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X-husband with bcl-2/myc looking for others

Marydutton
Posts: 14
Joined: Feb 2013

He was dignified in nov 2012. Went to Houston in dec started epoch.  Was stage 4. Horrible shape, byet the end of January they discovered tby bcl-2 amend myc issues. They say its rare but after reading this forum I'm not so sure.  

They now want to do a sct.  They don't think they can cure him without it.  His marrow was clean this time and looked to be in total remission. But the original site (leg) still looked questionable. However since his marrow was clean they feel comfortable. Will leave march 11th and not come home until around the middle June. 

He is not good at asking questions and he mentioned it was a "no brainer". The doctor said its not that easy basically.  I think he thinks this is going to be cake walk and while I hope it is I am hoping to find someone that has done this or someone.  we have 2 children and I wished I would have asked the doctor the odds of it but one of our children sat beside me and I just couldn't bring myself to it. I apologize for any spelling errors. It's late and I'm pecking away on my iPad 

 

mary

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hi Mary and welcome to the site.  I'm sorry you guys are having to go through this.  There are others here who have completed, are going through and soon will start stem cell transplants.  There are wonderful and supporting folks on this site and you'll be hearing from them soon.  I just wanted you to know we are listening and you and your ex-husband are welcome here anytime.  Sending postive thoughts and wishes and hugs.

Jim

Marydutton
Posts: 14
Joined: Feb 2013

Thank you. They leave again on the 9 th of march. Just don't know what to expect or see anyone posting with like cancer. 

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

I don't have advice for you, as I have a different type of lymphoma than your husband, mediastinal diffuse large b cell, but I am going to have a stem cell transplant. It's a long process, and it will be no picnic, but it will cure me. I'm scheduled for the inpatient high dose cheme May 14th, and the SCT May 20th. I will have to be away from my family for 5 weeks. My mom will be with me, but I have two children, a daughter who is celebrating her 8th birthday today, and a son who will be celebrating his 10th birthday next month. We'll make arrangements for visists during my 5 weeks away. I understand your desire to know what to expect and to prepare yourself and your children what lies ahead for you ex-husband. Wishing you all the best, liana

 

Marydutton
Posts: 14
Joined: Feb 2013

Thank you both for your posts.  They left today and made it to Houston about an hour ago.  He was suppose to be doing his 5th round of chemo (via backpack) starting Wednesday.  However, we now noticed they have him down to be admitted in the hospital Wednesday.  His doctor is on vacation so perhaps the doctor seeing him thinks he is always admitted.  Does anyone know why they may admit him this round? 

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