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  #1  
Old Wed Apr 8, 2015, 11:11 PM
bailie bailie is offline
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Bailie needs suggestions

I have some very important decisions coming up. If anyone has suggestions from their experience or experience of others I would be very appreciative. I have had a pretty good experience (if that is possible) the last 16 months. My counts have been close to normal for most of the time and have needed only one transfusion (at SCT time) during the entire period. The "good times" have come to an end and suggestions of how to proceed will be appreciated.

My Dr. called tonight and my blast count jumped to 33 percent. We all know what that means. Big decision will be to have inpatient high dose Flag-Ida or let this play out to the end. Is the risk - reward of the chemo worth it? I don't know that I would like to spend the rest of my life getting treatment in the hospital.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #2  
Old Thu Apr 9, 2015, 12:36 AM
DanL DanL is offline
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Bailie,

I am very sorry to hear that your blast count has jumped up so quickly. With news like this, I have three thoughts: 1) trust yourself - you know what you can take and how you feel 2) trust your doctors once you have all of the information that you need (maybe time for a second opinion), 3) maintain faith and confidence (your attitude and strength have guided you well).

Strong chemotherapy followed by transplant will be a difficult road, but it has been travelled successfully by others.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Thu Apr 9, 2015, 05:25 AM
Cheryl C Cheryl C is offline
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Bailie, I'm so sorry to hear this. I don't have any advice, having not gone down your path (yet). I think Dan has given you very wise advice and I just want you to know you are very much in my thoughts and prayers.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #4  
Old Thu Apr 9, 2015, 08:11 AM
SLB SLB is offline
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Sorry to hear that Bailie! I went through induction chemo and whilst this was not after a transplant, I was transfusion dependent & had progressed after months of vidaza. I actually had little side effects from the chemo but had numerous fevers from having no neuts. However I was 20 years younger. It is a tough decision & I don't know the answer for you. However I agree with Dan.. He has said it well. One other question though, is vidaza not an option? You seemed to have good success with it last time? I know your blast count is high but I think I recall others using this, if a transplant / chemo wasn't an option.
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #5  
Old Thu Apr 9, 2015, 03:15 PM
bailie bailie is offline
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I thank all of you. When I had the chemo (Fludarabine) for my SCT it hit me pretty hard but my numbers and outcome were very good coming out of it. I don't know how that would compare to Flag-Ida and how long the hopeful remission would last. I guess we never know the answers to questions like that until we give it a try. As we all know, the challenges seem to just keep coming and we just have to do our best to meet them with the best of our abilities.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #6  
Old Thu Apr 9, 2015, 07:31 PM
rar rar is offline
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Hi Bailie,

I'm so sorry to hear about your last BMB.

I hope my experiences might help. I heard about all the risks associated with SCT. With my risk / reward ratio it was a no brainer to go with SCT. I came down with CMV, C.Diff and grade 4 GVHD. I spent 2 months in the hospital unable to eat and for my safety not allowed out of bed. They told my wife they thought I would die. If I survived there was a good chance of no long term problems. I am much improved now so again it was the right decision to put up with the hospital stay.

If I was convinced that there was not a good long term prognosis I would not put up with a 2 month hospital stay. I would go home and try my best from there.

Ray
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  #7  
Old Thu Apr 9, 2015, 11:37 PM
bailie bailie is offline
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Ray, you are a true inspiration. This is a difficult journey for all of us and you certainly have worked your way through one of the more difficult journeys. I applaud your efforts and willingness to persevere. I guess the lesson is to do everything we can to influence a positive outcome, while realizing that there will be some things that are out of our control.

I really appreciate the collective efforts we have on this forum with people we will probably never meet in person. Thank you.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #8  
Old Fri Apr 10, 2015, 07:49 AM
Cheryl C Cheryl C is offline
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Bailie - How are you actually feeling? Do you still feel well?
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #9  
Old Fri Apr 10, 2015, 12:04 PM
bailie bailie is offline
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Cheryl, I do feel well. If I could live feeling this well for a long time, I would be very appreciative. My blood counts are fine except for the blasts. That is what is difficult for this whole experience from the start.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #10  
Old Sat Apr 11, 2015, 09:17 PM
Cheryl C Cheryl C is offline
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I'm glad you feel well, Bailie. Hopefully that should help you cope with the treatment if you decide to go that way.

Are there any people on the forum who have continued to live comfortably for a reasonable period of time with a high blast count?
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #11  
Old Mon Apr 13, 2015, 10:58 AM
vickij vickij is offline
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Bailie ,

I don't have any suggestions for you, but you will be in my prayers. I really don't understand this disease. I am thankful for all the people on here that have so much information. I had transplant 22 mo. ago. I was told that a transplant would be a cure, but I hear of so many people having to have a second transplant. I know I should be asking my Dr more questions but as long as he was happy with blood counts, I was happy. He has never said if I am in remission or cured.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #12  
Old Mon Apr 13, 2015, 01:26 PM
bailie bailie is offline
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Thank you Vicki. I think it is terrific that you are doing well. I have my appointments in about two hours. The big decision for me (and the Drs.) will be to continue with more rounds of Vidaza (I just finished 1st cycle) or to go straight to the 30 day intensive Flag-Ida chemo. I am leaning toward the Vidaza for at least a couple more cycles before the Flag-Ida since I responded so well to the Vidaza before my SCT. Neither choice is that great. "Relapse" is a tough word to deal with.

