Comments on: A New Phase Starts http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/ The Story of an Elective Cord Blood Stem Cell Transplant Wed, 08 Feb 2012 05:02:46 +0000 http://wordpress.org/?v=2.3.3 By: Chaya http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-356 Chaya Mon, 14 Apr 2008 13:49:30 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-356 Helen: I applaud your spirit, you are truly young at heart! As for your being a candidate for the double cord transplant, that depends on the age and fitness cut-offs each protocol has as part of its inclusion criteria. I believe the age cut-off for this particular clinical protocol is 75, so you would not be eligible for it. But there may be other protocols out there that are less restrictive - I do not know. However, I must warn you that any kind of a stem cell transplant, even the so called "mini" transplants, are pretty tough on the body and therefore a decision not to be made lightly. Please be sure to discuss all of your therapy options with your doctors and your family before you make decisions. Chaya Helen:

I applaud your spirit, you are truly young at heart!

As for your being a candidate for the double cord transplant, that depends on the age and fitness cut-offs each protocol has as part of its inclusion criteria. I believe the age cut-off for this particular clinical protocol is 75, so you would not be eligible for it. But there may be other protocols out there that are less restrictive - I do not know.

However, I must warn you that any kind of a stem cell transplant, even the so called “mini” transplants, are pretty tough on the body and therefore a decision not to be made lightly. Please be sure to discuss all of your therapy options with your doctors and your family before you make decisions.

Chaya

]]> By: HELEN S. http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-353 HELEN S. Mon, 14 Apr 2008 00:49:53 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-353 DEAR CHAYA, JUST READ YOUR E-MAIL REGARDING HARVEY' PROGRESS. WHAT UP-LIFTING AND ENCOURAGING NEWS. I AM 85 YEARS YOUNG AND HAVE HAD CLL SINCE 1994 (14 YEARS) AND WONDER IF I WOULD BE A CANDIDATE FOR THIS PROCEDURE. I DID NOT NEED TREATMENT UNTIL 2002 AT WHICH TIME THEY GAVE MY FLUDARABINE. IN 2005, I HAD ANOTHER CHEMO TREATMENT OF THREE MONTHS ON FLUDARABINE AND RITUXAN. THEN IN 2007 I HAD THREE MONTHS OF FLUDARABINE CYTOXIN AND RETUXAN. IN MARCH 2008, MY IMMUNE SYSTEM WAS AFFECTED. MY BODY WAS PRODUCING ANTIBODIES THAT WERE DESTROYING MY RED BLOOD CELLS AND HOSPITALIZED. AFTER 5 BLOOD TRANSFUSIONS IN 5 DAYS. I WAS MEDICATED WITH CYCLOSPORINE AND PREDNISONE, HAD BONE MARROW TEST WHICH THAT MY BODY WAS STILL MAKING RED BLOOD CELLS. mY WHITE CELLS ARE IN NORMAL RANGE, BUT I AM STILL ANEMIC. I WOULD APPRECIATE ANY COMMENTS OR SUGGESTIONS THAT YOU CAN SEND ME. MY VERY BEST WISHES TO YOU AND HARVEY. MAY YOU STAY HEALTHY AND GROW OLD TOGETHER. HELEN DEAR CHAYA,
JUST READ YOUR E-MAIL REGARDING HARVEY’ PROGRESS. WHAT UP-LIFTING AND ENCOURAGING NEWS. I AM 85 YEARS YOUNG AND HAVE HAD CLL SINCE 1994 (14 YEARS) AND WONDER IF I WOULD BE A CANDIDATE FOR THIS PROCEDURE. I DID NOT NEED TREATMENT UNTIL 2002 AT WHICH TIME THEY GAVE MY FLUDARABINE. IN 2005, I HAD ANOTHER CHEMO TREATMENT OF THREE MONTHS ON FLUDARABINE AND RITUXAN. THEN IN 2007 I HAD THREE MONTHS OF FLUDARABINE CYTOXIN AND RETUXAN. IN MARCH 2008, MY IMMUNE SYSTEM WAS AFFECTED. MY BODY WAS PRODUCING ANTIBODIES THAT WERE DESTROYING MY RED BLOOD CELLS AND HOSPITALIZED. AFTER 5 BLOOD TRANSFUSIONS IN 5 DAYS. I WAS MEDICATED WITH CYCLOSPORINE AND PREDNISONE, HAD BONE MARROW TEST WHICH THAT MY BODY WAS STILL MAKING RED BLOOD CELLS. mY WHITE CELLS ARE IN NORMAL RANGE, BUT I AM STILL ANEMIC. I WOULD APPRECIATE ANY COMMENTS OR SUGGESTIONS THAT YOU CAN SEND ME. MY VERY BEST WISHES TO YOU AND HARVEY. MAY YOU STAY HEALTHY AND GROW OLD TOGETHER.
HELEN

