Transplant Reflections

[Vera W]

I am about three weeks out. Tomorrow I will be cutting my now shoulder length hair very short in anticipation of my chemo hair loss. We will be checking out the facility called the "sharing place" that is a 15 bedroom home for recovering cancer patients. It sounds like it will work out fine for us and it is really close to the hospital. There are so many programs available at Sutter Sacramento. This home is only $20 a night and my insurance will cover $100 a night for 21 days. It has a shared kitchen and we love people so I think it will be a good setting. As I read the stories on Marrow forms I have to say that I am humbled and thankful that this procedure is available to me and my heart goes out to everyone struggling with this and you are all constantly in my prayers! I am feeling well and have been working out on a regular basis again. My BMB came back 1-2% of my formally 11-12% blasts but the report says"Given the continued increase(albeit mild) in CD34-positive blasts by immuno histochemistry, these changes are favored to represent an ongoing manifestation of the previously-diagnosed myelodysplastic syndrome over reactive/inflammatory changes or changes related to therapy''. So the Vidaza is doing it's job and suppressing this..but it is still there! By the way The Flower Lady is in Texas preparing for her transplant at MD Anderson. She is going in 3 days before me! I will keep you posted.

[Neil Cuadra]

You've got a great attitude, Vera.

A suggestion: It might be a good time to shop for some hats or headscarves. Even in California, having short hair can sometimes leave you chilly.

[Vera W]

Thanks Neil I actually ordered two on line and they came yesterday

[Maddie C]

Hi Vera,

Thanks for keeping us all posted, it is always good to hear from members who have been thru SCT. For those of us who may be faced with the decision to do SCT it always seems scary and to hear a positive voice is so very helpful. Thank you for sharing and hope and pray all goes well. Hugs Maddie

[Vera W]

Well today was stressful when the blue cross representative called to say that I couldn't use Sutter hospital but I could go to Stanford Med Center or City of Hope. It is so mind boggling they have been paying for all of my HLA testing and pre tests my husband told the gal "Don't you guys pay attention? What did you think she was getting plastic surgery?" So we are appealing, I have worked really hard at getting everything set up locally and I am very happy with my doctors.

[Beth I]

Good luck with the insurance situation, Vera. I would do the same, it's tough enough to go through this without the ability to be where you want to be and should be - close to your support network.

Best wishes

Beth

[Vera W]

I filed for an expedited appeal today. I have a letter from my doctor, my lawyer (who is also a good friend)and myself. I thought things were going along too smoothly! Wish me luck.

[Vera W]

Yes it's true they said that my particular insurance MANDATES that I go to a CME.Too bad they didn't tell me that 5 months ago! I am waiting for a call back from my case worker but my insurance gal said that I have to have all my tests re done. What a waste! I am waiting to have two questions answered does that include my HLA testing? What will happen with my donor..my HLA identical Donor??? Should I call my National Bone Marrow advocate? If any one knows the answer feel free to advise me. Guess I will back to Vidaza Monday..Sigh..Short haired Vera. P.S. I am so happy that my health is better, could you imagine dealing with this and being really sick?:eek:

[Vera W]

Looks like I am headed for San Francisco. My best friend lives there and has offered her spare room whenever needed. I am waiting for the records to be transferred. Still don't know about the doner, the Blue cross adjuster didn't have a clue but she did say that my transplant has been approved!

[Ruth Cuadra]

Hi, Vera.

It must be very hard to be uprooted like this when you've been focused on being in Sacramento. But, you will be in very good hands at UCSF. Keep your eye on the goal to get through the transplant and be cured!

Regards,
Ruth

[Vera W]

Thank you Ruth,I know you are right and I can't help feeling that this is happening for a reason. My friend in San Francisco is so excited that I am coming there. She asked her husband "Hey honey do you mind if Dennis and Vera come to stay for 3-6 months?" ABSOLUTELY he said and bring mom too! I am blessed with such good friends and also so thankful for MARROW FORUMS and the wonderful relationships I have formed. I am having breakfast with Hopeful today, she lives close by..So thank you so much! I am waiting for my appointment at UCSF they can't use my doner until I see them.

