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  #1  
Old Tue Apr 19, 2016, 04:42 PM
Greg H Greg H is offline
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Greg H - Vidaza as a Bridge to Transplant

Hello All!

I've just finished up my first course of Vidaza, a drug that is supposed to reduce the number of immature white blood cells in my marrow and improve my blood counts as I move toward a stem cell transplant.

To recap, for those who haven't found my Campath or Danazol archives, I was diagnosed with low-risk MDS in March of 2010, with dysplasia in all cell lines, a duplication on the long arm of Chromosome 1, Trisomy 8, and HLA-15. All of that, combined with my relatively young age at diagnosis (53) made me a good candidate for immunosuppressants. I entered a trial of Campath at NIH in November 2010, but failed to respond.

A year later, I entered the Danazol trial at NIH, because they found a mutation in my TERT gene and extremely short telomeres. The Danazol worked well for a few years. But, after a (possibly unrelated) bout of acute necrotic pancreatitis and some heavy duty prednisone therapy, my need for bi-weekly RBC transfusions returned. A new biopsy found 15 percent blasts and progression to acute myeloid leukemia, landing me with an RAEB-2, high-risk diagnosis.

The folks at NIH and my local hematologist agreed that the only reasonable course of action was to ditch the Danazol in favor of Vidaza and to see a transplant specialist real quick.

As I mentioned at the outset, I have finished up my first round of seven Vidaza injections, given Monday-Friday of one week and Monday and Tuesday of the next. That is repeated in 21 days.

So far, the Vidaza has not killed me.

Important Note on Medical Terminology: When doctors say a drug is "well-tolerated" that means it is "unlikely to kill you outright." That does not mean it will all be milk and cookies.

Actually, the Vidaza has not been all that bad. It is not a harsh cyto-toxic (cell-killing) chemotherapy. So my hair is not falling out. It did, in fact produce three days of diarrhea (some folks evidently have constipation instead) which led to some dehydration, possible electrolyte depletion, and one day (#7) when I couldn't get out of bed until 3:30pm. On that day, it also produced notable brain fog.

The Vidaza IV is, in my cancer center, preceded by a dose of Zofran, to fight nausea, and dexamethasone, a steroid which is also used to combat possible Vidaza side effects. Based on my experience with Predisone while recovering from a nasty batch of pyoderma gangrenosum, I know I am sensitive to steroids. I have experienced some mania, euphoria, and emotionalism, as well as increased near-sightedness, since starting the dexa. And I also have significantly increased appetite. I have little doubt that I will also experience a considerable let-down once it is stopped.

It is quite possible that the Vidaza side effects -- particularly in terms of decreased blood counts -- will actually get worse over the next couple of weeks, as the drug goes to work on my marrow.

I do not currently understand how Vidaza works. I plan to find out and share it with you when I understand it.

I have an appointment with Dr. Mitchell Horwitz at DukeHealth on Thursday to discuss transplant. I hope that appointment will help define the timeframe of my future. I have a business to unwind, financial plans to make, family support to organize, and a host of other little details to work out.
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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 Tue Apr 19, 2016, 05:23 PM
PaulS PaulS is offline
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Hi Greg - I've followed your posts over the years and thank you for sharing your experiences. I'm curious why you went down the clinical trial path instead of moving more quickly to transplant?

As far as Vidaza goes - I did one cycle without much success - then moved to transplant - the only drug they gave me was for nausea - I hadn't heard of giving steroids as a pretreatment - but I didn't have any noticeable side effects. Some have done very well with Vidaza - but it can take a while.

Do you have a match yet for your transplant?

Hope you do well going forward - a lot of people are rooting for you.

Best wishes,
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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  #3  
Old Tue Apr 19, 2016, 07:02 PM
Sally C Sally C is offline
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Hi Greg,
You may remember me - I too have followed you over the years as my husband is a fellow NIH patient.
I am so sorry for this turn of events. Please know I so wish you well. You are a brave soul with a wonderful wit that I know will help you in the coming weeks and months.
From one North Carolinian to another -
God Bless and best wishes,
Sally
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  #4  
Old Tue Apr 19, 2016, 07:08 PM
Greg H Greg H is offline
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The sweet spot for transplant

HI Paul!

Thanks for your kind words. And excellent question!

