Forum Replies Created
-
AuthorPosts
-
HaroldMember
Sarah,
Any news from your trip to Minnesota? Is Charlie feeling better and regaining some of his strength?HaroldMemberI’ll be praying for Christopher’s speedy recovery and for the family as you all face this crisis. Keep the faith.
HaroldMemberSarah and Charlie,
Godspeed on your trip. I’ll be cheering you on and praying for success.
HaroldMemberJody, I think most people hear within 1 week. Preliminary results (from pathology) are available in 2-3 days and the final report in about one week. I usually have my BMB done on Monday afternoon and the doctor calls me on Friday with the final report.
HaroldMemberCaroline, I have no idea what kind of heart medicine your Dad may be taking but Digoxin (Lanoxin)is a common drug used for congestive heart failure and this drug can produce nausea and vomiting when blood levels of the drug get too high. Of course after 15 years one would think the dose has been well established. But there could be some reason the drug is now accumulating in the body at levels which are in the toxic range and produce nausea and vomiting.
HaroldMemberBarb, there are several different anti-nausea drugs. The newer drugs (Zofran, Kytril, Anzemet) seem to work very well. Compazine (prochlorperazine) is an older anti-nausea drug that is sometimes used and it is often not as effective.
HaroldMemberSandy, chemotherapy is usually dosed by square meter of body surface area (BSA). The startig dose for Vidaza is 75 mg per square meter (m2). You can take your height and weight and convert it to square meters. If you do not respond to the 75 mg dose after several cycles of Vidaza, the dose can be increased to 100 mg per square meter. A dose of 165 mg would be for a 2.2 square meter person. The average BSA for a man is 1.9 square meters.
HaroldMemberSarah, I am grateful that Charlie is on the road to recovery. I hope this surgery will make a big difference and improve the blood counts. Good luck on your trip to Minnesota; hopefully this will be a good option for Charlie.
HaroldMemberSarah, I know Charlie will do fine with the surgery; he will feel better once the spleen is removed. Good luck.
HaroldMemberDiner, I have not received any platelet transfusions during my Vidaza treatment. Prior to Vidaza treatment I was on an investigational drug and did receive 4-5 platelet transfusions while on the study drug. I did have a VERY significant local injection site reaction (redness, itching, bruising, swelling, rash) during the first cycle of Vidaza. I used Benadryl capsules and lotion/cream but I’m not sure how much they helped. The skin reaction during each subsequent cycle of Vidaza has been less and less. I think Vidaza is well-known for causing injection site reactions.
HaroldMemberDiner, I also have low platelets (20,000) and I have been on Vidaza for 11 months. I do not see large swings in my blood counts during the Vidaza treatments. It took 3-4 cycles of Vidaza before I saw improvement but it has significantly reduced the blast count in the bone marrow over the past 11 months. Good luck to you.
HaroldMemberSarah, I have received 4-5 platelet transfusions at Duke in the Adult Bone Marrow Clinic and I often drive myself to Duke from our home in Raleigh and back. Other than low platelets, I felt fine. Benadryl is an antihistamine and can make you drowsy, perhaps too drowsy to drive. It affects people differently. I have never had a red blood cell transfusion.
HaroldMemberDon,
I am sorry to hear about your loss. I’ll be praying for you.
Harold
HaroldMemberI was diagnosed with CMML 10/03. I have tried several study drugs at Duke University without results. I have been on Vidaza since 10/04 and I have had a good response, although not remission. I have been told the “average” response to Vidaza treatment is 8 months. My RBC is on the low side of normal, platelets hover around 30K, and WBC around 11-13K. I work every day and maintain a fairly normal life. I recently went to Fred Hutchinson for a consultation, specifically regarding bone marrow transplantation. This is a huge decision, especially for someone who generally feels good. I do think there is some confusion about CMML because it has been lumped together with MDS. There seems to be a growing consensus that it is a separate disease than MDS. I’d be glad to participate in a CMML group.
HaroldHaroldMemberSarah,
I often have 1-4% circulating blasts in the peripheral blood; my bone marrow blast will be 5-10%. At times the peripheral blasts will be 0%. I think the number of blood cells that are examined is small (typically 100) so it is not a definitive result. My doctor would “prefer” a 0% peripheral blast count but would not be concerned until it reaches much higher (15-20%). I just got back from a BMT consultation with Dr. Deeg at Fred Hutchinson. Good luck on your trip if you decide to go back again for evaluation. -
AuthorPosts