[Vera W]

Hello everyone, I haven't had a whole lot to say lately, I am just waiting to get to San Francisco! All I know is that I have been assigned Dr Lloyd Damon at UCSF. My doctor was at first upset that they couldn't see me till May 4TH. He has left several phone calls to the new doctor and no one calls back. I called the transplant coordinator last Thursday and she said , Oh we were going to call you and that Dr Damon is on vacation on May 4th so now I am scheduled for May 18TH. I again asked that the Doctor return my Doctors calls and still nothing! I am just thankful that I am not really sick right now. I will let you know as I get more info.
By the way Heather (FLOWER LADY) is receiving her new cells today. her brother is her doner..Please keep her in your Prayers

[Birgitta-A]

Hi Vera,
Will you please tell Heather - when you have contact with her - that I am going to light a candle for her today in the hospital church.
Kind regards
Birgitta-A

[Vera W]

Will do Brigitta, check outhttp://dancinginhouston.blogspot.com/Heather's blog on her transplant. Take Care, Vera

[Birgitta-A]

Hi Vera,
Thank you very much for the adress to Heather's blog, that I will continue to follow :).
Kind regards
Birgitta-A

[Vera W]

Good news! My doctor finally connected with Dr Damon and he read my file and moved my appointment up to next week! Finally we are moving ahead!

[Birgitta-A]

Hi Vera,
Good luck! You will be the third member getting a SCT this spring and we hope everything will function as well as possible!
Kind regards
Birgitta-A

[Vera W]

Hopefully the transplant will happen before Spring becomes summer! It is looking better for that. I want to get the hard part behind me so I can be whole again!:)

[Vera W]

I had my first appointment at UCSF yesterday and all in all I liked it. My new doctor seems to have a good sense of humor and he faxed the national donor people my case number (which I finally got last week!) before my appointment was over! When you go in for a transplant you get a nurse who is your transplant coordinator and they help you with whatever you might need and my new one is a super gal! I had to do my HLA testing again and I think I re did my blood work to see what antibodies I have. I have to have another chest Xray and EKG, but most of all I have to wait to see if my donor comes back. We were offered a friend's home in Petaluma, they will be gone till August. It's about 35 miles from San Francisco and I was afraid that wouldn't be ok with the doctor but he said that was do able. That is a big load off my mind because things are really expensive in San Francisco and a lot of places want a lease. Also my brother lives in Petaluma and he can give my husband a break so he can go home occasionally to pay bills and check on the animals. You can see the bay from the BMT unit, 11TH floor. San Francisco is a beautiful City and I love the ocean but I gave up City life a long time ago and it's hard to give up my mountains!Still don't have a new date but I will keep you informed!

[PH Steele]

Vera, I am glad to hear that things are moving along. I know you are anxious to get the ball rolling. I will keep checking and keep praying.

[michelle_lapuz]

Vera - you are in wonderful hands with Dr. Damon - he was my physician during ATG treatment. He's amazing and VERY smart and experienced, I am confident you will do well at UCSF ;) I live here in SF so during your stay keep me posted - I would love to drop by with magazines and well wishes.

[Vera W]

Thank you Michelle for the encouragement. It would be wonderful to have you visit me! I am still doing the waiting game. Tomorrow I start round 7 of Vidaza, (stomach get ready!!!:eek:)

[Vera W]

I finished round 7 of Vidaza. My counts are 13.8 WBC.. 77% neutrophils. !4.8 Hemo 497 Plateletts. It boggles my mind! Apparently there were more hits on matches for me and they are looking at a 10 by 10 match but the donor has not made themselves available. However my original match is still available and will probably be my donor. I have to go meet with the doctor in 2 weeks and have another psyche evaluation and we should be good to go! I will keep you all posted!

[Vera W]

Hello all. We spent 7 hours at UCSF on Tuesday. I had my family meeting with the Doc and nurse coordinator. My brother, husband, eldest nephew (35) and best friend were all in attendance and all want to share in the care giver duties and I am so happy about that. My consent papers are signed and I am participating in a blind study where I will give my info and blood for the national bone marrow institute. Because of better HLA testing it is becoming no longer necessary to have a related donor over a non related donor. That is very exciting news! Also the survival odds have actually got better. Another donor has become available for me and this person is a 10/10 match so they are testing the particulars to see who will be best so of course it is taking longer. I had a tentative date of 6-10 if it is my first donor. I think it will be more toward the end of next month. I am very lucky to have more than one donor! We also found out that the info I got on insurance travel coverage was bogus and you have to live over 500 miles R/T to get any coverage! We live 280 R/T. So I am so happy that we have our friend's house available to us. It is about 40 miles but takes over an hour with traffic. There are several assistance programs available for travel and co pays so I am wading through paperwork. I have to have another BMB next week and I was suppose to start the Vidaza injections on Monday. I have to wait 3 weeks after my treatment before I can start chemo for the transplant so the shots are up in the air..I will let you all know as I do!! Thanks everyone

[ESeda]

Thanks for sharing Vera. All the best to you and I pray for your success.

Eli

[Vera W]

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!

[Laura]

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

[Vera W]

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.

[Laura]

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

[Vera W]

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

[Vera W]

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.

[Ruth Cuadra]

This is great news, Vera. A 10/10 match means you're much closer to that magic cure!

Regards,
Ruth

[Laura]

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

[Vera W]

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

[Laura]

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

[Vera W]

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?