April 24, 2018 - Visit with Leukemia Doctor at Karmanos (spoiler alert: it wasn't good)

I've mentioned before that the process for being in the hospital and seeing doctors is a little weird. Karmanos has a large Hematology Oncology department, and all of the doctors specialize in different types of blood cancers and see their individual patients in the clinic. However, it would be too difficult for all of these doctors to also see all of their patients that are in the hospital every day in addition to seeing patients in clinic, especially when some of these doctors have clinic days at the Farmington Hills location. So one doctor gets picked as a rounding doctor, and they see all of the patients in the hospital (all of the blood cancer patients) for about a 2 week period and then a new doctor comes on rounding duty. If there is anything that comes up as part of your care plan where a major decision needs to be made, the rounding doctor would then consult with your actual doctor to make any final decisions.

So all of that to say that the guy who is the Leukemia specialist that would be handling my case, Dr. Yang, was not on rounding duty at all during my stay in the hospital and therefore I did not have a chance to meet him during my 16 day stay there. As I mentioned in my previous blog I received a call on the Friday before I was discharged to set up an appointment to meet him on Monday morning, which we went to yesterday.

The appointment did NOT go very well at all. In our opinion Dr. Yang has an extremely negative and pessimistic outlook about what the outcome of my treatment will be and my chances of having a full recovery and a normal(ish) life. He seems strongly against the idea of me being a candidate down the road for any type of bone marrow transplant due to my previous cancer, which I will get into more detail about later in this post.

The appointment started out with meeting some of the staff, like the nurses and having my blood drawn. The nurse accessed and drew blood from my port, because the PICC line at this point was so red and inflamed that she didn't want to use it for anything until the doctor saw it. We also went over a bunch of medical history and other things with the nurse. Once the blood was drawn we waited quite a while until a doctor came in who was a Fellow that is working with Dr. Yang right now. He came in first to ask us a bunch of questions, a lot of which were repeats of things we talked about with the nurse. After talking with him for some time he left to go share the information with Dr. Yang, and then eventually the two of them came back together.

Dr Yang started out by repeating some of the same questions again. He then started going over the process of having Leukemia, what the timing of treatments are, etc. He confirmed that I would be having my next bone marrow biopsy in the clinic this Friday, to confirm that there are no leukemia cells in the marrow post-chemo. Then we began to talk about what would happen next, assuming good results along the way. Another biopsy in 2-3 weeks after that (depending on how long it takes my counts to fully rebound) to confirm that the healthy cells came back and there were still no leukemia cells. Then 2-3 more rounds of chemo with a goal of keeping the leukemia in remission.

He then began to talk about the outcomes for AML and how remission is only a temporary thing and the ultimate goal is to try to get a cure through transplant. However, he wanted to learn more about the status of my neuroendocrine cancer before making any decisions on that. At that point he got a call from my original Oncologist at Karmanos who treated my Neuroendocrine Cancer, and excused himself from the room.

Once he came back, the conversation turned pretty grim. Dr. Philip had confirmed basically everything we thought we already knew, which is that I had an exceptionally great response to my initial chemotherapy and have had an even more exceptional post-chemo outcome, aka they would not have expected my tumors to still be stable 15 months later with no chemo. He also said that the future is very uncertain, because while they would expect the Neuroendocrine Cancer to grow again, it is impossible to say when that would happen.

Based on all of this, Dr. Yang seems incredibly pessimistic about the prospect of me being able to undergo a bone marrow transplant. I was geared up for this though, and I told him that I am 34 years old, and if my options are to die imminently of leukemia or to take the risks associated with a transplant, even though my other cancer might just grow and kill me anyway, those are risks I'm willing to take. His response was that it was not up to me.

He then continued to make arguments against the transplant. He said that even if I got a transplant, although a transplant is the only cure, it is not always a cure. So that is to say that you could go through the whole process of having a bone marrow transplant and the leukemia could still come back. Either not go away to begin with or relapse again at a later date. There are also risks of other side effects, like Graft Versus Host Disease (GVHD), which is essentially when the immune system that you acquire from the donor marrow attacks your own body. This can cause a wide range of issues. Then there is the fact that everything about my neuroendocrine cancer is so uncertain, and that it could start to grow again during or after the transplant, but we wouldn't be able to treat it at that time if it did.

My point was that, despite all of these risks, if the options are definitely die from leukemia, or get a transplant and maybe still die, but there is some chance that it all works out, I am willing to take all of the risks for the chance to have some sort of life. I am 34, not 64. If I was older then I can see myself not wanting to go through the hassle or take many risks, and just live out what time I have left peacefully.

