As most people know, I've been admitted in the hospital at Karmanos in downtown Detroit since last Thursday. Yesterday we got more information on the exact diagnosis, treatment options, etc. I'm going to start at the beginning and give the full timeline of what's been going on leading up to this, the diagnosis, the treatment plan, etc.
A lot of people have been reaching out to check on me, get status updates, and offer help. Please don't take offense if you have reached out and I haven't responded. I love and appreciate everyone who is concerned and thinking about me, but I have been getting pretty overwhelmed between that and everything else going on.
It is very hard for me to ask for or accept visitors or help, because I think of it as inconveniencing someone else for my benefit which makes me feel guilty. I know I need to let go of this, and we are working on something that will hopefully make it easier, details at the end of the post.
March 12, 2018
I went in for my routine every 3-month PET scan at Karmanos, accompanied by a blood draw. The PET scan is to monitor the status of my neuroendocrine carcinoma, which was diagnosed in May 2016.
March 14, 2018 - daytime
I met with my oncologist to receive the results of my testing. The PET scan had showed one lymph node in my lower right abdomen that had FDG uptake, compared to no uptake in December. My doctor said he wasn't concerned at this time, and that there would have to be either widespread spots with uptake or the same spot 2 or more scans in a row to cause concern.
March 14, 2018 - evening
Over the course of the day I started to experience pain in my left shoulder. By bedtime the pain was in my left rib cage, radiating into my chest and my back, and extending all up and down my left side. I asked Alan to take me to the Emergency Room (Beaumont Royal Oak) and by the time we got there the pain was extending to my neck and jaw as well. I was really convinced I was having a heart attack and my blood pressure in the triage room read something like 170/120. The trip to Beaumont ended up being an overall waste of time as the EKG came back clean and soon the aspirin I had taken before leaving the house (thinking heart attack) had kicked in and my pain subsided. Beaumont did not even draw any labs at all. The doctor pressed on my shoulder and told me that I probably have tendonitis, and told me to follow up (again) with my Primary Care Physician for all my pains.
March 16, 2018
I went to an appointment at my PCP to follow up on my pain, which has been ongoing since around July or August. Every time I go in for this type of pain my PCP has told me that I have costochondritis. At this particular appointment she decided to draw some blood and also set me up with a referral to get a CT to check for Pulmonary Embolism (PE) since I was having continued pain in the area.
March 30, 2018
I had a CT with PE protocol at Beaumont in Royal Oak and it came back clean
April 4, 2018
My PCP called to let me know that she reviewed the bloodwork from March 16, and that the results were concerning. They had identified something called "blasts" in the blood, which are immature white blood cells. Essentially your bone marrow manufactures your blood cells and if they are getting pushed out of the marrow into the bloodstream prematurely, that indicates a problem with the marrow.
When this happens, it makes less room for your "normal", fully functional blood cells, which means your blood doesn't function properly (in terms of clotting, preventing infection, etc). The issue that they suspected was Acute Myeloid Leukemia (AML), or more specifically Therapy Related AML (t-AML) which means that the condition was likely caused by a previous chemotherapy drug that I had taken, most likely the Etoposide that was used to treat my High Grade Neuroendocrine Carcinoma.
She said that she wanted to send these results to my oncologist and consult with him on next steps.
April 5, 2018
I just so happened to also have a head cold / sinus infection during this week that had started as a sore throat on Monday and was progressing with new symptoms each day. I woke up on Thursday morning and the sinus condition had worsened 10 fold, so I called to see if I could get into my PCP, and figured it would also be a good chance to talk to her about the blood counts.
While there, she said that she had consulted with my oncologist and was going to draw blood again with a stat order on it, and that my oncologist's office was setting me up for an outpatient bone marrow biopsy for the next day.
My oncologist called me back at 6pm that same day to let me know that the blood work from that morning had come back, and that the results were much worse than the previous draw so they were arranging for me to be a direct admit to the Karmanos wing at Harper Hospital in Detroit that night.
We were on our way to the Dashboard Confessional concert at that time, and so I arranged to be able to be admitted after the show. We came in just before the 10pm cut off (otherwise we would have had to go through the ER to be admitted), got hooked up to IV fluids, heart monitors, etc.
Friday, April 6, 2018
Several teams of doctors came to visit on this day. When you stay in the hospital you are followed by an Internal Medicine / Hospitalist team as well as any specialist teams that you have. Around 2pm the biopsy team came to my room to perform the bone marrow biopsy.
The procedure was performed right in my hospital room, and it was excruciating. I was laying on my side, with my knees brought up to my chest. Alan was allowed to stay in the room, using one hand to hold my hand and the other to hold down my legs, so that I didn't kick out in pain during the procedure. The doctors began by administering some lidocaine to the surface area, and then progressively going deeper and deeper with the needle to numb the different layers of tissue until they got to the bone. Then they inserted a 9 inch, hollow needle with a serrated saw type end.
Although the lidocaine was numbing, I could still feel a lot of pressure during the procedure, and occasionally some pinching pain which required them to take the saw-needle out and go back in deeper with the lidocaine. Once they got to the bone, they had to cut away at it and suck out the marrow with a syringe. According to Alan (since I couldn't see) they took 3-4 syringes of marrow, and the lab technologist was preparing the samples into slides as they worked to make sure the sample was good.
Once this was finished, they sent it off to the lab.
Saturday April 7-Tuesday April 10.
