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#1
Tue Jun 9, 2009, 01:47 PM
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Vera's Transplant
Now that I am getting into the real deal I am starting a new thread to write about my transplant.Two weeks from today I will be admitted and I will receive my new cells July first.I don't know if I will get a blog together, it would have to fall to my husband and I think he will have his hands full. If you E-mail me I will give you my husbands e-mail address so you can talk to him directly if you are interested. I will write as much as my situation will allow. I did hear from Anthem Blue Cross yesterday telling me that I have been approved. I have never been in the hospital and that alone makes me nervous!
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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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#2
Tue Jun 9, 2009, 03:05 PM
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Good luck, Vera. You know we're all rooting for your success.
Here's a tip for forum members who want to keep up with Vera's news: If you'd like to be notified by email each time a post is made to this thread, click here to "subscribe" to the thread. (It's also a choice in the Thread Tools menu.) In the drop-down box, pick Instant notification by email. There's more information about thread subscriptions in the FAQ.
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#3
Tue Jun 9, 2009, 09:50 PM
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Good luck to you!!! All my best of luck to you and best wishes!! We will have to keep each other updated on our progresses!
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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#4
Tue Jun 16, 2009, 11:29 AM
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Asking the right Questions
I wanted to pass this on to you all because I think it is important! You might remember my dismay when I found out there was no lodging/food benefit available for my San Francisco travel? However I was told that it was available in Sacramento if you have to travel over 100 miles. All the financial gal said at UCSF is that there is no travel benefit for under 250 miles one way! Last week the Anthem Blue Cross people called me to tell me that my transplant had been approved and they assigned me a case manager and we have been playing phone tag. I had this little voice gnawing at me to ask her about this conflicting information..she said to call again and see what the specifics of my plan were.. and yes there is no travel MILEAGE associated costs for below 250 miles but if you continue to read the contract we have the $100 a day hotel,$25 a day food for 21 days benefit and I had almost abandoned the possibility of this type of coverage. The financial gal didn't do her homework very well. So always ASK! This is $3000! It will allow my husband to have a place down the street from me where he can rest and shower and check his business e-mails. This is Huge to us!
Another interesting thing is I was looking at my itemized statement and it said "blood sample-ZKRD Germany". I googled that and it is a large donor Center in Germany so I guess my 10/10 match is a German gal. I have to honestly say that if my first transplant date had gone off as planed I would not have found this Perfect Match and that blows my mind!. I am still waiting my written confirmation on the 23rd admittance date. I will probably get that tomorrow so I will keep you posted!
__________________
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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#6
Wed Jun 17, 2009, 07:07 AM
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What a relief it'll be to have him nearby and not have to worry about money!
And it's funny your donor is in Germany, as I only recently found out mine is in America, which surprised me as I didn't even realise Anthony Nolan extended the search outside the UK...
__________________
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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#7
Wed Jun 17, 2009, 08:12 PM
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Solid Date
Everything is set. Day -8 will be Tuesday June 23rd. I finally got my Chromosome analysis back, it took 3 weeks for some strange reason, but thankfully I am still normal! I will be getting my catheter about 1:00 on Tuesday.
The other news is Rob has an infection and back in City of Hope, his counts are real low and he will have another battle with GVH. He was doing so well so PLEASE continue your prayers for him I think we all forget what a long process this can be. I spoke with Heather(FLOWER LADY) Who was at MD ANDERSON, and she is writing me again and she has been having highs and lows but she is coming along. Our other member Laura is in the Mayo Clinic, she had 4 days of Chemo and radiation yesterday and has broken out in an itchy red rash. She will be getting her new cells on Thursday! Then there will be me and squirrellypoo right after me so keep those prayers coming!!
__________________
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 ________________________________________________ Last edited by Vera W : Thu Jun 18, 2009 at 12:50 AM.
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#8
Thu Jun 18, 2009, 06:47 AM
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Thanks for the community update, Vera!
