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  #1  
Old Sun Jul 24, 2016, 01:52 PM
PaulS PaulS is offline
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treatment plan?

Still waiting for new biopsy results but last blood test showed decrease in WBC and platelets - not so good. Pending new BMB results, the treatment plan is to:
1. reduce immune suppressing drugs;
2. begin treatment with Vidaza and Venclexta -- anyone ever heard of this?
3. maybe DLI. This makes me nervous but doctors seem to think it might work.

If that fails maybe another transplant - or maybe another drug or drug combo - hoping BMB isn't so bad and Vidaza works its magic as it has for a couple others on this board.

Disappointing turn of events - but reinforces the need for me to be positive and faithful. The road ends at the same place for everyone - the trick is enjoying the ride - even when its dark and stormy...

Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #2  
Old Sun Jul 24, 2016, 04:00 PM
bailie bailie is offline
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Paul, you never know, but my WBCs and platelets are never consistent and vary greatly from test to test. I get a test every two weeks. My RBCs are very consistent, however.

It is interesting how we anticipate numbers that we never thought much about before diagnosis. I thought after I had a few BMBs that I wouldn't care as much about the particulars of the results. Just opposite, it seems like every BMB has really significant results that are eagerly awaited. As always, I wish the best for 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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  #3  
Old Mon Jul 25, 2016, 01:21 AM
Neil Cuadra Neil Cuadra is offline
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Paul,

Was this plan based on a series of lab tests with WBCs and platelets dropping each time, or just based on the one latest lab test? One lab test doesn't establish a trend, as bailie's experience shows.
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  #4  
Old Mon Jul 25, 2016, 06:03 AM
PaulS PaulS is offline
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Hi Neil - The treatment plan was based just one one blood test and the previous biopsy - also in part, on the return of skin nodules that I used to get prior to the transplant - Its preliminary at this point - but they started seeking insurance approval and trying to find out if the donor is available for a DLI.

I had another BMB last week and I expect to get results this week - and I'll be having a new blood test tomorrow - they also biopsied the skin nodules. We won't start doing anything - other than lowering immune suppressing drugs - until we get a little more information. I'll let you know what the new biopsies and blood work shows - Based on those results, its possible we come up with a different plan or maybe not do anything at all. It'd be nice if I just ended up getting off immune suppressants more quickly than previously planned!

We'd discussed using AZA as a maintenance therapy all along, so I'm wondering if that might be a good idea even if the blood tests are better and the BMB is no worse. Any thoughts in that regard? Otherwise I'll let you know what happens when I get the test results.

Thanks
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #5  
Old Mon Jul 25, 2016, 04:34 PM
Neil Cuadra Neil Cuadra is offline
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Paul,

I don't have any information about the maintenance therapy idea. This is where the doctor's experience matters, since your case is so particular to your circumstances. It's why hematology is both art and science, and having experts around is so important.
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  #6  
Old Mon Jul 25, 2016, 05:09 PM
bailie bailie is offline
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Paul, they kept me on azacitidine for maintenance for 12 months even though my BMBs were normal after being on it for three months.
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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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  #7  
Old Mon Jul 25, 2016, 05:30 PM
vickij vickij is offline
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Paul

Prayers for good report on BMB.
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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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  #8  
Old Mon Jul 25, 2016, 05:53 PM
PaulS PaulS is offline
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So true Neil - there are so many variables - quite a bit of art involved - I think I'm good hands.

Thanks Vicki - I really appreciate your prayers. How are you doing?

Bailie - how quickly did you respond to AZA - what were they measuring blood counts or do a quick BMB? Your experience seems pretty rare - Hope your feeling well.

Thanks
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #9  
Old Mon Jul 25, 2016, 06:49 PM
KatailS KatailS is offline
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Hi Paul
I wish I had something valuable to add, but am so new to all of this and can only offer positive thoughts, prayers, well wishes and supportive friendship. I hope your BMB results swing back in your favor and your health improves. Maybe (hopefully) this is just a blip.

