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My Choices for newly diagnosed AML

Home forums Patient Message Board My Choices for newly diagnosed AML

Viewing 15 posts - 16 through 30 (of 35 total)
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  • #16857
    campbell
    Member

    Hello Russ and all, my husband was admitted to the hospital today… he has been having a terrible time with his toes… one Dr. thought it was Gout Arthritis and another podiatrist said it was possibly a blockage of his veins… to make a long story short his primary care Dr. has been giving him pain meds and he has only got
    worse. After x-ray and doppler test on leg they have determined that he has an infection in his bone. CT tomorrow to see how far it has gone up his leg.

    After all this rambling I want to ask Russ what his numbers looks like with the transition to AML. My husbands WBC has increased from 2.2 to 5.9 in leas than 2 weeks. Am I asking for trouble and reading too much into the increase. Keep us in your prayers.
    Campbell

    #16858
    patti
    Member

    Campbell,

    A jump in white cells like that can be a concern but if your husband has a bad infection that will also cause his white cells to jump as his body tries to fight it off. So at this stage, it would be very difficult to tell if just the white cells are a reason for concern. Normally, if mom’s doc sees a hike in white cells she does a blood smear to see if she has blasts in her peripheral blood. In order to technically diagnose AML a BMB has to be done to check blast count, etc.

    Hope your husband gets to feeling better quickly! A bone infection sounds horribly painful.

    Hope this helps.

    patti

    #16859
    Russ P.
    Member

    This is an update on my treatment for AML:
    My results after one round of Vidaza + PDX-101, (HDAC, a histone deacetylase inhibitor)
    Are as follows:
    Before treatment: 1/29/07 WBC 2.8; HGB 9.3; PLT 119; ABS blasts 1.35
    After treatment: 2/12/07 WBC 1.3; HGB 11.0; PLT 65; ABS blasts 0.25
    It’s too early to tell but my ABS blasts have come down. Here’s some info I copied on VIDAZA and HDAC inhibitors:
    “Vidaza is believed to exert its antineoplastic effects by causing hypomethylation of DNA and direct cytotoxicity on abnormal hematopoietic cells in the bone marrow. The concentration of azacitidine required for maximum inhibition of DNA methylation in vitro does not cause major suppression of DNA synthesis. Hypomethylation may restore normal function to genes that are critical for differentiation and proliferation. The cytotoxic effects of azacitidine cause the death of rapidly dividing cells, including cancer cells that are no longer responsive to normal growth control mechanisms. Non-proliferating cells are relatively insensitive to Vidaza.
    About Epigenetics
    Azacitidine is the first of a new class of anti-cancer compounds called epigenetic therapies. DNA methylation and histone deacetylation are two of the more studied epigenetic regulators of gene expression. Epigenetics refers to changes in the regulation of gene expression. Epigenetic changes can silence gene expression and, unlike DNA mutations, may be reversed by targeting the enzymes involved. The silencing of key cell cycle control genes and tumor suppressor genes through these two mechanisms of epigenetic regulation has been demonstrated in vitro and in vivo in hematological malignancies and in solid tumors. These key growth control genes can be re-expressed in cancer cells when DNA hypermethylation is reversed by Vidaza and/or inappropriate histone deacetylation is inhibited by MGCD0103. The epigenetic approach to cancer therapy is that rather than using molecules that kill both normal and tumor cells, the silenced genes are reactivated through targeted epigenetic therapy, re-establishing the cancer cell’s natural mechanisms to control abnormal growth.” I will be out of town for the next rd of treatment, 2/26 – 3/3

    #16860
    Russ P.
    Member

    I forgot to mention that I had a tx of PRBC’s after the treatment started.

    #16861
    gemloyear
    Member

    Russ, Good luck with your treatment. I will pray that it will be effective for you. God Bless.
    Ellie

    #16862
    Jack_dup1
    Member

    Russ, I wish you all the best with your treatment plan, who is your Doctor at Rush, I saw a Dr. Venugopal when I was there, nice guy and very helpful.
    Jack

    #16863
    Russ P.
    Member

    Jim, I’ll be at the University of Chicago hospital. My Dr. there is Dr. Elizabeth Rich but I will see several others on the team.
    Dr. Venugopal is at the Rush University Hospital.
    Thanks to all for your well wishes.

