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  #26  
Old Sat May 23, 2009, 09:38 AM
Vera W Vera W is offline
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Location: Colfax Ca
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Heather (FLOWER LADY) Transplant UPDATE

I spoke with Heather last night. I had called her last week and she sounded really groggy and never called back. I called again last night and she was on day+32 and said she was only home (apartment in Houston) 3 days and had to go back in to the hospital with a fungal pneumonia. She is doing well now and is slowly regaining her strength. She will be updating her blog soon!
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #27  
Old Sun May 24, 2009, 04:48 PM
Laura Laura is offline
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It seems like you and I will be having a transplant at the same time. They have asked my donor to donate June 10, 11, 12. I go next week for all my pre-transplant tests and the following week get a Hickman and chemo/radiation prior to transplant. I read your other post of things to bring and that was nice to read too. I wish you the best of luck.

I am finally having a 10/10 unrelated BMT for AA (after having it for 14 years).

Laura
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  #28  
Old Mon May 25, 2009, 12:37 PM
Vera W Vera W is offline
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transplant

Thanks Laura, That must have been some really exciting news for you! Wow..What hospital are you going to..is it the mayo clinic? I know that San Francisco will be sending some of my blood results there for the correct formula to return to my body. It's really pretty amazing. I am hoping I will hear this week if my 10-10 is a go.
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #29  
Old Mon May 25, 2009, 05:53 PM
Laura Laura is offline
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Yes, it will be at Mayo Clinic in Rochester, MN. You should start a caringbridge site or something to keep us all updated on your transplant.
Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #30  
Old Tue May 26, 2009, 12:17 AM
Vera W Vera W is offline
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Transplant blog

I have thought about it but I don't know how much I will be able to write, my husband said he would keep it up for me but he really has his hands full. I will see how it goes. Send me your e-mail on my private messages and i will keep you posted! Vera
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #31  
Old Wed May 27, 2009, 11:47 PM
Vera W Vera W is offline
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New Donor

Well the 10/10 match is a go, I believe this is a 39 yo woman, she tested positive for the CMV virus, so I am pretty sure it is a go! We submitted 3 dates the first is June 22. Tomorrow is my third BMB and my 3rd vidaza shot (8th cycle). I will let you know when my date is firm.
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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Last edited by Vera W : Thu May 28, 2009 at 12:23 AM.
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  #32  
Old Thu May 28, 2009, 12:10 AM
Ruth Cuadra Ruth Cuadra is offline
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This is great news, Vera. A 10/10 match means you're much closer to that magic cure!

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #33  
Old Thu May 28, 2009, 07:53 PM
Laura Laura is offline
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great news

I am glad to hear you also have a 10/10 match! My donor has asked to push back the date a week so I think as of now she will donate on the 17th, but I am not 100 percent sure yet.

What is your preconditioning?

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #34  
Old Fri May 29, 2009, 10:36 AM
Vera W Vera W is offline
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Pre-Conditioning

Hi Laura, I resent the e-mail and it seems to have gone through, hyphens do seem to dissapear with that line under the e-mail address.I am having my kitty fixed today and I had to remove her food and water so she started biting me around 5 AM so I got up. She doesn't break the skin she is just irritating. I went to sleep early from my bmb. I told my doctor that I had a really high tolerance to Novocaine so he gave me the whole dose and boy what a difference that made.This was my least painful experience, but I must admit I took 2 xanax and 2 strong vicodins this time. I have to read this pre-conditioning off of my info. After they put in my catheter I will have Busulfan 4 times a day for 4 days, also fludarabine daily, anti nausea, allpurinol (for kidney damage) and dilantin to prevent seizures. No radiation, are you sure that you will have radiation or are you assuming? I thought that also but it is usually given for types of cancers that have tumor or bone involvement. Next you start receiving the anti rejection drugs, tacrolimus, and methotrexate and any additional drugs needed for any signs of GVH. I have been trying to get a mile in of some type of exercise to keep my cardio conditioning up. I was getting lax due to my tiredness but I have been making it happen and I do have more energy!! I am still waiting for my donor dates..You are young and you will do fine! Vera
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #35  
Old Fri May 29, 2009, 02:23 PM
Laura Laura is offline
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Hi Vera,

Yes, I am sure I will get radiation. One day at a low dose of 200. I will also get Campath and Cytoxan along with Methotrexate and Prograf.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #36  
Old Fri Jun 5, 2009, 09:52 AM
Vera W Vera W is offline
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Transplant Update

I got up early yesterday to write an update but I was so upset about Nellie's passing that I wanted to give the day to her. If everything goes as planned I will be admitted on June 23rd to UCSF Medical center and I will receive my new cells on July 1ST.They told me that they were very happy about my new 10/10 match.
I called my former transplant coordinator to ask about signing off some mileage and she said that they got a letter from Anthem Blue Cross asking them to get all of their paper work together because they were going to take a serious look at giving them COE Status. Amazing isn't it? Maybe I just wasn't meant to have that first donor?
So I have three more weeks to wait and I think that will go fast!
My BMB from last week was less than 1% blasts. Remember they were 11-12% before Vidaza? This is my current DX.
HYPER CELLULAR MARROW WITH TRILINEAGE HEMATOIESIS;
INCREASED NUMBERS OF MEGAKARYOCYTES, WITH MODERATE ATYPIA
ERYTHROID IRON IS PRESENT;
PATCHY MILD RETICULIN FIBROSIS.
"immunohistochemical stain for CD34, continues to demonstrate changes compatible with an ongoing myelodysplastic process;however.blasts are not significantly increased." The bad guys are still being suppressed and who knows how long that could last?
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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