]]> By: Beth and John http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-350 Beth and John Sun, 13 Apr 2008 21:14:57 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-350 YEAH!!!!!!!!!! Beth and John YEAH!!!!!!!!!! Beth and John

]]> By: Cathie http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-328 Cathie Sat, 12 Apr 2008 21:34:56 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-328 Chaya and PC-- So Harvey was sprung on one of the worst days of our so-called spring! Thank goodness you will be here long enough to know that we sometimes do have very pleasant weather. I'm sure it feels good to be out of the hospital. I'm equally sure that Harvey has the best possible caretaker. What an emotional roller-coaster for both of you! Thank you for pioneering this treatment and for keeping us informed of all the details. I've been out of town a lot but will be here in Minneapolis, with car, all of April and half of May. If there is anything at all I can do, please let me know. E-mail for my phone number because the one in the phone book is wrong. Enjoy your freedom! Cathie Chaya and PC–

So Harvey was sprung on one of the worst days of our so-called spring! Thank goodness you will be here long enough to know that we sometimes do have very pleasant weather.

I’m sure it feels good to be out of the hospital. I’m equally sure that Harvey has the best possible caretaker. What an emotional roller-coaster for both of you!

Thank you for pioneering this treatment and for keeping us informed of all the details.

I’ve been out of town a lot but will be here in Minneapolis, with car, all of April and half of May. If there is anything at all I can do, please let me know. E-mail for my phone number because the one in the phone book is wrong.

Enjoy your freedom!
Cathie

]]> By: Michael Dereskewicz http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-323 Michael Dereskewicz Sat, 12 Apr 2008 21:09:38 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-323 Chaya, how happy I feel to hear of Harvey's awesome progress. Wow! You both will continue to be in my thoughts and prayers. I wonder if the CMV status should be determined frequently - like weekly. My understanding is that it can "hide" very well. Also, is it advantageous to get single donor red blood and platelet transfusions? Awaiting more good news, Michael Chaya, how happy I feel to hear of Harvey’s awesome progress. Wow! You both will continue to be in my thoughts and prayers. I wonder if the CMV status should be determined frequently - like weekly. My understanding is that it can “hide” very well. Also, is it advantageous to get single donor red blood and platelet transfusions? Awaiting more good news, Michael

]]> By: Kathy (howeasykl) http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-322 Kathy (howeasykl) Sat, 12 Apr 2008 21:08:59 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-322 Wonderful news of PC's early hospital discharge. May he surpass all expectations from here on out! (I have had 32 red blood cell transfusions and the blood is ALWAYS leuko-reduced and CMV-negative. And yes, headaches usually precede my need for a transfusion.) Wonderful news of PC’s early hospital discharge. May he surpass all expectations from here on out!
(I have had 32 red blood cell transfusions and the blood is ALWAYS leuko-reduced and CMV-negative. And yes, headaches usually precede my need for a transfusion.)

]]> By: Wayne Wells http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-320 Wayne Wells Sat, 12 Apr 2008 14:43:50 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-320 Chaya - again you have proved the value of asking the right question which is so obvious after you raise it yet so hidden before the fact! I believe you stated that you are planning to begin refunding for CLLTopics at sometime in the future. Can you permit me to have some fun with the girl/boy cord blood issue toward kick starting that goal? So far I am in a minority in the belief that it will be the male cord winning out. So, I propose that those who wish to join in the guessing game put any amount of money up as a new funding pledge and choose. At some time in the future you could tell us which it is and those who guess incorrectly must double their pledge toward CLLTopics funding. All bets are really just pledges so CLLTopics and all CLLers are really the winners while having some fun at the same time. I maintain belief that my guess is superior not because of any prejudice in a false belief in inherent male superiority but in human nature at the cellular level. In the presence of the female cord blood the male cord blood is obviously showing off trying to prove that "he" can protect Harvey and get him on his road to recovery quicker. With this profound insight on this interesting development from Harvey's transplant I am pledging token amount of $20.00 on the male cord winning out. If Debbie is reading this what do you say? Though Chaya has declared on the side of the girl cord, Harvey has remained silent to our knowledge owing to his wisdom no doubt. Keep the good news coming! Chaya - again you have proved the value of asking the right question which is so obvious after you raise it yet so hidden before the fact!

