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  #26  
Old Wed Jul 8, 2009, 09:18 PM
PH Steele PH Steele is offline
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Eager to hear from you
Vera, I pray that you are coping well. I am anxious to hear from you as to how things are going. Love and prayers are with you each day.
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  #27  
Old Thu Jul 9, 2009, 12:47 AM
Vera W Vera W is offline
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Day +7
My worst problem is this persistent painful mucositis.I woke up with a very dry throat and when I gargled I spat up blood so I had to wait up and see the floor doctor, They were considering ordering platelets which are down to 40 now! Every thing turned out fine.My catheter site is still a bit red but I am on antibiotics for that! I started neuprogen shots today, we need to wake up the donor , OLGA!!! I am very tired!! Good night All!
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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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  #28  
Old Thu Jul 9, 2009, 02:47 AM
Ruth Cuadra Ruth Cuadra is offline
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Vera,

They should be able to give you pain meds to suppress the discomfort of the mucositis. I was on dilaudid (substitute for morphine because I turned out to be allergic) for about 3 weeks during the worst of it. Don't know how I would have survived otherwise! You need your energy for healing so you shouldn't be expending a lot of effort coping with pain.

Hope you have a comfortable night!

Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #29  
Old Thu Jul 9, 2009, 10:07 PM
Laura Laura is offline
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I agree with Ruth ask for some Morphine or Dilaudid iv. There is no reason for you to be in pain. You could ask for a PCA machine too. Best wishes to you!
I am on day 21 and finally have a white count of 0.7 but no ANC yet.
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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 Sat Jul 11, 2009, 12:12 AM
Vera W Vera W is offline
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Day +9 Friday
Hard to believe that I have been here 18 days tomorrow. My counts WBC ,03, No anc, HCT26.4, Platelets 20. I am on my second red blood transfusion as we speak I had platelets done yesterday and might need them tomorrow. I have a non itchy red rash on my legs that no one knows what it is. The worse part of my day was my mucositis. I had trouble breathing and i got a shot of dexamethasone, it really broke up the mucous. Ruth and Laura they offered me a diladid pump but it made me sick and did nothing for the pain.What works the best for me is norco (low Tylenol vicadin) and oxicodon, I can't swallow that too well but the pain relief is amazing. I did settle for a fentsnyl pump.It is another morphine derivative! The docs are pleased with my progress. Thank you for your encouragement! I have had three neuprogen shots.
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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 : Sat Jul 11, 2009 at 02:23 AM.
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  #31  
Old Sat Jul 11, 2009, 11:24 PM
Vera W Vera W is offline
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SAT, dAY + 11
The doctor came into my room this morning and said, Vera guess what? I looked at her and said I am grafting? and she said yes and it is the fastest graft that she had ever recorded, 3 days after neuprogen ,from .03 to1.1.anc.085,33 hemocrit,10 platelets I had another transfusion. This is all very exciting,
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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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  #32  
Old Sun Jul 12, 2009, 08:23 AM
Neil Cuadra Neil Cuadra is offline
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Going from no neutrophils to your first new neutrophils is great news, Vera. There was nowhere to go but up, and that's exactly where you are headed!
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  #33  
Old Sun Jul 12, 2009, 09:07 AM
squirrellypoo squirrellypoo is offline
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Congrats, Vera! That's brilliant news, which I'm sure will boost your spirits somewhat!
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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!)
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  #34  
Old Sun Jul 12, 2009, 03:31 PM
launch launch is offline
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Awesome !!!
Wonderful News Vera! We've been praying for your successful transplant and restored health. We praise God for your progress! AWESOME!!!!

Cindy
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  #35  
Old Mon Jul 13, 2009, 01:37 AM
michelle_lapuz michelle_lapuz is offline
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hurray stem cells, hurray Vera!! I'm glad to hear your neutrophils are on the up, that is fantastic news. Let me know if you need anything from the outside world - I'm free on Saturday to stop by if you would like a visitor!!

Michelle
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  #36  
Old Mon Jul 13, 2009, 06:51 AM
Birgitta-A Birgitta-A is offline
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Thumbs up Vera
You are a true fighter! How wonderful with the results ! Congratulations!
Kind regards
Birgitta-A
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  #37  
Old Mon Jul 13, 2009, 12:41 PM
wslandry wslandry is offline
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Congrats!!!
Dear Vera

Sherry and I are so excited that you are responding to treatment. Thank God and we are praying for your post treatment response everyday. Love you,

