Possible refractory dlbcl

Hi  and welcome to our little corner of the Online Community, although I am sorry to see you finding us.

I am Mike Thehighlander and the first thing I can say Miguel, is your English is great as you should hear my Spanish.

You don’t not say what type of Stem Cell Transplant (SCT) you are looking at as there are two main types, for example I have been through 2 Allo SCTs with Stem Cells from my brother. Others have had an Auto SCT using their own Stem Cells and some folks have had both.

You can look at the various discussions by hitting the discussions tab and also by Giotto g our forum names you can see our stories like hitting my name Thehighlander

We are hear to help out and answer questions at any time.

I was diagnosed with a rare type of NHL that would not be able to go into remission.......fast forward to Sep 2016 I am in remission - that is SCT.

Hello Mike thehighlander i have read plenty of your post and you are such a nice perdón you are always trying people find well with themselves. I want to Thanks jhon r but i know he is not in the stem cell transplant group. 

I have already checked many of the discussions and i hope i would be one of those guys who hit this lymphoma. 

The auto transplant would be the main line of treatment if i am available to get in after r eshap. 

I will update the information as soon as i know. 

Best regards. 

Hi again Miguel, it’s good that you have found the Community a great help.

Yes, johnr does drop in past this groups as well so I am sure he will post some encouragement.

As you may know an Auto has far less complications than that of an Allo so let’s hope that the eshap does the job and gets you into remission  for Cell harvest can be done...... but if not there are other avenues to follow.

Not knowing the Spanish system - are you being treated at a top Cancer Centre where there is good experienced staff?

Always around to help and suppprt.

Spanish system is great althougt there were a cutout budget after 2008 crisis. The spanish system is public and i have the lucky to be assigned ay one of the Best GREGORIO MARAÑÓN which is implementing car - t. But only trial phase.

The doctors and nurse team is Amazing, however today my doctor seemed a But overwhelmed, instead of trying help me and my family. 

Anyway, if i have to day one word about public health spanish system. I would describe as universal and guaranted.

I think i am going to stop reading for a little time stories about asct and try to assimilate the whole information. 

I will pass for the foro during the days. Thanks everyone. And if i have updates i will let you know. 

Hi I will post this so you can see it when you return, did they show you the scan that showed partial remission as 6 rounds of rchop is usually effective as recent research has shown the is little difference in outcome when you compare patients who had 6 rounds with those who had 8 which is what I had. Is the any chance you could have a false positive results as a few of us have experienced that and is that why they want to do a second biopsy to double check you still have active disease?

The treatment they have said may be the way forward is standard and sometimes people have had R-ICE and a newer treatment are available but the ones that were around 10 years ago still seem to do a good job of killing off the disease.

Try not to worry to much about a stem cell transplant, auto transplants carry fewer risks than an allo where you get donor cells, doctors have done many transplants now and are well versed in the process and they have lots of knowledge or experience to draw on when needed. I have never had a transplant but know many who have and certainly with an auto transplant its the conditioning treatment like BEAM that seems to be the worst part, others may confirm my thoughts or correct them.

If you have any questions I am sure one of us will be able to help or steer you to an answer, here to help as and when you need it

john

Hi everyone 

Finally i will have to go through two more cycles of r eshap and do a pet scan. After that if i am in remission i am doing the autotrasplant.

I am a bit scared, not too much for the proccess but the outcome. My doctor says that if i am not respoding the chemo we will have a bit problem..

Cross finger, tomorrow i will start my second round against the monsteer, (first cycle of high dose chemo). 

Thanks to everyone who writes their journey here. I feel so identified, but at the end we need to keep Strong and move forward. I will update when i have news. 

Hi Miguel , thank you for the update and this sounds a positive plan.

I do understand your concerns about the outcome, but in reality what ever route you take it has to work....... I remember my team saying in late 2013 “this plan has to work as we are running out of tools in our box...” but now there are more tools that have been developed in these past 5-6 years.

As has been said, an Auto Stem Cell Transplant (SCT) is indeed far less full of problems due to the fact that your own cells are used.

An Autologous SCT (Auto) indeed needs you to be in remission window so your Stem Cells will be harvested.

You will often have a week of 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 frozen until it's time to use them. 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 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 will be in a ward with others or some SCT units have on-suite room 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 kids back in. You will be an inpatient for some of the time but this all depends on how fast the ’New You’ starts to grow.