Quote:
__________________
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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#9
Sat Jun 20, 2009, 12:16 PM
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Getting Ready To Go
I will remember David and hope we can all join in Spirit and tap into each others strength!
We will be leaving today for the house in Petaluma it is a 2 1/2 hour drive! I have been working on packing household items and clothes for different legs of my journey, books, books on tape, family pictures..It is a lot of coordinating. My brother and family are coming to the house for a BBQ tomorrow and we decided to spend Monday night in San Francisco so we can avoid the commute traffic.We are staying about a block from Ocean beach so I can get another Ocean fix. My husband will be staying here while he is in town. I finally got my chromosome report and they are still normal thank God. I guess the German Donor spot services a lot of Europe so my donor may not be German. Maybe She will be a Swede like me! I am so curious. Anyway I have to be at the Clinic at 9 am Tuesday . More blood tests, an appointment to make sure I'm not sick! Hospital Admission paperwork. Catheter placement around 1:00 PM eventually I will make it to a room so I will give you that info when I get it. Every one take care!!
__________________
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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#10
Sun Jun 21, 2009, 06:08 AM
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Hoppas allt går bra!
Hej Vera,
Som jag skrivit många gånger tidigare beundrar jag de modiga patienterna, som vågar satsa på SCT. Själv vågar jag inte ens pröva Vidaza, eftersom jag är så rädd att må sämre. Dessutom roligt med en forskningsintresserad medlem som Du! MDS Foundation hade ett Patient Forum i Stockholm i april 2009. Jag satt brevid en kvinna, som genomgått en 100-procentigt lyckad SCT vid 63 års ålder 2007 helt utan allvarliga komplikationer eller kronisk GVHD. Hoppas allt går lika bra med Din SCT! Varma hälsningar Birgitta 70 år, MDS Interm-1 diagnos sedan maj 2006, transfusionsberoende, Desferal och Ferriprox (inte godkänt i USA) samt Neupogen-injektioner 2 ggr/vecka. Fortfarande helt symtomfri.
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#11
Fri Jun 26, 2009, 02:25 AM
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Day-6
I was on my husbands computer this weekend and I was having problems with my pass word. I thought I wrote on day -8 but I can't find that. At any rate I am here at UCSF. I started chemo yesterday and I am on my 9TH bag. mostly busulfan, but fludarabine too! I wish I could tell you that the Hickman was a breeze but it really hurt, and was sore for a few days after. The nurses check your vital signs about every 3-4 hours, At 5:30 Am you have blood draws and have to weigh on the scale. I had my head shaved last night and i have been tooling around the halls with my pole that I have named Bertha. Things are going well.
__________________
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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#12
Fri Jun 26, 2009, 10:42 AM
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Thanks for checking in, Vera. I'm scheduled to have fludarabin and busulfan, too, along with a new one, campath. Do you know if you're having a mini-transplant (RIC) or a full blown one?
I'm sorry the Hickman line was rough for you. I've had mine in for a month now, and as far as I can see, having it an extra month is the only good thing to come out of my delay! Even despite having an infection almost immediately after insertion right up until yesterday, I'd still take it over being jabbed 10-15 times a week, and to me, the insertion procedure itself was TONS EASIER than a BMB... I hope you and Bertha have an easy weekend, and not too much partying on Saturday nighht. 
__________________
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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#13
Fri Jun 26, 2009, 12:15 PM
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Day-5
I am having a full transplant. I was sup prized that the hickman hurt.I was expecting it not to! I can tell my counts are dropping, I am really tired and cold all the time. Bertha is pretty slow and she follows me everywhere!! Not much of a party person!
__________________
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 ________________________________________________ Last edited by Vera W : Fri Jun 26, 2009 at 12:56 PM.
