Comments on: Springtime! http://www.journal.clltopics.org/2008/05/22/springtime/ The Story of an Elective Cord Blood Stem Cell Transplant Wed, 08 Feb 2012 04:45:41 +0000 http://wordpress.org/?v=2.3.3 By: Bruce http://www.journal.clltopics.org/2008/05/22/springtime/#comment-908 Bruce Sat, 31 May 2008 03:17:43 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-908 I raise my glass to Seattle Slim. You and PC are in my prayers. Namaste. I raise my glass to Seattle Slim. You and PC are in my prayers.
Namaste.

]]> By: Ann http://www.journal.clltopics.org/2008/05/22/springtime/#comment-906 Ann Fri, 30 May 2008 16:40:20 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-906 Chaya, Many of us know how you feel about the fresh breath of Spring. What an experience you two have been having. May your continuing days there be short and Sedona, the dog, less laundry, and weight gain for PC be just around the corner. Sending all good thoughts your way. Ann Chaya, Many of us know how you feel about the fresh breath of Spring. What an experience you two have been having. May your continuing days there be short and Sedona, the dog, less laundry, and weight gain for PC be just around the corner. Sending all good thoughts your way. Ann

]]> By: Mark http://www.journal.clltopics.org/2008/05/22/springtime/#comment-904 Mark Thu, 29 May 2008 23:32:25 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-904 Chaya, Thanks so much for keeping us all updated. You and PC are in my prayers. Chaya, Thanks so much for keeping us all updated. You and PC are in my prayers.

]]> By: Kathryn http://www.journal.clltopics.org/2008/05/22/springtime/#comment-903 Kathryn Thu, 29 May 2008 21:13:21 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-903 I check this journal every day and continue to send healing energy your way. I hope that warm spring sun is still shining on you and Harvey - and that he has continued to progress this past week. Be well. I check this journal every day and continue to send healing energy your way. I hope that warm spring sun is still shining on you and Harvey - and that he has continued to progress this past week. Be well.

]]> By: Maddog23 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-899 Maddog23 Wed, 28 May 2008 22:58:58 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-899 Chaya: I am thrilled to see that Harvey's fever has subsided. I wish you and PC the best. Chaya: I am thrilled to see that Harvey’s fever has subsided. I wish you and PC the best.

]]> By: brian http://www.journal.clltopics.org/2008/05/22/springtime/#comment-897 brian Wed, 28 May 2008 02:05:56 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-897 Chaya, Great news. One thing they teach in medical school is that fever does not equal infection. I bet you are right in thinking this is an inflammatory process, especially with the dramatic response to steroids. Victor Frankel wrote "Tragedy is suffering without meaning" I wish that Harvey did not have to suffer so, and the value of your journal in no way compensates for that, but I and others have gained so much meaning from what you have chosen to share. Thank you again. I had my BMB, ABGs and PFTs today in prep for my transplant in a month. BMB results in 3 days. CT scan next week. Be well. Stay strong Brian Bkoffman.blogspot.com Chaya,
Great news. One thing they teach in medical school is that fever does not equal infection. I bet you are right in thinking this is an inflammatory process, especially with the dramatic response to steroids.
Victor Frankel wrote “Tragedy is suffering without meaning” I wish that Harvey did not have to suffer so, and the value of your journal in no way compensates for that, but I and others have gained so much meaning from what you have chosen to share. Thank you again.
I had my BMB, ABGs and PFTs today in prep for my transplant in a month. BMB results in 3 days. CT scan next week.
Be well. Stay strong
Brian Bkoffman.blogspot.com

