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 Nov 12, 2010, 07:47 AM
Susan L Susan L is offline
Member
 
Join Date: Jun 2010
Location: Ga
Posts: 245
Karen

Your news is great. I am very happy for you. Your question is one that I would have asked also and glad you gave us the information. I wish you all the best. I will pray for your success.
__________________
Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
Reply With Quote
  #27  
Old Fri Nov 12, 2010, 08:02 AM
Susan L Susan L is offline
Member
 
Join Date: Jun 2010
Location: Ga
Posts: 245
Karen

What great news! Very happy for you and I know you are having alot of emotions right now. I am praying for you both and wishing you all the best.
__________________
Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
Reply With Quote
  #28  
Old Fri Nov 12, 2010, 11:41 AM
Laura Laura is offline
Member
 
Join Date: Aug 2006
Location: Minnesota
Posts: 433
Great news! Good luck with everything. Thinking of you.
Laura
__________________
Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
Reply With Quote
  #29  
Old Fri Nov 12, 2010, 12:18 PM
Greg H Greg H is offline
Member
 
Join Date: Sep 2010
Location: North Carolina
Posts: 660
Quote:
Originally Posted by mausmish View Post
I asked if he was sure I need to do this now and he said yes because of my prior chromosome abnormalities and blasts--I was well on my way into AML when initially diagnosed. Also, because the Vidaza will stop working at some point that can't be predicted, now is the best time. I am ready.
Hey Karen!

This is the crazy thing, right? You get better and THEN they want to transplant you.

But it makes sense, even though it makes no sense, and I am happy for you.

Good luck!

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
Reply With Quote
  #30  
Old Fri Nov 12, 2010, 09:20 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
Transplant blog

Thanks again, everyone! I've decided to create my own WordPress blog instead of using Caring Bridge. Here's the address: http://www.mausmarrow.com/

"Mausi" is what my husband calls me...that's where the name of my business and my other domains comes from.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #31  
Old Sat Nov 20, 2010, 03:56 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
Clinical trial NA_0017193

I met with the doctor yesterday to sign consents for a multi-institutional Phase II clinical trial, NA_00017193, that I’m participating in at Johns Hopkins. Two other institutions, M.D. Anderson Cancer Center in Houston and Fred Hutchinson Cancer Research Center in Seattle. The full scoop is posted on my blog, http://www.mausmarrow.com/.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #32  
Old Sat Nov 20, 2010, 09:19 PM
Greg H Greg H is offline
Member
 
Join Date: Sep 2010
Location: North Carolina
Posts: 660
Big or Little?

Hey Karen!

I haven't read enough about transplant prep specifics to be able to tell from the trial description: Is this a full myeloablative transplant or a reduced intensity transplant? I'm thinking the former, but wanted to check.

The trial itself sounds great! I look forward to making use of the knowledge you are creating down the road when it's time for me to go the SCT route.

I have Googled the distance and we're going to be 40 miles apart, give or take, when you are starting your treatment and I am ending mine. I have studied up on the question and can report that my super Campath-enhanced positive vibes have a range of at least 80 miles, so I will be beaming serious positivity in your direction.

My vegan daughter always wants tofu turkey for Thanksgiving, but you are brave to try boo-flu instead. I know it will go well for you.

Take care, and keep us posted!

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
Reply With Quote
  #33  
Old Sat Nov 20, 2010, 09:53 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
full myeloablative

Hi Greg -

I'm getting the heavy duty full myeloablative treatment because of my youthful age (smiles), my good health (aside from the cancer), and my particularly nasty MDS. Even with full, the docs are very concerned about the potential for relapse but have other plans in mind should that occur.

As for tofu turkey vs. boo-flu, I hate to say it but I'm not sure which is worse. My feeling is if you aren't going to eat meat, don't bother eating the pretend stuff. If meat's something you crave that much, then you probably need the real thing. Can you imagine the first Thanksgiving vegan style? Ugh. Please...I don't mean to offend any vegans out there...these are just my personal opinions not intended to influence or corrupt!

Thank you for the abundance of Campath-charged positive energy. I surely will be able to use all I can get!

Karen
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #34  
Old Sun Nov 21, 2010, 08:01 AM
Greg H Greg H is offline
Member
 
Join Date: Sep 2010
Location: North Carolina
Posts: 660
Quote:
Originally Posted by mausmish View Post
my particularly nasty MDS. Even with full, the docs are very concerned about the potential for relapse but have other plans in mind should that occur.
Karen,

My transplant doc is a Wake Forest, which does almost exclusively reduced-intensity transplants. But she trained at Stanford and they take a very aggressive approach. "The clone is stubborn," she told me once.

In fact, though they were looking at a reduced intensity version for me, she confided that, were she an MDS patient, she'd be inclined to go for the full deal, assuming appropriate age, health, etc.

I'd say you are in very good hands.

My observation on veganism is that some vegans do wind up eating a lot of processed foods -- often more than the typical ovo-lacto vegetarian, who can slack their "meat-hunger" and need for protein and fat with eggs and cheese. But that's my daughter's bag. My Thanksgiving dinner (a day or two late) will consist of a nice ten-pound roast chicken that I raised myself (and dispatched myself!).

Have fun packing!

