Ron
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February 8, 2005 at 7:17 pm #3991PAG2005Member
Barbara,
I’ve very sorry to hear that Ron relapsed. I know how you must be feeling. I’m fairly new to this board. My mom has AML and she relapsed about 6 weeks after her first induction treatment was complete. It was such a shock. My mom is in her early 70’s. She went through the 2nd induction treatment with mylotarg and ARA-C. She was very weak at the end of treatment but once she came home she got stronger quickly. My mom still had 8% blasts in her bmb. We were heartbroken. The Doctor put her on Hydro for approximately 6 weeks and each week her wbc dropped and her blasts went down to 1% on her next bmb. My mom’s counts have been quite low since then and she has required platelet transfusions for awhile but slowly her counts have risen enough where she has been okay. It has been 7 months since she stopped taking hydro. I believe hydro will bring down the blasts. I’m just not sure how long hydro is effective. I will send you a note and you can email me if you have any questions. My mom didn’t have a bad reaction during infusion of mylotarg but I believe it did contribute to the low counts. Has you Doctor suggested just taking mylotarg? Please contact me if you have any questions. Pat
February 8, 2005 at 8:22 pm #3992gemloyearMemberDear Barbra, I was so sorry to read your post this morning. I guess I put too much hope in zarnestra,thinking that it was the new wonder drug. We will continue to pray for you and Ron. Ellie & Glen
February 8, 2005 at 9:11 pm #3993JimbobMemberBarbara,
I am so sorry to hear about Ron’s status. I will continue to remember him and you in my prayers.
JimFebruary 8, 2005 at 9:42 pm #3994AprilMemberBarb ~ I’m so sorry to hear that Ron is not doing well. I really don’t know anything about the drug that you are asking about, but I wanted to let you know that you 2 are in my thoughts and prayers.
March 3, 2005 at 6:16 am #3995MichaelLMemberMy father (73) had MDS and it converted into AML (with 90% of blasts) in May of 2004. Since then he had 2 treatments with FLAG chemo and his blasts dissappeared for 4 months. He relapsed in December with 75% of blasts. Few choices were offered – Mylotarg and Experimental study Ida Rubicin with EL625. He agreed to go with the study. First treatment was in the mid. December and after that was sick with pneumonia for 2.5 weeks (had also water retention issue and his weigh increased by 25 lb). Second treatment was done in the mid Jan. of 2005. Few weeks ago he had his BM test. He has 50% blasts. In the mean time, my father feels fine, has good appetite, walks mile per day, drives his car and continues going to the hospital for the transfusions few times per week. His doctor told us that only option for him would be HOSPICE at this time. This means that no regular transfusions anymore, only if he will be sympthomatic. In my understanding, if person has normal quality of life why does he have to be signed up for HOPICE?
He can drive to the transfusion center to get his blood or platelets as needed. Why if they cannot offer any treatment he cannot come for the regular transfusions? I asked: “What do you call the sympthom?” He said: “Bleeding”
My father does not want to give up and wanted more treatments or something done. He asked doctor for another rounds of chemo or something else. Doctor got agreed to administer MYLOTARG. We also got a second opinion where doctor mentioned VIDAZA. We are still trying to learn more about both of them. I would like to hear from someone about MYLOTARG. Please share your concerns.March 3, 2005 at 4:50 pm #3996KP2112MemberHi Barbra,
I have been viewing this message board for a few days and have read a bit about your and Ron’s predicament. I found the following information below, on the web. It may be useful to you.
Side effects of Hydroxyurea
Temporary reduction in the production of blood cells by the bone marrow This can result in anaemia leading to tiredness; an increased risk of bruising or bleeding and an increased risk of infection.
This effect is usually mild. The numbers of cells in your blood can begin to reduce from about seven days after the treatment has been given and usually reach their lowest point at 10-14 days after the chemotherapy. The numbers of blood cells will then increase steadily and will have usually returned to normal within 21-28 days.
The extent to which your blood cells are reduced depends on the dose of chemotherapy you receive and which other chemotherapy drugs, if any, are given in combination. Your doctor can advise you how likely it is that your blood cells will be lowered by the chemotherapy. Your blood will be checked regularly to see how well your bone marrow is working.
If your temperature goes above 38°C (100.5°F); or you develop any unexplained bruising or bleeding; or you suddenly feel unwell, even with a normal temperature, contact your doctor or the hospital straight away.
Raised levels of uric acid in the blood A drug called allopurinol may be given to stop this happening. It may also help to drink plenty of fluids. While you are taking hydroxycarbamide your uric acid levels will be checked regularly by blood tests.
Take Care,
KarenMarch 3, 2005 at 5:19 pm #3997alexandra7ParticipantOh Barbra !!I am so sorry for the relapse . You had such a good attitude and you should try keeping that up . You are such greate people (I know that because all your posts were special for me). Let’s hope a miricale will happen and the treatment will work . You will be in my prayers. alexa
March 4, 2005 at 4:18 pm #3998BecMemberDear Ron and Barbra,
You both will remain in my prayers. Keep your hope and know that you are being thought of often.
Bec
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