[lynette]

Dee,
I do believe that having HOPE is one of the most important things when dealing w/ any illness!!
Lynette

[lynette]

Hi Jack,
Yes, Ibuprofen can indeed cause platelets to decrease. It can also prolong bleeding time–the time it takes to clot. It can cause severe, prolonged bleeding if taken for long periods of time.
Lynette

[lynette]

Hi Dee,
I’m very sorry to hear about your situation. I would respectfully disagree with the idea of not using Trisenox. First of all, it is presently being investigated for AML. I’m not certain as to whether or not you would fit that category. My Mom who had RAEB-T then AML did have Trisenox. After 2 cycles, she achieved a complete remission. She had very few side effects. She now looks great.(Of course, we don’t know how long this will last). Everyone reacts differently. You and your doctor will best decide what is right for you.
My thoughts and prayers are with you.
Lynette

[lynette]

Hi Lucy,
It sounds like Neil had the concerns that I had regarding your Mom’s medical team. Dr. Ahmed is the Chief of Neoplastic Diseases. However, Dr. Robert Lerner is the Chief of Hematology. He has many years of experience at WCMC, but I do not know how many cases of MDS are seen there. It is at times very difficult to coordinate care with several different sub-specialites. I have a Clinical Teaching appointment at WCMC, and 90% of the patients complain that there is a lack of communication. You will need to be an advocate for your Mom.
Lynette

[lynette]

Lucy,
Hi and I hope that your Mom is doing better. I have know Dr. Ahmed for 20 yrs, and he is an excellent Oncologist. He is well respected. However, I do not believe that he is the Director of the Leukemia program. Dr. Karen Seiter is the Director. Perhaps her insight might be helpful. We did not take my Mom to WCMC. New York Presbyterian had more to offer in terms of Clinical Trials for patients over 70 yrs. old.
Be strong.
Lynette

[lynette]

Welcome to the Forum. I’m sorry to hear about your Mom. Is she being treated at a Center of Excellence? I see from your posting that you are from Westchester. My Mom lives in Dutchess Co., and I am a Nursing Instructor at Westchester Community College. The closest Center of Excellence is in NYC. Although, Northern Westchester Hospital is an affiliate of New York _Presbyterian(my Mom was treated there). Also, Phelps Memorial Hospital is an affiliate of Memorial Sloan Ket.
Do you know the number of blasts that were found at the time of the bmb? This is important is determining a treatment plan.
The shivering that your Mom experienced was most likely a reaction to the platelets. Benadryl, Demerol, and Steriods are commonly used to counter-act this side effect.
I know it is difficult–but hang in there.
Lynette

[lynette]

Hi Warren,
This is my first posting on the MDS web-site. My mom(74) was dx w/ RAEB-T in 8/05. She progressed to AML in 11/05. She was admitted to NY-Presbyterian(a center of excellence) for Arsenic(Trisenox) and ARA-C. After 2 weeks of treatment her blasts went from 40% to less than 10%. She received 2 add’l weeks of treatment, and is in remission. I have a been a nurse for 20 years and a Nursing Faculty for over 10 years. However, it is very different and difficult when the patient is your Mom. I have followed the web-site since August, but your question prompted my posting and response. Cyclosporin is an immune-suppressant. It is used in many different situations. It is commonly used in organ transplantation so that the new organ is not rejected. It also may be used in auto-immune diseases. In a BMT, the goal is to rid the body of the diseased bone marrow, and also to prevent rejection. Your side effect is not uncommon, although very difficult for many patients to tolerate. The neutrapenia that you are experiencing is a side effect of the chemo. It means that the chemo is destroying your white cells, specifically neutraphils. You are a risk for infection now, so be very careful–make certain that everyone who enters your room washes their hands (or uses anti-bacterial gel). Avoid any visitors who may be sick. Finally, don’t eat any foods that are not cooked thoroughly. Good luck!!

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