Home         Forums  

Go Back   Marrowforums > Treatments > Transplants
Register FAQ Search Today's Posts Mark Forums Read

Transplants Bone marrow and stem cell transplantation

Reply
 
Thread Tools Search this Thread
  #26  
Old Fri Mar 22, 2019, 07:45 PM
lisa3112 lisa3112 is offline
Member
 
Join Date: Jun 2016
Location: Melbourne
Posts: 105
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
__________________
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!
Reply With Quote
  #27  
Old Sat Mar 23, 2019, 01:44 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 829
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.
__________________
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.
Reply With Quote
  #28  
Old Fri Apr 19, 2019, 01:42 PM
David T David T is offline
Member
 
Join Date: Oct 2018
Location: London, England
Posts: 13
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.
__________________
David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019. Relapsed June 2019. Azacitidine and Venetoclax.
Reply With Quote
  #29  
Old Sun May 5, 2019, 12:25 AM
quantpsyc quantpsyc is offline
Member
 
Join Date: May 2017
Location: Leland, NC
Posts: 12
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!
__________________
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.
Reply With Quote
  #30  
Old Thu May 23, 2019, 03:00 PM
David T David T is offline
Member
 
Join Date: Oct 2018
Location: London, England
Posts: 13
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
__________________
David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019. Relapsed June 2019. Azacitidine and Venetoclax.

Last edited by David T : Thu May 23, 2019 at 04:49 PM. Reason: update
Reply With Quote
  #31  
Old Sat Jun 15, 2019, 08:17 PM
quantpsyc quantpsyc is offline
Member
 
Join Date: May 2017
Location: Leland, NC
Posts: 12
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
__________________
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.
Reply With Quote
  #32  
Old Sun Jun 23, 2019, 06:42 AM
David T David T is offline
Member
 
Join Date: Oct 2018
Location: London, England
Posts: 13
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.
__________________
David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019. Relapsed June 2019. Azacitidine and Venetoclax.
Reply With Quote
  #33  
Old Sun Jun 23, 2019, 12:06 PM
quantpsyc quantpsyc is offline
Member
 
Join Date: May 2017
Location: Leland, NC
Posts: 12
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
__________________
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.
Reply With Quote
  #34  
Old Thu Jun 27, 2019, 04:44 AM
Meri T. Meri T. is offline
Member
 
Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 133
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
__________________
Female 53, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
No donor - Cord Blood Transplant? Sue&Dave Transplants 6 Tue Nov 22, 2016 01:15 PM
16 months past SCT and doing fairly well. The sage of my transplant, start to now rar MDS 7 Wed Nov 18, 2015 10:26 PM
Waiting for possible bone marrow transplant Optimistic AA 1 Mon Oct 13, 2014 09:23 PM
New to site, Transplant Disappointment & Worries sveness Transplants 2 Sun Mar 4, 2012 11:05 AM
NMDP Provides Transplant Information Marrowforums Transplants 1 Tue May 8, 2007 04:00 AM


All times are GMT -4. The time now is 04:39 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2019 Marrowforums.org