These were fairly uneventful days. My sinus issues continued to progress so while waiting for the biopsy results they had a CT taken of my sinus cavity and had an ENT team run a camera up my nose. I also met with the infectious disease specialists. Over the course of these days I was put on: Flonase 1x per day, Afrin 2x per day, Robitussin with Codeine, 4x per day, and amoxicillin 2x per day. I was also able to (eventually) receive humidified oxygen. As anyone who has stayed in the hospital can attest, they are very dry, which was only exacerbating my sinus symptoms. I am still experiencing some congestion and a very violent cough, but feel much better today than I did over the weekend.
Wednesday, April 11
Biopsy Results
The hematology oncology doctor came to my room to let me know that they had gotten the biopsy results back very late last night. There are still some additional tests being run for mutations that could determine whether we are looking at a better or worse response to treatment based on those, but the diagnosis is confirmed as being Therapy Related Acute Myeloid Leukemia (t-AML).
This is a very aggressive disease, that has worse outcomes and is less responsive to treatment than traditional cases of AML.
The Treatment
The standard first line of treatment for people with any type of AML is something called a 7+3, which is a continuous 7-day infusion of one chemo drug (Cytarabine), with 3 of the days having a second drug (Daunorubicin) in tandem.
I mentioned to the doctor that I had seen some research about a new drug that was approved for t-AML last year after a trial at Moffitt Cancer Center, called Vyxeos, which is basically those same two drugs, but in a different combination and dosage. With this treatment you receive approximately a 90 minute infusion on days 1, 3, and 5 of the cycle.
He talked this over with the head of the Hematology Oncology department and they agreed that if I wanted to pursue this route instead, they believed that as a worst case scenario I would have the same outcome as with the 7+3 and with a best case I could have a better outcome. This combination also has a chance of less overall toxicity.
In either case, this chemo is quite a bit more intense/toxic than the previous chemo that I was on for my Neuroendocrine Carcinoma. Although the treatment itself will only last between 5 and 7 days, in general people stay in the hospital 1-2 additional weeks in order to recover from the effects of the chemo (primarily issues related to low blood counts like infection)
The follow up
The first cycle of chemo is called Induction phase. Once it is completed the treatment should have essentially erased all of the cells from the bone marrow (good and bad). Follow up is done in 2 phases.
After 2 weeks, a second biopsy is performed. At this time if the leukemia cells are still present, the treatment is considered failed. If nothing is present, you have to wait another 2 weeks for the normal cells to replenish, and then perform a 3rd biopsy. After the 3rd biopsy, if the normal cells have come back with the leukemia cells, then the treatment is considered failed. If they came back with no leukemia cells it is considered "in remission", and a couple more rounds of treatment, called consolidation may be performed. In either of the 2 follow up biopsies if the treatment is considered failed, treatment would move to a 2nd line chemo (TBD)
The Statistics
This is the part where I am going to get brutally honest. I'm not going to sugar coat anything here. Because while I will remain positive and do all that I can to overcome this, AML on its own has a very poor prognosis. Therapy related AML is even worse. For the study that led to the approval of the Vyxeos drug, the average survival rate was ~6 months for those who did the traditional 7+3 treatment and ~9 months for those that received the Vyxeos version.
When I asked the doctor what my prognosis would be if I walked out the door today with no treatment, I was told that it would likely be only weeks.
The Decisions
Based on all of this, Alan and I talked things over, and I have decided to start the Vyxeos treatment as soon as possible at Karmanos. The biopsy results were overwhelmingly obvious that the diagnosis is AML, because the blasts % in the marrow was 90% (anything over 20% is considered AML), and all of our research has shown that the standard first line treatment for any AML is the 7+3 chemo, or the new alternate of Vyxeos.
Due to the extreme aggressive nature of this disease and the fact that we were give a prognosis of weeks if I forgo treatment, we did not think it is wise to delay an extra week or more to have the biopsy evaluated somewhere else before beginning treatment. We do, however, plan to start the process of getting evaluated at UofM while I begin the treatment at Karmanos, so that if the first treatment is unsuccessful we can get multiple opinions on what to do next.
How you can help
I am allowed and would love to have visitors! But, it's just very overwhelming and hard to coordinate when multiple people are texting or calling and I get distracted when nurses or doctors walk in, won't always be sure of when I might be feeling sick, etc.
To try to help coordinate this, we have set up a google sheet listing days through the end of April for now. We will black out times where we just want to have time to ourselves or if I'm feeling too sick. Because the effects of the chemo will be unpredictable, please wait to get a confirmation text from either me or Alan on the day of to make sure I am still feeling up to visitors. As we figure out a schedule for when Alan will be going home to check on the cats, do laundry, etc we will highlight those on the sheet. Since Alan will be basically living here with me the next couple weeks, I'm not in much danger of feeling bored or lonely except for those times when he goes home.
We've also added a second tab to the visitor sheet that lists things that we could use while here. Drinks, snacks, a meal that isn't hospital food, etc.
CLICK HERE - Visitation Sign Up and Things We Need
As a final note, because of all of this I have had to once again go on full time disability from work. Because I was still on "partial disability" working a part time schedule after returning from my previous cancer diagnosis and treatment, this still counts as the "same claim" from the point of view of The Hartford insurance company. As a result, I am placed automatically on long term disability and will only receive 60% of the amount of pay I received prior to going on disability in May 2016. This equates to a loss of almost $2000 per month. While we have some savings this time around, since we are unsure how long I will need to be out of work we have decided to post the Go Fund Me page and a link to PayPal in case anyone has interest in showing financial support.
CLICK HERE - GO FUND ME
CILCK HERE - PayPal
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