I read his latest CaringBridge update, and he is relapsing. He is going back on oral chemo pills (probably a TKI, I think) and starting radiation. I am heartbroken that he is going through this after he's already been through so much.
BJ needs our prayers...
Posted 14 June 2012 - 09:55 AM
Oh no...I was wondering how he was doing lately. I am really sorry to hear it... Can you link his CaringBridge? I was trying to find it a while back but had a hard time.
Posted 14 June 2012 - 12:19 PM
He has several myeloid sarcomas (chloromas).
The approach being used is Donor Leukocyte Infusion, which will put more of his original donor's T-Cells into him to try to create additional graft vs host and graft vs leukemia effect. Radiation therapy is also being used. It is essentially relapse, but could potentially be turned around, although maybe not a high probability of success for this particular type of issue. Many such cases will require a second transplant.
Posted 14 June 2012 - 01:07 PM
Leukemia Cutis is not a good sign and is generally considered a progression of the disease. My Mom's AML came out of remission in November 2010 and I brought her up from Florida to New York Presbyterian Weill Cornell for treatment. Due to her young age of 83, Dacogen was the only reasonable treatment. The doctor tried to bang the leukemia back into remission with many 5 and 10 day cycles, until March 2011, when she developed a lesion on her scalp. She stopped the Dacogen and the doctor put her on an old anticancer pill named Etoposide, which was approved for lung cancer in the early 80's. At the same time, the doctor suggested she return to Florida, which we did. Initially the Etoposide reduced the lesion on her scalp, but more lesions appeared by the week. In the corner of her eye (standard) and on her arms, legs, and chest. I took her for a daily light dose of radiation, which was very effective in reducing the lesions. However, radiation is only cosmetic treatment (but was important to her). We could not keep up with the new growths and by late July the leukemia cutis infiltrated her organ(s). She passed away in the first week of August.
Posted 14 June 2012 - 08:24 PM
This is such devastating news - I've been following BJ throughout his journey and I am just so upset for BJ and his family and friends.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 14 June 2012 - 08:26 PM
Thanks for letting us know. I've been praying for BJ and other BMTers for awhile. The other day I was thinking to myself that BJ might be out of the woods and no longer in need of the prayers. I'm so sorry to discover that's not the case. May the Lord bless him and keep him safe.
Posted 14 June 2012 - 08:38 PM
Sorry to hear about BJ. My prayers go out for him and his family.
Posted 15 June 2012 - 08:08 AM
Thoughts and prayers to BJ and his family. Thank you Trey for providing the link, I was not familiar with BJ's story, before this post.
Posted 15 June 2012 - 10:27 AM
Thank you all for your prayers and thoughts...those we need...Yes we are facing a rare and devastating blow but the top 4 centers have already emailed us back with plans...we are not giving up nor giving in....there are people who faced the same thing as BJ 6 and 9 years ago... And are doing great today so no one is giving up....No place or time for any negativity....and remember research doesn't cover the exceptions....not angry at all with any of these posts...just a reminder to everyone to stay positive...otherwise CML wins!
Posted 15 June 2012 - 10:41 AM
All the best to BJ and your family. I enjoyed looking at the pictures on his CaringBridge. He has a great smile! Positive vibes going your way.
Posted 15 June 2012 - 09:56 PM
Positive thoughts coming your way! I have been reading your site throughout and he's simply too strong to lose...I am convinced. Is he going on Ponatinib? That is what it potentially looked like...
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Posted 15 June 2012 - 11:44 PM
I will keep BJ in my thoughts and prayers. May he heal quickly and completely.
Please take care,
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