I was in the hospital from May 25 to June 2 for cellulitis infection.
While I was still in the hospital they got the OK from the study drug company to go ahead with the Neupogen shots to boost my neutrophils (those good, infection fighting cells) and so I started on those and had to continue the injections myself once going home. Luckily they came up pretty quickly so i only had to do 5 injections myself before being told i could stop. The injections are done in the stomach about 1 inch from the belly button on any side so my stomach is all bruised up because I had low platelets all during this time.
Unfortunately my hemoglobin and platelets did not follow suit so in addition to my MWF blood draws I also had to get platelets and red blood cell transfusions.
After stopping the shots they scheduled me for a follow up with Dr. Bixby and yet another bone marrow biopsy for June 12. I feel like this was about my 10th biopsy this year. I'm probably not far off on that count. It isnt normal to have this many biopsies or have them so frequently but between the study requirements and all this aplastic anemia stuff going on it's been necessary to more frequently assess what's going on.
On Monday June 9 I had a PET scan at Karmanos to assess the status of my Neuroendocrine Tumors and that scan came back with stable results compared to December 2018. I won't have to go back for another 6 months again.
At my appointment on June 12th Dr. Bixby said that regardless of the results of the biopsy done that day we would be restarting the trial drug the next week, but they just wanted to see the results before I started. He also said that i would be going down to only 500mg instead of the original 700mg.
The results of the biopsy came back showing a slight increase in the cells that produce healthy blood as well as around 5% "blasts" which the pathologist could not definitively say whether those blasts were immature cells due to the Granix shots I had been on or whether they were leukemia, but after 7 weeks of no treatment we kind of have to assume they are leukemia. So on Tuesday June 18 I resumed the study drug at 500mg.
Unfortunately that same day I landed myself in the ER. AGAIN. So I'm instructed to stop the study drug again until I'm out of the hospital.
On Monday I had been feeling a little sick to my stomach but chalked it up to having had especially bad eating habits over the weekend. By Tuesday morning my stomach was hurting pretty badly and by Tuesday afternoon I felt like I was constantly on the verge of throwing up and my stomach was getting these shooting pains that put my pain level at a 10 and it hurt worse with movement or touching it.
I called Dr. Bixbys office about this and they said to go to get evaluated for appendicitis or internal bleeding, especially since my platelets had been at 9 when I had my blood drawn Monday (I was scheduled Wednesday morning for a transfusion). We got to the UofM ER around 5 and after several hours including blood draws, platelet transfusion, ultrasound, and CT Scan they determined that I had an inflamed/bruised area in my small intestine. Basically this can just happen if you have low platelets. For reference a "normal" level of platelets is 150, mine had been 9 on Monday and were 2 when I arrived in the ER on Tuesday.
Treatment for this is to keep my platelets above 20 via transfusion, digestive rest, and observation. Digestive rest included a period of not eating or drinking anything. Since I told them other than a smoothie I hadnt been able to eat since dinner on Monday I was allowed to advance to clear liquids on Wednesday afternoon. Clear liquids was basically just broth, jello, and juice. I got through that ok and advanced to full liquids on Thursday which included creamy soups, pudding, cream of wheat, and milk products (yogurt, ice cream, milk shakes, etc). It's Friday now and I was allowed to advance back to regular food.
Hopefully I will be going home Saturday or Sunday as long as I dont have any issues with the regular diet. Once I'm back home I will resume the study drug again.
My next appointment with Dr. Bixby will be on July 3.
