angioimmunoblastic t cell lymphoma

Hi angioimmunoblastic and welcome to our corner of the Community but always sorry to see folks finding us.

I am Mike Thehighlander and I have been through two Allo Stem Cell Transplants (SCT) with Cells from my brother for another rare type of T-Cell.

I lived with my T-Cell for over 14 years before it became aggressive so I also had to go on a rather fast treatment journey........ I am over 4 years post my second SCT and still in remission from a condition that was diagnosed in 1999 and I was told back then that I would never see remission - so be encouraged........ what happens now?...... I live and enjoy life to the full........ but I am under no illusions that I may have to fight this again in the future but the further I get away from my SCT date the less likely this will happen

I could not have an Auto SCT as my team could not get me into the position of harvesting cancer free  cells so i just sent my big brother ;) 

We do actually have a dedicated Stem Cell Transplant Forum where everyone from various blood cancers support each other during the SCT rollercoaster..... so follow the link above, join the group and start a Discussion and introduce yourself to the group.

Remember and say where your husband is being treated, age etc as this helps folk reply.

So your questions

First my plan always had two Allo SCTs in the equation as the first one, if it worked would not be so hard on me but as it did not work we moved on to plan B.

This is my simple guide to Stem Cell Transplant:

The idea behind SCT is to give you husband an all new Immune System.

An Autologous SCT (Auto) is much less demanding than an Allo SCT as the body does not see the donour stem cells to be an attack on the body so the side effects tend to be much less a problem with an Auto.

An Auto SCT involves getting your husbands condition to a position where there is no cancer evident this is normally done by using very strong chemo........ this will be the ICE chemo...... then his Stem Cells will be harvested.

They will often give a week of simple tummy injections (once a day) to help the Bone Marrow make lots of Stem Cells.

Then on the day of harvesting the cells two lines are put into the arms - one out, one in. Its sort of like giving blood - the blood runs into a very clever machine that brrrrs the blood round and picks out what are called undifferentiated cells (these Stem Cells have not been given a job so this is before they turn into Red or White blood cells etc) and the blood returns through the line back into the blood stream.

The machine can pick out millions of cells over a 4-5 hours process. The harvest is on the whole painless, just a lot of sitting around.

The Stem Cells are then stored until it's time to use them. The method is called cryopreservation: it freezes stem cells at temperatures below -150oC, by immersing them in nitrogen vapour. When required, they are defrosted in a water bath and are put back into the body through a central line.

An Auto then requires what we call Conditioning to happen. This is done to take down the immune system completely. This is usually done using some more strong Chemo - but its only for a few days.

Once the Immune System is taken down they give the harvested Stem Cells back just like getting a blood transfusion.

The Stem Cells then go to the job centre in the Bone Marrow and ask for a job. This is the point where they become differentiated cells like Red and White blood cells...... and the all ’New You” starts as the body start to reboot the immune system and over time the blood counts come back up. Its all very cleaver, very science fiction but very do-able.

Due to the very specialised nature of a SCT it is often done in a dedicated SCT unit. It a very clean environment (Ward) in a hospital, you often get your own on-suite room but for an Auto he can be in a ward with others having SCT....... and yes you do get visitors (some people think they have to live in a bubble) as long as every one is healthy its no problem but some units will have rules about little children.

Remember you don’t have an immune system to fight bugs during this time so safety first, but SCT teams are very good at keeping everything under control until your new immune system kicks back in. He will be an inpatient for some of the time but this all depends on how fast the ’New You’ starts to grow.

If you hit my forum name Thehighlander you can see my story as you can with lots of folks in the SCT Forum.

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.

We are around to walk this with you.

