My Visit to M.D. Anderson | Another Bone Marrow Biopsy & Aspiration

In case you did not know I’ve been participating in a research study at The University of Texas M.D. Anderson Cancer Center for over 3 years now, My Doctor is Dr. Srdan Verstovsek he’s been a key speaker at many of our past annual meetings.

2005 Annual Meeting - Dr. Srdan Verstovsek “Latest Treatments for Mastocytosis”
2006 Annual Meeting - Dr. Srdan Verstovsek — “Recent and Ongoing Studies for Systemic Mastocytosis”
2007 Annual Meeting - Dr. Srdan Verstovsek — “An Update on New Therapies for Systemic Mastocytosis”
2008 Annual Meeting - Dr. Srdan Verstovsek – “An update on new therapies for Systemic Mastocytosis”

I’ve been taking the Dasatinib (chemo pills) for a little over 3 years now. When I first started the clinical research study I was very sick. I was going into anaphylactic shock on a regular basis, the first time Dr. V (Dr. Verstovsek is known by many of his patients as Dr.V.) called me I did not wish to enter the study so I declined. A couple of months had went by and I had a severe Masto reaction to something I had eaten followed by a severe case of anaphylactic shock, I was also told I almost did not survive after waking up in ICU. When I was released from the hospital I immediately called Dr. V., I asked if I could still be included in the study? He of course said yes. Now understand this is NO cure but since I’ve been on the Dasatinib I have not been hospitalized, I’ve had some close calls. I still carry my shots and take all the required precautions, watching what I eat, staying away from strong odors, avoiding to much heat if possible and I still pay my friends son to cut my yard, these are only a few triggers I avoid. For the most part though the Dasatinib has been very helpful and I’ll continue to take my current protocol. I currently take 40mg of Dasatinib twice daily, 150mg Zantac 2 to 3 times daily and 1mg Xanax as needed. My protocol prior to the clinical study: Doxipin 10mg AM, Doxipin 25mg PM, Benadryl 25mg daily, Prednisone 5mg daily, Zanatac 150mg, Xanax 1mg as needed and Benadryl high potency shots 50ml as required. I’ve taken just about every drug known for Mastocytosis over the past 13 years. The current protocol I’m currently taking has been the best by far.

One of the drawbacks to being on this study is every time I go in for my checkup and to pickup new medication I have to undergo a new Bone Marrow Biopsy and Aspiration. I was trying to count for you how many of these procedures I’ve had done and to be honest I’ve lost count, I’m pretty sure it’s around 14. Now realize these people that do the biopsy specialize in just that, seriously they do a great deal of these every day probably over a 100. What I’m trying to say is it’s no backwoods hospital that may do a total of 1 biopsy a month. I’ll share more about the biopsy in a moment.

I wanted to share with everyone a couple of photos of the people I have entrusted with my well being. The first photo is of Dr. Verstovsek and his PA. (She was new and I cannot remember her name). Dr. V. has been great not only does he take my calls If I have a question he takes the time to answer my email. Even though he is very busy when I go to see him for my regular checkups I do my best to make him laugh or smile at least once before I leave. I’m very lucky to have him as one of my Doctors.








This lady here is Kay she was the research nurse for the study for a long time, she made sure I received my clinical meds along with making sure I turned in my pill diary. Kay told me something once, she said usually the ones who are starting to feel better get relaxed and don’t turn in their paperwork anymore. Needless to say she had to stay on top of me about my journals. I have to keep a day to day journal of when I take my Dasatinib in the morning and evening. Kay has become a very close friend even though she is no longer the research nurse she still works at the same clinic I go to for my checkups. Here is a photo of Kay and me.

I was excited to show Dr. V. my blog yesterday while in his clinic. He was also very excited to see me writing about my life occurrences while living with SM. He agrees having a positive outlook is always important.

I wanted to share a real detailed experience for those who have never had a Bone Marrow Biopsy and Aspiration by sharing detailed photo’s of the whole procedure but was not permitted to take pictures even though it was of me. Instead I’m going to describe as best I can how it went. Now remember everyone is different and everyone handles pain differently so what works for me may not work for you.

I took two 1mg Xanax about 30 minutes prior to my Bone Marrow Biopsy and Aspiration, this helps with the anxiety we tend to stress about the procedure so much beforehand causing ourselves to have complications before we even begin. I’m now able to use some type of lidocaine to deaden the area before they begin the procedure. I have my shots lying next to me in case I have a problem. Once the area is very numb they began the procedure. I’ve found that laying flat on my stomach and resting my chin on a pillow while using my hands to grip the sides of the head rest helps with the discomfort. You should only feel pressure when they begin to push down into your hip (bone marrow). Once they begin to pull the sample I feel a very sharp pain. Now the better your bone marrow is the more this will hurt. I was told the reason it may hurt more than other times is because our marrow has more good cells. When they begin the Aspiration I always ask them to pull it out slowly, not too fast. For me when they pull it fast it is more painful then when they pull it slowly.

13 years ago when I had my first Bone Marrow Biopsy and Aspiration I was unable to use anything to help with pain or discomfort, they had to do the procedure while I was on an epi drip and admitted in the hospital.

I almost forgot to tell you, when I first started the study I had to come back every month then it was every 3 months, 6 months and now I only have to come back once a year. I’m one of only a couple still having success with the drug, when I say success I mean I’m not going into shock left and right like before. Dr. V. did tell me they are starting some new studies and he would keep me updated on how that progresses.

If you have any questions regarding the above feel free to ask and I’ll do my best to answer.