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  #26  
Old Fri Mar 22, 2019, 08:45 PM
lisa3112 lisa3112 is offline
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That's such great news, David! Keep engrafting little cells! Hopefully the side effects have started to settle down? I am now 3 years post transplant and doing really well. This is the really tough stage you are in, but it does get better! Keep getting up every morning and shower! It makes you feel so much better to face the day. Lisa
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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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  #27  
Old Sat Mar 23, 2019, 02:44 AM
Cheryl C Cheryl C is offline
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Well done David. You’ve started on the path to recovery. Best wishes for going home. I pray you will come through with flying colours.
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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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  #28  
Old Fri Apr 19, 2019, 02:42 PM
David T David T is offline
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Update from David

Hello again folks,

Thank you for your kind words, and the the encouragement from those of you who have experienced a SCT. I managed to get home on 17th March, and what a huge relief that was. Although I received great treatment throughout the long months in hospital, I was reaching the limits of my endurance and my morale was flagging. A big part of it was not enjoying my food any more because my sense of taste was all messed up and I felt slightly nauseous all the time due to the anti-rejection drug.

I started off on twice weekly outpatients visits for blood tests, a Hickman line dressing change and a consultants appointment. Some of the medication was reduced quite early on, which made me feel much better. Now I am down to one appointment a week, well ahead of schedule. I have experienced some very unpleasant symptoms, which I won't go into, but I am never sure if it is GVHD or the medication, Thankfully they only seem to last for a few days. I was warned about fatigue, but it seemed to pass after a couple of weeks. During that time I sometimes felt extremely cold, no matter how much heat and clothing I used. It turns out that all the energy from the body goes into blood cell regeneration, taking heat away from the rest of the body.

Now my platelets are up to 130 and my Hb is over 100. WBC and neutrophils were doing well but have dropped back a bit, but the doctors don't seem worried.

Most recently I have had to start taking stronger anti-viral drugs because they detected the CMV virus. We all carry it, but when your immune system is fragile and being artificially suppressed it can be very nasty.

So the bottom line is that I am doing well, enjoying my food again and my hair is just starting to grow back. I still consider myself extremely fortunate and savour every day. The past nine months seem like a bad dream and I am tempted to overdo things. Fortunately I have a wife to nag me into following the doctor's advice.

Now that the spring weather is here I am doing a bit of work in the garden, although even there I have to be careful about cuts, scratches, contact with soil and sun exposure. Apparently the chemo takes away your UV resistance and makes to more prone to skin cancer.

If anyone is starting out on the SCT journey, all I can say is that a successful SCT is completely life changing. I don't want to be over optimistic at this early stage, but I really do feel as though I can put the MDS and AML behind me and look to the future again.
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David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. No genetic mutations. Developed into AML with FLT3 mutation while waiting for a SCT. Allogenic SCT - MUD in Feb 2019. Relapsed June 2019. Azacitidine, Venetoclax and DLI.
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  #29  
Old Sun May 5, 2019, 01:25 AM
quantpsyc quantpsyc is offline
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David, wonderful news to hear you are doing so well. My husband is at Day t-2, last day of chemo in morning then TBI next day, then MUD transplant on Tuesday May 7. He had 5 months of decitabine which put him in remission and brought his blasts down enough for transplant. Starting to struggle a little with nausea and fatigue, but still walking 2 miles a day. His care team at Duke is awesome.
Hope you continue to do well!
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Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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  #30  
Old Thu May 23, 2019, 04:00 PM
David T David T is offline
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Update from David

Thanks for your post Kathleen. I hope Ed's transplant was successful. Perhaps there are some early sign of engraftment already.

It's a difficult journey, with so many side effects from the medication and the transplant itself. I found it difficult to enjoy life at that stage, and sometimes I became irritable with my dear wife, who was so loyal, faithful and supportive.

I am at Day 90 today, and doing well. They are talking about reducing my medication and removing my Hickman line within the next couple of weeks.

Over the past couple of months I have been gradually re-gaining my strength and my counts have been improving, but with a few setbacks. I suddenly became neutropenic again for a couple of weeks, but a change in medication resolved that. My blood pressure also shot up, so I had to go back on hypertension medication, but I am gradually getting back off it again.

