3 replies to this topic

[Bb1823]

Hi everyone, I look at this board all the time but my first time posting... Tonight I had an overwhelming urge to share our story!

Last July my husband (34) and I (29) found out we were expecting our first child. 3 months later (September 2014) my husband started getting night sweats and lost his appetite, and all month felt like he was fighting the flu. After a few doctors visits and follow up blood tests, he was sent to a hematologist where he was diagnosed with leukemia. His blasts were in the high teens, so they expected aml. He was treated with induction chemo, and thankfully by the end of October he was declared in remission. Around this same time, his cytogenics came back and they found he was PH +. It was at this time he was rediagnosed with CML, in the accelerated/blast phase. He is now on 140mg of sprycel, and by March of this year, his PCR was undetectable. (The same month our baby girl was born!)

Because of His diagnosis, the docs wanted my husband to pursue a bmt in April. His best option was a haplo transplant with his sister. They decided to do a mini transplant because there was no cancer to kill off, but unfortuantly we found out about 2 months after the transplant it didn't take. Probably a combination of the half match and reduced chemo instead of the full blown transplant.

So here we are today. My husband is doing wonderful, and remains undetectable. His docs aren't interested in pursuing another transplant (unless he becomes resistant) and are 'optimisitic' because of his great response that he should be able to just take a TKI and lead a normal life. Another reason the docs wanted a transplant initaially is because he's so young... And they don't have long term data yet on the effects of sprycel.

I should also mention we are being treated at dana farber, by one of the best Specialists in the field.

It's been a whirlwind and I would be lying if I said Im not scared every single day. He's the love of my life and now the father of our beautiful little girl. Just like all Of you I am so thankful for the research and options that are available today. I can only trust our doctors and hope for continued research in the future. Thanks for listening.

[Antilogical]

From personal experience, I think parenthood is just as exhausting as the side effects of the CML meds, and both are oh-so-worth it.  Congrats on the birth of your baby girl!

[Noodle]

BB,

 

I am an AML survivor rahter than CML so your story is so interesting to me.  I had chemo only vice SCT because I had a favorable sub-type (Inversion 16) and am nearing 2 years since end of treatment in Nov which is huge-I am so grateful to almighty God.  It is interesting that your husbands med team opted for a haplo.  Was that because no 10/10 MUD match could be found on the International registry?

 

It sure sounds like you have every reason to be optimistic especially based upon receiving treatment at DF. As far as fears goes, I was 48 at DX with three daughters 8 10 and 12 who needed their mother.  My two cents are please try to not spend time on fear and worry-it steals your joy.  Try to enjoy each day as it comes and enjoy that precious baby girl.

 

Blessings

Julie

[Trey]

That is an interesting story.  Glad all is working out well.

 

A mini-transplant (one where the patient's blood system is not wiped out entirely by chemo and radiation) does not usually work for CML.  The reason is that CML starts very high in the blood making (hematopoietic) hierarchy, unlike most other leukemias which start lower in the hierarchy.  So unless the hematopoietic system is entirely wiped out the likelihood of success is very slim because the originating leukemic cells survive the mini-transplant process.  This is true even if the patient is PCR undetectable. 

 

The haplo transplant also requires suppression of the remaining immune system, otherwise the remaining immune system will often wipe out the low matched donor blood cells. 

 

But as long as the TKI drugs continue to work, all is well.  The fact that he responded quickly and deeply to Sprycel is a good sign. 

Edited by Trey, 19 October 2015 - 07:00 PM.