Many folks -- including Dr. Danielle Townsley at NIH -- believe there is a "sweet spot" for MDS transplant, not too early and not too late. That sweet spot is when the disease begins to move from low risk to high risk and head toward AML.

Some of the pioneering work on this idea was done by Dr. Cory Cutler fifteen or so years ago. His research found that the best overall survival was obtained by transplanting at progression. Transplant related mortality is too great a risk for low-risk patients, who can survive for years with supportive care and other interventions like immunosuppression and Danazol. But transplanting is more risky once the patient has moved into AML. So you have to try to hit the sweet spot. There's a good respective and updates in a Cutler article here.

Townsley actually used the term "sweet spot" when she delivered her advice on my situation.

When I was first disgnosed, my local hematologist immediately set me up with an appointment for a port placement so Vidaza could be started, as well as a transplant consult. I visited with the transplant doc several times. And I started my own research. I found that transplant is risky and disruptive, the risk of relapse is high within five years, and that many folks, in addition to Cutler, felt it is not wise to transplant low risk MDS patients.

I found about immunosuppression and the Camapth trial at NIH. Talking with the principal investigator on that trial, Dr. Matthew Olnes, I found him strongly opposed to transplant for low risk, younger patients.

NIH is the pioneer in immunosuppression, and the Campath protocol seemed to hold more promise than ATG or Cyclosporine. So I went down that road.

As a result, I have had six years of remarkably good health -- which is likely more than I could expected from transplant.

But, as Dr. Townsley made clear, now is the time, and there is no reasonable alternative.

Thanks for your well wishes!

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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  #5  
Old Tue Apr 19, 2016, 07:38 PM
bailie bailie is offline
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Greg, again very interesting. I am in the middle of my 20th (and last) cycle of Vidaza (eight cycles pre-transplant and twelve after relapse after transplant). Remember that Vidaza often takes up to six cycles to be effective.

My interest in the telomeres was heightened when I relapsed. I had a lung fungal infection at about Day +210. Immediately preceding that I was on 160 mg/day prednisone and had the corresponding temporary Diabetes II. My theory (probably wrong, but I like it) is that this situation greatly shortened my telomeres and caused my relapse. Up until that time I was 100 percent donor cells. My relapse was strange in that none of the genetic mutations prior to transplant have appeared. Instead, I relapsed to AML and the "Philadelphia chromosome" which is a translocation of the 9th and 22nd chromosome (very rare). After three rounds of Vidaza and Sprycel (a TKI targeting the 9;22) I have been mutation free and doing very well physically. I feel fortunate in that I have had very little GVHD and feeling fine.
We will follow your progress with interest and hope you do very well.
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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 Tue Apr 19, 2016, 08:04 PM
PaulS PaulS is offline
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Thanks for the interesting response - I was also advised with low risk MDS to wait - and did so until I was needing frequent transfusions, had excess blasts showing up (maybe 8% but probably lower) and a mutation (I don't recall what) that showed up briefly but disappeared before transplant. I tried EPO and Vidaza along the way, unfortunately without success.

My experience with watching and waiting was a slow but steady decline, waiting to get bad enough for transplant - exercising got harder with no hope of long term improvement - I found it fairly depressing - The positive thing about transplant is that it brought hope for being cured - and the prospect of continuously getting better and returning to normal activities - I felt a little more in control - I could maintain a positive attitude, force myself to move and eat - Although with plenty of bumps in the road - overall the experience has been inspiring.

I'm glad you've done well up until now - and am expecting you to fly through the transplant -

Best wishes

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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  #7  
Old Wed Apr 20, 2016, 12:57 AM
Greg H Greg H is offline
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Quote:
Originally Posted by Sally C View Post
Hi Greg,
You may remember me - I too have followed you over the years as my husband is a fellow NIH patient.
I am so sorry for this turn of events. Please know I so wish you well. You are a brave soul with a wonderful wit that I know will help you in the coming weeks and months.
From one North Carolinian to another -
God Bless and best wishes,
Sally
Hi Sally!

Thanks so much! I hope you all continue to do well based on the eltrombopag.

This is a big adventure not necessarily of my own choosing, but the course of my disease makes it a pretty much inevitable step.

