidation Chemo

We were explained that over 30 years ago researchers found that remission achieved during the consolidation phase of chemo is never sustainable, so with any type of AML a consolidation phase is begun, which I kind of think of as maintenance chemo.

For the MLL rearranged leukemia the most effective treatment during consolidation is a really high dose of cytarabine, which is one of the two drugs that I received during induction. The induction phase was 3 days of a drug called daunorubicin, which was injected for 20-30 minutes on each of the 3 days, and a 7 day continuous flow of cytarabine. My consolidation chemo will be a very high dosage of just the cytarabine given as 6 infusions spaced 12 hours apart. Each infusion lasted for about 3 hours.

Because of the extra high dose of the cytarabine I had to have additional precautions in place to protect against or determine certain side effects. I was put on steroids (hate them!) to help reduce nausea. I had to get drops in my eyes every 6 hours, and I had to do a coordination test an hour before each of the 6 bags of chemo. The coordination tests were things like a nurse had to witness me walking around the room or to the bathroom to tell that I could maintain balance, I had to sign my name to a piece of paper to monitor the consistency of my hand writing, and I had to touch my nose then the nurses finger back and forth as they moved their finger around.

Hospital Stay 

My time in the hospital was pretty uneventful. Either because I was on the steroids or because of only being on the cytarabine and not the daunorubicin, I didn't really get very much nausea or feel sick and tired like I did the entire week I was on induction. It also helped that the UofM hospital food was much better than the DMC. They had a robust menu and you got to pick and call in when you wanted your food to arrive, rather than a plate of breakfast arriving at 7am every day even if you weren't going to  be ready to eat until 10. 

The nurses and doctors there were all friendly, but we didn't get to know them too well since we only had to stay for 3 nights vs all the time that we had spent at Karmanos.

Discharge 

Once my final bag of chemo was done early Monday afternoon we were free to leave the hospital. I had to go to the clinic in Northville on Tuesday to get something called a Neulasta shot. This helps stimulate the production of white blood cells, and specifically neutrophils so that your levels recover more quickly. I also have to have my blood levels checked 3x per week to see if I need any transfusions.

Originally they had said that I could arrange to have my blood work and transfusions done at a more local clinic (since Ann Arbor is an hour away), but this is proving to be very difficult to coordinate. Dr. Yang from Karmanos has refused to keep me on as a patient in this capacity and there is some doubt over whether it can be properly coordinated through Dr. Philip (my oncologist for my neuroendocrine tumor) so the plan right now is to just make the long drive 3x per week. It really sucks because those are several extra hours of driving and probably hundreds of dollars of gas that we now have to take on. But all of this just solidifies the decision to go to UofM as being the right choice.

The expectation is that my levels will drop drastically about 7-10 days after the start of chemo, remain down for another 7-10 days, and then recover over the 7-10 days after that. Just in time to come back and do it all over again. Based on the fact that I started chemo on a Friday and my Neutrophils were already down to 700 (from 7100 on Monday) by Thursday, I am guessing I am going to be closer to the 7 day mark on that first part. Now I just need to be quarantined on fever watch for the next 7-10 days and hopefully my counts will start to pick up again. If I get a fever all all (100.5 or higher) then I need to go to the emergency room and I will be admitted until my neutrophils are more than 500 and any infection is cleared up.

Statistics 

We asked Dr. Bixby about the potential outcomes with and without transplant and also asked him to address some of the concerns we had about the transplant process based on our conversation with Dr. Riwes.

Dr. Bixby said that without transplant the average time for someone with MLL Rearranged AML to remain in remission is approximately one year. Some are much less and some are more, but the average is one year. There is less than 5% chance of there not being a recurrence without transplant.

With all the risk factors of transplant, Dr. Bixby said that the survival rate would be around 30%. So, still not great but better than 5%, which is why he is still advocating for the transplant for me.

Future Treatment

Now that I completed the first round of consolidation, there are 3 more to go. My next hospital check in is June 28. The next one after that will probably be early August and then early to mid september. There is some leeway in the dates of when I will receive it, so they said I can try to coordinate around my counts being good for certain events I already had planned, like a handful of concerts.

That's all the updates for now. Thanks to everyone for all of your love, support, prayers, positive thoughts, amazon shipments, and donations.