April 29, 2019 - Weekly Updates

Wednesday, April 24, 2019

Today was Clinical Trial Day 15. Like every Wednesday so far, we had to head out around 6am to get my labs at 7 and an appointment with Dr. Bixby at 8. Then it was over to the study clinic for one set of pre-dose labs and EKG. Then after I took the pills we were able to go home. We were back on the road before noon, much better than our previous 2 weeks.

I talked to Dr. Bixby about some of the side effects I've been having which included:

- I'm always cold

- weird heating sensation in my left heel

- low grade fevers that come on in the evening then break with a cold sweat around 6am

- dull, constant headache + random electrical zaps through skull

- full body ache especially in ribs, lower back, and legs

The most concerning things are the fevers (if they spike higher I'll have to be admitted for infection protocol) and the body aches.

Today the body aches were so bad it was unbearable. I finally gave in and took some tramadol. I thought maybe my leg muscles just needed to be stretched so after we got home I suggested to Alan maybe I needed to go for a walk, so we went to Somerset.

While at the mall I needed to use the restroom and afterwards it took me 15 mins to stand up. I thought I was either going to have to ask a stranger for help off the toilet or get Alan to come into the women's restroom. My legs just weren't working properly to push me into a standing position.  I finally got enough leverage off the walls to get myself up, but it was pretty scary not being able to use my legs as normal.

After this we left the mall and I also needed help getting in and out of the car and up the steps of our porch. Our last step is really steep and it was hard to lift my legs, it felt like they had 100lb weights tied to my ankles, so I also thought I may not even be able to get into the house! Eventually I did get in and I just went straight to lie in bed.

After a few hours in bed I got up to get some food and my legs were feeling better but not 100% I dont know if the walking actually helped them but it was a delayed effect or what.

Thursday, April 25, 2019

Today was a day I've been looking forward to for a while. Alan got free tickets to see Aziz Ansari at Caesars Windsor and we got a free room for the night as well. Kind of a fake little 2 day vacation. I was worried my counts would be too low but we asked my doctor about it on Wednesday and he said no reason not to go if I was feeling up to it, just wear my mask and wash my hands.

Monday, April 29, 2019

The comedy show on Thursday night was really good, despite the fact I was in full body pain. Our comped tickets ended up being floor seats and the casino brought a wheel chair up to our room before the show so I didnt have to walk or climb steps which was a relief.

On Saturday morning I started having a slightly bloody nose so I got put on "no blow" restrictions. I called the weekend on call doctor to see if I should go to the ER and try to get transfused or if I should wait until Monday. She called Dr. Bixby to verify just because I was on the trial but the end decision was no ER unless I got a nose bleed that wouldnt stop with affrin spray and leaning my head back.

Saturday we also got the delivery for my IV at home magnesium, which Alan hooks up to run over 8 hours while I sleep. I woke up Sunday morning with my body feeling much less sore, but towards the end of the day I was in excruciating pain again. Did the magnesium again Sunday night (even though it's supposed to be every other day) and again woke up feeling better today, so I think the body aches are definitely magnesium related.

Today one of my nurses at UofM coordinated with the office of my Beaumont Hematologist for him to put in orders for me to get transfused 2 bags each of platelets and red blood without having to go in for a clinic blood draw first (since even if my counts weren't at transfuse level I am obviously very symptomatic). Once I got to my bed at the transfusion center they drew a CBC and my hemoglobin was 7.1 and my platelets were 1. That's not a typo, they were ONE. That terrifies me. On Wednesday I will be talking to my doc about what kind of transfusion protocols we can put in place for a Friday or Saturday transfusion to keep me from hitting these critically low levels over the weekend.

Soon after I got here another patient arrived to get platelets and then a tech arrived to announce she would be giving him a bone marrow biopsy in this room. To clarify the outpatient transfusion center is just a slightly larger than normal hospital room with 4 beds, one in each corner and you have the option of pulling a curtain for "privacy". Immediately upon hearing the words bone marrow biopsy I started to tense up and I felt a pain in the area of my last biopsy. My nurse noticed that I seemed to be freaking out a little just at overhearing it so she brought me a warm blanket and checked in on my a few times. They used a power tool on this guy, I could hear it. I do NOT get my biopsies done with a power tool. I would probably lose my mind at the drilling sound.

As far as how things are going with the trial, today is day 19. I'm starting to get sores in my mouth. My body still aches but possibly from the low magnesium. My good counts are obviously suffering a TON and it is effecting my quality of life to have to wait until Monday for a transfusion when I clearly needed it over the weekend. But my alternative there this weekend was the ER and probably getting admitted which i rather avoid. So we need to figure out a better schedule.

Thanks for reading!

April 22, 2019 - Clinical Trial Updates and Plummeting Counts

Finally, a non backdated post. I am really going to try to make an effort to post everything here from now on because I spent the better part of all my free time these past 2 weeks trying to update this blog so that it tells my story all in one place. I think I will use the blog as a place to draft updates throughout the week and then publish and post on Facebook about every week to 10 days when I feel i have enough content. 

So far the trial is going ok. Every day I have to take 7 pills of the trial drug. I can't eat for 2 hrs before or 1 hr after so I normally wake up, take the pills, and go back to sleep for at least an hour so I can sleep through all the fasting. On clinic days (every wednesday) I have to take the pills at the clinic because certain labs need to be drawn first. So I try to eat a small breakfast when we first get on the road assuming it will be at least 2 hrs by the time we drive, get labs, see my Dr. Etc.