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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  #8  
Old Wed Apr 20, 2016, 01:03 AM
Greg H Greg H is offline
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Quote:
Originally Posted by bailie View Post
My theory (probably wrong, but I like it) is that this situation greatly shortened my telomeres and caused my relapse. Up until that time I was 100 percent donor cells. My relapse was strange in that none of the genetic mutations prior to transplant have appeared. Instead, I relapsed to AML and the "Philadelphia chromosome" which is a translocation of the 9th and 22nd chromosome (very rare).
Hi Baille!

Very interesting about the Prednisone. With my pancreatitis, I was prescribed 60mg per data first. But the hospital staff inadvertently gave me 120 mg in about twelve hours. That prompted a psychotic break with vibrant hallucinations lasting over at least a two day period. They eventually brought me down with haldol, I am told. It was a wild ride for someone who never dropped acid, I can tell you. This leads me to suspect that I am pretty susceptible to Prednisone.

When I left the hospital on 50mg per day, my HGB suddenly rose into the 12s for a few weeks, but then dropped precipitously once the taper began.

It all does lead me to suspect the prednisone as contributing to the worsening of my disease, but I doubt there is a way to establish that. And it did close up the hole in my belly, for which I am grateful.

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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  #9  
Old Wed Apr 20, 2016, 10:07 AM
PaulS PaulS is offline
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Very interesting about prednisone - When I was diagnosed I was prescribed prednisone to treat painful skin nodules I would get - and had been getting for several years - the prednisone cleared them up with a high dose and we eventually settled on 10 mg per day which I was on up until the transplant. The prednisone did not cause a rise in HgB. This was a bit surprising since the skin nodules suggested an autoimmune component to my MDS.

We discussed the possibility of immuno-suppressant treatment for the MDS but felt that since the prednisone did not induce any changes in blood counts - that other immune suppression would also not work -

Greg - had you been treated with Campath yet when you were given the prednisone?
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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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  #10  
Old Wed Apr 20, 2016, 01:03 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by Greg H View Post
Important Note on Medical Terminology: When doctors say a drug is "well-tolerated" that means it is "unlikely to kill you outright." That does not mean it will all be milk and cookies.
Ha Ha! I actually never thought about it that way, but it makes sense!

Like everyone else here, I am very sorry to read that your disease has come back and wish you continued strength in your fight.

I thought that it was interesting that you blamed prednisone for your current situation. When I first was diagnosed with very low but stable blood counts, my doctor tried 2 weeks of 100mg/day prednisone to see if that had any affect. My health and counts tanked during the trial and so I also think that it was a factor in my disease progression. My theory (and I always have one) is that in immune mediated bone marrow failure, the rogue T-cells are going crazy attacking the body's cells. Prednisone lowers the bodies immune system, but doesn't kill off the rogue T-cells. So whatever fight the body had left against the those bad cells, it loses. Just a theory...

I also have pancreas issues. Are you doing Pancreatic Enzyme Replacement Therapy?
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52 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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Old Wed Apr 20, 2016, 02:19 PM
Greg H Greg H is offline
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Quote:
Originally Posted by PaulS View Post
Greg - had you been treated with Campath yet when you were given the prednisone?
Hi Paul,

Yes sir. I had Campath in November 2010, but didn't have any experience with Prednisone until November 2015.

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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Old Wed Apr 20, 2016, 02:22 PM
Greg H Greg H is offline
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Quote:
Originally Posted by Hopeful View Post
I also have pancreas issues. Are you doing Pancreatic Enzyme Replacement Therapy?
Hi Hopeful!
I like your prednisone theory. I think the marrow is generally a very sensitive organ -- particularly among those of use who have some level of marrow failure. I recall that I had to stop exjade at one point because it was messing with my marrow.

I only have about on-third of my pancreas left, but, so far, I have needed neither insulin or replacement enzymes. I hope that holds up. It looks like transplant alone will have me on plenty of drugs all by itself!

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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  #13  
Old Sat Apr 23, 2016, 10:15 PM
Greg H Greg H is offline
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Initial Appointment at Duke

Marcy and I journeyed up to DukeHealth in Durham on Thursday, for my initial transplant consult with Dr. Mitchell Horwitz.

I was really impressed with Dr. Horwitz as a thoughtful, careful, studious practitioner of the art. He took plenty of time, asked lots of questions, and cheerfully fielded lots of questions from us.

