Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
My para protein levels have come down to 3 on cycle 3 so it looks like one more cycle then I get the SCT in early Jan. Just looking for advice/reassurance from anyone on the SCT process and roughly what to expect.
I'm told a high dose chemo for 10 days is first, followed by the harvesting of stem cells then the SCT in hospital. Apparently I self inject on the 10 days of high dose chemo from home, what's that like?
As ever any guidance much appreciated.
Hi ddaw73 and welcome to our sorner of the Community, I see you posted in the Myeloma groups as well so I am sure they will get back to you.
You can actually look at some of the group members stories by hitting our forum names and if you hit the Discussion tab it will give you a list of all the topics that have been covered..... so lots to look at.
I had two Allo SCT with cells from my brother as I could not be put in the position for cell harvest. My first Allo went past with no real drama but it did not work, the second, although was very hard work did get me into Remission from a condition I was told back in 1999 I would never see Remission from - so from me, SCT has saved my life.
My brother said the harvest was no real problem just a lot of sitting around for hours as the machine did its job.
Haven't heard of anyone doing a 10 day self injection of chemo before harvest but lets see.
You will then most likely get some more conditioning (chemo) when in hospital to kill of your immune system before you get your sells back then its all about waiting for the 'all new you' to grow.
Have your team told you the names of any of the chemo or conditioning chemo that will be used?
What hospital are you have this all done in?
THIS is a good thread where folks have put some info about their SCT journeys.
I will bump a few of the threads so they will come up on the feed - just make sure you have your email notifications switched on.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thanks for the reply thehighlander, makes me feel better already.
I've had my initial chemo at the Chiltern Hospital but I'm being harvested at John Radcliff in Oxford and then the SCT at Stoke Mandeville.
I've added some basic details onto my profile.
Welcome on the SCT Magical Mystery Tour..... Magical as to what they can do....... for me a Mystery as to how it works......... and a Tour as you have to expect the unexpected.
Always around to answer questions.
and another welcome to the SCT thread. A SCT is rather more of a complex procedure than ‘just’ plain chemo so I asked Admin to start a group for this. it sounds as if you’re going to be faced with an auto (autologous or your own cells) transplant. They do like to see you in a good remission before harvesting the cells, and like Mike, I think 10 days is a hefty amount of time to be doing those jabs. In any case, doing them does cause a bit of bone pain, and the American haematologists suggest using a specific antihistamine, Clarytin, (generic name Loratidine, lots cheaper!) the day before you start. It’s a one a day tablet and together with regular paracetamol, will help.
any questions? Do keep asking as many on here have been through it and will help, I’m the carer of a lass who went through both types of transplant (and is still around!) so saw it from afar, so to speak.
Thanks Moomy, all good information.
I have one more cycle of Velcade/Lenalidomide/Dexamethasone to go then I will embark on the SCT journey. Yes they are planning to use my own cells so it will be autologous. All I know so far is that a week after my last cycle (I've only had 3 cycles so far, and I'm on week 2 of that) I start high dose chemo for 10 days before the harvesting date. I'm waiting on the specific details of that but the consultant did say I would be self injecting during the 10 days. I guess my biggest question's are one's that may be different for everyone, What state do I come home from hospital after the SCT? What's a realistic recovery time for a 57 year old to be back working full time and relatively fit again?
The other unknown for me are what is the medicine regimen after SCT? I don't want to take anything to be honest but I realise there will be some stuff I need to take for a while (maybe forever?)
Really appreciate your support x
I am still confused about the 10 days self injection chemo?......... my brother had to do 10 days of G CSF Injections to get his Bonemarrow working overtime to produce far more Stem Cells then it would normally do in preparation for harvesting day. I would actually call your Transplant Coordinator and confirm with them that you are getting 10 days of chemo.
I was 58 then 59 during my two SCTs.
The state you come home in would be a wild guess........ from walking out the door as though not much has happened - this was me after my first Allo SCT to being in a wheel chair then walking sticks for 3-4 months - this was me after my second Allo SCT......... its the great unknown.......... but it all passes.
I have heard it said by a number of folks on this community to right off the first 6 months post SCT and if this time gets shorter then great.
For some, the infection risks can be rather long as it can take time for your 'All New' immune system to grow and on average you can expect two hospital admissions with infections in the first year post SCT.........but not everyone.
As you are having an Auto SCT your post SCT will be much less medication involved than those going through an Allo. Allo's requires them to take Immunosuppressants for at least 100 day, these things are disgusting but are necasery as the body toys till kill off the donor cells.
You may be on an Antibiotic for a period of time - I am one one for life.
This thread will give you an idea as to some of the challenges some have faced in post SCT life Life after a SCT - A Survivor's Guide
You do have to expect the unexpected but remember you team will have seen this all before and can deal with anythign that comes along.
Keep your questions coming and remember you can see our full stories by hitting out forum names ((hugs))
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