So be prepared for ups and downs and accept the fact that it will take anywhere between 6 months and 18 months before you can start to say you feel 'normal' again.

Best wishes to all of you, patients and carers, at the different stages of your journey.

David
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David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. No genetic mutations. Developed into AML with FLT3 mutation while waiting for a SCT. Allogenic SCT - MUD in Feb 2019. Relapsed June 2019. Azacitidine, Venetoclax and DLI.

Last edited by David T : Thu May 23, 2019 at 05:49 PM. Reason: update
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  #31  
Old Sat Jun 15, 2019, 09:17 PM
quantpsyc quantpsyc is offline
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Thanks David. Your advice is right on target. Ed is now Day t+39. So far so...okay. In the first three weeks he spent 7 days in hospital for sepsis, and then another few days for fever of unknown origin. Both resolved, thanks God!
Engraftment started about day 21 (normal for marrow as source of cells) WBC/ANC first to come up, then platelets zooming up, RBC/Hg taking it's own sweet time but headed up. And WBC did a u turn after granix removed, but seems to slowly be climbing now. Now suspected aGVHD of the gut, endoscopy scheduled this Tuesday. Weight loss and difficulty eating are the primary concerns for now. To us, things seem harsh, but doctor says in the big picture Ed looks great and is doing great. Thankful for each day!
How are you doing now? Kathleen
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Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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  #32  
Old Sun Jun 23, 2019, 07:42 AM
David T David T is offline
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Update from David

Unfortunately my stem cell transplant has started to fail and the leukaemia has returned already.

I have been back in hospital for a week and half now. They have started me on azacytidine and venetoclax to try to buy some time, but the prognosis is not good.

I don't feel unwell, but they won't let me go home because I am running a constant temperature.

So my world has been turned upside down again. The pure joy of a seemingly successful transplant has suddenly changed to despair. What a cruel disease.
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David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. No genetic mutations. Developed into AML with FLT3 mutation while waiting for a SCT. Allogenic SCT - MUD in Feb 2019. Relapsed June 2019. Azacitidine, Venetoclax and DLI.
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  #33  
Old Sun Jun 23, 2019, 01:06 PM
quantpsyc quantpsyc is offline
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Oh David sorry to hear this. Try to keep your spirits up, and continue the battle! At Day t+47 My husband is finally starting to feel better after Budesonide for aCVHD of the small intestine, and his counts are looking good, but his 30 day mixed chimerism (only 48% donor in myeloid subset, >98% in lymphoid subset) shows risk for relapse or graft failure. Already talking DLI.

This is indeed a cruel disease! We will keep you in our thoughts and prayers.
Kathleen
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Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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  #34  
Old Thu Jun 27, 2019, 05:44 AM
Meri T. Meri T. is offline
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David,
I am sorry to hear about your relapse.
Hopefully the doctors are doing their best for you.

Please take care, and don't lose hope.

Meri
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Female 54, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin.
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  #35  
Old Tue Aug 27, 2019, 06:49 PM
David T David T is offline
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Fighting back

Well I am still here.

I have now had a DLI and three rounds to Azacitidine. The leukaemic cells are much reduced, but my blood counts are not recovering.

My platelets got up to 70 but have dropped back to 18, so I am going to need more blood and platelet transfusions.

I seem to have skin GVHD now, probably as a result of the DLI. It is very itchy, but on balance it is probably a good thing, as long as it doesn't get out of control.

Thanks for the good wishes.

I will keep you posted.
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David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. No genetic mutations. Developed into AML with FLT3 mutation while waiting for a SCT. Allogenic SCT - MUD in Feb 2019. Relapsed June 2019. Azacitidine, Venetoclax and DLI.
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  #36  
Old Tue Aug 27, 2019, 06:51 PM
David T David T is offline
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Update on Ed

Kathleen,

How is Ed doing?

