typing one handed due to icepacks. fever 102.4, on oxygen. wbc went up to 103k yesterday, now down to 97k.
did my research on the weekend, before things got bad. found this and the docs were impressed enough that they are using it:
"Administering decitabine for 10 days, Blum et al  noted a CR rate
of 67% in 27 patients with unfavorable cytogenetics, a much higher
rate than with the usual 5-day schedule. Although median survival
was not reported for these patients, it was 1 year for all 53 patients
(median age 74)." --- this was from a paper by dr estey at the hutch
[31. Blum W, Garzon R, Klisovic RB, et al. Clinical response and
miR-29b predictive significance in older AML patients treated
with a 10-day schedule of decitabine. Proc Natl Acad Sci U S A.
my best to all,
I am so sorry to hear you are back in the hospital! You are such a fighter and I have learned so much reading your posts. By the way I thought Lexe made an awesome goal, that was a beautiful shot and everyone was so excited, loved it. I have learned so much as I have read about your research into trials. I bet you knock the doctor's and nurses sock's off! Please keep us updated on how you are doing and I am pulling for you 100%. Take care, you and your family are in my thoughts and prayers.
Bob, i just wanted to wish you the best. There have been a few folks on the forums that have dealt with leukemia cutis. PJ relapsed in the skin, got back into remisssion and had a second transplant.
You are definitely on a tough road, but I think you are one tough guy.
Have they added any additional chemo or are they sticking with the plan you had previously posted??
Dammit, Bob. I guess when it rains, it freaking pours...
We have had a couple of folks who have had leukemia cutis; PeeJay is the one who immediately came to mind. Here's a link to her thread. http://community.lls.org/thread/1851?start=0&tstart=0 All in all, it's pretty rare.
Basically, from what I understand, cutis is a form of extramedullary leukemia - that is, leukemia presenting outside of the marrow. Kelly also had a extramedullary presentation some four years after his transplant. His thread is here: http://community.lls.org/thread/11369?start=0&tstart=0
From what I can gather, and understand I'm certainly no doctor - the treatment is chemo, or if the marrow isn't involved, it might be treated (depending on the location) with localized radiation. In your case, I would think the chemo you're currently receiving should address the cutis as well.
Hang in there, Bob. We're all pulling for ya.
Damn, Bob, you're not having a good week, are you? I'm so sorry to learn about this. But it's not uncommon. I really don't have much to say beyond what WBF wrote. In fact, she had more than I would.
Just wanted to give you my best wishes and one piece of advice. Both PJ (peejay) and Kelly post mostly on the transplant forum. We could flag them over here but it would probably be better if you put a post on the transplant forum.
There have been a number of folks with cutis over the years. Most of them have done fine in dealing with that little wrinkle.
Just kick cancer butt.
This is Bob's wife, son, daughter and sister. Unfortunately the leukemia took over his body, entering not only his skin but the doctors suspected his lungs as well. His lungs filled with fluid and his breathing became very difficult. Bob did not want to be intibated as he felt it would not prolong his life. He fought a long hard battle and he made his family very proud. He really was a Leukemia Warrior. Earlier today, after he became unresponsive and there was nothing else to be done, we removed his oxygen mask and he died very peacefully. He was and will continue to be an inspiration to all who knew him. Thank you so much for your support these last few months. We know how much Bob/Dad relied on the AML blog as both a source of information and support. Rest in Peace, Bob Fulkerson. We will always love you. Robert Craig Fulkerson, November 24, 1950 - June 12, 2012
My heart is heavy after reading your post this morning. Bob's courage, his compassion for others, and his ability to find humor in the face of such adversity throughout the past several months was remarkable. My thoughts are with you as you begin the long process of healing.
Oh, I wasn't expecting this. I'm a little sick to my stomach. I've really grown fond of Bob over the last few months and am certainly stunned and saddened to learn of this.
He was a good man and I'm sure that's reflected in his family. My prayers are with you all in the days, weeks and months t come. Please know we're here if we can help support you in any way.
My heart is heavy reading this news, I am so sorry. I really enjoyed reading Bob's posts and following him on his journey. The information he shared has helped me and made me smile. I was so disappointed when he had to return to the hospital. I feel like I met a new friend and would of loved to have met him. He sounds like he was an amazing husband, father, brother, uncle, and friend. You all are in my prayers.
Hi Bobs family,
I was thinking about and praying for you all these last few days. I also wanted to thank you for honoring Bob's wishes, it is such a hard situation and my heart goes out to you. Not only was Bob a leukemia warrior but you were all there fighting along side with him. Thank you and take care.
Dear Bob's family,
Words cannot express the sadness I feel for your family. I was also just getting to know Bob from his posts. I am sorry I did not see this earlier. I have been staying with my mom, who has AML, who is in the hospital now fighting an infection. May you find peace in the loving memories you had with him.