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FormerMember
FormerMember
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Hello everyone,

My dad has received his bone marrow results today after his SCT and there is still the slightest trace of the cancer still there. He is only on day +42 and it’s rare for them to test so early on but he’s on a trial. So they’ve told us they will do another one around the day +100 as his new cells might need more time to attack the crappy cancer. 

I was curious if anyone else had experienced this? I feel upset but the Dr didn’t seem too worried. Did everyone else only get tested at the day +100 mark?? 

Help :-( xxx 

  • Hi again.

    Yes, the normal first test is at about day 100ish

    For me, it took until 23 months post my second Allo SCT before my Whole Blood Lymphoid and Myeloid Lineages were 100% Donor........ so yes, this is not unusual and actually shows the battle for supremacy is on.

    Keep your eye on the goal - this is very early days in the process ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Thank you, that’s really reassuring to hear. This fight was never going to be easy! You really really can never prepare yourself for the rollercoaster you go through!

    Now we just wait till the next set of results and pray the new cells do there thing!!! 

  • The waiting is hard but the battle can take time. I know a few folks who are years post SCT and have never had a 100% graft but are living a normal life in remission.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • ..... is he still on Cyclosporin (Immunosuppressants)?....... it’s normal for these to be slowly reduced from about day 100 but you should expect for the graft to drop during the following weeks.

    This was my post Allo timeline:

    Day 85 - 157 skin GvHD so Cyclosporin was continued and then slowly reduced

    Day 100 - BMB

    Day 117 - Hickman Out

    Day 196 - Cyclosporin stopped

    Day 281 - DLI (10 months)

    Day 284 (10 months) GvHD in bone marrow - Blood transfusions for three months

    (12 months) - Remission and NED (No Evident Disease)

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    This is so interesting to see!!

    He is still on the cyclosporin, they are thinking of reducing his current dosage at around day +60 I think as a way of helping get rid of the remaining cancer cells some how, maybe giving the new cells more of a chance to attack?! Although running the risk of GVHD cropping up...

    They are still waiting for a 3rd set of results from this BMB, which would show how much of my dads cells remain and how much is now the donors. The dr seemed to think this would give them a better idea as to if the cancer was just residual or perhaps new/what the chances are of him achieving complete remission...It’s all so clever! 

  • Up until month 23 post Allo my counts were steady between 50-60% in both lines then out of the blue jumped to 100%...... but I was told at month 13 that I was in remission - never understood this, but as you say, it’s all very clever.

    I had no GvHD following my first Allo and it failed within 6 months but my team were ‘happy’ to see me having some GvHD after number 2 as it showed my brothers cells were fighting for supremacy...... he is doing great and so are you.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    My dad hasn’t really had any GVHD, except for a slight rash and sickness at the beginning. If this doesn’t work as they had hoped, we have a reserve of the donors stem cells that they may use as a sort of “boost”.

    was your brothers cells used for both of your SCTs? 

  • Yes, my brother was my donor throughout. I had to have DLI boosts after both Allo's........ my team had to get him back to get some more cells for my Day 281 (10 months) DLI boost.

    There is a good chance that the rash could have been some GvHD....... sometimes it.s hard to pinpoint the real reasons.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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