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Viewing 15 posts - 16 through 30 (of 69 total)
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  • in reply to: BMT donor's risk #6681
    KP2112
    Member

    Glad to hear that you are doing well. I am not sure either about Neupogen and effects on pregnancy. Neuprogen is designed to facilitate white cell counts. I am assuming they want to give this to her so she will be feeling okay. Or it may be to pass more white blood cells on to her brother. In any event, it is best to discuss with someone and I think Neil’s suggestion to call Amgen is the best.

    Take care,
    Karen

    in reply to: Checking In #6515
    KP2112
    Member

    Thinking of you Barbra. I know the sale is coming up this weekend and I hope everything goes smoothly for you. I hope your heart is feeling at least a bit better.

    Take care,
    Karen

    in reply to: Just Some Information #6607
    KP2112
    Member

    Jody,

    He counts seem to be maintaining better than they were. I would really like him to try Revilmid. Looking at your Mom’s chromosomal abnormalities they are similiar to my Dad’s. How is her medication working for her? Is she feeling good? Does she have many blasts?

    The weather is good, only thing it is too hot for my Dad to be out. He doesn’t feel great in this weather.

    Take care,
    Karen

    in reply to: Dad update #6444
    KP2112
    Member

    Carrie,

    They are so brave. Although it was over a period of a about two weeks. He used to go each week after that because his hgb would keep falling. That is when we went to the Princess Margaret Haospital and they said he had RAEB-T. He was given valproic acid and since he has been going about every three weeks now. I pray it keeps up. They only thing is he seems to be lossing weight and I don’t like that.

    Take care,
    Karen

    in reply to: Revilmid is Good News for Me #6626
    KP2112
    Member

    Naomi,

    Can I ask where you came across a trial for this? I would be very interested as it is something that my father could do as he has the 5q deletion.

    Kind regards,
    Karen

    in reply to: Another update…. #6676
    KP2112
    Member

    Kathryn,

    Here is some information regarding Trisenox that I thought may be useful to you.

    General Information

    Trisenox (arsenic trioxide), injectable formulation, is indicated for the treatment of induction of remission and consolidation in patients with acute promyelocytic leukemia (APL) who are refractory to, or have relapsed from, retinoid and anthracycline chemotherapy, and whose APL is characterized by the presence of the t(15;17) translocation or PML/RAR-alpha gene expression.
    Clinical Results

    A multi-center pivotal trial was held, led by Memorial Sloan-Kettering Cancer Center, consisting of 40 patients ranging in age from 5 to 72. The drug was shown to be effective with 70% of the patients achieving complete remission. 86% showed clearing of the chromosomal abnormality that causes APL. Total remission was reached, on average, within two months after treatment with Trisenox began. At a median follow-up time of 16 months, 68% of patients who had achieved complete remission were still alive and 58% were disease free.

    Side Effects

    Common side effects include, but are not limited to:

    * leukocytosis
    * nausea
    * vomiting
    * diarrhea
    * abdominal pain
    * fatigue
    * edema
    * hyperglycemia
    * dyspnea
    * cough
    * rash or itching
    * headaches
    * dizziness

    In clinical trials these side effects usually did not require interruption of therapy, nor have they been observed to be permanent or irreversible.

    Approx. 23% of patients showed symptoms of APL-differentiation syndrome during or after their treatment with Trisenox. These symptoms include fever, weight gain, shortness of breath, and musculoskeletal pain. High-dose steroids and diuretics were used to manage these symptoms and the majority of patients were able to continue their treatment with Trisenox. Hyperleukocytosis occurred in aprox. 50% of patients undergoing Trisenox therapy. It did not require them to stop treatment.

    Mechanism of Action

    The mechanism of action of Trisenox is not completely understood. Arsenic trioxide causes morphological changes and DNA fragmentation characteristic of apoptosis in NB4 human promyelocytic leukemia cells in vitro. Arsenic trioxide also causes damage or degradation of the fusion protein PML-RAR alpha. (From FDA Label)
    Additional Information

    For more information about TRISENOX, please contact: • Professional Services: (800) 715-0944 Health care professionals can click on “Professional Services” above to request medical or drug information for TRISENOX. Normal business hours are 9:00 a.m. to 7:00 p.m., ET, Monday through Friday. After hours emergency coverage is also provided.

    in reply to: Our Forum, My friends #6668
    KP2112
    Member

    Terri, thanks for those kind words, really they were very nice. Something sometimes needed to reassure us all that we are thinking of each other in these ups and downs of MDS.

    Kathryn, I hope the Trisenox works for your father. His counts may be low at first but hopefully they will bounce back again. I think that if it is not effective as required, perhaps there would be a combination that they could give your father.

    You are all in my thoughts,
    Karen

    in reply to: Hi all! Update #6585
    KP2112
    Member

    Carrie,

    I am really glad you Dad is feeling better. What a crazy time for you with all this going on in your life. Hope your Mom’s surgery goes well.

    Take Care,
    Karen

    in reply to: how big impact from vidaza? #6446
    KP2112
    Member

    Frank,

    I think all these drugs effect everyone differently. What I can suggest is to look on the Web and find sites that detail the effects of the drug and what you can expect. I you know what you are in for you will be better able to plan care for your children.

    All the best tomorrow,
    Karen

    in reply to: Revlimid – Please Read! #6330
    KP2112
    Member

    Suzanne,

    I could not agree with you more.

    Karen

    in reply to: dad/ Trisenox #6402
    KP2112
    Member

    Kathryn,

    Check out the website below, it will provide you with some information.

    http://www.multiplemyeloma.org/treatments/3.08.07.html

    Hope this helps,
    Karen

    in reply to: weight loss #6436
    KP2112
    Member

    Hi Sarah,

    My Dad eats a lot and still looses weight. We got him a pair of suspenders to help keep his pants up!

    I am not sure why people experience weight loss. Maybe it is due to the condition of medications? The thing to think about is eating healthier with lots of fruits and vegetables.

    Take care,
    Karen

    in reply to: Dad update #6442
    KP2112
    Member

    Hi Carrie,

    It is good that he is being monitored. I am not sure why your Dad needed 3 pts of blood but it will make him feel better and help him fight off the bad bacteria.

    I remember when my Dad was in the hospital, his hemoglobin was at 4.7. He was in for over a week and needed about 9-10 pts. After that he felt a lot better.

    Take care,
    Karen

    in reply to: C-Diff? #6248
    KP2112
    Member

    Great idea. Yogurt is supposed to help restore the good bacteria you need in your system…

    Kind Regards,
    Karen

    in reply to: Revlimid – Please Read! #6327
    KP2112
    Member

    Interesting that it is an old article. It was published in our Monday’s paper and I also heard a blurb about it on CNN. Well, maybe it is coming up again because of the conference regarding MDS just this past weekend. Regardless, it is good information to have…

Viewing 15 posts - 16 through 30 (of 69 total)

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