Curious, I see you are in New York.... I'm in CT. Where do you receive treatment?
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Kathie - 54 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone (now increasing), monitor bloodwork every three months
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  #10  
Old Mon Jul 25, 2016, 10:14 PM
bailie bailie is offline
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Paul, in my case I relapsed with a genetic mutation (the translocation of the number 9 and 22 chromosome) that I didn't have before transplant. Almost everyone with CML has that 9;22 translocation (the "Philadelphia chromosome") except I have the very rare AML and Philadelphia chromosome. They started me with Vidaza and a chemo called dasatinib (Sprycel) which directly targets the 9;22. The Vidaza was mainly just to ward off anything else from happening that they didn't know about. My blast count was high (33 percent) at relapse. The Vidaza brought that down to less than 1 percent in the first two cycles. They immediately took me off the tacrolimus. My doctors don't know what to make of it. The prognosis is "very,very poor" for what I have.

I am doing fine and most people wouldn't know I have AML. I am still golfing 18 holes once a week and in about 10 days will be driving cross country with my daughter. That will be somewhat difficult since she has three large dogs and a cat.
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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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  #11  
Old Tue Jul 26, 2016, 09:36 AM
PaulS PaulS is offline
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Ha Bailie - Your situation is certainly different - but an inspiring example of the limitations of statistics - as is your zest for life. Glad to hear you're playing 18 holes - I think you were down to 9 last time you mentioned golf. The road trip sounds like an epic adventure - Hope you have a very big vehicle - enjoy every second. You're going west to east? I encourage a stop at the Red Iguana in Salt Lake City if you like Mexican food - and your within a couple hundred miles. Have fun!

Hi Kathy - I really appreciate your kind thoughts and prayers. My doctors are awesome - I'm very fortunate - they are at Weil Cornell Hospital and Sloan Kettering in NYC -
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #12  
Old Tue Jul 26, 2016, 11:04 AM
bailie bailie is offline
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Paul, traveling from North Carolina to Idaho Falls, Idaho (for job relocation). The real problem will be that no motel in their right mind would let us stay with the three big dogs (two are Great Danes and the other is almost as big). So, it is the logistics of the trip that will be daunting. This will be the fourth cross country trip moving our daughters but the first with the three dogs. Always before with either one mastiff or one Great Dane. Healthwise I feel up for it, dogwise I am not so sure.
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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 Wed Jul 27, 2016, 03:17 AM
DanL DanL is offline
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Paul,

When I went on vidaza about 7 months after transplant, I saw results within the first month. I was showing preliminary signs of relapse, but the vidaza seemed to help my transplant out quite a bit. I only went through 6 months of treatment, but if I recall correctly , my platelets almost doubled and my HGB went up by about 3 points as well from about 8.5 to 11.5 - again this has been a while, but that is what I recall. My attempts at using vidaza pre-transplant did not have any seemingly positive results - everything just declined, so I think that the new marrow responded better.

I hope all turns out well on your second biopsy and that none of this additional treatment is needed. I know that we talked about a DLI with my doctor as well, but his experience seemed to suggest that there was not much difference between DLI and non DLI if the vidaza worked in the first couple of cycles.

Good luck with all of the results and decisions.
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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  #14  
Old Wed Jul 27, 2016, 09:19 AM
bailie bailie is offline
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Dan, what is your schedule for BMBs? I'm on for every three months.
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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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  #15  
Old Wed Jul 27, 2016, 11:31 AM
PaulS PaulS is offline
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Hi Dan - I don't have all the BMB results back - but the flow cytometry was worse and I have skin nodules (Sweets Syndrome) previously associate with my disease - so they think I'm relapsing. Planning to start AZA next week along with Venclexta and see how it goes. I'm encouraged that you responded so well to the AZA even though you hadn't previously - I'm in a similar boat - so you give me reason to hope I'll respond the second time around. Thanks again for your support.

Good luck with the dogs, Bailie!

p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #16  
Old Wed Jul 27, 2016, 10:48 PM
DanL DanL is offline
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@bailie - i am currently only on BMBs as needed, meaning that if my counts drop or if there is some other problem, we'll take a look at 1 year from my last biopsy which would be in november,

@paul s - i too am hopeful that you will have good success with vidaza the second time around.

I know that i have asked about getting biopsies done more frequently, but according to the doctors, your peripheral numbers almost always show negative movement if there is an underlying problem. fortunately, my numbers have been either steady or stronger continuously since my last biopsy in November of last year. I was really quite ill at the time and received my first and second injections of neulasta - it was the only times and last times that i ever received neulasta - the results were immediate, and apparently lasting. I keep forgetting that I received those, but the difference was night and day.
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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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