Bone marrow biopsy every three months

Hi again Bequest as your partners has AML it’s unfortunately not that unusual to have regular BMBs post SCT….. due to the aggressiveness of AML.

I can’t see what type of SCT he had….. Auto (self) SCT or Allo (donor) SCT?…… as this sometimes makes a difference.

I had 2 Allo SCTs for my very rare type of NHL and had a few BMBs post both my Allo’s about 4 months apart as they were checking as I went into both my SCTs with active cells in my Bone Marrow

Hi again  Mike, thanks  for the quick reply!

Yes he had Allo SCT and has 100 percent chimerism so maybe it was just wishful thinking things would get less evasive...

I think now you've said this he had a very minute amount of cancer still in his cells too which is why they decided to do the transplant as the chemo didn't seem to be having the desired effect  I guess I'd forgotten that! 

He really hates the biopsies though- I'm sure no one likes them but it's just another thing... Anyway thanks for giving me a perspective that makes sense sometimes the doctors aren't so good at explaining things...

Hope you don't mind me asking do you still have biopsies now? 

No problem you asking ‘any’ questions as this is what the group is for.

Looking back my note books - yes I have note books going back over my 24 years my second Allo SCT was on 21 Oct 2015 and my last BMB was 21 September 2016 BMB

100 percent chimerism Is great…… it took  me to be 23 months post my second Allo SCT to be told my Whole Blood Lymphoid and Myeloid Lineages are 100% Donor - 100 percent chimerism.

I was discharged from seeing both my SCT and Heamatology consultants on 18 June 2018….. more or less 4 years after my first Allo SCT…..

I only now have my full bloods and obs done at my GP surgery in April each year and the results are sent to me and my SCT Late Effects Specialist nurse in Glasgow and we have a quick phone call.

This simple connection has been useful as it picked up that I was pre-diabetic so helped me change my lifestyle and after my heart attack back in April 2012 we had to change some of the long term meds I was on to allow me to have my heart meds…… in many ways SCT is the gift that keeps on giving.

Hi. I too suffered from a bone marrow cancer and I too hated the bone marrow biopsies as they were so painful and I had them every three months and I worried for days before having them. The further you get away from the sct the less frequent they become or they may even stop after a year. It all depends on how the doctor perceives the risk to you of the cancer coming back. If it were to reappear fore some reason with regular biopsies you would catch it quicker giving an earlier opportunity to deal with it. A bone marrow biopsy is the only really positive way to diagnose a bone marrow or blood cancer. A blood test can give you a bit of an idea if there is an issue but a bone marrow biopsy can confirm any doubts. I hope these come to an end soon for your partner.  The worst for me was when they tried a new drill to get the samples out and they did not get enough so they had to then go back in with the injection twice. That was extra painful.

Yes, that's how my partner feels, also it's hard to feel better when you have to worry about it so regularly, it sounds so painful too!

When did you both start feeling like life got back to some kind of reality or did everything just start feeling normal again?

Hi. Unfortunately I am still suffering with something called gvhd. It is a horrible disease which is a result of a stem cell transplant from another person (Allo) I was initially told by consultants I may get some gvhd but not told how bad it can be, and ideally they want all patients to get a bit to fight off the cancer if it comes back which is whole point of this transplant. My chronic gvhd symptoms started about 6 months after my transplant and I am now 2 years out and still have big issues with gvhd. Some gvhd issues have gone but others remain. Luckily some have very mild issues. GVHD is graft versus host disease. So life for me has not got back to reality yet and I also don’t feel anything but normal.  Sorry if this puts a damper on things I am just being realistic. I hope if your partner does get gvhd his symptoms are small. I believe Mike ie the highlander may have had some gvhd symptoms but think he may have recovered quicker. Read his profile as I think it tells his journey.

For me it took about 2 years to say that everything had settled down and my new normal had bedded and the SCT memories were starting to get fuzzy at the edges although coming on here and helping out does it allow the memories to all go.

Hi Mike,

Did you suffer much gvhd?

It's ok it kind of helps me feel less stressed hearing this if you know what I mean,

my partner has GVHD too it started acute but become chronic too, it's mainly his skin and mouth so they're keeping him on cyclosporine as well as two different steroids which don't seem to be working as efficiently as you would like... 

Yes I had GvHD of my skin and gut then at about 11 month post my SCT my bonemarrow went on strike due to the GvHD so it was not producing the bloods that I needed so had to have weekly transfusion for about 3-4 months then over night it all righted itself then it took a further 9 months for my cell count to reach 100% donor….. my story is in the link below.