Post SCT.

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Hi All,I'm 1 month post allo SCT which went well all things considered, fatigue is the biggie as it's so hard to gauge not over doing things when you feel well but then paying the price with intense leg pain the following day.

How ever Thursday I've been hit by a curve ball by my excellent consultant. I'm to have 2 more cycles of chemo including the dreaded DEX.I really thought I was done with chemo as there was no mention of it apart from maintenance therapy of thalidomide and zometa.2 months of this is really not very appealing but needs must as they say and I'm really not doubting my team but wish I'd been pre warned . So I guess my question is, is this a common thing post SCT ?

John 

  • Hi John  and welcome over to our little corner of the community.

    I see that you have Myeloma so very different to my Non Hodgkin’s Lymphoma and we have only had a few folks come through the group who had Myeloma.

    I have been helping out on this group for over 5 years now and as far as I can remember I have not heard of folks having more chemo so quick after their Allo SCT.

    A few people have had their Allo SCT fail so had to go back on treatment. In my case my graft failed within 6 months so I went back on treatment then had a second Allo SCT 10 months later (hit my community name for my story) and I am now coming up to 6 years out.

    Yes many have treatments for GvHD, Donor Lymphocyte Infusions (DLIs) follow up/ maintenance treatments but I have not seen anyone say chemo.

    When you say your ‘excellent consultant’ is this your Haematologist or SCT consultant?…… I just ask this to raise the question is your two teams talking with each other.

    I am sure that your clinical team know exactly what they are doing but my logical mind is thinking what does more chemo so early on do to your new immune system?

    Keep asking your team to explain this more…. always around to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Exactly Mike, I'm dumstruck  and should of asked more on Thursday whilst there but think it overwhelmed me so will have to bring this up beforehand. 

    My hematology consultant has run all of my treatments and said the chemo is part of the complete package with 6 cycles, 4 before and 2 after SCT..

  • Worth a call to get some clear information as this will help you get your head round it better.

    The question I would be asking is if we use chemo as our conditioning to take our immune system down and jet wash our bonemarrow what will this ‘chemo’ do to your new graft.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike,I've just noticed I put allo instead of auto SCT.Would you know if this makes a difference to the chemotherapy course post SCT as I dont speak to my consultant until Thursday. Thanks 

  • Hi, I actually don’t know. An Auto SCT is rather different as the Stem Cells you received are your own so it’s not like the chemo would be attacking a ‘stranger in the house’ that the body see donor Sten Cells during an Allo SCT Thinking

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike, 

                 Just an update after seeing my consultant on Thursday. I'll be receiving 2 full cycles of DVDT and then lenelomide for as long as my body can take it plus the zometa starts back up again. 

    This course of treatment gives a much deeper response after a auto SCT and is patient specific and what I can gather from patients in the blood cancer uk forum is a rather new line of attack after week 7.So all in all I think I'm rather lucky and counting my blessings again even after the effects of the DeX kicking in as we speak.

    John 

  • Hi John, a plan is a plan in my book and let’s look for it to do the job.

    I have seen so many new developments over the years across the Blood Cancers with a number specific for post SCT.

    Back in late 2015 when I had my second Allo SCT I was told that if this failed there were no other treatments in the tool box with only route being palliative care…… 7 years on there are two new treatments I can have if required and that is me with a rare Lymphoma.

    Keep us updated.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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