Update on me

[alexandra7]

Suzanne, that is very good news. If you have come so far keep hoping and you’ll be home safe in no time . We will be here to help you pass the first 3 month . Keep up the good work. My prayers and thoughts will be with you . Alexa

[mommachkate]

Hi Suzanne, I am so hopefull that we will here nothing but good news from you. Wishing you full and fast complet recovery. I hope you will not leave us, we need your knowledge and encouraegment.I have a question for you, have you been taking oxycodone regularly, or as needed. George started to take it regularly in the hospital for his back pain, and it is effecting him some bad ways.I wonder why they giving him something like that, when he has reactions and he is getting addicted to it.So, when is your next BMB? George had down the second BMB since his cemo was finished. Two in 3 weeks . This is how it was for you after the cemo?There is an other thing I like to discuss. His blast was 3% in the December biopsy.In the Moffitt center the doctors told me , that they have to add the mono % to the blast % and that is the real number . If it is over 20%(it was), than his CMML turn over or turning over to AML, and has to be treated accordingly. What do you know about this? Thank you for your help. Kate

[KATHY1]

Sauzanne, It’s so great to hear good news. Wishing you continued success.

Kathy

[Suzanne]

kate, No I don’t take oxycodone on a regular basis. Just took 5 Mg with 10Mg of Adivan 20 minutes before my last BMB.I have had something like 12 of them cold turkey except for the local anethesia and was getting tense about them so my nurse practitioner prescribed what she called her cocktail.Made it much more comfortable. My counts have stayed normal or just below since I recovered from the consolidation round of chemo about a year ago and since I am doing well on the zarnestra trial I have not taken anything-even vitamins-until I am done. I have no side effects that need treatment once I got past the first few weeks.
I had a BMB while I was in the hospital for the induction round. That was more then a year ago and as I remember they wanted the marrow to be “empty”. Then I think I had another one that showed growth of healthy cells.I know I had one at the end of the consolidation round Since then mine have said ‘No abnormal blasts”, and no leukemia cells, no abnormalities. Because of the Zarnestra trial I have had a BMB about every 2 1/2 months for a year. My next one to end the study will be April 1. That is 3 weeks after I stop taking Zarnestra.They told me they will probably do counts everyn 2 weeks and a BMB every 3 months for a while until they feel I am stable without the drug.
I too was told that 20% blasts in the marrow was the marker being used for AML. Mine were at 75% when I went in for chemo.They had gone quickly from about 19% to the 75%.
Good luck. I am so glad that George now has good care. You at least know that you are getting expert advice about what to do.Especially important since we all react to drug treatments so differently and have such different forms of the disease.

[mommachkate]

Suzanne, Thank you for explaining your treatment history, helps a lot to understand , what is going on with George. He got The same “coctail” yesterday, he doesn,t even remember that he had the BMB down. I can’t even find the words to describe to you , how I feel, to wait for the result. Of couse , unfortunatelly you know, how it feels.I probably going back to Tampa tomorrow,his breething still not good. I don’t think they will relese him in this condition, even if the BMB result is good.Best wishes for your continuing sucsess. Kate

[Suzanne]

Thanks kate, Do they know what is causing the breathing problems ? I think Barbra’s Ron had some problems with that. I had a fungal infection in my lungs when my counts were down from chemo(they said this was fairly common)but my only symptom was a fever. They got it under control and a blood infection also.

[mommachkate]

Suzanne,That is , what he has,a fungal infection,on the lung. The last two weeks we getting different reports. It is getting better, than getting larger, than again getting better, and just today I was told it got larger again. He also had on and off low grade fewer. Today he had an echogramm of his heart. I still didn,t hear anything about the BMB report.I will be going back there the latest Thursday. I have to be there to find out , what is going on with him.Best wishes again Kate

[Suzanne]

I am wishing you both well and hoping that George gets past these difficulties. Sounds like they are watching him closely and that is a good thing

[PamyRn]

Suzzane
I am so excited for you. If I remember right they were unable to find a donor for you so that is why you went for this alternative treatment which seems to work. I was diag with MDS-2 first of Nov…went into AML Jan 5th. Into hospital for “round” of chemo…..First biopsy two weeks after showed remission…Scheduled March 5th at U of Mich. Yesterday found out donor failed physical so actually they had another specimen and they match also 10/10, 30yr male, same blood type. Hope to keep same admission date, but prob will take an extra week. Anyway I wish I knew if the treament you have been taking would work for me. Im so afraid of this BMT. I have some residual skin issues after that first round of chemo and will post a new subject on that to get advice. I have had four BMB and have felt and remembered two of them…same drugs though. Demerol and Versed. Anyway the one I had last Fri that U of M required showed 3% blasts…but showed “slight” myleoblastic changes in the shape of other cells indictitive of MDS…so looks like I wont stay in remission long. I am so excited for you…hope you kick it in the butt!!
Pam

[Suzanne]

Thanks Pam. We did not look for a donor except to check my one sipling that did not match. Two years ago they were not advising unrelated donors for patients over 60. I also had a lot of reservations about doing a transplant. So far I have been lucky that alternative treatment has worked for me. And a lot of progress has been made in the two years both with alternative treatments and the success of transplants. Good luck to you. Waiting to start something is hard. We are probably all nervous about any treatment we decide to pursue.

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