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Harold
MemberHi Greg,
At the start of the first Vidaza cycle on 10/4/2004, HCT was 37, WBC was 11.9 and Platelets were 38. At the end of the first cycle on 10/13, HCT was 36.9, WBC was 24.6 and Platelets were 35. During the first year of Vidaza treatment, there was not a lot of change in the CBC from the beginning of the Vidaza cycle and the end of the cycle. On 9/19/2005, HCT was 34.5, WBC was 10.2 and Platelets were 20. I began the 13th cycle of Vidaza on 9/19. On 10/10/2005, HCT was 35.9, WBC was 10.5 and Platelets were 16. By 10/28/2005, counts were HCT was 33.5, WBC was 12.2 and Platelets were 36 and I started cycle 14 (2 week delay in starting because of low platelets).
HCT has slowly drifted downward and is currently (4/21/2006) 25.4 (WBC is 23.2, Platelets 11). I started Aranesp on 1/9/2006 but it doesn’t appear to be helping. Platelets remain low (9-19 range). I began my 18th cycle of Vidaza on 4/24 and will finish up tomorrow. Cycles are now every 6 weeks instead of every 4 weeks in an attempt to give the counts more time to recover. CBC on Friday. I have tolerated the Vidaza well and the low counts have not yet caused any symptoms or problems.MemberI stayed on the full dose (75 mg/m2) 7 days on, 21 days off until 10/31/05. Since then I have been on the full dose (75mg/m2) 7 days on, 35 days off. The schedule was changed to 1 week every 6 weeks because of low platelet count (9-16K). The extra 2 weeks has allowed the platelet count to recover some (20-35K). I don’t have any symptoms with the low platelets. I am having a bronchoscopy tomorrow to help determine what’s going on in the lungs.
MemberGreg, how high is your Mother’s monocyte count? My monocyte count runs on the high side of normal and often above. I recently had a CT scan to check the size of my spleen. The scan showed a normal spleen but there was a “mass/nodule/consolidation/pneumonia/???” in one of my lungs and they are currently trying to determine what it might be. The doctors have said it might be “leukemia” cells. I’ve had CT scans and PET scans and I will have a bronchoscopy/biopsy in a few days. I don’t have any symptoms related to the lungs. I’ve been on Vidaza for a long time. I do have blasts in the marrow (10%) and occasionally there are a few blasts in the peripheral blood. How was your Mother’s lung involvement diagnosed? I have tolerated the Vidaza well and I hope the same for your Mother. Harold
MemberSarah, we are all thinking about you and praying for you during this difficult time. You have been such a great resource for so many people on the forum. Please join in again when you are able. “The one who blesses others is abundantly blessed.” Proverbs 11:25 (The Message)
MemberI believe the prices you quoted are close to the prices at which the drug will sell in the US. A lot of patients will have insurance which will pay for some or most of the cost of this drug. Celgene and other agencies may also assist patients with the cost of the drug. Revlimid is available under a special restricted distribution program (RevAssist). Only physicians and pharmacist registered with RevAssist will be able to prescribe and dispense Revlimid. Normally, pharmacist obtain drugs through a wholesale drug distributor, but with the RevAssist program, it may be possible that pharmacists will order the drug directly from Celgene.
MemberEddie, I was saddened to hear this news about your Father. I know your Mother was relentless in pursuing every possible treatment option. She has been a great support to a lot of us on the forum. We will continue to pray… for peace and comfort for her and for all the family.
MemberEddie, I was saddened to hear this news about your Father. I know your Mother was relentless in pursuing every possible treatment option. She has been a great support to a lot of us on the forum. We will continue to pray… for peace and comfort for her and for all the family.
MemberSuzanne, your “story” of optimism and encouragement is an inspiration to us all. What great news for you and your family, especially at this season. We all hope for your continued remission and good health in the New Year.
MemberAngie, Hydrea primarily decreases WBCs and less often affects RBCs and platelets. I don’t think Hydrea will have any affect on blasts. You can see a decrease in WBC in response to Hydrea in a matter of days (within a week) but it can also take longer. Vidaza is an injection (subcutaneous) so this is probably not the “oral” chemo the doctor was thinking about.
MemberMargaret, thank you for sharing this with us. It was a very uplifting tribute to Luke and an inspiration to us all. I’ll continue to remember you in the days ahead.
MemberMargaret, I am so sorry to hear the news about Luke. I have been praying for his recovery. Now I will pray for peace as you walk these next few days and weeks and months. I really admire your steadfastness during this time of Luke’s illness.
MemberMargaret, our prayers are with you. I hope Luke sees some improvement soon.
MemberMargaret, I take my dose of Vidaza in two shots. Each shot is 3.2 cc (ml). It is injected in the stomach, straight into a fold of the skin as explained above. I believe the nurses use a 5/8 inch needle. Below is the Vidaza site which explains the preparation and administration. The medicine needs to be given soon after mixing; otherwise it will settle and clog up the needle. It can be rotated in the syringe to mix it up again.
http://www.vidaza.com/corporateweb/vidazaus/homeB.nsf/Content/Injections
MemberANC is the combined number of segs (mature neutrophils) and bands (almost mature neutrophils). So if the white blood cells are 60% segs and 6% bands (and 34% other), and the total WBC is 10,000, the ANC = (60%+6%) x 10,000 or 6,600. By convention this is reported as 6.60 but some labs may report it as 6600. So an ANC of .14 is 140 neutrophils and an ANC of 540 is .540.
MemberMarie, my heart is heavy also. I have been praying for Christopher and for the family. Maybe some day we will understand this better. In the meantime I’ll continue to pray for your struggle and for strength and for eventual peace.
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