Wayne & Sherry
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  #38  
Old Mon Jul 13, 2009, 07:43 PM
tmc3tom tmc3tom is offline
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Vera....you and your family will be in my thoughts and prayers....tom
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  #39  
Old Tue Jul 21, 2009, 09:11 PM
Vera W Vera W is offline
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Tuesday July 21st DAY +20
Hello friends, Well I am being released tomorrow for the next leg of this journey.I thought I wrote an E-mail to you Ruth and Laura, about the pain killers. I didn't mean for it to sound like they left me hanging the first thing they offered me was the morphine drip it makes me feel weird and didn't relieve the pain. I have better luck with norco ( Vicadin with Tylenol ) Everything was fine and my counts were climbing nicely then I found myself in ICU with a 101 degree temperature and I guess I wasn't getting enough oxygen. They were worried about pneumonia so I had a CT and heart scan and everything was fine. I got a couple of latix shots and things leveled out.They are having a hard time regulating my anti-suppression drug, trycolymus, First I have way too high blood pressures, and now they are way low.They are working on the right combo. BUT I am headed for Petaluma tomorrow.
Melissa, i am happy that you are home and it took me 3 weeks to lose my hair too!
Special kudos to Ruth and Neil for a job well done!! Rob is smiling down at us from above!!
__________________
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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  #40  
Old Tue Jul 21, 2009, 09:53 PM
Ruth Cuadra Ruth Cuadra is offline
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What a lucky lady you are, Vera, to be out of the hospital and doing well in such a short time. Hope the transition to Petaluma goes smoothly! And, thanks for your kind words.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #41  
Old Wed Jul 22, 2009, 12:52 AM
michelle_lapuz michelle_lapuz is offline
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OMG!! You are already out? That is WONDERFUL news - hurray!! Bummed that I didn't get to meet you - you were in and out so fast!!

Michelle
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  #42  
Old Wed Jul 22, 2009, 05:41 AM
Birgitta-A Birgitta-A is offline
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Thumbs up Out of hospital
Hi Vera,
You know it is so good for us to read about your SCT ! You give hope to many members and their relatives.
Kind regards
Birgitta-A
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  #43  
Old Wed Jul 22, 2009, 08:50 AM
squirrellypoo squirrellypoo is offline
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That's great news, Vera!! It'll be such a relief to stay at your friend's now instead of the hospital...

I'm finding I still need to take things really slowly and lay down a lot. The biggest thing for me was realising how tired I get just sitting up at the table. And then it dawned on me that I'd been always leaning against something for the past three weeks!
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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!)
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  #44  
Old Sat Jul 25, 2009, 01:11 PM
PH Steele PH Steele is offline
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Glad to hear the news
Vera, how wonderful that you are home. Keep us updated about your progress. I received a letter from Rob's sister.

She shared some thoughts and concerns regarding Rob's setback. She truly feels that he began to feel so well that he took some risks that he should not have taken.

She strongly stressed that the restrictions put on patients are not guidelines, but ironclad directives to be followed to the letter. She believes, too, that Rob failed to report his symptoms soon enough due to the dread of going back to the hospital.

I share these things with you and other readers of the forum not to be negative, but to stress the importance of being cautious and take no risks with your recovery.

Rob touched all of our hearts with his courage, optimism, and humor. His sister and his family are still in shock and deep grief over this devastating turn of events. I feel that her letter was incredibly thoughtful in sharing Rob's experiences in order to benefit others.

My very best to you, Vera. I will be checking the forums for news.
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  #45  
Old Tue Jul 28, 2009, 10:12 PM
Vera W Vera W is offline
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laura
I really need to write laura( robb's sis)but my own condition is holding me up!
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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 : Wed Jul 29, 2009 at 03:09 PM.
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  #46  
Old Tue Jul 28, 2009, 10:54 PM
launch launch is offline
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Vera's Email Extract from Today at 8:54pm
I know we all were concerned about Vera. I'm in a group email on my home email address and just received this update from vera... I've extracted the message... I wanted to share....

Extracted message from Group Email From Vera: DAY+28 at 8:54pm (ET):

.....Guess I had better write an update before a riot begins Last week was hard ,I was suppose to get out Monday, Tuesday and Wednesday. They have been trying to regulate my anti rejection drug and it it all over the place..I was also dehydrated and myB 0 was 57/46 so i had a bag of saline, I don't feel bad just really tired but I am only 28 days old! My wbc is 3.9 reds 2.34 hemocrie31% and plateletts 328,No GVH sightings. it is still early...
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  #47  
Old Wed Jul 29, 2009, 02:57 PM
Vera W Vera W is offline
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Hi
I guess you figured out that BO IS BP<<HA HA
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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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  #48  
Old Thu Jul 30, 2009, 09:27 AM
flowerlady flowerlady is offline
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Great to hear you are well as can be expected for having such a new immune system. The tacrolimus/prograf played with my blood pressure too! I was just taken off the two meds for it. They really have to "fine tune" these new machines of ours. But it all comes together before you know it. I am day 108 and still find myself great one day and rather weak the next. Just taking baby steps to recovery. Sending hugs, patience and strength...
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Flowerlady, 49, Diagnosed MDS 5q- 06/07, Revlimid 07/07 - 11/08. Vidaza 12/08 - 3/09. Allogeneic Stem Cell Transplant 4/14/09.
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  #49  
Old Thu Jul 30, 2009, 10:33 PM
PH Steele PH Steele is offline
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So happy to see Flower Lady is feeling up to writing
Flower Lady, I am so happy to see that you are feeling strong enough and well enough to be on the forums. I often checked for reports and worried about you.

My young friend, age 20, is 60 days out from his transplant. He is doing pretty well and desperately wants to go back to college soon. I really doubt that can happen. He probably ought to take off the whole semester since he lives in the dorm.

Have you been able to return to your home yet or are you still in Houston?
My young friend lives in Houston.
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  #50  
Old Thu Jul 30, 2009, 10:36 PM
PH Steele PH Steele is offline
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I meant
I meant my young friend is 30 days out--had his first bone marrow biopsy with a good report all donor marrow and normal chromosomes.
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