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
Reply With Quote
  #35  
Old Sun Nov 21, 2010, 04:42 PM
cathybee1 cathybee1 is offline
Member
 
Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
Hey, Karen, just caught up a little with you on your great blog. It sounds like you're in good hands. (And I'm with you re tofu turkey btw. But to each their own...)

Happy Thanksgiving, it is such wonderful news you have a match and a schedule.
__________________
Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
Reply With Quote
  #36  
Old Tue Nov 30, 2010, 04:04 AM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
It is happening right now...

We started the bmt at 1:04 a.m., 1342 mL bag. I learned my donor is from Germany. I tolerated the chemo well other than some nausea past couple of days. All is proceeding, still scary and exciting.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #37  
Old Tue Nov 30, 2010, 05:16 AM
squirrellypoo squirrellypoo is offline
Member
 
Join Date: Nov 2008
Location: London, UK
Posts: 458
Very exciting, Karen!! (Though I hate to tell you, but now comes the boring part while you wait for engraftment...)

Do you know if your donor is a man or woman? My husband was just commenting the other day on how much warmer I am now than even before I got sick. We both think it's down to having "man blood" in me now.
__________________
36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
Reply With Quote
  #38  
Old Tue Nov 30, 2010, 05:48 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
SCT

Hi Karen,
Very good that you tolerated the chemo so well - now we hope the engraftment will occur without complications!
Kind regards
Birgitta-A
Reply With Quote
  #39  
Old Tue Nov 30, 2010, 08:46 AM
lindy lindy is offline
Member
 
Join Date: Nov 2010
Posts: 48
All the best Karen & good luck!
__________________
Lindy 56, low platelets, thrombocytopenia dx 2009, in watch & wait mode.
Reply With Quote
  #40  
Old Tue Nov 30, 2010, 08:26 PM
Laura Laura is offline
Member
 
Join Date: Aug 2006
Location: Minnesota
Posts: 433
Melissa-I am SO MUCH warmer now too!!!! I was told it's because the blood is thicker (due to higher HGB). Before I was freezing all the time and now I am always hot!

Laura
__________________
Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
Reply With Quote
  #41  
Old Wed Dec 1, 2010, 06:13 AM
squirrellypoo squirrellypoo is offline
Member
 
Join Date: Nov 2008
Location: London, UK
Posts: 458
Quote:
Originally Posted by Laura View Post
Melissa-I am SO MUCH warmer now too!!!! I was told it's because the blood is thicker (due to higher HGB). Before I was freezing all the time and now I am always hot!
Yay! You had a lady donor though, didn't you? There goes my theory!

When I had low Hb, that winter my fingers and toes would go numb and turn yellow (looking exactly like cadavers). The only thing to bring them back to life was several minutes of massage from my husband - warmth did nothing!
__________________
36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
Reply With Quote
  #42  
Old Wed Dec 1, 2010, 12:04 PM
Laura Laura is offline
Member
 
Join Date: Aug 2006
Location: Minnesota
Posts: 433
Yes, I had a female!
Laura
__________________
Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
Reply With Quote
  #43  
Old Thu Dec 2, 2010, 12:20 AM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
I don't know if my donor is male or female but I hope I don't get any hotter than I am already, lol. I'm generally roasting.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #44  
Old Thu Jan 27, 2011, 03:31 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
Going home!

I'm at day+58 and going home tomorrow! Would've been today except our power is out at home after the snow storm last night. More details on the blog...link in my sig.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #45  
Old Thu Jan 27, 2011, 03:47 PM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Going home after SCT

Hi Karen,
Wonderful that you have managed so well with (almost) everything during the SCT !!!
Kind regards
Birgitta-A
Reply With Quote
  #46  
Old Fri Jan 28, 2011, 07:49 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Congrats!!!! Getting home makes such a big difference in how you feel and helps in the recovery also.

Stay warm.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Reply With Quote
  #47  
Old Fri Jan 28, 2011, 08:09 AM
squirrellypoo squirrellypoo is offline
Member
 
Join Date: Nov 2008
Location: London, UK
Posts: 458
well done, Karen! That's great news.
__________________
36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
Reply With Quote
  #48  
Old Fri Jan 28, 2011, 09:42 AM
Susan L Susan L is offline
Member
 
Join Date: Jun 2010
Location: Ga
Posts: 245
Karen

Fantastic - very happy for you - way to go!!
__________________
Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
Reply With Quote
  #49  
Old Thu Feb 3, 2011, 12:43 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
Bmb results

Thanks everyone! I got my results from last week's bone marrow biopsy, and there is no sign of MDS. Cytogenetics are normal and my cells are still 100% donor.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #50  
Old Thu Feb 3, 2011, 08:55 PM
Mary4Mike Mary4Mike is offline
Member
 
Join Date: Oct 2010
Location: Michigan
Posts: 68
Praise the Lord!
__________________
Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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
9/10 Donor Match Found! traceyn11 Transplants 4 Fri Jun 26, 2015 12:19 PM
Bone Marrow Found 9/10 What To Do??? JIMMYG MDS 2 Sat Jun 1, 2013 01:34 AM
Found a 9 point match Anne Yeomans MDS 1 Thu May 17, 2012 03:23 PM
transplant match kellym Transplants 5 Wed Jul 27, 2011 04:18 PM


All times are GMT -4. The time now is 05:46 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, 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 © 2006-2020 Marrowforums.org