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Drugs and Drug Treatments ATG, Cyclosporine, Revlimid, Vidaza, Dacogen, ...

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  #1  
Old Thu May 26, 2016, 08:04 AM
Greg H Greg H is offline
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AML Induction Chemo Experiences?

Hi All!

Last night at midnight, I finished up my the last of seven units of cytarabine. During the first three days, I also had idarubicin. Though my diagnosis remains high-risk MDS (RAEB-2), this is the standard course of induction chemo for AML here at Duke

I know from research online that there's a well-established pattern of impact on blood counts, at least according the the FDA.

Quote:
Following 5-day constant infusions or acute injections of 50 to 600 mg/m2, white cell depression follows a biphasic course. Regardless of initial count, dosage level, or schedule, there is an initial fall starting the first 24 hours with a nadir at days 7 to 9. This is followed by a brief rise which peaks around day 12. A second and deeper fall reaches nadir at days 15 to 24. Then there is a rapid rise to above baseline in the next 10 days. Platelet depression is noticeable at day 5 with a peak depression occurring between days 12 to 15. Thereupon, a rapid rise to above baseline occurs in the next 10 days.
But I'd be interested in hearing from folks who have undergone induction therapy for AML and MDS about what your actual experience was with the drug in the period after administration: fatigue, infections, hair loss, whatever.

Please weigh in and let me know what to expect.

Thanks!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #2  
Old Fri May 27, 2016, 04:56 AM
DanL DanL is offline
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Greg,

I don't have any experience, but wanted to congratulate you on making it through the first steps! You will probably have some serious energy depletion when your WBC zeroes out. Not sure why this happens, but it is usually the low point with transplant as well.

You are in my thoughts daily, wishing you a strong and powerful recovery.

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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #3  
Old Fri May 27, 2016, 07:31 PM
Greg H Greg H is offline
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Thanks, Dan!

I really appreciate that.

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #4  
Old Thu Jun 2, 2016, 07:23 AM
lisa3112 lisa3112 is offline
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Hi greg,
I'm new to this forum. 30 yr old from melb.. drs think I had mds that had already developed into aml when they discovered it. So with induction therapy I had the same drugs as you... I was extremely tired and had diarrhea and lack of appetite. Hair fell out after a couple of weeks (shaved it first.. too messy!) My counts were already shocking so had alot of transfusions! They didn't start to come up until about day 30. Unfortunately I discovered I'm allergic to a few anti nausea meds but I suggest you take them regularly. Good luck! Sorry you have to go through this. Lisa
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  #5  
Old Wed Jun 8, 2016, 07:45 AM
italianburrito italianburrito is offline
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Greg, My dad had induction chemo about 4 weeks ago due to a relapse from a haploid transplant. During his nadir, he received a donor lymphocyte infusion in the hopes of putting him remission and possibly a cure. At the moment he is in the hospital due to elevated temps and a suspected infection to his inner ear. Unlike you, he did a 5+2 with the same medications since they did not want to kill the graft that is there in the hopes the DLI with "clean up" the cancer cells.

He has hair thinning and minimal weakness. He tolerated the chemo really well but weeks later is suffering the consequences of low WBC, Plts, and Hgb. Due to his infection the plts have been taking a dive and he's been needing more transfusions. Let me know if you can anymore questions. He is also getting treatment at duke.
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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  #6  
Old Tue Jun 14, 2016, 11:00 AM
Juan Juan is offline
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Chemo didnt work

Hello,

My 75yo father had MDS until 3 weeks ago when he was diagnosed with AML.
He started chemo with the 5+2 plan (instead of the 7+3). He had no side effects other than one high fever night and poor appetite, so things were going reasonably well, "according to plan" the doctor said...

Today, his marrow amalysis showed he still has 17%blasts, so doctor said that chemo didnt work for him... Now all his counts are low but he is feeling good...

I was really hoping he would be in remission, so this is really destroying me right now... Doctor said we have to wait till his counts go up a bit before talking about new options, though she doesnt seem very optimistic. She suggested Dacogen might be an option, but I havent find any promising info on that drug used in AML refractory to chemo...
Do any of you have any treatment advise? experiences?
THANK YOU SO MUCH for reading me, this is one of the worst days of my life (if not the worst)
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  #7  
Old Tue Jun 14, 2016, 11:24 AM
bailie bailie is offline
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Dacogen is very similar to the Vidaza that I was on after relapsing to AML. It worked great for me. After three cycles my blasts were less than 1 percent. It doesn't work for everyone but works very well for many. The side effects are usually minimal.
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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 Wed Jun 15, 2016, 11:29 AM
Juan Juan is offline
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Thank you Bailie,

Im familiar with Vidaza but dont know much about Dacogen... reading about it in some web pages, it seems like vidaza might work better (and longer) than dacogen, dont know...

Any way, do you think having 17% blasts after first chemo cycle (5+2) is a good reason to stop it? (i was told when he started it, my father has over 80%).

I have been told about Clag and Flag ida as other treatments for refractory patients but never heard of them...
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  #9  
Old Thu Jun 16, 2016, 11:31 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by Juan View Post
Hello,

My 75yo father had MDS until 3 weeks ago when he was diagnosed with AML.
He started chemo with the 5+2 plan (instead of the 7+3). He had no side effects other than one high fever night and poor appetite, so things were going reasonably well, "according to plan" the doctor said...

Today, his marrow amalysis showed he still has 17%blasts, so doctor said that chemo didnt work for him... Now all his counts are low but he is feeling good...

I was really hoping he would be in remission, so this is really destroying me right now... Doctor said we have to wait till his counts go up a bit before talking about new options, though she doesnt seem very optimistic. She suggested Dacogen might be an option, but I havent find any promising info on that drug used in AML refractory to chemo...
Do any of you have any treatment advise? experiences?
THANK YOU SO MUCH for reading me, this is one of the worst days of my life (if not the worst)

Hi Juan,

I am not an expert on Vidaza but have seen a number of presentations on it. A common theme is that the Vidaza must be continued a minimum number of cycles before it can be determined whether it is effective or not. Also, it is expected that counts will get worse before they get better. I can't remember offhand the minimum number of cycles (maybe 5 or 6?) but this article from 2014 talks about trying it for 6 months before stopping.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921030/

Just another data point for you to discuss with the doctor...

Best of luck!
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #10  
Old Thu Aug 4, 2016, 10:51 AM
Marrowforums Marrowforums is offline
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We have learned that Greg Hankins, known in these forums as Greg H, passed away on July 24, 2016, from MDS and AML. His helpfulness, humor, willingness to share, and positive attitude were a model for all of us. We extend our condolences to his family.

Greg's blog

Obituary
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  #11  
Old Thu Aug 4, 2016, 10:35 PM
Hopeful Hopeful is offline
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This is very sad news, indeed. He will be missed.
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #12  
Old Fri Aug 5, 2016, 07:40 AM
lisa3112 lisa3112 is offline
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So sad. He was an intelligent and kind man.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #13  
Old Fri Aug 5, 2016, 11:53 PM
Cheryl C Cheryl C is offline
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Greg's death is sad news. He was a wonderful friend to all of us on this forum. His posts were incredibly informative and helpful for me, especially when I was first diagnosed. He will be missed.

My sympathy to Greg's family.
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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. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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