Hello mike many thanks for your reply I wasn’t expecting so much information it’s lovely of you to take the time to write it all and in terms that we can understand too

I will join up on the SCT forum so thanks for this too. Your story gives us so much hope for the future, our consultants are absolutely wonderful but they seem to be very ‘closed doors’ on giving us information beyond what to expect for the next couple of months. I’m pretty sure this is due to how fast his treatment has been put into place and not wanting to overload us (he was diagnosed on a weds, had emergency mri on that Friday and receiving first round of chemo by the following weds) but then I worry that maybe there isn’t much of a future and that’s why they aren’t saying much. We’ve also had contradictions in what the future holds in that our nominated key-worker told my husband he would always have the disease and never be cured (when signing the chemo forms ticked the managed/palliative option, weeks later the consultant told him he was going to eradicate the disease and he would be cancer free. I know his particular strain of lymphoma is quite rare and so maybe there simply isn’t the information there to give us. But already by signing up to  and reading this forum we are realising that there are people out there with success stories, so feeling a lot calmer about it all

Hi again, yes it’s hard for consultants to give ‘clear’ information as there are so many variables but at its basic level SCT is used to find long term remission - the word cure has never been used in my hearing and as I said before - the reassuring thing is the longer you get away from the transplant date the more chance that this has worked for the long term....... mind you I was told if SCT did not work I had 30 months........ I am now 44 months past that date (not that I am counting lol) and loving every day.

I will keep an eye open for you on the SCT group.

hi again Mike, another question (sorry!) do you know if there is a difference between blood stem cell and bone marrow stem cell? As my husband was told he would be having a stem cell operation harvesting it from his hip bone, rather than from his blood? 

Hi again, never be sorry to ask questions - this is what the Community is all about.

Bone Marrow Stem Cells and Blood Stem Cells are exactly the same thing....... Stem Cells are made in the Bone Marrow and go into the blood stream.

99% of the time a Consultant often says Bone Marrow Transpalnt but actually mean Stem Cell Transplant........ but you do need to double check this with your team as Bone Marrow Transplants are not done very often now.

The Hip Bone thing may well be a Bone Marrow Biopsy where a doctor or nurse takes a small sample of bone marrow from the back of the hip bone. It’s sent to a laboratory to be checked for abnormal cells. A haematologist can tell which type of blood condition it is by looking closely at the cells and find out if the condition is in the Bone Marrow.

It can be very confusing so you do need to start keeping notes in a note book so you have clear info.

Keep your questions coming.

It’s such a mine field isn’t it! I will ask again when we go in for the form filling for the ICE, like I said I think they are only giving us the info we can handle and retain, which in my case isn’t alot, As I tend to get in a state and then nothing they say sinks in...good idea about a notepad tho  thanks again will be back with more questions soon I’m sure!

Hi again.

I actually think the more yo know the better it is to pigeonhole what this all looks like and most of all - plan to get through this.

Could I recommend that you prepare for your next appointment with his team by getting a family note book. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get.

If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember to record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.

I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.

Questions:

Stem Cell Transplant or Bone Marrow Transplant?

Bone Marrow Biopsy?

Type Conditioning Chemo (Name) will they used to take down your immune system as there are lots 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?

Has he had pre-SCT medical tests?

He has just finished his last round of CHOP on Friday just gone. He has 2 rounds of ICE which he is due to go in for the 1st one on New Year’s Eve and he has been told he will be an inpatient for 3-4days for this, I believe these are the same time wise as CHOP, 3 week cycles. There on the info becomes rather vague in terms of time, stem cell follows, when I asked about the time scale they simply said it would follow straight away once his cell count was good enough so I imagine it would be 3 weeks after the 2nd ICE. He has to go to one hospital to have the treatment and and then be transferred to another hospital to go into a filtered air room for 4+ weeks. that’s literally all we know as far as treatment goes. The Pre-sct medical tests I think we aren’t quite there yet, he’s got a pet ct scan due just before Xmas (has had since end sept 2x mri and 2x pet ct scans) I think there more for monitoring a mass on his spine which thankfully is responding to treatment, not the sct. Oh and he’s had spinal fluid tested as well.

All sounds much like my journey 6 years back as I was in over New Year.

It is normal to have the treatments like ICE in a different hospital from the actual SCT Unit - for me it was Inverness then down to Glasgow for 4 weeks for my first SCT then 7 weeks for my second. Timings will be very fluid so do expect things to change at the drop of a hat.

I would expect he will have to go through a series of tests and examinations to include:

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 live

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 the liver and kidneys are working and to have data to enable accurate post Stem Cell Transplant tests to be completed to check on transplant engraphment.

I had 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.

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

I think it would be good for you to set up a thread in the Stem Cell Transplant Forum as this will allow you to get support from more folks who have been through this ((hugs))

Ok thanks again I’ve signed onto the sct forum