The initial objective was to determine whether I am a good candidate for a bone marrow transplant. The answer is Yes. Aside from my recent pancreatitis episode, I am healthy, without comorbidities like heart disease and diabetes. And I gave up all my debilitating vices years ago.

We plan to begin the donor search immediately, with the expectation that it will take 6-8 weeks. Meanwhile, I will continue my monthly cycles of Vidaza in an attempt to drive down the blast count in my marrow. The expectation is that we will move to transplant in about ten weeks or so -- that is, around the end of June or beginning of July.

The transplant-related question that remains is the type of conditioning.

Transplant typically follows one of two paths: fully myeloablative conditioning, in which we will attempt to totally eliminate my blood production system and replace it with a new one; or reduced intensity conditioning, using drugs that are somewhat less toxic and counting on the emerging new immune system from my donor to mop up the remnants of my blood factory.

Dr. Horwitz is inclined to go with a fully myeloablative conditioning. He explained that this is more likely to be curative and to avoid relapse after transplant.

However, he indicated that he wants to do some additional research to make sure that my TERT mutation and short telomeres do not mitigate against the high-intensity conditioning.

Which option we settle on will determine how long I am in the hospital -- as opposed to being treated on an outpatient basis. The fully myeloablative conditioning is also riskier up front because the drugs involved are more toxic and the process leaves the patient with no shred of a functioning immune system.
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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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Old Sun Apr 24, 2016, 02:41 PM
Neil Cuadra Neil Cuadra is offline
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Greg,

Did it take Dr. Horwitz long to figure out what a well-informed patient you are? I hope he found it to be a pleasure.

Quote:
Originally Posted by Greg H View Post
The transplant-related question that remains is the type of conditioning.
You're in excellent hands to make this decision. Dr. Horwitz is one of the MDS specialists doing research on exactly this question. See:
Results of a Phase III Randomized, Multi-Center Study of Allogeneic Stem Cell Transplantation after High Versus Reduced Intensity Conditioning in Patients with Myelodysplastic Syndrome (MDS)
Keep us posted on the donor search. Those of us who have had transplant experiences can share what we know, if it will help you with your own.
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Old Sun Apr 24, 2016, 03:50 PM
Greg H Greg H is offline
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Thanks Neil!

I do try to do my research. I think Dr. Horwitz was a little surprised when I asked about a current trial he has going that involves injections of T-Cell Depleted Donor Lymphocytes as a way of minimizing GVHD. But it's a fascinating idea, and it's on Duke's webpage for him. That trial is just about full, evidently.

He has another one going that involves giving transplantees a drug that suppresses the secretion of pancreatic enzymes, the idea being that the harsh enzymes might be a cause of gut GVHD, just as UV exposure can be a trigger for GVHD.

Dr. Horwitz indicated that he'd be talking with me about clinical trials, and I'm all for that!

Take care!

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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Old Mon May 16, 2016, 08:40 PM
Greg H Greg H is offline
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Pins & Needles

Today, I sit on pins and needles in my very tiny hospital bed at Duke University Hospital.

[There are really, really smart people here, so its surprising to me that, when naming the place, no one figured out that Duke University Hospital" was going to be abbreviated as DUHon every wheelchair, bed, and other piece of equipment. But the Duke Blue Devils were my Dads most favorite basketball team, and basketball was almost like religion for him, so I going to cut these folks some slack.]

Im on pins & needles because my two high-powered docs are meeting to decide whether I continue with Vidaza leading to transplant, or if we charge on in with some induction chemotherapy and scorch the earth, figuring we get to transplant once that is done.

I wound up here because of a fever, of course. I spent four days in Stanly Regional Medical Center my home hospital with fever in late April, getting out just in time to attend the big MerleFest traditional music festival in North Wilkesboro, NC, where my daughter was performing and my Mom and Aunt Princess were attending.

I had a couple of fevers at the festival, and a lot of night sweats, but persevered until I returned home and, on May 4, had a sudden fever that spiked at 104.5 F. I was delirious, and my local hematologist sent me off to CMC Northeast, a hospital in Concord NC that has an infectious disease team. The idea was to see if they could discover the reason for my fevers and recommend some antibiotics.