David
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David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. No genetic mutations. Developed into AML with FLT3 mutation while waiting for a SCT. Allogenic SCT - MUD in Feb 2019. Relapsed June 2019. Azacitidine, Venetoclax and DLI.
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  #37  
Old Thu Aug 29, 2019, 02:42 PM
shadowii shadowii is offline
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keep it up David
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  #38  
Old Fri Aug 30, 2019, 03:30 AM
DanL DanL is offline
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David,
Stay positive even in the face of adversity, I had a minor relapse in 2014 and managed to come out ahead, I trust you to will defy the odds.

Best wishes

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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  #39  
Old Tue Sep 3, 2019, 01:51 AM
quantpsyc quantpsyc is offline
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Fighting the good fight!!

David so glad to see your post. Have been checking often for your update, thinking about you and praying for you. I have read of cases that a dli and/or maintainance HMA seemed to recover the graft. Will keep praying for your full recovery!

Thanks for asking about Ed. After a strong early response to high-normal territory for platelets and WBC, and rbc slowly approaching normal, Ed had a complete loss of response in all cell lines. Transplant team says sometimes this happens, but it will turn around. Biopsy 30 days ago showed no sign of relapse (no blasts and no dysplasia, but very hypocellular marrow). Dr is perplexed that it has not turned around yet. They are trying to wean him off of any drugs that can cause myelosuppression (which is like...all of them). His ANC went to near 0 so they started his Granix again. That brought the ANC back but pushed his platelets even lower, so they stopped the granix. For several weeks he was getting transfusions of platelets and prbc (he never needed transfusions prior to transplant, his major issue was with WBCs and infection). It's now been over two weeks, he seems to slowly be coming back (nosebleeds and bruising has stopped, and energy seems a little better) Tomorrow he gets blood tests and sees transplant dr. I know dr. wants to do another biopsy before deciding next steps. Will update when we know more.
May God watch over each of us, and help us travel this rocky road! Kathleen
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Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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  #40  
Old Wed Sep 11, 2019, 09:43 PM
quantpsyc quantpsyc is offline
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Update on Ed. His counts are coming back up, accompanied by worsening skin gvhd (dr says still acute) but we will gladly deal with that, if that's what it takes for the graft to work!! ANC 3.3, Platelets 77, Hg 9.5. Starting to get some energy back!

Hope you are doing better, David!!
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Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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  #41  
Old Sun Oct 27, 2019, 05:45 PM
David T David T is offline
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Still Fighting

Thanks for the update on Ed. I am glad to hear that he is making progress, despite the inevitable setbacks.

I am doing well at the moment. The chemo was discontinued after three cycles because my biopsy showed that I was back in remission and my chimerism was up to 99%.

Since them my blood counts have been erratic, but they are gradually improving, with frequent and inexplicable drops.

I been having bone marrow biopsies about once a month and I am plagued with GvHD of the gut, skin and eyes, but it is worth the price. The doc is thinking about a top up of stem cells to boost my platelet count.

Thanks for listening to my story. I hope it can be of some help to those on a similar journey. Never give up and keep your focus on the future.
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David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. No genetic mutations. Developed into AML with FLT3 mutation while waiting for a SCT. Allogenic SCT - MUD in Feb 2019. Relapsed June 2019. Azacitidine, Venetoclax and DLI.
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  #42  
Old Thu Oct 31, 2019, 02:10 AM
Cheryl C Cheryl C is offline
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You've had a massive year, David. Great that you're back in remission again. May it continue!!
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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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  #43  
Old Tue Nov 5, 2019, 10:32 PM
quantpsyc quantpsyc is offline
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Fighting the good fight!!

Hey David, Glad they are finding solutions for you. It seems like Ed is a mile or so behind you on a similar path. Eds platelets have crashed, RBC and WBC declining but not as rapidly. Good news is biopsy shows no relapse. Bad news is that biopsy shows not much of anything else either, extremely hypocellular. "May be" graft failure (in that I hear "maybe not"!!). Considering Eltrombopag and also talking DLI. Except for the pesky nosebleeds and bruising Ed is feeling pretty good and thankful for each day.
Hope your path continues to be smoother! Prayers for us all!
Kathleen
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Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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