]]> By: chaya http://www.journal.clltopics.org/2008/05/22/springtime/#comment-894 chaya Tue, 27 May 2008 00:13:42 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-894 Dear Chris C EBV is indeed risk factor after a transplant. It is one of the viruses they test for here, each week. Fortunately, we now have much more sensitive pcr (polymerase chain reaction) testing methodology available and they can detect minute traces of the virus DNA in blood. EBV reactivation after transplant can cause something called PTLD (post transplant lymphoproliferative disease). It is manifested by rapid enlargement of lymph nodes, filled to the rafters with EBV infected B-cells. Until recently PTLD carried very high mortality risk. Left untreated PTLD often transformed into frank malignant lymphoma - dangerous stuff. The therapy options are much improved for PTLD patients today. THE drug of choice is our old friend Rituxan, the master killer of B-cells. It is now the standard of care for transplant patients presenting with even the slightest hint of EBV reactivation. As many of you may recall, Harvey had developed hypersensitivity to Rituxan and may not use it ever again. Several months ago I worried about this possible scenario, that Harvey may develop PTLD after transplant and we would have no way of treating him. I contacted Genmab, the company that has been kind enough to grant him compassionate use access to Humax-CD20 a couple of years ago, to see if they would let him have Humax-CD20 for this instance as well. Once more, Genmab stepped up to the plate. We managed to get all the paper work done (FDA approvals, IRB (internal review board) approvals of Fairview hospital, legal agreements between the company and the doctor taking responsibility for treating Harvey - you won't believe the amount of paper work). Sufficient Humax-CD20 is now safely stashed away here waiting for when and if Harvey ever needs it. So far his EBV viral titers have stayed below the detection limit and I hope they stay that way for ever! Dear Chris C

EBV is indeed risk factor after a transplant. It is one of the viruses they test for here, each week. Fortunately, we now have much more sensitive pcr (polymerase chain reaction) testing methodology available and they can detect minute traces of the virus DNA in blood.

EBV reactivation after transplant can cause something called PTLD (post transplant lymphoproliferative disease). It is manifested by rapid enlargement of lymph nodes, filled to the rafters with EBV infected B-cells. Until recently PTLD carried very high mortality risk. Left untreated PTLD often transformed into frank malignant lymphoma - dangerous stuff.

The therapy options are much improved for PTLD patients today. THE drug of choice is our old friend Rituxan, the master killer of B-cells. It is now the standard of care for transplant patients presenting with even the slightest hint of EBV reactivation.

As many of you may recall, Harvey had developed hypersensitivity to Rituxan and may not use it ever again. Several months ago I worried about this possible scenario, that Harvey may develop PTLD after transplant and we would have no way of treating him.

I contacted Genmab, the company that has been kind enough to grant him compassionate use access to Humax-CD20 a couple of years ago, to see if they would let him have Humax-CD20 for this instance as well. Once more, Genmab stepped up to the plate. We managed to get all the paper work done (FDA approvals, IRB (internal review board) approvals of Fairview hospital, legal agreements between the company and the doctor taking responsibility for treating Harvey - you won’t believe the amount of paper work). Sufficient Humax-CD20 is now safely stashed away here waiting for when and if Harvey ever needs it. So far his EBV viral titers have stayed below the detection limit and I hope they stay that way for ever!

]]> By: Ken and Barb Florence http://www.journal.clltopics.org/2008/05/22/springtime/#comment-893 Ken and Barb Florence Mon, 26 May 2008 22:55:03 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-893 Fantastic news, after a tough fight. We will keep you both in our prayers. Fantastic news, after a tough fight. We will keep you both in our prayers.

]]> By: wow what a road http://www.journal.clltopics.org/2008/05/22/springtime/#comment-891 wow what a road Mon, 26 May 2008 19:11:15 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-891 Wow what a road you two have traveled together. So glad it has finally straightened out now! Hate those crooked ones where you never know what is around the next bend. You are in my prayers --- Darlene Dorsey Wow what a road you two have traveled together. So glad it has finally straightened out now! Hate those crooked ones where you never know what is around the next bend.

You are in my prayers —

Darlene Dorsey

]]> By: David & Marilyn http://www.journal.clltopics.org/2008/05/22/springtime/#comment-890 David & Marilyn Mon, 26 May 2008 17:43:12 +0000 http://www.journal.clltopics.org/2008/05/22/springtime/#comment-890 Oh, we think you can let yourself get just a little bit euphoric! Harvey has passed a big hurdle with the engraftment, the fevers are under control, and the CMV is well on its way out. Plus Harvey got to keep his hair, and there's nothing so stressful right now that would cause you to tear yours out! Oh, we think you can let yourself get just a little bit euphoric! Harvey has passed a big hurdle with the engraftment, the fevers are under control, and the CMV is well on its way out. Plus Harvey got to keep his hair, and there’s nothing so stressful right now that would cause you to tear yours out!

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