After four days there, the blast count (immature white cells) in my bloodstream spiked up to 16%. That led to a concern that I had progressed to Acute Myeloid Leukemia [AML]. They shipped me off to Duke, since Id already had a transplant consult here.

Now, on Monday, May 16, I am 12 days in hospital. Never forget, it is really hard to get out of the hospital, once you are in here.

My Docs DeCastro and Horwitz both brilliant, skillful, thoughtful practitioners of the craft, are to meet today to debate, discuss, and formulate a treatment plan.

So, I sit on pins and needles.
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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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Old Mon May 16, 2016, 08:51 PM
bailie bailie is offline
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Thank you for your information. I have coined a phrase, "susceptibility crisis" for my situations and maybe others. It is fitting in that my blast count increased and relapse occurred when I had my lung infection/surgery, prednisone and the associated short term diabetes. I have wondered how quickly telomeres can lose their length and make people more vulnerable during a "susceptibility crisis"?
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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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Old Mon May 16, 2016, 09:06 PM
DanL DanL is offline
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Greg,

I totally understand the whole once you are in the hospital thing. I spent about 80 days in and out of the hospital last year, some for pain management for my hips, then developed severe pneumonia, then had an infection in my line that resulted in the line being pulled. I was also in for recurrent cellulitis and swelling in my feet......totally awesome stuff, but 5-16 days per visit.

That being said I went into transplant with about 15% peripheral blasts, they may have dropped back down to 11 or 12%, but either way, they were high. I did a fully myeloablative chemo regimen though.

My guess would be that you would be doing a reduced intensity conditioning - maybe follow with some vidaza to help it along. I think that mausmish did this for 12 months afterwards because of her risk status. I took 6 months of vidaza after i relapsed 6 months after transplant.

I am wondering if you might want a little bit of gvhd to get a little bit of the graft versus mds effect. I know that gvhd can be a bit of a pain, but I am pretty sure that it has been responsible for continuing to fight off the disease. GVHD is definitely one of the morbidities to look out for, but relapse is usually really bad.

I did read an interesting article about controlling gut gvhd with basically butter extract - it looks like there is a compound in butter that protects the gut from GVHD - at least in mice - so if your cholesterol can handle it, extra butter on everything!

Good luck with the next few weeks and months as you begin making the big decisions again.

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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Old Mon May 16, 2016, 09:23 PM
Sally C Sally C is offline
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Greg,
Know that we are pulling for you. I so wish you well.
God Bless,
Sally
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Old Tue May 17, 2016, 11:44 AM
dsellers55@gmail.com dsellers55@gmail.com is offline
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Smile Tim Sellers

Hi Greg, just reading about what all is going on. Thought I would let you know it all seems very complex and you are very well educated on your disease. Please know you are lifted up each day!
Blessings,
Tim
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Old Thu May 19, 2016, 10:06 PM
Greg H Greg H is offline
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Needles, it is

On Tuesday, I had a phone call from Dr. Horwitz explaining why it makes more sense to begin induction chemotherapy as though we were treating Acute Myeloid Leukemia [AML] rather than high-risk MDS -- as opposed to trying to continue on Vidaza.

He explained that he and Dr. DeCastro believe that all these fevers I have been having (every afternoon for the past four days), are not the result of some infection, but the result of the disease itself. Ditto the migraines, the knee pain, and the episode of stabbing pain in my eye.

My counts are terribly low. My white blood cells are three tenths of a point from zero. My platelets are trending down every day, approaching 10, where you have to have a transfusion or risk bleeding out. These are the kinds of counts you get with the conditioning chemo for a transplant. And they make it unlikely that I could return home to resume Vidaza over at Levine Cancer Center in Albemarle.

So, we are going to Plan B, which we had discussed in our initial visit with Dr. Horwitz. I had a two lumen Hickman catheter implanted in my chest yesterday and last night at about 10 pm we began the first day of seven days of serious chemotherapy using cytotoxic drugs.

Ill have seven days of continuous Cytarabine. The first three days I will also have Idarubicin.

These will make my hair fall out, though my beard may not.

The drugs will suppress all my counts. The idea is to clean out the bad stuff in my marrow, and have the remnant regrow a new blood production system.