The doctor repeatedly just kept arguing back that even if I didn't get this Leukemia, then the Neuroendocrine Cancer would just kill me anyway. I flat out asked him "so are you telling me that if this chemo didn't work, or even if I get in remission and then have a relapse, that instead of trying a transplant you will just let me die?"

His answer was something along the lines of well you have to remember that your neuroendocrine cancer is going to kill you anyway. 

And that very well may be. But I've exceeded expectations so far and even though they say it will grow again, that doesn't mean tomorrow, or this year. Maybe not for 5 years or 10 years. Maybe I got really lucky and it actually will never grow again. When I told the doctor this he said that I was being "very unrealistic" with these talks of 5 or 10 years.

Bottom line is, I'm not old. I'm 34. I'm relatively healthy other than my horrible luck at landing 2 very aggressive types of cancer back to back. I've been married for less than 2 years. I have a very young niece and nephew with another one on the way that I would like to watch grow up. I have friends and family and people that I love and they love me, and I'm not done spending time with them.

I'M NOT GOING TO ROLL OVER AND DIE JUST BECAUSE A DOCTOR IS AFRAID OF WHAT "MIGHT" HAPPEN. I WANT TO EXPLORE EVERY POSSIBLE OPTION FOR A LONGER LIFE. 

Now, maybe I'm getting ahead of myself with all of my outrage over this appointment yesterday, but the reality is that if I stay at Karmanos this man holds my life in his hands. And if my need for a transplant every becomes real, he seems pretty unwilling to allow it.

The thing we really need to be focusing positive energy on right now is that the chemo I just did worked. That the AML will be in remission and that it will stay that way for a long, long time. That the need for a bone marrow transplant won't even be a concern, because this chemo I just did knocked it so far into remission that it never comes back, and my neuroendocrine tumor also never grows.

But until that happens, just as a backup, we have arranged to have all the records sent to UofM and I am hoping to land an appointment there within the next week or so. They have to wait until they actually receive all of my records from Karmanos though before they can even set up my appointment.

For now, I am just kind of stuck keeping Dr. Yang as my doctor in order to get labs and transfusions and my follow up biopsies. Should know the results of the first biopsy about a week from now.

April 21, 2018 - I'm coming home

I've been wanting to update sooner, but I've either been too tired from chemo or my arm has been too sore from this ridiculous PICC line. Here are some updates about administrative drama, chemo, hospital discharge, etc.

Insurance Rules and Administrative Bureaucracy 

So in my last post I wrote about the two different chemo options, traditional 7+3 or newly approved Vyxeos, which are both combinations of the same two drugs: Cytarabine and Daunorubicin, but administered in very different ways.

We had asked about Vyxeos, which was approved by the FDA last summer, and on Wednesday evening Dr. Zonder, the rounding doctor at the hospital that week, had agreed it was a good option. I had expected to start chemo later that day, but the chemo nurse never came.

Thursday we learned that because Vyxeos was approved for outpatient use, there was some administrative/financial issue with them administering it to me as an inpatient. The approval had to go all the way to the chief medical officer of the hospital in order for them to get me the drug. Through this whole process my basic understanding is that my insurance reimburses a different amount for the drug depending on whether it is given inpatient or outpatient, apparently with a higher rate if it is outpatient. The hospital wanted them to pay at the outpatient rate but still allow me to be inpatient, and the insurance wanted the hospital to take the hit on the extra cost. They apparently went back and forth arguing this most of Thursday and part of Friday.

I don't know what the rates are, how much extra the hospital was asking the insurance to pay. How much of a loss the insurance was asking the hospital to take. All I know, is that I told Dr. Zonder on Friday morning that if they didn't reach an agreement by lunch time that day, I wanted to just proceed with the 7+3 protocol immediately, rather than risk delaying my chemo until Monday. Afterall, he is the one that had told me I would likely only live weeks if I walked out the door with no treatment, and here we were already wasting 2 days over bureaucracy.

Lines, Lines everywhere

After agreeing to start the 7+3 treatment, I learned of an additional complication. Since the cytarabine drug infuses continually over a 7 day period, it requires that you have at least two lines running into your body. One for the cytarabine and a second for anything else that has to happen during those 7 days: the daunorubicin, blood draws, blood transfusions, and any other meds I may need like nausea or even just fluids.

The problem with this is that my port, which I had put in my chest 2 years ago to avoid getting IVs while going through chemo the first time around, only had one line in (also called "lumens") Because of this, they said I would need a peripheral IV for the 7 days. This posed a huge problem for me, because I have very bad veins. To the point that a 4 day stay at Beaumont in my pre-port days had left me with almost every vein in both arms completely blown out due to the fact they kept collapsing. I didn't even want to imagine what 7 days would do, when I would be going through chemo on top of the sheer awfulness of having the IV.

