Hello, again, I know it's been such a long since my last update. I'll try to catch everyone up. Fast forward to almost 2.5 years forward, since then, due to a T2 spine progression where I had some tumors grew while I was on the LDK or Zykadia trial, after a cycle or 2 of Cyber-knife targeted radiation, Dr. Neal switched me to the new FDA drug in pill form called Alecensa (alectinib) that was approved on Dec 11, 2015.
When taken after a meal, it was supposed to be less intestinal pain and cramping. I've read how others on Inspire.com who were patients responded and they all pretty much liked it better than LDK. As soon as I received in the mail, I took it and it was easier on my stomach to take. I tolerated it pretty well, although I'd still get get some stomach issues, it wasn't too bad.
However, results show that in 2 months, after a CT & MRI scan, there was a slight progression in my left lung showing some fluid and some tumors starting to flare up in my stomach lining as well as some small tiny tumors on my brain. Dr. Neal then suggested I my treatment switched me back to Zykdadia (or LDK) since under that pill, I was relatively stable with active growth all 2.5 years!
But, going back to this Zykadia treatment this time in Oct-Nov 2016, my pain at night started to fire up where I could barely sleep at all. The pain grew each night and my Dr soon prescribed 2 Norcals and Oxycodine for pain. And since I couldn't sleep, a sleep pill as added and 2 types of anti nausea called Zofran and Compazine and 3-4 types of constipation were added (Senna, Collace, Miraleax, and some other liquid medicine including suppository and enema).
After trying LDK, scans show it was not effective, so Dr. Neal switched me back to Chemotherapy to just Alimpta.
I had two 2 cycles of Alimpta once a week and ever other week off. Well, within 2 weeks, after it, my hair all started to fall off and pain also grew to be intolerable. By the third round, some lab results indicate high levels of liver enzymes and bilirubin; which indicated some infection. So, we were told to rush to Redwood City to get a an ultrasound of my stomach.
As soon as we were done, on our way home, we received an urgent call to rush to the Stanford ER Department to get myself admitted into the main hospital for further tests and ended up getting admitted in the hospital for 9 days. They determined that I had a an opening in my gall ball bladder as well as some infection in my pancreas. So, a metal plate was installed to close up the opening on my gall bladder and a temporary easy to flush stent was put placed in on left stomach.
After wards, complications arose where I lost a lot of blood during the endoscopy that they needed to to do two fluids of blood transfusion to keep me stable. From there on, I was kept for a few days to monitor how I was doing. It was determined that my stomach lining as well as the lining of my brain tumors (Leptomeningeal enhancement along the inferior frontal lobes) had grew. This means very bad, devastating news. It means, that my treatment isn't working and I am out of treatment options. I knew it was coming since my pain in my stomach grew more and more unbearable and Dr. Neal had to increase the pain medication to a higher dose.
With my health declining since chemo doesn't seem to help, and me feeling weak, having intense pain and tumors slowly growing, I am starting to feel, the end is quickly coming. However, I still has a sense of hope to keep fighting and praying for a miracle. So, please keep me in your thoughts too and wish me well. Hugs.
When taken after a meal, it was supposed to be less intestinal pain and cramping. I've read how others on Inspire.com who were patients responded and they all pretty much liked it better than LDK. As soon as I received in the mail, I took it and it was easier on my stomach to take. I tolerated it pretty well, although I'd still get get some stomach issues, it wasn't too bad.
However, results show that in 2 months, after a CT & MRI scan, there was a slight progression in my left lung showing some fluid and some tumors starting to flare up in my stomach lining as well as some small tiny tumors on my brain. Dr. Neal then suggested I my treatment switched me back to Zykdadia (or LDK) since under that pill, I was relatively stable with active growth all 2.5 years!
But, going back to this Zykadia treatment this time in Oct-Nov 2016, my pain at night started to fire up where I could barely sleep at all. The pain grew each night and my Dr soon prescribed 2 Norcals and Oxycodine for pain. And since I couldn't sleep, a sleep pill as added and 2 types of anti nausea called Zofran and Compazine and 3-4 types of constipation were added (Senna, Collace, Miraleax, and some other liquid medicine including suppository and enema).
After trying LDK, scans show it was not effective, so Dr. Neal switched me back to Chemotherapy to just Alimpta.
I had two 2 cycles of Alimpta once a week and ever other week off. Well, within 2 weeks, after it, my hair all started to fall off and pain also grew to be intolerable. By the third round, some lab results indicate high levels of liver enzymes and bilirubin; which indicated some infection. So, we were told to rush to Redwood City to get a an ultrasound of my stomach.
As soon as we were done, on our way home, we received an urgent call to rush to the Stanford ER Department to get myself admitted into the main hospital for further tests and ended up getting admitted in the hospital for 9 days. They determined that I had a an opening in my gall ball bladder as well as some infection in my pancreas. So, a metal plate was installed to close up the opening on my gall bladder and a temporary easy to flush stent was put placed in on left stomach.
After wards, complications arose where I lost a lot of blood during the endoscopy that they needed to to do two fluids of blood transfusion to keep me stable. From there on, I was kept for a few days to monitor how I was doing. It was determined that my stomach lining as well as the lining of my brain tumors (Leptomeningeal enhancement along the inferior frontal lobes) had grew. This means very bad, devastating news. It means, that my treatment isn't working and I am out of treatment options. I knew it was coming since my pain in my stomach grew more and more unbearable and Dr. Neal had to increase the pain medication to a higher dose.
With my health declining since chemo doesn't seem to help, and me feeling weak, having intense pain and tumors slowly growing, I am starting to feel, the end is quickly coming. However, I still has a sense of hope to keep fighting and praying for a miracle. So, please keep me in your thoughts too and wish me well. Hugs.
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