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CLL Support Association
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Road to a BMT... oops just got there (Day +101)

Yesterday was another huge milestone on our BMT road, Day 100 - when we stared back in Nov.2017 this day seemed like a life time away.

I’m so pleased to share with you that Mark has continued to progress very well and blood counts are normal and steady. The results of his bone marrow biopsy at Day 60 were overwhelming as there was 0% of CLL present - we are cautiously optimistic as we know the road is still long.

Mark is also really enjoying not having to take any treatment/meds for the cancer and has really noticed a bit of the “chemo brain” or “fog” being lifted. He is slowly starting to go out a little more which is helping him to feel less isolated.

Again I thank you for your time, love, encouragement and your tremendous support.

The reason we decided to post was to hopefully offer hope for those who sometimes feel there are no other options left for them. The decision for us to go for BMT was a 7 year process. In reading about our experience we hope we could alleviate some fears in helping others who will be faced with the same decision.

Our Hematologist presented it at the very start because Mark was young at 45. And we were very set against it - however it became our last option and the decision was made for us, his 2nd relapse was very aggressive and he was already showing signs of failing on venetoclax after a few short months.

It has been very tough on both sides - when I post it is from a CarePartner’s point of view which we understand is a very different experience then the patients. And having the right support is so important and this HealthUnlocked community is certainly part of my circle of support - CarePartner’s are special people.

Thank you,

NMMP

24 Replies
oldestnewest

Fabulous news! Enjoy 🙌🎇🎊

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You two bring much hope. 🥂

Jeff

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Such great news! Congrats to both of you! :)

kim

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Wonderful news!

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So glad to hear this news, NMMP. Thank you for sharing!

Wishing all the best to Mark (and you) for the next 100 days and onwards! :-)

Paula

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I am so happy to hear this news. I am 43 so BMT is something I may need in the future. I appreciate you sharing Mark’s amazing progress. 🙂

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My husband is at day +18 today so it is really encouraging to hear what day +101 looks like. Gives us hope!

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Fantastic news!! So happy for you both!!

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Great news. On to Marks first rebirthday! The experience of caregivers is very different from that of patients. I think their role is harder - sometimes because they are trying to process all of the medical information while also figuring out the emotional and physical needs of the patient. Looking forward to more positive updates!

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Always good to hear of good treatment outcomes, glad it's all going so well, Terry

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Great news for you both.

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That is awesome news congratulations to you both all the best

Chris

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Wonderful news. Thank you so much for sharing! My doctor has said that BMT will likely be the treatment path for me due to high-risk markers, so hearing from those who have gone through the process is very important to me.

I hope that the news you receive in the future will all be that the CLL is gone for good, and that the treatment "fog" dissipates to a bright and happy long life together for you both.

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Thanks for posting this as I have discussed this with my consultant I'm on ibrutinib 1st treatment and it is his hope that this will be my best option as I'm only 50 but that if all else fails then BMT would still be an option for me so this is very encouraging

All the best

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Could not be happier for you and Mark!!

Nick

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Thanks for taking the time to post this update and share your good news. Wishing you both all the very best.

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Fantastic news! So glad you are posting this to share!

Paula

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Excellent news, congratulations on the progress to date. Please share more as and when time allows. Good news always welcome.

best, rob

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keeping you in my thoughts - great day 100 result!

bless the donors out there...

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Excellent news. BMT suggested by dr as next line of treatment if current one fails. Good to hear about someone who has gone through it. Thank you

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was it allogenic or autologous (?Spelling)?

Hugs to you both,

Dianne

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Hi Ladydi49,

Yes it wan allogeneic transplant and we were fortunate enough to get a 10 out of 10 match.

Appreciate the support :).

Thank you,

NMMP

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That's fantastic! If I may ask, was the BMT expensive?

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you can ask us anything :) - we live in Toronto, Canada and the BMT is covered under our HealthCare.

NMMP

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