They assured me that they have this "expert" IV woman, who would come and had special tools and would be able to very easily find a vein and give me a very good IV. The special lady comes with her special machine that shows shadows of veins on my arm, and she cant get anything on my left arm. So we switch to right. She finally lands a vein in my right forearm and hooks up the IV. When she flushes it, I immediately complain of burning. I've been here with an IV before, she probably stuck the vein too deep. When my doctor returned I was very unhappy. Not only was the IV already painful 10 minutes in, but it was positioned such that I didn't feel I could use my arm, particularly when it came to things like keeping myself clean after bathroom trips.

The doctor at this point said we could try something called a PICC Line. A PICC line is basically similar to my port, but doesn't require surgery. They feed a wire through a large vein or an artery into the chest and up to the heart. They then put the plastic tubing over the wire and pull the wire out. In the case of my port, the end of the tube is then connected to some sort of mechanism that is underneath my chest. To access it, a specially trained nurse uses a special needle that sticks into the mechanism and connects to the tube, thereby allowing for blood draws, infusions, etc. In the case of the PICC line, they go in through a vein in your upper arm, and then instead of surgically placing a contraption under your skin, the wire just dangles out of your arm until the PICC is removed. They can apparently stay in for years if there are no complications. The PICC line has to be flushed on a daily basis and also has a special bandage that goes over it since there is now basically just a big hole in your arm with a tube sticking out, and anything that gets in can cause infections and the line goes literally straight into your heart.

Anyway, I'm a little off topic but I opted to get the PICC line without much thought or research on it. I really regret it at this point. it is now over a week later and my whole upper arm is really red and swollen. I couldn't bend my arm at all the first 4 days due to the placement of the lines and the bandage, so it cut off most of my communication with the outside world.

Doctors keep saying its not an infection and they think its some weird reaction to the dressing glue. I'm currently on my 3rd different type of bandage for it, but it just seems to keep getting more red. I'm also constantly paranoid about it hooked on something and tearing it out or getting the little leads that dangle out dirty some how, as this can cause an infection that goes straight to my heart due to the placement of the tube inside. Now that I'm home from the hospital it has to be "flushed" with saline every day, so if its a day that I'm not being seen in clinic Alan has to do it for me at home.

Chemo Time

Once the PICC line was installed they scheduled a nurse from the chemo team to come up and get me started on my treatment. After more than 15 months of no treatment, I was really anxious about it. Especially since I had heard from some people who got extremely sick during this chemo.

The nurse arrived in her miniature hazmat outfit. That's right, the chemo is so toxic that the nurses have to wear a special apron over their scrubs and also double gloves when handling it. And this stuff is being injected straight into my blood. So the protocol for 7+3 is that you receive the cytarabine all 7 days, continuously. They hang one bag that goes for 24 hours and as soon as its empty they replace it with another one.

The daunorubicin is to be administered on any 3 days out of the 7, and apparently my doctors chose for it to be the first 3. But this drug is different from other chemos, because it did not come in a bag and just get hung to drip into my IV. This drug is bright red and it comes in a syringe which the nurse has to manually inject into my IV over a period of approximately 20 minutes. Sometimes they split the dose into 2 syringes so that the nurse's hand doesn't have to stretch so far when starting the dosage. I am not sure why, but when I saw the red liquid in the syringes and found out that it was going to be the first thing I received and that the nurse had to manually inject it, something inside me snapped. I started crying and saying that I wasn't ready yet. Eventually I calmed down and the nurse started the injection. At first I tried playing some music to keep myself calm but my nurse was really nice and we ended up talking through the whole process. Once she was done with that injection she hung the bag of cytarabine and was on her way. She let me know that she was off for the weekend but that a different nurse, who had accessed my port on my first morning, would be coming to do the injection for the next 2 days.

I already had barely eaten anything since the doctors came to us with the news on Wednesday. That was probably a big mistake, because the nausea that rocked me over the next 4 days made it nearly impossible to eat. I didn't vomit during the chemo treatment, but that was more likely a product of the fact that I was eating about 10 bites of food every day than the fact that I was handling the treatment well.

Another side effect from the chemo was extreme fatigue. Like fatigue so strong that even sitting in bed with my eyes open was too much. My schedule for most of the week was: wake up around 730 when nurses changed shift and came in for new vitals, and doctors started rounding. float in and out of sleep all day, pretty incoherent most of the time that I was actually awake. Maybe get like 2-3 hours of actual "awake" time in the late evening, then fall back asleep around midnight for the night.

