Primary refractory dbcl

Hi again Katherine and welcome to our little corner of the Community.

As I said before, for me, an Allo Stem Cell Transplant (with cells from my brother) was always part of my treatment plan as no treatment would get me completely into remission........ I want go into my story as you can see it by hitting my Community name.

We also have this thread SCT Success Stories that would be worth having a look at.

We have had lots and lots of folks pass through the group over the years, they all started where you are right now and over time moved through the various parts of the SCT journey...... most will say that they have no regrets and have moved on with life. 

Very important to get all your questions answers when you see the SCT team for the first time.

So the first question to ask at this meeting is what type of SCT are they looking at - an Auto SCT using your own Stem Cells or an Allo SCT using donor Stem Cells.

What would your Conditioning be like - Conditioning treatment is used to kill off your immune system before you get the Stem Cells, there are lots of types of Conditioning so we can hopefully help you on that one.

Your Transplant Co-ordinator should be at the meeting, if not ask to meet them or at least their contact details as they will become your all new best friend.

Ask to see the SCT unit as this can help turn the stress levels down as it is just another hospital ward... but a very clean ward....... but you would think all hospitals would be like this ;)

You could ask about the time table they are working to?

If you have not had your pre-SCT medical tests (list below) ask if you have to have any tests done before the process starts.

..... and make sure you have someone with you as they can pick up lots of stuff that you will miss and they will also understand why you are apprehensive......... and take a note book to help get some understanding of what they are saying.

Pre-SCT tests

An electrocardiograph (ECG) to check your heart's rhythm and electrical activity

An echocardiogram scan used to look at your heart and nearby blood vessels

An X-Ray or CT to check the condition of your organs such as the lungs and liver

A very detailed Lung Function test to check your lung function and lung capacity

A dental examination including x-ray's to check for any hidden mouth problems as the Stem Cell Transplant process can develop severe gum and mouth issues with bad ulceration. If major dental treatments are required this may delay or even make the Stem Cell Transplant not an option.

Blood tests will be done to check your levels of blood cells, to assess how well your liver and kidneys are working. For an Allo SCT data will be collected to enable accurate post Stem Cell Transplant Chimerism tests to be completed to check on transplant engraphment.

You may have a meeting with a Phycologist as the Stem Cell Transplant process can be a hard phycological journey so we want to make sure you understand what you are letting yourself in for.

You may also meet with a Financial Advisor as the Stem Cell Transplant process may have a long effect on your ability to work.

Hi Katherine/

and a warm welcome to this corner of the site, though so sorry you’ve needed to hunt this group out.

Are they thinking about an autologous (own cells) transplant or an allogeneic (donor) one? 

many thoughts suggest you should be in a full remission prior to harvesting your own cells to ensure nothing escapes to begin the process again.....

Yes the chemo involved in the SCT process is tough but doesn’t last anywhere near as long as the months you’ve probably already been through. 

An auto (for short) doesn’t involve any anti rejection or graft versus host problems so is hard but relatively straightforward. Whereas al allo (for short) does tend to be a bit trickier with levels of drugs to be taken, balanced carefully.

but teams these days are really very experienced and you should find yourself being looked after by experts.

where will you be treated? I hope in a cancer centre rather than a general hospital?

keep posting and asking whatever you need, there are a few who have been through it as patients, I’m here as a carer whose daughter went through both types of SCT.

hugs xxx

Thank you lots to think about and ask when I have my initial meeting at the Royal Marsden.

Hi as far as I’m aware it’s likely to be an autologous transplant but there’s also mention of CAR-T therapy. I’m likely to be treated at the Royal Marsden (I’m down on the south coast). I’m sorry to hear about your daughter must have been very tough for all of you. I have an almost 20 year old and 3 younger children of 8, 6 and 4 I’m just worried about how we’ll all cope as obviously life goes on for them with school, nursery etc .

Hi Catherine replying here rather than your other thread, re the fnhl, I know a good number who have had to have auto transplants for their fnhl and years on are still in remission some beyond 20 years, so it is possible the transplant could kick both into touch, lets hope it does.

The are also more now having CAR-T in the UK for dlbc, so see how the chat goes and see what the options and recommendations are.

John 

hi again Katherine,

the Marsden has a great reputation, you’ll be well looked after there. Car-T is relatively new but seems pretty successful. Cancer treatment is leaping along fast, there are now many more treatments even for daughters Hodgkin’s than there were when she was in active treatment. (She’s in remission now and has been since her allo in 2011).

Your children will cope, kids are surprisingly resilient provided they understand. But it will be worthwhile talking to schools, nursery etc just so staff are aware should they be upset for any reason. 

Hugs xxx

Hi , it seems we might be on a similar journey and I was wondering how you are getting on?  I had two cycles of GDP-R which I think was what they gave you.  My kidneys complained about the Cisplatin so they gave me something less toxic on second cycle.  I am booked in for a PET scan on Monday to compare to the one in February when I discovered a lump on my lower back after only 6 months being clear after RHOP.  If all OK then move on with SCT which in current climate  terrifies me!  If still evidence of disease I am not sure what they will do - if anyone has an idea please let me know?!

I am finding this much harder than RHOP last year and at times is a struggle to keep seeing positives.

Mike

Hi Mike

I’ve had a consultation at the Royal Marsden I’ll be having my stem cell in Sutton. After 2 cycles of GDP they pet scanned me and decided I should have at least one more cycle but I was responding. I had my latest pet scan  last Thursday so awaiting results. They have said I may have some radiotherapy in the meantime so as not to obliterate my immune system further. In terms of stem cell I understand some have been put off so I think treatment is likely to be delayed.

I found it hard to cope with initially but I have to be positive for my husband and children however the gp has put me on antidepressants which definitely help my mood to stay on an even keel. I found gdp much tougher than RCHOP as it has made me much more fatigued.

 I hope that helps stay positive the Marsden is excellent if that’s where you’ll be and their aim is to cure.

Katherine 

Hi Katherine,

That is good to hear and fingers crossed going forward.  It does seem we are following a very similar path and trying to stay positive is key.  Glad it wasn't just me finding the GDP hard - my list of tasks in lockdown hasn't been tackled yet due to fatigue!

Take care and please do keep us updated as to how you are getting on.

Mike

Hi everyone, good to hear some progress is being made, but this is often 2 steps forward and one back - but still progress.

SCT Units are most likely the safest wards in a Hospital due to the treatments used that kill the immune system so be reassured that you will be in safe hands.

This is a good thread that @moomy started a few years back Checklist for SCT Unit.

If any of your find out that you are having Melphalan as part of your final conditioning before receiving your Stem Cells have a read as THIS information is rather important.

Remember we are here to help as best as we can.