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Sunday, May 24, 2015

Unexpected - treatment schedule

I just realized that most people don't know what my treatment schedule is.  Seems I have been living within my own mind on this one. So here it is and I can refer people to my blog.  :)

I was diagnosed on3/17/15 with Acute Promyelocytic Leukemia in the ER. Needless to say that Saint Patricks day is no longer lucky for this Irish Girl! I was immediately admitted to UNC Chapel Hill and started the induction therapy part of my treatment.  It was a 36 day cycle in the hospital and I was released on day 37. On a side note - it was awful - we'll just leave it at that.  But at your lowest you find out just how many friends and people who love you you truly have.

I had to have a port installed. The port is a Bard Power Port: Bard Information. A port is something that is implanted under the skin and allows clinicians to access larger veins for just about anything - such as blood work, CT or CECT scans, chemo, etc...  It is in place instead of having to use IVs, which we all know I am now a horrible stick. It takes a conscious sedation procedure so that I can react if need be. It was not the most pleasant procedure, but it wasn't awful either in consideration of all the surgeries and procedures I have had done in the past.  Especially when you consider that I have this in place of the fact that I won't have to have IVs as a result. We have named my port Rupert and it is still a "baby port" and can occassionlly give me pain, etc... If I had the port installed earlier I would have started my chemo earlier.  My wonderful doctor was ready to start it up to a week after I left the hospital, but I needed the port installed and it wasn't there.  So we had to wait for the port and so the chemo started 2 weeks after I left the hospital.

Right before the port was installed I had a bone marrow biopsy after leaving the hospital to see the how the induction therapy had done. It was not super fun either, but not awful, and the results were amazing.  According to my doctor 98% of the people with my results never saw APL again.  So I am amazingly grateful.  The chromosomes they were looking for for my APL were undetectable.  Thankk you God.

Back to Chemo. 2 weeks after leaving the hospital I was able to start my first consolidation treatment and we were able to arrange having it at Waverly Hematology with Dr. Suzanne Kirby who is familiar with my oncologist at UNC Chapel Hill - Dr. Hank Van Deventer. This was a huge answer to prayer. My first consolidation treatment is 28 Days - Monday through Friday with the weekends off. A little confusing but I hope you are following me. I am taking ATO (also known as Arsenic - no comments please) through IV at Waverly for about 2 hours every day as well as ATRA by mouth twice a day. I am allowed to take the weekends off.  The ATO comes through my port. The 28 days of treatment comes out to be about 5 weeks.  I am about 2 weeks in so far.  So far my numbers have not been awful. We will see how it goes.  One of the side effects of both drugs is headaches.  Seriously. I have no words. Another side effect is dry eye. My make up hates me.  Also chapped lips.  This is Pam here. Ugh.

After the first consolidation round we will do the second consolidation round.  It is also 28 days like the first one, but the drugs follow a different regimen.  I will be doing the ATO by IV Monday through Friday as before, but the ATRA will be Monday through Friday on weeks 1, 3, and 5. I will also be doing this consolidation round at Waverly Hematology.

Currently during my consolidation rounds I have EKGs on Mondays.  This is because some of the side effects effect my heart and they want to check to make sure my heart is OK.  I also have blood work on Monday, Wednesday and Friday to make sure I am taking the drugs well.  They can do the blood work through my port.

After both consolidation treatments the current plan is to do another bone marrow biopsy to check how treatment is going. All expectations are that it should be fine.  Then I will start what is called the Maintenance Phase.  The maintenance phase is all oral and can be done at home and will be based on 3 month blood tests. I should be at a point where I can recover enough from both the chemo and my previous stroke in the hospital that I can hopefully get to a point where I can get back to work and participate in the maintenance phase while being at home and at work. I hope that makes sense.  The maintenance phase will be anywhere from 1-2 years and will be based on the blood work.

So this has had a lot of information in it, but I hope it answers a lot of your questions.  I think it has all of the information I have in it at the moment, but if there is not anything in it that you still have questions on please let me know. I would be happy to answer them.

Thanks.


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