    #16864
    stocker1
    Member

    Hello

    I hope I can give you some comfort in the fact I have been in remission from AML for 16yrs. and had good quality of life.

    Good Luck
    George

    #16865
    kls
    Member

    Hi Russ,
    Like others, I see many of your posts. I’m usually just a reader but I wanted to let you know that my Dad is currently taking Vidaza and pxd 101. He also goes to U of Chicago, and he was referred there for this trial. My Dad has had 4 rounds so far and has handled it all very well. The last bone marrow test showed “some improvement”. He has had no negative effects so far. His main problem is his low wbc. Good luck at U of C. If you have any questions, I’ll try to answer. KLS

    #16866
    SandyB
    Member

    Russ, been thinking of you and praying hard. Mike is also on Vidaza, and when they started treating they felt his AML had relapsed.

    Yesterday we were told they think maybe it is MDS and not relapsed AML.

    All of this is so emotionally draining for all of us. Keep the faith and know you are being thought about and wished the best, from all over the world.

    #16867
    Suzanne
    Member

    Hey George! Glad to know there is someone else out there beyond me. Hopkins just told me that they still want CBC’s every 3 months and a BMB every 6 month on me. I told them it gives me mixed feelings-glad that they care and are watching me so closely but also the feeling that they still think the AML or MDS could come back any minute! How often do they check on you? CBC’s don’t bother me but I could do with fewer BMB’s so I hope someday they go to once a year! Did you have MDS that progressed to AML or just AML? My docs say that makes a difference.

    #16868
    Russ P.
    Member

    KLS, Good to hear your dad has made some improvement. I finished 2 rds at U. of C. and will have a BMB March 27th before the 3rd round.
    Sandy,will be praying for you and Mike also.
    God bless all of you.

    #16869

    Hello,

    My dad is 67 and was just diagnosed with AML. He is in the hospital for pnumonia and just finished his first round of Dacogen on Feb 26th.
    It didn’t seem to be good on him, but he had no other choice since the Vidaza didn’t seem to be working anymore, the doctor waited to long in between the rounds.

    Suzanne, I wanted to know what chemo you did that sent you into remission and how bad it was on your system.

    Russ, I was wondering if Vidaza stopped working for you that’s why you went to Dacogen and if your doctor had any concerns about doing Vidaza again with the PDX-101. My dad’s doctor says that the Vidaza and PDX-101 won’t work because the Vidaza shots had stopped working earlier.

    We’re in California and had an appointment for MD Anderson, but aren’t sure if he will be able to go on the 28th.

    Just some questions I thought I’d put out there since this forum is the only place where I feel I get good answers.

    Thank you all so much : )
    Trying to stay possitive

    #16870
    Russ P.
    Member

    Thought I was holding fairly steady on Vidaza, then was off of it while I consulted with Dr. Raza in MA. When I went back to Vidaza for 3 rds my BM blasts went up to 18% and I was put on Dacogen. After 4 rds my BM blasts were 35% and my hemo/onc indicated there was nothing more he could do but lined up a visit to U of Chicago where they thought the Vidaza + PDX-101 was my best shot. Not expecting a cure just a little more time before I see Jesus.

    #16871
    Suzanne
    Member

    I did two rounds of heavy chemo. They called it Induction and consolidation. I was in the hospital 30 days or more each time. In essence they destroyed my bone marrow-counts down to nil both times and hoped when it came back it would be healthy and it was. It was long enough ago that I am sure they have made changes in the drugs they use by now. Seems to me I had three different ones the first time and repeated two of the three the second round. It was not as hard as I thought it would be. I was otherswise very healthy. I did get a blood infection and a fungal infection during the process but they were able to take care of both & it was expected and common I was told. Some time during the 1st year after I had a round of shingles and another infection we all carry in a latent version. But again they got it taken care of quickly and said it was very common after chemo. There are many more treatments to choose from now. There were no approved treatments when I was diagnosed-just trials.

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