Home Forums |
|
Transplants Bone marrow and stem cell transplantation |
|
Thread Tools | Search this Thread |
#26
|
|||
|
|||
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 - |
#27
|
|||
|
|||
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 - |
#28
|
|||
|
|||
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... |
#29
|
|||
|
|||
Quote:
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 |
#30
|
|||
|
|||
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 |
#31
|
|||
|
|||
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 |
#32
|
|||
|
|||
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 |
#33
|
|||
|
|||
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 |
#34
|
|||
|
|||
Quote:
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 |
#35
|
|||
|
|||
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. |
#36
|
|||
|
|||
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 |
#37
|
|||
|
|||
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!) |
#38
|
|||
|
|||
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 |
#39
|
|||
|
|||
All the best Karen & good luck!
__________________
Lindy 56, low platelets, thrombocytopenia dx 2009, in watch & wait mode. |
#40
|
|||
|
|||
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... |
#41
|
|||
|
|||
Quote:
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!) |
#42
|
|||
|
|||
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... |
#43
|
|||
|
|||
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 |
#44
|
|||
|
|||
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 |
#45
|
|||
|
|||
Going home after SCT
Hi Karen,
Wonderful that you have managed so well with (almost) everything during the SCT !!! Kind regards Birgitta-A |
#46
|
|||
|
|||
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. |
#47
|
|||
|
|||
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!) |
#48
|
|||
|
|||
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 - |
#49
|
|||
|
|||
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 |
#50
|
|||
|
|||
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 |
Thread Tools | Search this Thread |
|
|
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 |