Having 1.5 years success with Gleevec, my son had BMB on Wed. because he had gone from MMR to 8 blast cells. We are now in the Cleveland Clinic in blast crisis. (20 year old son dx Dec 2009 - quickly moved to MMR with Gleevec until literally 2 weeks ago). He now is at 25 blasts and we will be here for one month. He is receiving 1 week of two intense chemos along with Spryacel and will be then be carefully monitored but has to remain here. We are so fortunate to have the Clinic and our own hematologist who rapidly got us in (we live about an hour away). For those of you with faith, please say prayers for BJ. He was in exercise room on floor tonight "fighting back" but by days 12 though 14 will be critical. His platelets are down to 35 and transfusion given at 10. He had been going for CBCand PCRs once monthly because of a recent drop in white and platelets...So this literally came on in two days...I don't write in often, but I have followed your journeys since Dec 2009 and pray for you all.
Prayers Please-Blast Crisis
Posted 17 June 2011 - 10:31 PM
Hi: I was just getting ready to shut down here for the night, but I will pray for your son BJ before I turn in for the night. You said you have Faith, please let your faith take over for you. Let Go and Let God. They will do whatever they have to do to get BJ in a stable condition, so he can go on with his treatments.
I do not know what made me check messages so late, but maybe God wanted me to read your message.
Please do not stay in the background just reading our posts. We are all here to listen and help. Either you or BJ can get on here and share anytime.
Everyone comes across different problems at different times, and you can find a lot of answers on here from some very intelligent people who really know as much as the doctor in some instances. I will pray for you to have a good night with good results for BJ.
Please let us know how he is improving as he goes along with his care.
Posted 17 June 2011 - 11:46 PM
I am praying for BJ and your family. Prayer is powerful and we have to remember to let God take control. I am struggling for the right words but please know we will keep you in our prayers.
Posted 17 June 2011 - 11:56 PM
Sending some prayers for BJ and his family from Australia - hopefully they work well while you're all sleeping.
It sounds great that he is exercising - exercise is a great happy "drug" if you can do it.
It must be incredibly hard for you to have this happen to your son. I hope while you are looking after him you can look after yourself a little too.
If we can help even a little bit please keep posting.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 18 June 2011 - 12:43 AM
Sending prayers from California, that is scary, time to fight, fight, fight. Please keep us updated when you have the chance. Sending my best vibes now....
Posted 18 June 2011 - 06:48 AM
I will certainly pray for your son. God can use the doctors to bring him back to a near nomal state. My faith in God has been my mainstay through the last 6 weeks since I was dx. I cannot imagine what you must be going through having a child with CML. Any parent would gladly take their place. I am praying for your son as well as for you. Keep your faith.
Posted 18 June 2011 - 07:24 AM
Thank you for your support and prayers - we had a very rough night with seizing and temp spike to 101 - including 4 hours dry heaves - I started a caringbridge where I will list specific drugs and treatment plan for those of you who like to do "research" - this will also be a way to reach our family and friends - and thank you for including us in your family...I wont have time to keep LLS updated but plz follow our journey if you'd like = and keep praying - Thanks Tracy...www.caringbridge.org/visit/bjranier.. WHEN we are out of blast crisis, I;ll repost!
Posted 18 June 2011 - 07:25 AM
Earnestly praying for BJ and all of you during this frightening time. God can do all things. He is in control and I pray he gives the medical staff the knowledge and wisdom to bring BJ out of the blast stage and the peace you all need to get through this. God Bless, Skittles
Posted 18 June 2011 - 08:15 AM
I will be keeping your precious son BJ in my prayers!!! Also keeping your family in prayer as well!!! I am so sorry for the journey all of you are on but, with GOD, all things are possible!! I also go to the Cleveland Clinic, my doctor is Dr. Advani, she is great, she made me feel so encouraged, listens to all I have to say, questions I ask, she makes me feel as tho I am the only one she is thinking about at my appointments!! As it should be. My next appt. is July 7th with her & if I can do anything for BJ or the family while I am there, please let me know!!!! My heart & prayers are here for you!!! as always, prayers to all, grannyd
Posted 18 June 2011 - 11:29 AM
I am sending prayers for BJ and your entire family from Joplin, MO. Blessings! Lisa
Posted 18 June 2011 - 03:28 PM
Prayers coming your way! Tell BJ to hang in there and have faith!
Posted 18 June 2011 - 07:34 PM
Tranier. . .sending good thoughts and vibes your way from Colorado. I hope that all goes well for you and your son. Best of luck.
Posted 18 June 2011 - 08:40 PM
I just wanted to let you know I will pray for BJ and your family. I have a strong testimony of prayer and have witnessed miracles through prayer.
Lots of love,
Posted 18 June 2011 - 08:57 PM
What a difficult this time is for you and your family, so glad you shared this with us all on here. Please know we are here for you, I have and will continue to pray for your son. Keep us posted on his progress. May God hear our prayers and bring you comfort and strength to your son!
Posted 19 June 2011 - 07:20 AM
I also have a son with CML and am shattered by your news. I can only imagine how horrible this nightmare is, I cannot believe how quickly the CML progressed and didn't realise that it was possible with that speed.
I will follow your caringbridge and add BJ to my prayers. Stay strong, our thoughts are with BJ and his family.
Posted 19 June 2011 - 09:58 PM
Am praying for your son, and you and family as well, that His Peace would sustain you through all that you encounter.
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users