Remission and Next Steps

Relapse

Day 32

I'm in remission!!

The biopsy was as expected, not awesome. But, I made it. I left so emotional. I was so thankful that the nurse practitioner that did my biopsy was available, since she did my last two. I really like her. I was so thankful that Zach was able to be there and hold my hand.

Honestly it was an emotional week all around.

Friday I was drained. Zach and I met with the transplant doctor and coordinator. So much information. So many things to think about. I left emotionally drained. I took a two hour nap when I got home.

So, here is where we are. Next steps.

My transplant team is currently on the search for a donor. There are zero decent options in the registry right now.

- - - - side note - - - -

Please, please, please, go out, get on the registry. If you are a healthy 18-44 year old, especially if you are of mixed or non-white nationality (but even if you are a whitie GO!), go to Be The Match and join. It's so easy, sign up, get swab kit in the mail, swab your mouth, send back. That's it! You could save someones life!!

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My team is looking at cord blood options, but because of my antibodies, those options aren't great either. But, it is an option because of the new research and technology we have. The other options that we are looking at include testing my sister (even though, that is not promising) and possibly my 14 year old son and doing a Haplo transplant. 

In all cases it's scary and unknown and not ideal. But I am confident that my team will know the best option to go with. 

Timeline.

We don't really know yet, but here is what we are guessing.

In the next two weeks or so, I'll do another round of chemo, CLAG, to keep me in remission.

Within eight weeks of that round of chemo I will go in for transplant. They will do the best option available at this time. We don't want to risk me relapsing again and not being able to get into remission or having complications from chemo and not being able to receive the transplant. Zach and I are guessing transplant will happen the first part of May. 

I will spend 6-8 weeks in patient getting chemo and radiation, transplant, and then waiting until my counts recover. My immune system will be completely wiped and the doctors need to keep a very close eye on me to make sure they stay on top of any infections during this time period. 

From there I will be able to go home (since I live within 20 miles of the transplant hospital) but will need a 24/7 caregiver until day 100. Day 0 is transplant day. I'll be going into the clinic 2-3 times a week during this time for labs and follow ups. 

After day 100, I'll be released back to my oncologist for labs and follow ups. The more time that passes the less frequently I will need to go in for labs and follow ups. 

On my 5 year birthday (transplant day is like a new birthday) I will be considered cured. But, of course, will need to do more and earlier cancer screening than the average person. With the radiation/chemo/transplant, I will have a higher chance of getting a secondary cancer like breast, thyroid, or skin cancer. 

The doctor says there is still a 50-70% chance of a cure. The better the match, the better the odds. So go... Be The Match!

Will update again soon.
Love & Light.
😷😘 michelle