I still don't understand why my "immature granulocytes" are now back very close to the normal range (0.9) and my blasts are going in the opposite direction. Logically (to me) they should move in the same direction, so that will be my first question today.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #13  
Old Mon Apr 13, 2015, 05:47 PM
johnwc johnwc is offline
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Bailie, look forward to hearing their answers and what you are going to do. When I think about you and this current situation I want to scream

Vicki, tomorrow is day+100 for me. I've studied and read so much in the last year and a half and learned that Leukemia, regardless of label, is tricky, with no strong pattern. It seems to have a mind of it's own. I read somewhere that if no cancer cells after 5 years you can consider yourself cured.

Blessings to both of you,

JOHN
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John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
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  #14  
Old Mon Apr 13, 2015, 08:21 PM
Cheryl C Cheryl C is offline
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Bailie, I will be interested in the explanation regarding granulocytes and blasts. Hope your consultation goes really well and you come away feeling properly informed about your options.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #15  
Old Mon Apr 13, 2015, 09:21 PM
bailie bailie is offline
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I just got back from my appointment.

1) The immature granulocytes generally do mirror the blasts. In my case the immature granulocytes are now in the normal range at 0.3 while the blasts are at 33% (AML). And, I have the 9;22 (Philadelphia chromosome).

2) I just finished my 1st cycle of Vidaza and they will start me on a tyrosine kinase inhibitor for the 9;22 as soon as they get approval from insurance.

3) I will have another BMB just before the next Vidaza cycle in three weeks.

4) If blasts are increased I will go into hospital for the 30 day Flag-Ida chemo and a DLI. If blasts are decreased then we will continue the Vidaza and another BMB.

Does that sound like fun, or what?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #16  
Old Mon Apr 13, 2015, 10:17 PM
rar rar is offline
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No, it does not sound like fun.

Just so long as you have a fighting chance don't give up.

I wish you the best.

Ray
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  #17  
Old Tue Apr 14, 2015, 12:51 AM
Cheryl C Cheryl C is offline
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You are very brave, Bailie - hope the Vidaza does the trick!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #18  
Old Tue Apr 14, 2015, 01:48 AM
maggiemag maggiemag is offline
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Bless you, Bailie! I am with John about just wanting to scream! But I pray your positive attitude and acceptance will help you cope with your planned approach. You are informed and knowledge is power to a certain degree, maybe?
Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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  #19  
Old Thu May 14, 2015, 11:41 PM
joesmith joesmith is offline
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Quote:
Originally Posted by bailie View Post
I just got back from my appointment.

1) The immature granulocytes generally do mirror the blasts. In my case the immature granulocytes are now in the normal range at 0.3 while the blasts are at 33% (AML). And, I have the 9;22 (Philadelphia chromosome).

2) I just finished my 1st cycle of Vidaza and they will start me on a tyrosine kinase inhibitor for the 9;22 as soon as they get approval from insurance.

3) I will have another BMB just before the next Vidaza cycle in three weeks.

4) If blasts are increased I will go into hospital for the 30 day Flag-Ida chemo and a DLI. If blasts are decreased then we will continue the Vidaza and another BMB.

Does that sound like fun, or what?

Hi Ballie - No it is definitely not fun but please stay strong. You did so well with your SCT and it is such an utter shame that the disease would relapse and with such high blasts. I hope the Vidaza works well for you. You are in my prayers. Keep us posted.
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  #20  
Old Fri May 15, 2015, 12:00 AM
traceyn11 traceyn11 is offline
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Ugggh! So sorrry bailie. Just like joe said, I hope the Vidaza works well for you. Glad you are feeling well otherwise.
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  #21  
Old Fri May 15, 2015, 02:42 PM
bailie bailie is offline
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Joe and Tracey,

My counts have greatly improved since that first round of Vidaza (down to 5-10 percent blasts), so that is good. Blood draws/results have improved every test since that first round of Vidaza and Sprycel, WBCs and neutrophils are back in "normal range" and PLTs have increased to 100. So that is very good. I will have another BMB June 8th to see next direction.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #22  
Old Fri May 15, 2015, 05:40 PM
vickij vickij is offline
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bailie

So happy to hear your good news. Still Praying for you.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #23  
Old Sun May 17, 2015, 09:05 PM
Cheryl C Cheryl C is offline
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Wonderful news from you, Bailie. It seems you made the right decision to go on Vidaza again. As we Aussies would say, "Goodonyer, mate!"
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #24  
Old Mon May 18, 2015, 05:59 PM
johnwc johnwc is offline
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ok..June 8th is on my calendar. I may see you there as I might have an appt also.
JOHN
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John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
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  #25  
Old Thu May 28, 2015, 10:18 AM
joesmith joesmith is offline
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Quote:
Originally Posted by bailie View Post
Joe and Tracey,

My counts have greatly improved since that first round of Vidaza (down to 5-10 percent blasts), so that is good. Blood draws/results have improved every test since that first round of Vidaza and Sprycel, WBCs and neutrophils are back in "normal range" and PLTs have increased to 100. So that is very good. I will have another BMB June 8th to see next direction.
Great news Ballie. We will be starting my mom on Vidaza again after a break of 4 months and it is good to know that there are chances of vidaza working after a break. I have you in my prayers. Stay strong!
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