Road to a BMT... oops just got there (Day +50)

[NMMP]

Happy New Year - wishing you all a healthy, peaceful and happy 2018

I can’t believe we are already at day 50 in our BMT process - we have been home for 3 weeks now and life is starting to normalize itself, as we all know it is once again a “new normal”.

Every relapse, every new treatment results in CLL’er’s and CarePartner’s embracing a new normal , new hope and new trauma to get through.

Again, lots going on and Mark has managed to relax a little more each day, fatigue is still an issue, food still does not taste right and he has been dealing with a bladder virus called BK, which needs to correct itself but has been improving daily.

His blood work continues to improve and we have had a few dips here and there with WBC and Neutrophils but as of Tuesday all counts are in the normal range and we started tapering down on the CYCLOSPORINE, we have gone from 125mg to 100mg to 75mg and starting today 50mg, twice a day. This is a big step, however less protection against GVHD. Currently Mark is experiencing mild GVHD of the skin, and we have been able to manage it with over the counter creams.

We also received the results of the CHIMERIC Test (who’s DNA is who’s) and the result were 96.7% donor which is impressive. The results confirm engraftment is progressing.

We have also been able to reduced our hospital visits from twice and a week to once - all milestones to celebrate.

Our next big step is Day 60 when Mark will have another CHIMERIC test as well as a BONE MARROW BIOPSY. We are hoping to see some GVL (graft vs. Leukemia but have been advised not to expect a big decline from our previous biopsy (pre-BMT) which was 30-40%. The reason being that CLL is a slower and more aggressive leukemia and takes longer to breakdown. We are hoping for any decline regardless of the number as long as it is going down 😀.

Thank you for your time and take care.

NNMP

[UK-Sparky]

Thanks for heads up, Mark is blessed with your love and strength as a carer. Hope improvement continues.

UK Sparky

[sumok]

this is wonderful news! great chimerism result

heartfelt wishes for a happy new year!

[Justasheet1]

WOW, wonderful news for the New Year and your new normal.

[Hidden]

Congrats! Allo is a potential cure and I wish cure for Marc. Where are you in Canada?

[NMMP in reply to Hidden]

Hi 11qhope,

That is certainly what we hope for - Mark has relapsed twice and here in Canada there is no other option.

We live just outside of Toronto, Ontario.

NMMP

[Hoffy]

God Bless . Sounds like you guys are coming along,

Be well,

Hoffy

[fell]

Great news! Both of you are in my thoughts 🙏

[kimiD]

Sounds like things are looking up. Healing thoughts to both of you.

[pkpayne]

NMMP, Thanks for letting us know how Mark is doing. You must be doing a fantastic job of being his carer and I think most people only think about the person with cancer regardless of the type. When one family members gets it, it affects the rest of the family. Bless you for doing such a wonderful job. Best wishes for Mark’s continued improvement!