The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 180. Re: My next step???
    felursus Registered Users
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    She's doing her point mutation thing.  It doesn't take much extra work to tell the patient or at least the patient's MD what you've found.  Gee, they thought I was an "interesting case", so I got presented in rounds.  She should have had something to contribute to the discussion....

  • 181. Re: My next step???
    Tex Registered Users
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    Welp, she's in the past.  Don't let the bastards get you down.

  • 182. Re: My next step???
    felursus Registered Users
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    My MD, (I call him by his first name, Andrew), finally spoke with "The Great Man" today.  Dr. Tallman reiterated that he believed I did have at least a partial response to induction chemo.  He's in favor of my doing the Vosaroxin study (the one I didn't do last summer) or another chemo regimen (possibly repeating standard induction with a higher dose Cytarabine and/or using Daunarubicin instead of Idarubicin - which is what was used on me the first time) or doing MEC or some other regimen.  Soooooo many choices!   I'm going in to see Andrew tomorrow to discuss.  I also haven't had any lab work done in the past month (thanks to the pneumonia). They still think I have a very "indolent" form of AML - how indolent might be a good question.  Next week will mark 10 months since I've needed a transfusion, and I can't tell how much of my fatigue is due to AML vs. effects from the pneumonia (which, from past experience, can last a while).  I guess I'll have a better idea after tomorrow.

     

    I hope Andrew is in a fit state to talk tomorrow: he's going to a Bruce Springsteen concert tonight - and will be in the front row! 

  • 183. Re: My next step???
    Tex Registered Users
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    Doesn't he know that the best seats are on the fifth row?  Oh well, medical school doesn't guarantee genius.

     

    Let us know what you find out.

     

    Blessings

  • 184. Re: My next step???
    felursus Registered Users
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    I got it wrong: he was in the first row of the second section. He said the concert was great - they showed a snippet on the evening news here. "Da Boss" appeared to be in good form.

     

     

    Hgb was 6.4 today so I've got an appt for 2u PRBCs for Friday. I'll be perky for Easter/Passover.  (Munch dem matzos, chew dat lamb!). I also just had a f/u CXR so we'll see how the pna is doing. I don't think it's completely
    resolved yet. I foresee another round if abx in my future. Par for the course.

     

    So here are my options for ongoing treatment:

     

    1.  Do the Vosaroxin study - it's the one I didn't do last summer, but this time I'd do it at MSK. This is the approach favored by Tallman, and Andrew is leaning toward it too. It involves medium dose ARA-C plus the study drug vs
    placebo. Andrew thinks that if I do that it won't be so toxic to my system as to preclude doing one of the other choices later on.

     

    2.  Chemo: MEC vs. FLAG vs 7+3 with Daunarubicin instead of Idarubicin

     

    3. Decitabine

     

    So I have a lot to think about.

     

    Any comments/suggested are most welcome.

  • 185. Re: My next step???
    Tex Registered Users
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    So this is a blind study and you might be receiving a placebo?  That would be my only concern that might slow me down from saying full speed ahead with the trial.

     

    Otherwise, I think a lot of folks have gotten where they want to be with high dose Ara-C and one of the Rubacin sisters.  I'm pretty sure that you had more of a response to your first induction that they originally thought.  You've been alive and well way too long to not give induction some credit, from what little I know.

     

    But, while I'm implying things here, I'm not going to advise.  That's your doctors' job.

     

    Still, a HGB of 6.4 is really low.  I hope they got you some blood stat.

     

    Blessings

  • 186. Re: My next step???
    felursus Registered Users
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    I definitely get medium dose ARA-C plus/minus the study drug - which is an updated hypomethylation agent.  The thinking is that it's the least toxic of the options, so I could then go on to one of the others after. 

     

    Alas, still haven't kicked the pna: the CXR was unchaged.  The radiologist recommended a repeat in 2 weeks.  Strangely, my symptoms are more middle lobe than lower lobe. 

     

    I'm getting 2u PRBCs tomorrow.  We'll have to see what that does for me before seeing about further transfusions.  The computers at the hospital were having "issues" yesterday, so I don't know what the plts or WBCs were.  They won't show up on the patient-accessible website for about a week.  Bummer.

    Karen

  • 187. Re: My next step???
    Tex Registered Users
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    When my doc (endo) got an HGB reading of 6.0 she had me in to make sure it wasn't a bad test.  When the second reading was 5.5 she called me late on Wednesday night to have me go to the hospital.  If my HGB ever dropped below 8, I was given blood product.

     

    So, I'm kinda surprised they're being what seems lackadaisical (to me) about getting you topped off.  But if you feel confident with that, I'm not trying to concern you, just want to make sure something isn't falling through the cracks.

     

    Pneumonia sucks.  They need to figure out how to get rid of that little bugger.  Stay strong.

     

    Blessings

  • 188. Re: My next step???
    felursus Registered Users
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    I'm sitting in the chair having just finished 1u PRBCS. Will get the 2nd in a little while - after a trip to the BR. ;-). I've been imbibing Adam's wine, and it's worked it's way through the system. ;-)

     

    I'll try your suggestions for fixing the font size the next time I'm on my computer and not my iPhone. Thanks for the tip.

    Hugs,

    Karen

  • 189. Re: My next step???
    ARTB Registered Users
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    Hello Karen;

      I   was  going to wish you a happy Passover and Easter, I guess I am partly late , and you're already into the wine.... continue to enjoy.

  • 190. Re: My next step???
    felursus Registered Users
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    Thank you.  Strangely, I think I had the wine while I was being transfused.  The second unit was the strangest, purple color.  I jested to the nurse that it must have come from a Royal Personage.

     

    I hope you and everyone else reading this has a wonderful Passover and/or Easter.

     

    Karen

  • 191. Re: My next step???
    DebbieW Registered Users
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    Hi Karen,

     

    Guess the question for me would be what is the goal. Is it to control the AML with chemo and consolidation treatments to achieve a long term remission or do they think a transplant might be the best path. If a transplant is the goal, then I would think the shortest path to remission might be the a good choice.  At least that was what my husband's initial doc thought once the decision to move to transplant was made.

    Tough choices to make in the days ahead, for now enjoy the holiday and think about it next week

     

    Best,

    Debbie

  • 192. Re: My next step???
    Tex Registered Users
    Currently Being Moderated

    felursus wrote:

     

    it must have come from a Royal Personage.

     

    Or someone who really likes, er, "grape drinks."

  • 193. Re: My next step???
    Tex Registered Users
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    Good point, Debbie.  Good to see a post from you.

  • 194. Re: My next step???
    felursus Registered Users
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    Well, Debbie, that's a good question.  Part of the issue is that no one ever did the sub-cytogenics - which is something they are now thinking is of extreme importance in determining the best treatment options.  As I've said before, one of the things that made me so mad at that MD at Presby was that I had donated extra BM aspirate for her point mutation study - at extra cost in pain to me - and then she didn't bother to at least give me the info.  I'd prefer, if possible NOT to do a transplant, but obviously I will if necessary.  At least I know there are good potential donors out there.

     

    The thing would have been much better if they had done a repeat BMB back in July, because then I could have gone in for consilidation chemo and possibly be done with the whole thing by now.  In any case, I can't do a thing about treating the AML until I get rid of the pneumonia - and the radiologist suggested waiting 2 weeks for a follow-up CXR.  Pneumonia can take a while to clear even after the infectious process is over.  Blechhhhh!

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