Every day, multiple times a day, they would draw my blood to check various levels. They were looking to see that my Hemoglobin and Platelets did not drop below transfusion level, and if they did, they would order blood for me. There was another clotting factor, cryo, that I also received a couple of transfusions of. Pretty much every day during chemo I was getting one blood product or another. However they never would transfuse enough to get me into "normal' levels, just out of the critical zone.

So far I haven't lost my hair, but it is a side effect of the drug and we expect it to happen any day now. I have felt the pain and tingling sensation on and under my scalp, so I'm just waiting for the first big clump to come out. I've decided that I'm not going to wait for it to get stringy and look bad this time, as soon as a giant clump falls I am shaving it bald. Summer is coming and if you remember my comment from 2 years ago, the cool breeze feels so nice on a bald head anyway. This is almost 18 months of hair growth on my head right now, and I will be sad to see it go, but if this treatment can help to heal me I won't be that sad.

The end of chemo and going home

All week we kept talking about what to expect after chemo. We honestly had expected to be in the hospital another week or two after it ended, because of everything they told us. I was already receiving transfusions daily, and the doctors continually commented that the most severe drops in blood counts would come in the weeks following the completion of chemo. There was also the fact that the severe drops also make you more prone to infection.

So I guess it turns out that at the point when you've lived in the hospital for 16 nights, the hospital becomes more of a danger to you than being home. Things like norovirus, staph infections, and c-diff apparently run rampant in hospitals, and the longer you are there the more likely you are to get them.

The first clue that we would be going home soon was on Friday, when I received two different phone calls from the Karmanos clinic. The first was to make an appointment for Monday to finally meet my actual doctor in the clinic (because of how things work with rounding in the hospital, I hadn't met him yet) and a second to set up appointments for labs to be drawn on MWF of the next week. The doctors hadn't mentioned anything when they rounded Friday morning, and never came back Friday afternoon to explain this, but I went ahead and set the appointments anyway.

On Saturday morning when the doctors rounded they said that my hemoglobin was low and that I had to get a red blood transfusion. I thought this definitely meant that I wouldn't be going home any time soon. So I asked the new rounding doctor (they had just switched out the day before) about the calls I had received the day before, and she explained to me about the infection risk for long term hospital stays and said that I would be allowed to leave as soon as I finished my transfusion for the day. They thought based on all of my levels that the one bag of blood would hold me over until my clinic appointment Monday, where I could receive transfusions if necessary.

So, Alan began gathering ALL OF THE THINGS to take home. We decided it would be best to take two trips, so he began loading the car and went home while I waited to receive my transfusion. While home Alan was able to do some deep cleaning on the house to prepare for my arrival. Vacuuming, dusting, mopping, cleaning the bathroom and kitchen. He prepared the basement for the cats by moving their food and water dishes down there. Once I got an updated time for the end of my transfusion he returned to the hospital so we could gather the rest of our stuff and go home.

I left the hospital with a long list of prescriptions and instructions. I am taking an antibiotic, an anti-viral, and an anti-fungal pill. They also put me on the pill version of the depo shot to stop me from having periods. This is a precaution because my platelets are so low and apparently having a period when your blood can't properly clot could kill you. They also gave me some continued meds for my ongoing sinus issues and some cortisone creme for my swollen itchy arm (around the PICC line)

It is nice to be home. I feel almost normal. Except my cats are crying from behind the basement door, and I have to stop to catch my breath on the way to the bathroom. But other than that, almost normal.

This blog went longer than I thought it would, so I will split off to a second post to talk about my clinic appointment with Dr. Yang at Karmanos on Monday.

Thanks again to everyone for following my story and for all the help you have provided. We have stiffened up on visitors being allowed just because the fear of infection is so high, but if people wanted to help with anything at all, below is a list of ways to help:

WAYS TO HELP

Monetary Donation 

With me being off of work, Long Term Disability only pays 60% of my salary from May 2016 (since that is when I first became "disabled", regardless of the fact that this is now a new illness). Any monetary donation will be used to help pay our household bills while my income is reduced as well as go towards medical bills once my plan deductible resets on July 1.

The Go Fund Me page from before is still open, and I also have a PayPal link, which will not charge a fee on either end as long as you (a) have a bank account (not a debit/credit card) linked and (b) put it through as a friends/family money transfer (not for a good or service)

GO FUND ME

PAYPAL

Supplies Donation

With my low blood counts we are finding ourselves in need of more cleaning supplies than usual. Alan is mopping and lysoling the house on a daily basis, cleaning the bathroom 5 or 6x per day. We are discontinuing use of hand towels in favor of paper towels for hand washing because of the ability for hand towels to carry germs. Alan has started an amazon registry, where people can make purchases that will ship directly to our home.

AMAZON WISH LIST

April 12, 2018 - Therapy Related AML

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