I believe you stated that you are planning to begin refunding for CLLTopics at sometime in the future. Can you permit me to have some fun with the girl/boy cord blood issue toward kick starting that goal? So far I am in a minority in the belief that it will be the male cord winning out. So, I propose that those who wish to join in the guessing game put any amount of money up as a new funding pledge and choose. At some time in the future you could tell us which it is and those who guess incorrectly must double their pledge toward CLLTopics funding. All bets are really just pledges so CLLTopics and all CLLers are really the winners while having some fun at the same time.

I maintain belief that my guess is superior not because of any prejudice in a false belief in inherent male superiority but in human nature at the cellular level. In the presence of the female cord blood the male cord blood is obviously showing off trying to prove that “he” can protect Harvey and get him on his road to recovery quicker. With this profound insight on this interesting development from Harvey’s transplant I am pledging token amount of $20.00 on the male cord winning out. If Debbie is reading this what do you say?

Though Chaya has declared on the side of the girl cord, Harvey has remained silent to our knowledge owing to his wisdom no doubt.

Keep the good news coming!

]]> By: Beth and Mark http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-319 Beth and Mark Sat, 12 Apr 2008 03:58:13 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-319 Fantastic news! Fantastic news!

]]> By: Rita Horwitz http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-318 Rita Horwitz Fri, 11 Apr 2008 20:51:57 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-318 Keeping the port clean will become like brushing your teeth. Second nature. Keep up the good work Harvey. I'm so proud of you. AND..Chaya, take care of Chaya, also. Rita Keeping the port clean will become like brushing your teeth. Second nature.

Keep up the good work Harvey. I’m so proud of you.

AND..Chaya, take care of Chaya, also.

Rita

]]> By: David & Marilyn http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-317 David & Marilyn Fri, 11 Apr 2008 20:44:17 +0000 http://www.journal.clltopics.org/2008/04/10/a-new-phase-starts/#comment-317 Wonderful news on Harvey's progress! Getting out of the hospital is a milestone in his new, CLL-free life. As to blood transfusions, I ran across this info at bloodbank.com: "The following tests, that are not required for most transfusions, are often performed on Blood that may be needed for newborns and special needs patients: "Antibody to Cytomegalovirus (CMV) - Screening for the antibody to cytomegalovirus (CMV), which is a very common virus in our environment, is performed on products intended for immunocompromised recipients such as patients undergoing chemotherapy for leukemia or cancer, transplant patients, and low birth-weight infants. " http://www.bloodbook.com/test-donated.html . . . "not required . . . often performed." In other words, you takes your chances. I almost had transfusions twice, each at a different hospital. Certainly at the second location -- a regional medical center serving 50,000 people -- I was not checked for CMV, nor was the blood. As I wrote in my blog (CLL Diary), Marilyn and I refused the transfusion as the blood was not irradiated and the ER doctor essentially said I shouldn't do it because of the possibility of viruses in the blood, including CMV and "the flu that has been going around." It's not only CMV that's out there. Immune-compromised patients, especially those thinking of a transplant in the near future, should be careful that they don't pick something up in a transfusion that might throw a monkey wrench into the whole process. http://clldiary.blogspot.com/2007/11/im-doing-chemo-now-part-1-how-need.html Wonderful news on Harvey’s progress! Getting out of the hospital is a milestone in his new, CLL-free life.

As to blood transfusions, I ran across this info at bloodbank.com:

“The following tests, that are not required for most transfusions, are often performed on Blood that may be needed for newborns and special needs patients:

“Antibody to Cytomegalovirus (CMV) - Screening for the antibody to cytomegalovirus (CMV), which is a very common virus in our environment, is performed on products intended for immunocompromised recipients such as patients undergoing chemotherapy for leukemia or cancer, transplant patients, and low birth-weight infants. ”

http://www.bloodbook.com/test-donated.html

. . . “not required . . . often performed.” In other words, you takes your chances.

I almost had transfusions twice, each at a different hospital. Certainly at the second location — a regional medical center serving 50,000 people — I was not checked for CMV, nor was the blood. As I wrote in my blog (CLL Diary), Marilyn and I refused the transfusion as the blood was not irradiated and the ER doctor essentially said I shouldn’t do it because of the possibility of viruses in the blood, including CMV and “the flu that has been going around.” It’s not only CMV that’s out there. Immune-compromised patients, especially those thinking of a transplant in the near future, should be careful that they don’t pick something up in a transfusion that might throw a monkey wrench into the whole process.

http://clldiary.blogspot.com/2007/11/im-doing-chemo-now-part-1-how-need.html

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