Naomi's Replies | MDS Foundation

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June 26, 2005 at 6:44 pm in reply to: Day 1 post BMT #7210

Naomi
Member

Great News. Hope all continues to go well
Naomi

June 25, 2005 at 4:15 am in reply to: Hoorah! #7174

Naomi
Member

Suzanne:
This is wonderful news. I am so glad for you.
I had a set back, got a bacterial sinus infection and ended up in the hosp for 3 days. Doing better now and hope I can get to the same place as you.
Naomi

June 23, 2005 at 7:31 pm in reply to: cord blood transplant #7075

Naomi
Member

Sarah:
I think there are cord blood txs going on at either Cleveland Clinic or Westtern Reserve Univ Hosp in OH.
If I am not mistaken, Ruby had one there.
Hope it helps.
Naomi

June 20, 2005 at 4:58 am in reply to: When are red blood counts too low? #6837

Naomi
Member

Tah:
When I was getting txs, I would get one when I hit anything below 28.9 hct. Some times I felt like I needed a tx sooner. It all depends on your body. My doc told me he treated twins. One needed tx at 29 and the other could function very well at 22. Everyone is different and only you know what your body will take.
Naomi

June 9, 2005 at 8:11 pm in reply to: Revlimid FDA Review #6712

Naomi
Member

Please add these names also:
Gail Parmentier
Woonsocket. RI
Michael and Marsha Backus
Dansville, NY
Naomi Sapp
Dansville, NY

June 8, 2005 at 2:41 am in reply to: Revilmid is Good News for Me #6627

Naomi
Member

Karen:
I have been a patient at Strong Hosp in Rochester, NY since 3/2001. I have participated in several trials and this is the first one to work for me. I started it 11/2003, but had to lower the dose because of hives. I stayed on the lower dose (5 mg) and went into remission in 4/2004. Sept I came out of remission and was rechecked in Jan 05. Raised the dose to 10mg and am now in remission again. I have 4 more months to go on this trial. This being a long term (24 months or cycles) is one of the longer trials I have found.
Maybe when revlimid is approved, you can come over to Rochester and get some. You may have it prior to the US getting approval.
Hope this has helped and that your father will be able to get it soon.
Naomi

June 4, 2005 at 4:26 am in reply to: WOOHOO!! #6603

Naomi
Member

Fantastic news Lola.
I took your “alphabet soup” in to my doc today and he chuckled about it. He is passing it on to Dr. Bennett saying he will really enjoy it. He was showing it around, as someone else came up to me and said they thought it was great. Always glad for a little humor.
Will keep you in my prayers
Naomi

May 2, 2005 at 5:25 pm in reply to: We lost the fight #5793

Naomi
Member

Dearest Kate:
I am saddened by the passing of George. I have been gone for awhile and just found out. Take comfort in your good times and know that he is in a much better place with no more suffering.
You are in my prayers
Naomi

April 8, 2005 at 5:48 pm in reply to: some good news #5369

Naomi
Member

Wonderful news Suzanne. I wish that this kind of news is something that we all could post, as I am sure that everyone else on the forum wishes also.
Keep up the good work and continue to enjoy life to the fullest.
Naomi

April 8, 2005 at 5:42 pm in reply to: rambling…..waiting for appt. on Mon…….. #5345

Naomi
Member

Hi Lola:
I know what you mean about Riverside Park. My daughter loved the carousel. She is now 38 and still loves it. For a long time she had one of the rings from it.
Enjoy the rides.
Naomi

April 7, 2005 at 2:27 am in reply to: mds awareness day #5326

Naomi
Member

Eve:
I received a mailer from the MDS Foundation. The presentation is at St. Bartholomew’s Church, 3rd floor, Terrace Room, 109 E. 50th St.
NYC NY 10022.
It is from 11:30 am to 1:30 pm. Registration needs to be made by 4/11/05. Call the Foundation to register.
Dr. John Bennett, Dr. Eric Feldman, Dr. Charles Hesdorffer, Dr. Stephen Nimer, Dr. Louis Silverman, are invited guest speakers and special guest is Mia Hamm.
I am not able to go.
I will be hear Dr. Bennett speak at Gilda’s House here in Rochester the end of the month and am looking forward to it.
Naomi

March 24, 2005 at 6:29 pm in reply to: Mds and hereditary? #4708

Naomi
Member

Karen:
Did you ever think about cigarettes? These also have some of the chemicals that are thought to cause MDS (i.e. benzene, formaldehyde, ammonia, are a few). This could be the cause that many do not even think of and if you are predisposed, as you are saying, and exposed to cigarette smoke even if you do not or did not smoke it could easily be the cause.
It is something to think about.
Naomi

March 16, 2005 at 6:02 pm in reply to: Recent BMB #4827

Naomi
Member

Marsha:
Wonderful news and it is always soooo good to hear it. Keep all those germs away.
Naomi

March 12, 2005 at 6:00 am in reply to: Mom not doing well #4738

Naomi
Member

April:
I hope that things go well for you. You are strong and have been going through this with you mother-in-law, so be there for your husband no matter when it all happens.
Prayers are with you.
Naomi

March 12, 2005 at 5:58 am in reply to: Mom not doing well #4737

Naomi
Member

Deb:
I am sorry that your mom passed away. Keep the good memories and that will help you get through the days ahead. My prayers are with you
Naomi
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