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#14
Fri Jun 26, 2009, 10:31 PM
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Hi Vera
Sherry and I are thinking about you and want to send positive thoughts your way. Just cuddle up with those blankets and remember we are praying you have the strength to get through this difficult time. Tell Dennis we said hi and we are thinking of him also. We hope you can get some rest tonight.
Love you, Wayne & Sherry
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#15
Sat Jun 27, 2009, 12:51 PM
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Day-4
Thanks Wayne.I am waiting to hear if my counts dropped yet.I lost track on my bags of chemo.16 I think.I am losing my appetite and couldn,t hold my food down. Then I woke up in the early morning and found that I had ripped open my central line and blood was everywhere. i AM FEELING PRETTY SQUISHY!!
__________________
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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#16
Wed Jul 1, 2009, 02:50 AM
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Day 0 july 1st
My new cells will be at San Francisco tomorrow at noon. I will have my infusion between 6-8 PM. Nausea is still my biggest problem!
__________________
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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#17
Wed Jul 1, 2009, 05:59 AM
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Godspeed, little cells!! I'll be thinking of you tonight. Make sure you take a photo of the big event, the moment your new life entered you!
__________________
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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#18
Thu Jul 2, 2009, 02:06 PM
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I hope today is going well!
Vera, I kept watching the clock yesterday and saying prayers for you throughout the day as you waited and as the time approached for the transplant. I hope that today is not too tough for you. I am keeping you in my prayers and checking often for an update.
PH Steele
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#19
Thu Jul 2, 2009, 05:52 PM
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Vera, July 1st is a great day for a transplant. The sun will be around to keep you warm as you recover and the days will be bright to help keep your spirits up. Thank you for taking the time to share the details of what's happening with us here at Marrowforums. You're helping lots of people now and even more who will come to the site in the future looking for encouragement.
Good luck! Go cells! Regards, Ruth
__________________
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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#20
Sat Jul 4, 2009, 12:14 AM
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Hope you are doing okay!
Vera, thoughts and prayers are with you. I hope that you are not feeling too low today.
The news about Rob has been hard to accept. I know that he would want you to stay strong and encouraged. I am anxious to learn how it is going for you.
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#21
Sat Jul 4, 2009, 06:09 AM
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Report
All in All I am doing well, Sore throat and phlegm, Waiting for the graft. I still have Had no transfusions. And still not neutopenic! Platelets are 300, go figure,
Dennis and I both cried about ROB, I still can't believe it, and yes I feel his BEAUTIFUL spirit!
__________________
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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#22
Sat Jul 4, 2009, 04:57 PM
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Hi, Vera.
Good to hear you are doing so well. Seeing that your post came at 2am reminded me of all the nights I spent in the hospital wide awake and writing to friends and family in the middle of the night. It seemed like I was thinking most clearly in the wee hours, but I wonder now if what I wrote was actually jibberish. You seem very clear-headed but I hope you're getting your sleep too! I know you and Rob were closely connected and supporting each other throughout your transplant journeys. Please accept my condolences on the loss of your friend. Regards, Ruth
__________________
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98 Last edited by Ruth Cuadra : Mon Jul 6, 2009 at 11:06 PM.
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#23
Mon Jul 6, 2009, 07:13 AM
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3 A.M. Day +5
Yes Ruth some things never change! I am still in shock about Rob even my husband cried at his passing, what a dear man he was, He once said to me "Vera we are the lucky one's, we have found a way out of this dreaded disease".
I had a fever of 100.8 last night, My mouth,throat and tongue are horrible, I have the blasted cold sores on my lip. I have been on interveinous anti-biotics and it broke me out in a rash. I don't think I have a fever now but I am not going to be eating any time in the near future. I slept like crazy last night, that's why I am awake now! Thanks for thinking of me!!
__________________
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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#24
Tue Jul 7, 2009, 08:18 AM
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Hi Vera,
I admire your spirit! Hope they will find antibiotics that not give rash and that the sores in your mouth, throat and tongue will disappear! Kind regards Birgitta-A
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