After the therapy, Marcy and I will need to stay 3-4 more weeks in the hospital, waiting for that regrowth. After that, we may be able to stay at home for a week or so, until they are ready to do the transplant.

Normally, in AML therapy, after a few weeks, you have another smaller dose of 2-4 chemo drugs. Its called consolidation. But, in this case, we will move transplant instead. The goal there, of course, will be to transplant my existing blood production system which we know is kind of junk, because of the TERT mutation and short telomeres with a new one.

So, this will mean a longer stay in Durham for Marcy and me.

But it seems like the most reasonable course of action given my counts.

Dr. Horwitz and I have not discussed the transplant regimen, which I reckon will be highly dependent on how well I have responded to the induction chemotherapy.

So, it's needles. And I am good with that.
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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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  #22  
Old Thu May 19, 2016, 10:11 PM
Greg H Greg H is offline
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Quote:
Originally Posted by dsellers55@gmail.com View Post
Hi Greg, just reading about what all is going on. Thought I would let you know it all seems very complex and you are very well educated on your disease. Please know you are lifted up each day!
Blessings,
Tim
Thanks, Tim!

And the same to you. Glad to see you on here; folks here have been a big help to me.

When I was first diagnosed, six years ago, I read everything credible thing I could find about disease. That put me on the clinical trial path, 'til disease progression knocked me off that horse in April.

It's funny, one thing I don't know much about is myelofibrosis. But my last BMB says I have it now, so I am going to have to do some reading.

Take care of yourself, friend!

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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  #23  
Old Thu May 19, 2016, 10:12 PM
Greg H Greg H is offline
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Originally Posted by Sally C View Post
Greg,
Know that we are pulling for you. I so wish you well.
God Bless,
Sally
Thanks, Sally! You're the best!

I am really confident in these Duke folks.

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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  #24  
Old Thu May 19, 2016, 10:26 PM
Greg H Greg H is offline
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Originally Posted by DanL View Post
My guess would be that you would be doing a reduced intensity conditioning - maybe follow with some vidaza to help it along. I think that mausmish did this for 12 months afterwards because of her risk status. I took 6 months of vidaza after i relapsed 6 months after transplant.

I am wondering if you might want a little bit of gvhd to get a little bit of the graft versus mds effect. I know that gvhd can be a bit of a pain, but I am pretty sure that it has been responsible for continuing to fight off the disease. GVHD is definitely one of the morbidities to look out for, but relapse is usually really bad.

Dan
Dan,

As usual, your extensive research has allowed you to deduce exactly the struggle that I see going on in Dr. Horwitz's mind. My TERT mutation and short telomeres have him worried that I might have a more fragile than usual marrow, which make him lean toward reduced intensity conditioning.

On the other hand, he knows, and his former NIH colleagues are reminding him that a fully myeloablative conditioning regimen is a better guarantee of relapse-free survival.

That's why I think he will wait to see how the induction chemo goes, before making a decision.

One thing I haven't discussed with either Horwitz or NIH is whether, once we are done with induction, and waiting for my blood system to rebuild, we should add Danazol to the list of meds.

We know I have the mutation and short telomeres. We know I respond to Danazol. So, why not try to help the recovery process along with a little Danazol boost?

The counter arguments I see are that no one has ever done it and that Danazol seems to take months rather than weeks to work its magic.

Still, I am going to bring it up.

Take care!

Greg
__________________
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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  #25  
Old Fri May 20, 2016, 12:17 AM
PaulS PaulS is offline
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Hi Greg - I also had Myelofibrosis - My doctor thinks it contributed to the relatively long time it took my counts to rise post transplant - it was harder for the new stem cells to find a home due to the scarring - he said it would take a year or so to go away post transplant - although the last BMB didn't show any - but he thought that was due to the BMB sample and not necessarily the Myelobirosis away - I'm, however, going with it went away - got a BMB next month, so we'll see.

I'm not sure I understand the reduced conditioning BMT - I received non-myeloablative conditioning due to co-morbidities - otherwise I would have had myeloablative conditioning with t-cell depletion - but transplant centers and doctors all seem to have their preferences - but it is interesting how many different approaches there are to similar problems - its all a bit of an art I think.

Glad you seem to be maintaining a positive attitude - I think that's very important.

Hope the food is good in the hospital -

Best,
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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