Last week we had a bit of a snafu with regards to the trial. When I agreed to start it we were given an informational packet with the consent forms at the back. The packet outlined specifics including when we would have to come to the clinic and what tests would be performed on those days. 

If you read the last update you know that on the first day we had a long day with blood draws and EKGs every so often up until 8 hours after taking the drug. Well in the packet I got it said the next long day like that would be on day 15. But we got over to the trial clinic for day 8 and they said it was another 8 hrs of testing that day. We were quite a bit upset because I also had to get a biopsy that day and needed platelets that i assumed I could get that day, saving us a trip for Thursday.  But with them needing to check my levels I wasnt allowed to get any blood products that day. 

After a little back and forth with the nurse about this she brought in the clinical trial administrator who gave us a copy of her protocol calendar. It did show that the long day was scheduled for day 8 and not 15, but it also had a ton of typos in it including spots where it referred to the previous study 3201a instead of my study 3201b. It was like they did a very poor copy and paste job and just seemed highly unprofessional that not only was my consent paperwork different from the actual schedule but that their schedule named another drug. 

In the end we decided to continue with the long day even though I hadnt originally consented to it and the nurse was able to get us $20 in vouchers for the cafe since we hadnt planned ahead for another 14hrs away from home day. 

As for side effects of the drug so far, I have very bad gas and increased neuropathy specifically on my left side. Back 3 summers ago when I first started chemo for my NET I used to get this weird warming sensation in my feet, where they feel hot internally but of you touch my foot from the outside it isn't hot. That is back. I also gained 7 lbs from day 1 to day 8 of the trial. And my good counts seem to be plummeting. 

On day 1 of the trial my hemoglobin was already low so I got blood on day 2. My platelets had been holding out around 30 for weeks before the trial and by day 8 they were at 16 and I had a lot of bruising and some bleeding so I had to get platelets on day 9. I get my blood checked on Mondays as a touch point between clinic appointments and today (Apr 22, trial day 13) my platelets were only 4!! And my hemoglobin, which had been 9.5 last Wednesday was down to 7.6. 

For reference on these counts a normal platelet level is at 150+ but they dont normally transfuse you until you drop to 10 or have symptoms like severe bruising and bleeding. Which is why I was able to get transfused last week at 16. On the hemoglobin normal level is 12+ and I transfuse at 8.0 or symptoms of dizziness and short of breath. The fact that they dropped back down so fast is scary to me. It means I may need to increase my frequency of blood draws so that I can make sure my levels stay good or I may even need to go back inpatient if my transfusion needs are too frequent. 

On top of my good counts tanking so terribly another concern is that blasts have started spilling into my blood. Blasts (aka leukemia cells) in my blood is how they initially suspected I might have AML and how they confirmed my initial relapse in October. Once I started the Decitibine + venetoclax in November my blood blasts eventually went to 0% and up until day 1 of the trial (Apr 10) had stayed there. They were only at 1% on that day but still concerning that now the level of blasts in my marrow was great enough that it was coming through on my blood work too. And on trial day 8 (Apr 17) that had increased to 2%. So I was concerned that I've been on the trial drug for a week and the percentage went up not down. But my doctor said we cant really judge or be concerned the trial isn't working until we get through the first month and take that cycle 2, day 1 biopsy (May 8) . The differential isnt back yet on my blood draw for today so I wont know until tomorrow if the blasts went back down, rose more, or stayed the same. 

So since I needed transfusion so desperately today we were able to coordinate with my local hematologist, Dr. Ashkar at Beaumont, and I am here now getting my blood and platelets. This saves us a trip to Ann Arbor and the possibility of having to also go back tomorrow for extra bags or go through the ER at UofM because over there the transfusion clinics close at like 6pm and here they have a special 4-bed outpatient transfusion room that is open late. 

So that is pretty much all the updates through (almost) the end of week 2 of the trial. More to come later. 

April 11, 2019 - Beginning the Clinical Trial

*Backdated Post*

*Some content copied from Facebook Posts*

On March 27 I went in to have all of the pre-tests done for acceptance into the trial and to sign my consent forms. The pre-testing was pretty simple: blood draw, 3 EKGs run 5 mins apart, and a bone marrow biopsy. Ok, so the biopsy isn't exactly simple especially considering I had just had one done less than 2 weeks ago, but it was a necessary evil. 

While waiting for the trial to begin we got back the results from the March 27 biopsy and it showed that my blasts had gone up to 26% (from just under 7%) and I was freaking out because we still had another 2 weeks after that biopsy of no treatment so who knows how out of control the leukemia could get during that time. 

Finally day 1 of the trial came. It was a long day where I had to have multiple blood draws and EKGs, and we ended up leaving our house at 6am and not getting home until 8pm. Below is what I wrote about on Facebook that day.

Apr 10:

Clinical Trial Day 1 today.

Had to leave home at 6 to get here for my 7am blood draw.

Saw the PA for my doctor and the study coordinator then headed over to the research lab.

Before I could take my pills I had to have an EKG run 3 times, 5 minutes apart and have another sample of blood drawn.

Then I had to take 7 pills. Somehow cohort 5 is 700mg. Not sure how the math works out on that one, but ok. I'll have to take these 7 pills every day in addition to the 13 pills per day I already take for other things. No food for 2 hours before and 1 hour after.

Another blood draw 30 minutes after taking the pills. Another blood draw and 3 more EKGs at the 1, 2, 4, 6, and 8 hour marks.